Technology-enhanced Transitional Palliative Care for Family Caregivers in Rural Settings
Phase: NA
Conditions: Palliative Care
Sponsor: Mayo Clinic

 
 
Technology-enhanced Transitional Palliative 
Care for Family Caregivers in Rural Settings 
 
NCT03339271 
 
1/18/2022 

IRB approval = 1/18/2022 
SPECIFIC AIMS 
Family caregivers (FCGs) provide an estimated $470 billion in caregiving services annually4; a 
statistic that the United States (US) healthcare system can no longer afford to ignore. Caregiving 
for palliative care patients frequently requires a commitment equivalent to full-time employment, 
frequently causing caregiver burden, depression, and decreased coping skills and quality of life.5,6 
Often, FCGs are confronted by numerous challenges such as inadequate caregiving knowledge 
and skills, limited support, their own poor health, demanding family circumstances, and limited 
time for themselves when caring for individuals with life-limiting illnesses.7 Although FCGs may 
have substantial personal health needs equal to or greater than the patients’ needs,8 the FCGs’ 
needs have received limited attention despite the challenges they face.9 The needs of the FCGs 
must be addressed in order to maintain their own health, thus allowing them to continue to provide 
the best care to their loved ones in the home setting, or the healthcare system will absorb the 
resulting costs due to emergency department visits and hospitalizations.10-13 
Transitioning care from hospital to home, especially in rural areas,14 is fraught with the risk of 
adverse events, and poor continuity of care.15-17 Despite the fact that transitions often require 
extensive FCG responsibilities, little attention is paid to meeting the FCGs’ needs and providing 
support during the transition.18,19 It is within this realm of new responsibilities where FCGs 
experience not only a transition to a new palliative care approach but also the transition of care 
across settings and among providers. Our proposed study expands the body of knowledge 
regarding methods to address the needs of FCGs in transitioning palliative care from the hospital 
to homes in rural, medically underserved areas. 
The use of health information technology (HIT) to provide healthcare at a distance has been 
described as the single most important way to equalize the differences between rural and urban 
settings.20 Our pilot study indicated that a new model of transitional care using existing, readily 
available, video-visit technology is a successful way to communicate with and continue to support 
FCGs of palliative care patients living in rural areas.21,22 Given these promising results and the 
significant needs of the FCGs in their challenging role of caring for loved ones with life-limiting 
illnesses, it is critically important that these preliminary findings now be examined in a clinical trial 
that tests extending transitional care, through the use of video visits. Moreover, reliable 
assessments of the monetary and time contributions of the FCGs while providing palliative care to 
their loved ones are lacking due to multiple challenges including the fact that such costs are 
difficult to obtain and need to be assessed in a prospectively designed randomized control trial to 
be reliable.1,23 Therefore, the purpose of this study is to evaluate a novel, nurse-led, technology-
enhanced, theory-based24 care model of transitional palliative care (TPC) for FCGs living in rural, 
medically underserved areas. The TPC model for FCGs is individualized to improve continuity of 
care based on evidence-based transitional and palliative care principles by providing ongoing FCG 
support, enhancing FCGs’ knowledge and skills while attending to FCGs’ own health needs. We 
will test the efficacy of this new care model with the following specific aims: 
Aim 1: To evaluate the effect of technology-enhanced TPC for FCGs on caregiving 
preparedness, communication with clinicians, and satisfaction with care for FCGs as the 
care recipient moves from hospital care to home. We hypothesize that FCGs randomized to the 
intervention will report increased preparedness for caregiving, improved communication with 
clinicians, and greater satisfaction with care during the study enrollment period compared to FCGs 
randomized to usual care. 
Aim 2: To evaluate the effect of technology-enhanced TPC for FCGs’ on quality of life, 
burden, coping skills, and depression. We hypothesize that FCGs in the intervention group will 
report increased quality of life and coping and decreased depression and burden during the study 
enrollment period compared to FCGs randomized to usual care. 
Aim 3: To examine the effect of technology-enhanced TPC for FCGs on healthcare costs. 
Recognizing the synergy between FCGs and care recipients, we hypothesize that costs from all 
stakeholders (FCGs, care recipients, and health systems) of providing palliative care to care 
recipients in the intervention group will decrease compared to usual care. Using the Ambulatory 
and Home Care Record (AHCR), which is rooted in the societal perspective,1,25 we will measure all 
costs of care for the FCG and care recipient, irrespective of payer.26,27 We hypothesize that there 
will be a net decrease in costs for 6 months post-enrollment from a societal perspective following 

the addition of a TPC for FCG in the intervention group compared to the costs of care for the FCG 
and care recipient in the usual care group. 
This revised application is responsive to FOA PAR-16-250: examining an innovative model of 
TPC for FCGs in underserved rural areas to address the public health imperative based on the 
rapid growth in the need for palliative care services.28 Our study is designed to extend transitional 
and palliative care science to contribute to the 2016 strategic plan priority of the National Institute 
of Nursing Research of exploring novel approaches for effective interventions to provide 
compassionate support to FCGs of patients with life-limiting illnesses. 
 
RESEARCH STRATEGY 
A. SIGNIFICANCE 
The AARP Public Policy Institute’s recent report on family caregiving asserts that caregiving is 
“more complex, costly, stressful, and demanding than at any time in human history.”4 In an effort 
to reverse that trend, we propose a nurse-led, team-based, technology-enhanced transitional care 
intervention focused on family caregivers (FCGs) of rural palliative care patients. Specifically, we 
wish to address a significant knowledge gap regarding the needs of FCGs as they transition 
palliative care from the hospital to homes in rural, medically underserved areas. The proposed 
study is significant because it integrates three proven approaches – transitional care, palliative 
care, and health information technology (HIT) to meet the needs of FCGs of patients with life-
limiting illnesses. The proposed study is also significant because it will address the rapidly 
increasing need for palliative care services and the critical need for transitional care services to 
medically underserved rural areas. Further, the emerging recognition of the importance of FCGs in 
successful care transitions and palliative care demands specific attention to their own risk for 
impaired health and poor quality of life, in order to minimize depression and burden experienced 
by FCGs.6,29 Our proposed study addresses a significant need for FCGs as well as a significant 
knowledge gap for the 40 million caregivers in the United States (US),4 particularly during 
transitions of care from hospital to home. Our study will advance the science of both 
transitional and palliative care. 
 
Importance of the FCG in Effective Palliative Care 
Palliative care is patient- and family-centered care that optimizes quality of life by anticipating, 
preventing, and treating suffering in patients with serious, complex illnesses.30 A key feature of 
palliative care, and of this study, is that patients, families, and care providers collaborate and 
communicate about care needs. Palliative care clinicians provide compassionate care to support 
not only patients but also their often exhausted, overwhelmed FCGs.31,32 Compelling evidence 
indicates that palliative care improves patients’ quality of life and satisfaction of care, while 
reducing pain, depression, and health services utilization,33-35 especially with early interventions 
that include improving communication with clinicians and providing emotional support.36 Indeed, a 
landmark study demonstrated that early palliative care not only improved metastatic lung cancer 
patients’ quality of life and mood but also indicated better survival rates.31,37 Furthermore, 
interventions that focus on the FCG to improve knowledge, confidence, and preparedness for 
caregiving, in turn, improve patient outcomes related to pain and control of other symptoms.38-45 In 
contrast, distressed FCGs have an adverse influence on the well-being of patients with life-limiting 
illnesses.46-49 
 
Limited Palliative Care Services 
Although palliative care services are rapidly expanding, specialized practice is still concentrated 
in urban medical centers. However, evidence from emerging community-based palliative care 
programs demonstrates improved patient satisfaction, with patients more likely to die at home, and 
fewer hospitalizations and emergency department (ED) visits, resulting in lower costs of care.50,51 
Unfortunately, the introduction of palliative care services is often delayed until patients are 
admitted to the hospital for a medical crisis, thereby shortening the time available for patients and 
families to receive the full benefits of palliative care services,9 as well as limiting the time for 
transition planning. Poor transitions of care continue to exist due to fragmented and silo-driven 
systems of care,10,52 thus limiting transitional care across geographic distances for palliative care 
patients and their families, particularly those who dwell in rural areas. 
 

Limited Transitional Care Services to Rural Settings 
It is nationally recognized that transitions across care settings are fraught with high risk for 
poor quality of care and adverse events.53-58 An effective approach to improving the quality of 
care and mitigating the risk is to provide continuing care across care settings by an advanced 
practice nurse (APN). The APN interacts directly with patients/families, both in the hospital and in 
the home, to promote care transitions from acute care to community-based care, assuring that 
continuing care needs are met.59-64 Transitional care, defined as services designed to promote 
safe and timely movement of patients between levels of healthcare, healthcare practitioners and 
settings,54,65 has consistently demonstrated improved quality and satisfaction with care, and 
reductions in hospital readmissions and healthcare costs.66,67 This direct service care delivery 
model is not viable, however, for patients and FCGs, discharged from urban medical centers who 
return to their homes in distant, rural locations. Further, there is a marked absence of 
transitional care models that address the needs of rural palliative care patients and FCGs 
who transition care from the hospital to home. 
 
 
The combination of limited palliative and transitional care resources results in limited 
transitional palliative care (TPC) available to persons with serious, life-limiting illnesses living 
in rural areas. Patients travel to urban areas for treatment and nurses travel from an urban 
medical center to patients’ rural homes – both are burdensome in terms of time and cost, making 
the provision and evaluation of transitioning health services to palliative care in rural settings of 
critical importance.68,69 In addition, there is a disproportionate and growing population of older 
adults in rural communities. For example, in Minnesota, 30% of the state’s residents live in rural 
communities, yet 41% of rural residents are over age 65, which has significant implications for 
healthcare services.70 The use of HIT may help fill this gap. 
 
Health Information Technology 
Defined as the use of technology and communication systems to provide healthcare at a distance, 
HIT has developed with the advance of information and telecommunications resulting in easier to 
use technologies with lower costs.71 Furthermore, HIT-focused healthcare system redesign is 
transforming the delivery of care for patients with serious health conditions,72 resulting in improved 
outcomes and decreased healthcare utilization.73 Supporting rural healthcare for decades,74,75 HIT 
has been used to inform, educate, and support FCGs to improve knowledge, competence, and 
overall ability to care for their loved ones through web- and telephone-based telemetry/remote 
monitoring.76,77 Video technology has been used to enhance case management interventions such 
as health education, medication management, assessment, and monitoring at lower costs than 
traditional home delivered services, although evaluation of the effectiveness of care delivered to 
the home via interactive video is limited.78,79 Direct-to-consumer use of video conferencing HIT is 
relatively new80 and, unfortunately, current transitional care models do not use video 
interactions to directly connect the clinician to the patient and FCG at home – relying instead on 
person-to-person and telephone interactions. Optimizing the use of HIT requires the development 
of models of care that capitalize on clinicians’ strengths, patients’ and families’ capabilities, and 
the features of the technology.81 Indeed, the benefits of video conferencing add dimensions to 
caring through access to visual cues that result in increased patient/family and nurse rapport and 
increased knowledge and social support.82-85 The proposed study extends direct-to-consumer 
video conferencing within a novel care model that includes transitional care to FCGs and their 
care recipients with life limiting illnesses living in rural areas. 
 
Importance of the Family Caregiver in Effective Care Transitions 
The importance of FCGs in transitioning patient care across settings cannot be overstated. 
Individuals most at risk for hospital readmission or ED visits are often too sick or cognitively 
impaired to self-manage their care.86 Hence, the FCGs play an instrumental role in ensuring the 
successful implementation of the care recipient’s post-acute plans of care by assisting in symptom 
control through managing medications, coordinating follow-up visits, and anticipating and 
sequencing care.18,87 Recognizing the critical contribution of FCGs requires that their needs be 
addressed separately from the patients’ needs and included in a plan of care.88 Although the 
importance of FCGs for palliative care patients is well-documented,41,89-91 interventions focused on 
FCGs in transitional care models are limited.18,87,92,93 Moreover, the financial contributions of the 
FCGs in general, and FCGs in the transitional care setting in particular, have not been 

comprehensively evaluated.1 Evidence documents that FCGs need more education to develop the 
requisite knowledge and skills, including optimal communication with clinicians, advance care 
planning, preparation for caregiving, and personal support.94 A recent addition to the Project RED 
(Re-Engineered Discharge) highlights an important facet of FCGs in the transition period – that of 
integrating the unique needs of FCGs into the discharge planning for the patient.86 
 
Summary 
This study proposes a novel technology-enhanced video intervention to support FCGs in the 
transition of their loved ones from hospital to home, based on FCGs’ unique needs rather than as 
an adjunct to patients’ needs. Although palliative care principles promote the unit of care to be 
the patient and family,28,95 the emerging literature, recognizing the profound physical, emotional, 
social, and financial impact of caring for a loved one with a life-limiting illness in the home 
environment, has led to a call for increased support for the FCG transition experience.96 Our 
proposed care model draws from existing strategies shown to positively influence FCG outcomes 
in home-based palliative care practices,7,8,89,94,97-105 caregivers of patients with cancer,9,41,90,106-108 
and transitional care models, and forms in a new way the basis of the experimental 
intervention.18,86,87 Few, if any, studies have utilized HIT (video visits) in a transitional care 
model to address the needs of rural FCGs of palliative care patients as they transition from 
urban medical centers to their homes in underserved areas; nor have they evaluated the 
net savings in cost from a societal perspective. Coded data will be shared with Duke 
University. 
 
INNOVATION   
National experts have called for developing strategies for transitional care for new populations 
such as FCGs of palliative care patients.109,110 The proposed research is innovative because it 
represents a substantive departure from current transitional care approaches that are limited to in-
person interactions between a clinician and patient in both the hospital and home. Our care model 
advances an individualized approach to extending palliative care and provides transitional support 
for families in rural, underserved areas using HIT. The proposed study is the first known study to 
do so.  
 
The use of HIT in community-based settings such as homecare and hospice have been well 
received by patients, family members (especially FCGs), and clinicians.83,84,111-115 We will make 
use of video visits as a unique means to facilitate TPC across settings. This use of HIT and 
communication systems to provide healthcare at a distance has developed with the advance of 
information and telecommunications, resulting in lower costs and easier to use technologies,71 and 
has been described as the single most important way to equalize the differences in resource 
availability between rural and urban areas.20 
 
Another innovation of this application is the comprehensive assessment of the true financial 
burden borne by FCGs – a topic that has been recognized as a critical gap in the literature.1 We 
will measure utilization and costs associated with TPC from a societal perspective, which will 
capture costs borne by the FCG, patient, employer, and health system irrespective of payers.1,25 
Therefore, our study will help define the value, types, and sources of resources used in providing 
palliative care, including the out-of-pocket costs for medications, supplies, care providers, travel 
expenses, and forgone time (time costs) for FCGs.1,25,116 
 
Potential Impact 
Rural America comprises over 97% of the total US land mass and contains approximately a 
quarter of the total US population.117 The findings from our proposed study will advance TPC 
strategies for FCGs of rural palliative care patients, and provide evidence of an effective care 
model to support continuity of in-home care for the FCGs of patients with life-limiting conditions. It 
is expected that providing TPC for FCGs of palliative care patients in underserved, rural areas will 
result in similar outcomes that already exist with TPC approaches in urban areas, including 
increased patient satisfaction, improved health outcomes, and lower healthcare costs. Further, the 
proposed study addresses three independent yet inter-related healthcare foci: transitional care, 
the needs of rural FCGs, and the rapidly growing field of palliative care. Our study will not only 
address the critical barrier imposed by distance, but also extend palliative care practice by 

improving transition management for the impending dramatic increase in the numbers of FCGs of 
seriously ill patients in rural areas through evolving demographic shifts.70 By focusing on care 
transitions for FCGs of palliative care patients and enhancing those transitions with the use of HIT, 
we aim to improve the transition care experience for FCGs (i.e., reduce caregiving burden, 
improve FCG physical and mental health, improve FCG management of care recipient symptoms) 
and subsequently decrease healthcare utilization and costs. Lastly, the proposed comprehensive 
cost assessment will help inform the healthcare community of the true financial burden borne by 
FCGs, which may, in turn, help FCGs plan and be prepared for the financial commitment they will 
likely undertake while providing care to their loved ones. More broadly, this study will inform health 
policy that recognizes and ideally supports the financial impact of caregiving on FCGs who provide 
a substantial portion of palliative care. If the proposed intervention (TPC for FCGs) is proven 
successful, knowledge about cost impact of the intervention will be crucial to scaling up the 
intervention. 
 
B. APPROACH 
Preliminary Studies 
Study #1. We examined the feasibility of using existing HIT to provide older, healthy individuals at 
home in rural areas with a means of regularly engaging with a nurse across distances.21 Video 
visits between the patient and the nurse were conducted using a 3G-enabled Apple iPad, a 
cellular phone data service, and a web-based, HIPAA-compliant video conference service. 
Participants and clinicians reported the technology as useful and easy to use. Standard 
observations revealed the importance of the visual cues provided by the technology to enhance 
communication, engagement with the clinician, and satisfaction with video visits.21 Findings from 
this study validated our hypothesis of the feasibility of older adults living in rural areas using a 
simple and readily available technology intervention, when training and technological support was 
provided. 
 
Study #2. In a pilot test of a technology-enhanced intervention with palliative care patients and 
their family caregivers living in rural areas, we learned that the problems for care recipients and 
FCGs pertained to health-related behaviors, as well as physiological, psychosocial and 
environmental issues. We learned that patients introduced to palliative care while hospitalized, 
usually for a medical crisis, were late in their disease trajectory and often experienced 
deteriorating cognition that interfered with participation and self-reported data collection over 
time.22 However, their FCGs remained very committed to the technology-enhanced TPC 
intervention and wanted to continue in the study even though the patient could not participate (or 
after the 2-month intervention period ended). As their loved one transitioned from hospital to 
home, FCGs reported that the nurse-led video visits provided continuity of care and assistance 
with care coordination that was otherwise not available. The FCGs in the control group reported a 
less coordinated transitional care experience.22 The majority of ED visits during the pilot study 
were due to symptom exacerbations for which the FCG was not prepared. Findings from this study 
prompted us to now include anticipatory guidance, such as FCG Readiness Plans, individualized 
information and education, to proactively prepare and assist the FCGs in managing symptom 
exacerbations at home.2 No patient/FCG in the intervention group was lost to follow-up due to 
issues with using the technology, as we were able to immediately remedy any technological 
issues with the equipment or connection. Findings from this study substantiate the intervention in 
the proposed randomized controlled trial (RCT), as we now include information, education, 
support, and advocacy to the FCG that will improve their overall well-being and ability to care for 
their loved one at home. 
 
Summary. Our preliminary work provides the foundation on which the research team will 
successfully complete the proposed study. In preliminary study #1 the investigators determined 
the resource allocation and support necessary for successful video visits. Results from preliminary 
study #2 documented the extent of the practical value of the technology-enhanced TPC 
intervention and the need to intentionally focus on supporting FCGs during the transition period. 
We have addressed this in our proposed RCT by utilizing a novel, nurse-led, technology-
enhanced, theory-based TPC care model focused on FCGs. The proposed study is the next 
logical step to test the effect of our novel model of care to support FCGs of patients with life-
limiting illnesses. 

 
Theoretical Framework 
Transitions are defined as changes due to illness, development and lifespan, or due to social 
reasons, such as family caregiving.118 Transition theory24 provides a framework by which to 
understand the complex adaptations made by FCGs as they manage the changes associated with 
caring for a family member new to palliative care and recently discharged from the hospital. 
Transition Theory has been used extensively to provide the theoretical foundation for other 
studies of FCGs of persons with cancer and other chronic conditions.119-123 
 
Transitions are complex, 
multidimensional processes that 
create vulnerability in an individual. 
Several transitions may occur 
simultaneously. Depending on the 
response to the transition process, the 
health and well-being of the individual 
can be enhanced or diminished. 
Transitions are affected by personal, 
community, and/or social conditions – 
all of which can serve as potential 
facilitators or inhibitors (barriers) to a 
successful transition. Outcomes of the 
transition are identified by the 
individuals’ patterns of responses including the transition process and outcome indicators (Figure 
1). 
 
In our proposed study, the nature of the framework involves two salient types of transition: (1) the 
care recipient’s eligibility for, and acceptance of, palliative care due to a life-limiting illness and (2) 
the transition of the care recipient from the hospital to home. Both of these types of transition have 
complex patterns. Transition properties include the quality of the FCG-care recipient relationship. 
Also, caregiving demands during the transition may influence the transition condition. Personal, 
social, and community transitions can act as either facilitators or barriers. For instance, FCG 
beliefs about caregiving can have a positive (facilitator) or negative (barrier) impact on caregiver 
well-being.124-127 Conditions of the transition (as facilitators or inhibitors/barriers) include 
spiritual/religious beliefs,128 time available for caregiving (other FCG responsibilities & 
demands),129 decision-making preference,130 health literacy,131 income, FCG support needs,132 
readiness for hospital discharge,133 and FCG personal health issues.129 
 
In this study the FCG transition process indicators will be measured by FCGs’ preparedness for 
caregiving,134 communication skills,135 and satisfaction with care (Aim 1).136,137 Recognizing the 
potential effect of caregiving on FCGs’ health, we will measure FCGs’ quality of life,9,138 coping,139 
depression,140 and burden141 as transition outcome indicators (Aim 2). The FCGs have a 
substantial effect on care recipients’ overall care and symptom management; therefore, we will in 
turn evaluate healthcare costs from a societal perspective including costs borne by FCGs and 
care recipients (Aim 3).8,87  
 
Research Design 
The RCT design will be used to test the efficacy of technology-enhanced TPC for FCGs on 
outcomes related to the FCGs’ experience and determine the impact on costs from a societal 
perspective. After informed consent is obtained, FCGs will be randomly assigned to one of two 
groups by computer-generated randomization lists: 1) the experimental group or 2) a “usual care” 
or control group. Consistent with transitional care models,142,143 the intervention period will 
continue for 8 weeks after care recipients are discharged from the hospital. 
 
Setting 
The setting for this study is the Mayo Clinic Hospitals in Rochester and Mankato Minnesota and 
LaCrosse Wisconsin. While patients at the Mayo Clinic Rochester Hospital comr from all regions 
of the US and many forgein countries, the majority (80%) come from within a 120-mile radius of 
Rochester. The same holds true for the more community-based hospitals in Mankato and 
Nature of 
Transition
Type
Patterns
Potential Facilitators
Potential Inhibitors
Patterns of 
Responses
Process Indicators
Outcome 
Indicators
Intervention
Technology Enhanced Transitional Palliative Care
Figure 1: Transition experiences among family caregivers of palliative care patients
Properties
Transition Conditions

LaCrosse.   Of the 31 counties in the major catchment area of the clinic, 26 are designated as 
rural or federally designated medically underserved areas.144,145 
 
The Palliative Care consulting service is available to any patient hospitalized at Mayo Clinic 
Hospital — Rochester, Mayo Clinic Health Sytems in Mankato and/or LaCrosse. The Mayo Clinic  
Rochester service is organized into 3 teams. Each team has a physician and an advanced 
practice clinician, plus students. On average there are 6-10 new consults per day. The palliative 
care teams meet daily to discuss new and continuing patients. Dr. 
 (Co-I), 
 
 (pharmacist), 
 (SW) and 
, (APN) are members of the 
palliative care consulting service and members of our research team. 
 
The Palliative Care consulting service in the Mayo Clinic Health System hospitals in 
Mankato and /or LaCrosse is smaller and includes one team for each site.  The research 
coordinator will work independently of the Palliative care clinic team at these hospitals. 
 
Sample – Target population 
Our target population is community-dwelling adult FCGs providing care to a loved one who has a 
serious life-limiting condition and is new to palliative care, the care recipient will also be consented 
into the study. A FCG is broadly-defined as the person self-identified as the family member or 
unpaid friend who is the primary informal caregiver for a patient with a terminal illness. The FCG 
may or may not be a member of the care recipient’s nuclear family. FCGs and their corresponding 
care recipient will be approached for study enrollment by either members of the palliative care 
team or the study coordinator (SC) using an IRB-approved informational brochure, including 
contact information for members of the study team if further discussion is requested, during the 
care recipients’ hospital stays. Alternatively, the study coordinator may call a patient’s primary 
caregiver to introduce the study if the caregiver and the patient meet the criteria for enrollment. 
Interpreters will be available for individuals who have difficulty with the English language. 
 
FCGs 
Inclusion Criteria. Any adult FCG (≥21 years of age) of adult patients (≥21 years of age) 
hospitalized at Mayo Clinic Hospital — Rochester, Mayo Clinic Health Systems in Mankato and/or 
LaCrosse who receives an in-hospital palliative care consult and lives in a Minnesota, Iowa or 
Wisconsin county that is designated as medically underserved or rural will be invited to participate. 
 
Exclusion Criteria. The FCGs of patients   who live in Rochester, MN, will be excluded. Rochester, 
MN is not considered a medically underserved or rural area.144,145 The FCGs of patients with left 
ventricular assistive devices, documented chronic pain, use of home infusion pain pumps, or 
documented active addictive behaviors (documentation of FCG’s current substance use or 
treatment in care recipient medical record) will be excluded from this study because of their unique 
needs in caregiving are not addressed by this study. 
 
Care Recipients 
Inclusion Criteria. Any adult patient (≥21 years of age) hospitalized at Mayo Clinic Hospital — 
Rochester, Mayo Clinic Health Systems in Mankato and/or LaCrossewho receives an in-hospital 
palliative care consult and lives in Minnesota, Iowa or Wisconsin will be invited to participate. 
 
Exclusion Criteria. Patients with left ventricular assistive devices, documented chronic pain, use of 
home infusion pain pumps, or documented active addictive behaviors (documentation of current 
substance use or current hospitalization for substance use in medical record) will be excluded 
from this study because of the unique needs of their FCGs are not addressed by this study. 
 
Recruitment. Eligible FCGs and care recipients will be introduced to the study by a trained SC 
over the phone or in person using an approved detailed phone script. Due to COVID-19 hospital 
visitation restrictions, we will not rely on members of the hospital palliative care consulting team to 
introduce the study with potential caregiver participants during consultations with the care 
recipient. A study coordinator may  meet with the palliative care teams as needed or call palliative 
care team members o ascertain potential recruits. 
 

Our target population is community-dwelling adult FCGs providing care to a loved one who has a 
serious life-limiting condition and receives a palliative care consult.  However, we will also consent 
the care recipient Informed consent of the hospitalized care recipient will be obtained by a trained 
SC in person via written informed consent or via Ptrax Docu Sign, over the phone (verbally) or 
email of electronic consent following a conversation outlining the risks, benefits and goals of the 
investigation. The SC will allow ample time for this conversation, which will include the care 
recipient’s understanding that the study involves collection of data from their electronic health 
record, discussion of their symptoms with their FCG, and collaboration between their FCG and 
their primary care provider/specialty providers related to goals of care.  
 
Enrollment. The study coordinator will either visit in person or call the FCGs and care recipients 
prior to the care recipients being discharged, to further explain the study, obtain written consent in 
person and/or via Ptrax DocuSign or email electronic consent and, if possible, collect baseline 
data.  
 
If a care recipient lacks the cognitive capacity to provide consent based on an IRB-approved 
assessment of their understanding of the study, the care recipients’ documented legal authorized 
representative will sign or verbally the consent (see above) form on their behalf. We will then 
document assent of the care recipient on a separate assent form. 
 
Upon completion of the informed consent process, the SC will retain documentation of the FCG’s 
consent and the care recipient’s consent/assent along with the assessment in the research study 
files, including the name and job title of the study team member who explained the study, a brief 
description of what was explained, questions (if any) that were asked and answered, confirmation 
that the subject expressed understanding of the study and willingness to participate, and the list of 
written information given to the subject. 
 
Based on recruitment approaches, including introduction of the study by our trained SC and, when 
possible, by the members of the hospital palliative care consulting service, review of palliative care 
admission lists by a study coordinator, FCG remuneration, our prior experience enrolling hospice 
eligible patients while still hospitalized,146 and flexibility in data collection to meet FCG 
preferences, we are confident in our ability to recruit the necessary 8 participants per month to 
meet the subject accrual goals in a timely manner. 
 
Sample Size and Power Calculations 
Determination of sample size is based on the analyses of study Aims 1 and 2 to detect a 
meaningful effect size. The focus of this study is FCGs. With a sample size of 100 FCGs per 
group, we will have 80% power to detect an effect size 0.487 at an alpha level of 0.01, assuming a 
two-sided, two-sample t-test is appropriate. This suggests that if a standard deviation of difference 
between two groups for a particular endpoint is 1 unit, then a difference of 0.487 points per month 
between two groups for that endpoint will be detectable with this sample size. Given that our 
primary outcome of interest is rate of change, only FCGs with at least one post-baseline 
measurement would be able to be evaluated. To account for a possible attrition rate of ~30%,9 due 
to unanticipated events such as loss to follow-up, we plan to recruit a total of 500 FCGs per group 
at an average of 8 FCGs per month over a planned 36-month enrollment period. We are confident 
we will enroll the target number of FCGs, as there were over 300 patients seen by the palliative 
care consulting service in both 2014 and in 2015 and discharged home to the major catchment 
area of the study setting. 
 

The sample size of 100 FCGs per group will have approximately 87% and 75% power to detect a 
20% difference in hospitalization and ED visits, respectively. This power calculation is based on a 
mean number of hospitalizations of 0.75 (SD=0.4), and mean number of ED visits of 0.45 
(SD=0.2), using a 5% level two-sided, two-sample means t-test,147,148 and assumes monthly 
healthcare costs of $2,000 for the intervention and control cohorts for a common standard 
deviation of $1000. 
 
We will also recruit a 
total of 500 
corresponding care 
recipients per group. 
 
Experimental Group: 
Technology-
enhanced 
transitional 
palliative care 
intervention. 
An intensive 8-week 
TPC intervention for 
FCGs is focused on 
the needs of FCGs of 
palliative care 
patients. Study 
enrollment will occur 
during the care 
recipients’ 
hospitalization when a palliative care consult first occurs. The intervention includes dual pre-
discharge and in-home components. Because only those FCGs who live outside of Rochester will 
be included in this study, the in-home component will be conducted using video visits. The TPC for 
FCG incorporates key objectives of both palliative and transitional care to be achieved during the 
intervention period as described below, outlined in Figure 2, and detailed in Appendix A. 
 
There are no intervention activities planned for care recipients. 
 
A study nurse will develop an individualized FCG plan of care based on their assessment of FCG 
risks, needs, strengths, and preferences.150 A unique plan of care to support FCGs includes: (1) a 
wellness plan to meet their own self-care (preventive and health-related physical and emotional 
wellness needs) and concerns during the transition period and (2) help for the FCG to meet the 
care recipient’s needs. FCG Readiness Plans are key components of the FCG plan of care 
providing anticipatory guidance to address self-care needs and to meet common symptom 
management challenges for use by FCGs. The nurse will assist the FCG in implementing the plan 
of care and refine the plan of care to accommodate changing caregiving needs throughout the 8-
week intervention through FCG advocacy, teaching, guidance, and counseling through in-person 
visits (during the hospital stay), and video visits and phone contacts at home. A copy of the 
individualized self-care plan will be provided to the FCG at the end of the intervention. Dr. Dose 
(Co-I) contributes the necessary expertise to oversee and train the study nurses in the TPC for 
FCGs intervention. 
 
The TPC for FCG intervention will be provided by experienced, certified palliative care registered 
nurses. Review and recommendations of plans of care will be provided weekly and more often as 
needed by a study palliative care team (physician, pharmacist and social worker). Team meetings 
will focus collectively on identifying and meeting the unique caregiving and self-care needs of each 
FCG incorporating tenets of both transitional care and palliative care (Figure 2). Review and 
updates of the plans of care will be conducted with the FCG and other clinicians on the study team 
to meet mutually agreed and attainable goals. 
Part 1: Pre-discharge intervention. The study nurse will make the first pre-discharge l visit with the 
FCG within 24 hours of study enrollment either in person or via video and every other day visits 
with the FCG during the remainder of the care recipient’s hospital stay. The study nurse will have 
Figure 2.Technology-Enhanced Transitional Palliative Care for Family Caregivers
Intervention Objectives
Caregiving in Palliative Care103,108
1. Education on palliative care
2. Self-care for the caregiver
    a. Balancing family, self, and caregiving  
        responsibilities
    b. Sleep and rest
    c. Accepting help
3. Education on role of caregiver in palliative care 
    context
4. Strategies to respond to care recipient physical 
    symptoms and emotional issues
5. Goal setting and problem solving
6. Advance care planning
Caregiving in Transitional Care18,143,149
1. Education regarding care recipient medications, 
    administration, and side effects
2. Discuss importance of follow-up with primary care, 
    specialty providers
3. Education regarding indications of changes in care 
    recipient condition and how to respond
4. Follow-up visit/Reconnect to primary care provider
5. Integrated care plan with health & community 
    services
6. Communicating with healthcare providers
Post-Discharge/Community based Visits
Each Hospital Day
APN daily interaction including 
transition planning with FCG
Weeks 1-4
Weeks 5-8
Minimum of 2 virtual visits/week by 
APN with FCG, phone calls as needed
Minimum of 1 virtual visit/week by APN  
with FCG, phone calls as needed
Timeframe of Activities

access to all baseline data collected to assist with assessment and care planning (See Table 1 
below for variables and measures). During the pre-discharge visits the nurse will: (1) assess the 
FCG’s physical and emotional self-care needs, including the involvement of secondary caregivers 
and/or formal service providers to support the FCG and develop a FCG wellness plan; (2) assess 
the FCG’s knowledge and skills for skillful caregiving; (3) begin transitional care planning by 
working with the FCG, the palliative care consulting service and acute care staff, and local 
community service providers; and (4) develop individualized FCG Readiness Plans (adapted from 
Hospice & Palliative Nurses Association and AARP materials)2,117 to anticipate caregiving needs 
that may arise when they return home. On the day of care recipient’s discharge, the nurse will 
confirm the FCG’s understanding of caregiving needs, physical and emotional readiness for 
caregiving, and confirm that plans for FCG self-care and respite are in place. 
 
Part 2: At home technology-enhanced intervention. A minimum of weekly video visits will occur 
during Part 2 of the study. The first video visit by the nurse with the FCG will occur within 24-48 
hours of hospital discharge. During visits the nurse will: (1) Provide ongoing education, guidance, 
and support to the FCG to develop self-care and caregiving skills; (2) Coordinate the 
implementation of the community-based aspects of the transitional care plan to address the FCG’s 
as well as the patient’s needs; (3) reaffirm and provide education and anticipatory guidance for the 
use of individualized FCG Readiness Plans for common care recipient symptoms such as pain, 
breathlessness, anxiety, etc.; (4) if requested, collaborate through active dialog with the local 
community resources included in the transition plan; (5) if requested, collaborate with the primary 
care provider/specialty providers related to goals of care; (6) coach the FCG in preparation for 
care recipient/provider office visits; and based on her continuing assessments; and (7) provide 
additional video visits/phone calls to support the FCG. Palliative and transitional care intervention 
objectives and activities are listed in Figure 2. Frequency type and length of contacts will be 
documented to quantify the dose effect of the intervention. 
 
Video visits will be accomplished via the Zoom application using the equipment of choice by the 
FCG: a 3G-enabled iPad (provided by the study) or their own Smartphone or personal computer 
enabled with a camera for video visits. Any required training on the equipment and software will be 
conducted by the study coordinator in person or over the phone during Part 1 of the intervention 
with additional 24/7 technical support provided by the study coordinator and the IT solutions 
contractor (Caryl Technologies, LLC) during Part 2. 
 
The intervention will continue for the FCGs during the 8-week period. Based on our prior 
experience with the FCG population, it is possible that the care recipient may be placed in a long-
term nursing facility or die during the 8-week study period. In the case of the death of the care 
recipient, bereavement support (phone calls, video visits, and written educational materials) for the 
FCG will be provided for the duration of the 8-week intervention interval. 
 
Control group: Usual care condition 
The FCGs randomized to the control group will receive a phone call by a member of the study 
team reminding them of the study and the next scheduled data collection date. This call will 
account for the nonspecific conditions of expectancy, social support, and attention considered 
necessary to generate placebo effects.151 If concerns are identified during the attention control 
interaction between FCGs and study personnel, the FCGs will be advised to call their primary care 
provider. Control group care recipients will receive consult visits by the palliative care team while 
hospitalized, usual hospital discharge planning, and primary and specialty care in the community 
after hospital discharge. Services received by the FCGs will be collated and considered for 
analysis as confounding factors. We do not anticipate care recipients will participate in any study 
activities. 
 
Study procedures 
Study Preparation and Monitoring. Following IRB approval, the study coordinators and clinician 
members of the research team will be educated on the purpose of this study, as well as trained in 
all study procedures by the investigators; training will occur at study initiation and at subsequent 
quarterly reviews of study procedures.  
 
 

Intervention Fidelity. The investigators will ensure that all study personnel are delivering the 
intervention according to the study procedure manual through weekly supervision/monitoring 
during the first month and monthly thereafter. We will ask caregivers if we can record their video visit for 
fidelity monitoring purposes, The information would stay internal and the caregivers would be given the 
opportunity to decline being recorded. An intervention guide will be developed to help assure fidelity 
to the protocol. To guarantee intervention fidelity, Investigators will audit the first 6 intervention 
interactions and evaluate with a detailed checklist; 100% adherence is the expectation. Any 
inconsistencies or deviations from the protocol will be addressed with the study team immediately. 
To monitor fidelity over the course of the study, Drs. Griffin, Dr. Holland and Dr. Vanderboom  will 
use a check list to audit at least two intervention interactions for each FCG per study quarter. 
Challenges to intervention fidelity and how they will be resolved will be discussed with the 
intervention nurses during quarterly meetings. Review of study procedures and retraining of the 
intervention nurses and on-call palliative care staff will be done by the investigators, as needed. 
 
Scientific Rigor and Transparency. Attention to scientific rigor and transparency is demonstrated 
by our plan to use methods to minimize bias and limit threats to internal and external validity. We 
will accomplish this by using the following: (1) a theoretical framework to guide development of the 
intervention; (2) validated measures specifically designed to evaluate caregiving and palliative 
care outcomes; (3) a clear and reproducible description of the intervention components and 
approach; (4) clearly outlined methods to evaluate fidelity to the intervention; (5) plans for 
exploring retention of participants during the intervention and data collection phase and 
determining factors that promote and/or hinder ongoing study participation; and (6) an inclusive 
sample to produce results that can be generalized to men and women. 
 
Authentication of key biological and/or chemical resources. Findings regarding sex differences in 
FCG outcomes 9,152 have not been reported, although the majority of FCGs are female.153 Based 
on the unequal sex distributions in other studies of FCGs,154-156 we anticipate the enrollment of 
FCG female participants will be greater than males. We have no evidence to suggest that the sex 
distribution of FCGs will impact our outcomes. 
 
Variables and Their Measurements 
Copies of instruments we will use are found in Appendix B, including core data elements for 
caregiving research suggested by the Palliative Care Research Cooperative Group.129 
 
Table 1 summarizes the concepts, variables and measures, and timing of data collection. Data, 
including sample characteristics (age, sex, race/ethnicity, marital status, education, how long the 
FCG has been providing care to the care recipient, any computer/Smartphone experience and 
availability) and questionnaires, will be collected by a study coordinator from all enrolled 
participants after obtaining consent (baseline) via in-person interviews prior to the care recipients’ 
hospital discharge.  
Self-reported data will be obtained by computer-assisted interviews, telephone or mailed 
questionnaires, based on FCGs preferences, from all FCGs at 2 weeks, at the end of the 
intervention period (Aims 1 and 2) and at 6 months (Aim 2). If FCGs choose to complete 
questionnaires independently, they will have the choice of receiving a packet by mail or a link to 
complete questionnaire electronically via REDCap. If any FCG would like assistance completing 
the questionnaires, the study coordinator will provide assistance. Given the complexity of cost 
data, participants will be telephoned monthly for 6 months post-hospital discharge for cost data 
collection needed to address Aim 3.    
 
If the care recipient dies, we will collect Aims 1 and 2 outcomes data from the FCG approximately 
2 weeks later, given that grieving family members’ distress and satisfaction with care should be 
more stable 2 weeks after their loved one’s death.157,158  
In order to assure the safety of participants, the intervention nurse or study social worker will 
follow up by phone with all participants, regardless of, who report a score of >10 on depressive 
symptoms on any questionnaire or if an intervention or control caregiver reports via phone, survey 
or email information that raises the concern for elder mistreatment or abuse about family or 

interpersonal conflict with potential violence or risk for self-neglect. Standard best practice 
protocols on assessing depression risk and self-harm will be followed.  These include:  
  
 
a. General and specific screening tools about neglect or mistreatment will be completed 
 
 
a)  With any suspicion of risk for self-harm, violence, or safety, the person with the closest 
knowledge (who talked or visited with the care recipient or caregiver) immediately contacts 
MN, WI or IA Adult Protective Services.   
b) Police will also be contacted if there is an imminent or immediate threats 
c) If intervention nurse or study social worker determine no suspicion for harm, coping skills 
and resources are discussed and when necessary, referral to palliative care/hospice team 
social worker.     
d) All conversations and decisions are documented into study records.  
 
 
Properties of the transition. Guided by the theoretical framework for the study, measures of 
properties of the transition include the quality of the FCG/care recipient relationship (Assessment 
of Mutuality121,134,161-163) and caregiver demand (hours of caregiving and length of time 
caregiving129). Variables related to the properties of the transition serve as control variables or will 
be considered as covariates in the analysis. 
 
Transition conditions (facilitators and barriers). Measures of facilitators/barriers also serve as 
control variables and include spiritual/religious beliefs,128 time available for caregiving (due to other 
FCG responsibilities and demands),129 decision making preferences,130 health literacy,131 income, 
FCG support needs,132 readiness for hospital discharge133 (measured at hospital discharge), and 
FCG personal health problems (if any).129 
Aim 1: Evaluate the effect of a technology-enhanced TPC care model on caregiving 
preparedness, communication with clinicians, and satisfaction with care for FCGs. 
1. Preparedness for caregiving. The Preparedness for Caregiving Scale134,161,163 captures how 
well FCGs feel they are prepared for the multiple aspects of the caregiving role, using a 4-
point response set ranging from 0 (“not at all”) to 4 (“very well”). A mean score is calculated; 
higher scores indicate greater preparation for caregiving.163 Cronbach alphas of 0.88-0.93 are 
reported.163 
 
Table 1. Framework concepts, variables, timing, and estimated burden 
Concepts 
Variables and Measures 
Timepoints 
Estimated 
Burden 
Sample Characteristics 
 
 
 
Age, gender, race/ethnicity,  marital status, education, relationship of FCG to 
care recipient, how long the FCG has been providing care to the care 
recipient, any computer/Smartphone experience and availability, diagnoses, 
medications, 
Baseline 
2-6 minutes 
Properties of the Transition 
 
 
 
Mutuality,134 Single items for relationship of FCG/care recipient; Caregiving 
demand129 
Baseline 
2-6 minutes 
Transition Conditions (Facilitators or Barriers)  
 
 
Characteristics 
Spiritual/Religious beliefs,128 Time available for caregiving (FCG 
Responsibilities & Demands),129 Decision making preference,130 Health 
literacy,131 Income (single items), FCG Support Needs,132 Hospital Discharge 
Readiness,133 FCG Personal Health Problems129 
Baseline 
5-12 
minutes 
Patterns of Response (Outcomes) 
 
 
Aim 1  
Preparedness for caregiving,134 Communication skills,135 Satisfaction with 
care - CG-PACIC136,137 
Baseline, 2, & 8 
weeks 
6-10 
minutes 
Aim 2  
Quality of Life (CG QOL Scale-Cancer),9,138 Coping,139 Depression,140 Burden 
(Bakas Caregiving Outcomes Scale),159 Patient Outcome Scale-Carer160,  
Baseline, 2, & 8 
weeks 
17-20 
minutes 
Aim 2 
Depression,140 Burden (Bakas Caregiving Outcomes Scale),159 Positive 
Aspects of Care (6 months only); open-ended study satisfaction  
6 months 
6-10 
minutes 
Aim 3  
Healthcare Utilization and Cost (Ambulatory and Home Care Record) 
Monthly, 6 months 
30 minutes 

2. Communication skills. The Communication with Physicians scale164 will be used to measure the 
communication skills of the FCG. Originally designed for chronic disease self-management 
behavior, the scale has 3 questions targeting how often the FCG prepares a list of questions for 
the doctor, asks questions, and discusses personal problems across a 6-point response set 
ranging from “never” to “always.” Scores range from 0-5 with higher scores indicating better 
communication. Internal consistency and test-retest reliability coefficients are good (0.73, 0.89, 
respectfully).164 
 
3. Satisfaction with care. A modified version of the Patient Assessment of Chronic Illness Care 
(PACIC) will be used to obtain FCG perceptions of the quality of chronic illness care received 
by the care recipient, as used by Wolff and colleagues.137 The PACIC was originally developed 
to measure patients’ perspectives of the care they had received for their chronic illness, based 
on best practices as described in the Chronic Care Model.165 The PACIC consists of 20 
questions with 5 subscales: (1) activation, (2) delivery system design, (3) collaborative goal 
setting, (4) problem-solving, and (5) follow-up/coordination.165 Scoring is a total mean score and 
a mean score for each subscale. Internal consistency (Cronbach alpha) for the overall score is 
reported as 0.96.165-167 
 
Aim 2: Evaluate the effect of technology-enhanced TPC on FCGs’ quality of life, burden, coping, 
and depression. 
1. Quality of life. The Caregiver Quality of Life Scale – Cancer (CQOL–C) will be used to measure 
FCGs’ quality of life. The CQOL-C is a 35-item self-report measure of the impact on the 
caregiver’s physical, emotional and spiritual well-being and on the relationship with the care 
recipient.138 Scores range from 0-140; higher scores indicate worse quality of life. Cronbach 
alpha of 0.91 is reported in cancer and palliative care caregivers.9,168 
 
2. Burden. The Bakas Caregiving Outcomes Scale-Revised (BCOS-R) will be used to measure 
the burden placed on FCGs in caring for their loved ones. The BCOS-R contains 15 items that 
measure changes as indicators of the effect of caregiving on FCGs’ lives.169 The response set 
uses a 7-point Likert scale that ranges from “changed for the worst” to “changed for the best.” 
Higher scores indicate more positive caregiver outcomes.168 Cronbach alphas range from 0.81 
to 0.90.159 
 
3. Coping. The Post Discharge Coping Difficulty Scale (PDCDS) is an 11-item scale used to 
measure the degree of difficulty in coping with stress, recovery, self-care and management of 
medical needs, help and emotional support needed, confidence in self-care and medical 
management abilities, and adjustment after hospital discharge.170,171 The items are measured 
on an 11-point rating scale with higher scores indicating greater coping difficulty. The FCGs will 
rate the items on a scale of 0 (“not at all”) to 10 (“extremely, completely, or a great deal”). The 
PDCDS is reliable whether self-administered or completed by interview. The instrument 
measures important, yet often overlooked, factors that contribute to poor post-acute recovery 
experiences, which are recognized as important factors likely to impact readmission and ED 
visits.172-174 Exploratory factor analysis indicates a single dominant factor accounting for 39% of 
scale variance.175 Reliability in adult populations is reported from 0.81139 to 0.87.175 
 
4. Depression. Depression will be measured with the 10-item Center for Epidemiological Studies 
Depression Scale (CESD-10). The CESD-10 has been used as a screening tool for depression 
in studies with elderly patients176 as well as patients with chronic conditions.177,178 The 
correlation between this instrument and the original CESD, which had 20 items, is high.178 The 
CESD-10 reliability statistics are comparable to those for the original CESD.176 Higher scores 
indicate greater depressed mood. Scores of 10 or greater indicate clinically significant 
depression. Reliability coefficients are high (0.85-0.91).179 
5. Positive Aspects of Care will be measured using Tarlow et al’s Positive Aspects of Caregiving 
Measure.166   This instrument has been used in large, diverse samples of caregivers and has 
shown high reliability coefficients (0.89)  Examples of questions include, “Providing help to my 
care recipient has made me feel more useful” and “made me feel good about myself.”  
6. Satisfaction with study.   An open-ended question that assesses participant satisfaction with 
participation in the study is included in the 6 month survey. Answers to these questions will 
provide insight into the participant experience and allow for improvements in study execution.     
 

Aim 3: Examine the effect of technology-enhanced TPC for FCGs on healthcare costs. The 
Ambulatory and Home Care Record (AHCR) will be used as our healthcare cost measure. The 
AHCR is designed to capture costs from a societal perspective, implying that costs from all 
stakeholders (FCG, care recipients, and health systems) will be collected. Developed for the 
Canadian health system where healthcare is primarily publicly funded,1 the AHCR will be modified 
for our study to collect expenditures paid for by any type of payer (e.g., commercial, government, 
or other insurance; and self-pay/no insurance) instead of simply publicly-financed 
expenditures as in the original AHCR. Third party insurance refers to any supplemental insurance 
over and above the primary insurance that the patient has (see Table 2). Thus, the proposed 
change to the original AHCR measure is only to increase clarity regarding funders and therefore 
we do not anticipate any threat to the AHCR’s validity. The AHCR captures self-reported utilization 
and cost information for care provided by all FCGs and other unpaid caregivers, paid care 
received at home (e.g., home health care) and outside of the home (e.g., doctor/therapy 
appointments),as well as medications, supplies, and equipment. Out-of-pocket costs refer to all 
care-related expenses not paid for by the insurance. These data will be collected monthly for 6 
months following each care recipient’s discharge from the index hospitalization to minimize recall 
bias and to account for any time lag in billing systems. The FCGs will be prompted to have all bills 
received during the preceding month available during the monthly AHCR data collection. 
Agreement between care recipients’ reports on the AHCR and administrative data range from 
moderate (kappa=0.41; 95 percent confidence interval, 0.16–0.61) for physician visits to perfect 
(kappa=1.0) for physical therapy visits.25 
 
We will report these measures, per subject, every month to minimize the impact of patients dying 
in the earlier part of the intervention interval. The difference in costs of readmissions and ED visits 
between the intervention and control patients will provide an estimate of the costs avoided due to 
the proposed intervention. We anticipate that some care recipients will die before 6 months and 
therefore we will need to address right censoring of utilization and costs due to patients dying 
before the end of the study. Accordingly, we will adopt appropriate econometric methods as 
described in the Analytical Plan section below to account for the possible censoring of 
utilizations and costs.  
 
The time costs refer to the FCGs’ time and, if the FCG is employed, the employer time lost in the 
course 
of 
providing care to the care recipient. Time costs for the FCGs will be valued by a human capital 
approach.180 The most recently available data on current earnings by age and sex from the Bureau 
of Labor Statistics (BLS) will be used to impute the market value of time withdrawn from leisure 
and household work. In order to value lost time from the labor market, age- and sex-based 
earnings from the BLS will be adjusted for employer-paid benefits, vacations days and holidays.  
 
 
 
 
 
Table 2: Modified Framework for Assessment of Palliative Care Costs1 
Expenditure Category 
 
 
Third party-incurred Costs (Commercial/ 
Medicare/ Medicaid/ Other/ No Insurance) 
Privately-incurred Costs 
Time Costs 
3rd Party Insurance Reimbursement 
(Yes/No) 
Out-of-Pocket  
Caregiver lost time 
from 
• Home-based services 
• Home-based services 
• Labor Market 
• Ambulatory appointments 
• Ambulatory appointments 
• Household work 
• Hospitalization 
• Hospitalization 
• Leisure 
• Emergency Department Visits  
• Emergency Department Visits 
 
• Facility care 
• Facility care 
 
• Medications 
• Medications 
Employer Time Loss 
• Supplies and Equipment 
• Supplies and Equipment 
 
 
• Paid house work 
 
 
• Travel expenses 
 
Total 3rd party Expenditures 
Total Out-of-Pocket 
Expenditures 
Total Time Cost 

 
 
 
 
 
 
 
 
 
 
 
 
For those FCGs who are not employed outside the home, their time lost from household work will 
be imputed at the hourly earnings rate for the “personal care and service occupations” category in 
the BLS. Thus, the proposed valuation of the lost time will be a function of whether the time is 
diverted from the labor market, household work, or leisure. Dr. 
 (Co-I) will lead all aspects of 
this Aim. 
 
 
 
 
 
 
Analytical Plan 
Assessment of possible imbalances in the baseline covariates that may occur between the two 
groups, due to randomized intervention assignment, will be made by comparing the baseline 
characteristics between the two groups. Categorical variables will be compared using a Chi-
square test or Fisher’s exact test; continuous variables will be compared using a two-sample t-test 
or the Wilcoxon rank sum test, as appropriate. All analyses will be 2-sided with an alpha level of 
P<.01 for significance to account for multiple comparisons and endpoints. The intent to treat 
analysis will serve as the principle analysis set for efficacy assessments. 
 
Aims 1 and 2. Statistical analyses of Aims 1 and 2 will be performed in a similar manner. Every 
FCG will be evaluated using various scales and survey instruments at baseline, 2 weeks, and 8 
weeks post patient discharge (Table 1). We will use a response-feature analysis as our primary 
approach in analyzing these repeated measures data.181 For each FCG, the magnitude of the 
scores from the respective instruments will be plotted versus time (measured in months); least 
squares regression will be used to estimate a participant-specific rate of increase in points per 
month. This slope parameter estimate will be used as the response feature for each participant 
and is the primary endpoint for this study. The primary analysis of this endpoint will be analyzed 
using a two-sample t-test or Wilcoxon rank-sum test, as appropriate. The endpoints will also be 
analyzed using a fixed-effects linear regression model. This model will use the estimated 
regression-slope response-feature as the dependent variable and have independent variables 
consisting of intervention (yes, no) as well as any baseline covariates such as FCGs’ age, 
employment status, etc. These analyses will adjust for any possible imbalances in these baseline 
covariates among FCGs that occur due to the randomized assignment to the intervention. This 
analysis approach will hold for those endpoints collected only at two time points (i.e., baseline and 
8 weeks). 
 
Aim 3. Descriptive statistics, including mean, median, and standard deviation (minimum and 
maximum) for the utilization measures (i.e., hospitalizations and ED visits) will be provided. 
Considering the count nature of the utilizations, and to also account for any potential differences 
between the baseline characteristics of the care recipients in the two study arms, we will use 
Poisson regression to model various utilization outcomes.182 We expect that the gains (decreased 
healthcare utilization and costs) will be sustained beyond the enrollment period. Therefore, both 
descriptive and multivariable-adjusted measures will be estimated for the intervention period and 
the subsequent months post-intervention. A limitation of this economic approach will be the 
memory recall of the FCGs. We will provide a worksheet similar to Table 2 for all participants to 
help them track services and costs. 
 

For analyses of costs, standard descriptive statistics including mean, median, standard deviation, 
minimum and maximum will be provided for all cost outcomes measured individually and also for 
the overall cost measure. The difference in overall cost between the intervention and control group 
will provide an estimate of the cost impact of the TPC for FCG model of care. The difference in 
hospitalization and ED costs between the treatment and control arms will determine the cost 
avoidance potential of implementing the intervention. The difference in FCG cost, a component of 
the overall costs, between intervention and control groups will provide evidence on the impact of 
the intervention on this specific cost component. Both the descriptive and multivariable-adjusted 
measures will be estimated for 8 weeks and 6 months. Because the distribution of healthcare 
costs and length of stay (LOS) are generally skewed, both the LOS and costs will be log-
transformed before any estimation; the estimated coefficients can then be interpreted as the 
approximate percentage changes. Alternatively, we will also explore modeling costs and LOS with 
a generalized linear model with gamma distribution and log link.183 Furthermore, to account for the 
possibility that some of the study patients will die before the six-month follow-up; we will also apply 
econometric methods of censored regression.184,185 
 
Data Management 
Following the data safety monitoring plan (see Protection of Human Subjects), the PI and 
investigative team will review the data to ensure quality, adherence to study procedures, and 
safety at monthly study team meetings. All participant data will be coded and stored in a secure, 
locked cabinet in the study coordinator’s office. All data will be entered into the web-based 
Research Electronic Data Capture (RED-Cap) database and maintained on secure, password-
protected servers, accessible only to members of the study team. The database will be exported 
to the statistical analysis package, SAS, to be analyzed anonymously, and standard Mayo Clinic 
policies and safeguards will be used to protect the confidentiality of the subject records. 
 
Expected Outcomes 
The expected outcome of this study is an effective intervention to improve FCGs’ transition 
experiences, maintain their health and well-being, and decrease overall costs of providing TPC. 
This new knowledge will provide valuable information about TPC for FCG as a sustainable 
foundation for TPC models, and extend transitional and palliative care science to contribute to the 
National Institute of Nursing’s strategic plan priority of gathering evidence of effective palliative 
care/end of life interventions to compassionately support FCGs of patients with life-limiting illness. 
 
Potential Problems & Alternative Strategies 
The primary challenges in completing this study in a timely manner are recruitment of FCG 
participants during their care recipients’ hospital stay and completion of data collection after 
hospital discharge. We have identified the following strategies to overcome these potential 
problems.  
 
Recruitment. Drs.Griffin  has more than 15 years of experience achieving enrollment goals utilizing 
recruitment methods similar to those we will employ for this proposed study.186-189 One specific 
strategy is targeting recruitment during mid-day and early evening, facilitating patient and FCG 
availability. We have developed strong, ongoing relationships with the Palliative Care consulting 
teams, who have ongoing relationships with the patients and their FCGs on their caseload. These 
clinically based partners will also encourage study participation. 
 
Data collection after hospital discharge. Data collection will be completed based on FCGs’ 
preferences using computer-assisted face-to-face interviewing, telephone interviewing, or mailed 
questionnaires with a stamped pre-addressed return envelope. A cover letter will accompany the 
questionnaires sent by mail or administered via REDCap, requesting that the FCGs complete the 
questionnaires on the same day they receive them, if possible. The study coordinator’s phone 
number will be included, along with the offer to administer the questionnaires over the phone or 
via computer, if preferred. To minimize missing data, the study coordinator will make repeated 
attempts to collect the data at the respective time points. 
 
To assure maximal completeness of post-discharge data, the study coordinator will request at 
least 2 phone numbers (typically home and cellphone number) for all FCGs, as well as the name 
and phone number of another person who may know their whereabouts. Follow-up calls to 

schedule data collection will be made approximately 2 weeks and then monthly after hospital 
discharge at the number and time of day the FCGs suggest. Depending on the participant’s 
preference, they may choose to be contacted by text message or email instead of receiving a 
phone call. The study coordinator will use a cell phone with caller identification recognizable to the 
participants to assure completeness of follow-up data. If at first we are unable to connect, phone 
calls will be made at varying times during the day. Our prior experience related to completion of 
data collection after hospital discharge indicated that the majority of patients and FCGs do not 
venture far from home soon after discharge. We will provide remuneration to all FCG participants 
commensurate with the time spent in the study (intervention activities for intervention group, data 
collection for both groups) to encourage continued engagement. If a care recipient dies during the 
data collection period, it may be difficult to collect subsequent data from the FCG. Providing 
reminder phone calls as an attention control device will augment the continued engagement of 
control FCGs in the study. Recall of cost components will be enhanced by monthly data collection 
up to six months after the care recipient’s index hospitalization to account for any time lag in billing 
systems. The FCGs will be provided a checklist and prompted to have all bills received during the 
preceding month available during the monthly AHCR data collection. 
 
Resource Sharing Plan/Data Sharing Plan  
The research will be disseminated at national scientific meetings, and manuscripts will be 
generated from the Specific Aims. A clean de-identified dataset will be available to qualified 
investigators through communication with the PI after primary results manuscripts are accepted. 
 
C. Timetable  
STUDY TIME LINE 
Year 1 
Year 2 
Year 3 
Year 4 
Year 5 
Tasks 
Q1 Q2 Q3 Q4 Q1 Q2 Q3 Q4 Q1 Q2 Q3 Q4 Q1 Q2 Q3 Q4 Q1 Q2 Q3 Q4 
Study start-up: regulatory & 
training 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Subject accrual & data 
collection 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Data Analysis 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Cost Analysis 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Dissemination & final report 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
D. Future Directions 
Caregiving today is “more complex, costly, stressful, and demanding than at any time in human 
history.”4 The findings from this study will be foundational to creating effective linkages across 
healthcare settings and among providers by addressing FCGs’ needs as they transition from the 
hospital to providing care to their loved ones at home. Our findings will advance the development 
of TPC models of care to optimize outcomes for palliative care patients and their families who live 
in underserved areas. Future efforts will focus on dissemination and implementation of our 
technology-enhanced TPC model to benefit the greatest number of FCGs to meet their needs and 
improve their health and well-being. 
 
 
 

REFERENCES  
1. Reinhard SC, Feinberg, L. F., Choula, R., & Houser, A. Valuing the Invaluable 2015 Update: 
Undeniable Progress, but Big Gaps Remain. 2015; http://www.aarp.org/ppi/info-2015/valuing-the-
invaluable-2015-update.html?cmp=RDRCT-VALUN_JUN23_015. Accessed September 8, 2015.  
2. Brinda EM, Rajkumar AP, Enemark U, Attermann J, Jacob KS. Cost and burden of informal 
caregiving of dependent older people in a rural Indian community. BMC Health Serv Res. 
2014;14:207.  
3. O'Hara RE, Hull JG, Lyons KD, et al. Impact on caregiver burden of a patient-focused palliative 
care intervention for patients with advanced cancer. Palliat Support Care. Dec 2010;8(4):395-404.  
4. Hudson PL, Aranda S, Kristjanson LJ. Meeting the supportive needs of family caregivers in 
palliative care: challenges for health professionals. J Palliat Med. Feb 2004;7(1):19-25.  
5. Hudson P, Aranda S. The Melbourne Family Support Program: evidence-based strategies that 
prepare family caregivers for supporting palliative care patients. BMJ supportive & palliative care. 
Sep 2014;4(3):231-237.  
6. Dionne-Odom JN, Azuero A, Lyons KD, et al. Benefits of Early Versus Delayed Palliative Care 
to Informal Family Caregivers of Patients With Advanced Cancer: Outcomes From the ENABLE III 
Randomized Controlled Trial. J Clin Oncol. May 1 2015;33(13):1446-1452.  
7. Morrison RS. Palliative care outcomes research: the next steps. J Palliat Med. Feb 
2005;8(1):13-16.  
8. Hanson LC, Ersek M. Meeting palliative care needs in post-acute care settings: "to help them 
live until they die". JAMA. Feb 8 2006;295(6):681-686.  
9. Coleman E, Min S, Chomiak A, Kramer A. Posthospital care transitions: patterns, complications, 
and risk identification. Health Services Research. Oct 2004;39(5):1449-1465.  
10. Naylor MD, Aiken LH, Kurtzman ET, Olds DM, Hirschman KB. The Importance Of Transitional 
Care In Achieving Health Reform. Health Affairs. 2012;31(3):746-754.  
11. Brazil K, Kaasalainen S, Williams A, Rodriguez C. Comparing the experiences of rural and 
urban family caregivers of the terminally ill. Rural Remote Health. Jan-Mar 2013;13(1):2250.  
12. van Walraven C, Bennett C, Jennings A, Austin P, Forster AJ. Proportion of hospital 
readmissions deemed avoidable: a systematic review. Canadian Medical Association Journal. 
2011.  
13. Forster AJ, Murff HJ, Peterson JF, Gandhi TK, Bates DW. Adverse drug events occurring 
following hospital discharge. J Gen Intern Med. Apr 2005;20(4):317-323.  
14. Coleman EA, Williams MV. Executing high-quality care transitions: A call to do it right. Journal 
of Hospital Medicine (Online). 2007;2(5):287-290.  
15. Coleman EA, Roman SP. Family caregivers' experiences during transitions out of hospital. J 
Healthc Qual. Jan-Feb 2015;37(1):12-21.  
16. Wolff JL, Rand-Giovannetti E, Palmer S, et al. Caregiving and chronic care: the guided care 
program for families and friends. J Gerontol A Biol Sci Med Sci. Jul 2009;64(7):785-791.  
17. Ricketts T. The changing nature of rural health care. Annu Rev Public Health. 2000;21:639-
657.  
18. Holland DE, Vanderboom CE, Ingram CJ, et al. The Feasibility of Using Technology to 
Enhance the Transition of Palliative Care for Rural Patients. Comput Inform Nurs. May 8 2014.  
19. Holland DE, Vanderboom CE, Ingram CJ, Dose AM, Wild EM, Bowles KH. Sharing the 
journey: Technology-enhanced transitional palliative care for rural patients/families. 2014; 
http://h3it.org/proceedings/2014/9.html. Accessed August 11, 2015.  
20. Meleis AI. Transitions theory : middle-range and situation-specific theories in nursing research 
and practice. New York: Springer Pub. Co.; 2010.  
21. Morrissey MB, Herr K, Levine C. Public health imperative of the 21st century: innovations in 
palliative care systems, services, and supports to improve health and well-being of older 
americans. Gerontologist. Apr 2015;55(2):245-251.  
22. Seals E. Caregiving in Rural America. 2006.  
23. National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality 
palliative care. 2013; http://www.hpna.org/Item_Details.aspx?ItemNo=1-934654-35-3.  
24. Meier DE. Measuring Quality of Care for the Sickest Patients. 2015; 
https://hbr.org/2015/09/measuring-quality-of-care-for-the-sickest-patients. Accessed September 
23, 2015.  

25. El-Jawahri A, Greer JA, Temel JS. Does Palliative Care Improve Outcomes for Patients with 
Incurable Illness? A Review of the Evidence. J Support Oncol. 2011;9(3):87-94. 
26. Bakitas M, Lyons KD, Hegel MT, et al. The project ENABLE II randomized controlled trial to 
improve palliative care for rural patients with advanced cancer: baseline findings, methodological 
challenges, and solutions. Palliat Support Care. Mar 2009;7(1):75-86.  
27. Meier DE, Cassel JB. Palliative care's positive outcomes. Trustee. Mar 2011;64(3):10-14, 11.  
28. Casarett D, Pickard A, Bailey FA, et al. A nationwide VA palliative care quality measure: the 
family assessment of treatment at the end of life. J Palliat Med. Jan-Feb 2008;11(1):68-75.  
29. Temel JS, Greer JA, Muzikansky A, et al. Early palliative care for patients with metastatic non-
small-cell lung cancer. New England Journal of Medicine. Aug 19 2010;363(8):733-742.  
30. Brumley RD, Enguidanos S, Cherin DA. Effectiveness of a home-based palliative care 
program for end-of-life. J Palliat Med. Oct 2003;6(5):715-724.  
31. Brumley R, Enguidanos S, Jamison P, et al. Increased satisfaction with care and lower costs: 
results of a randomized trial of in-home palliative care. J Am Geriatr Soc. Jul 2007;55(7):993-
1000.  
32. Meier DE, Beresford L. Outpatient clinics are a new frontier for palliative care. J Palliat Med. 
Jul 2008;11(6):823-828.  
33. Robinson CA, Pesut B, Bottorff JL, Mowry A, Broughton S, Fyles G. Rural Palliative Care: A 
Comprehensive Review. J Palliat Med. Feb 13 2009.  
34. Stratis Health. Minnesota Rural Palliative Care Initiative--Building Palliative Care Capacity in 
Rural Minnesota. 2011; 
http://www.stratishealth.org/documents/PC_Stratis_Health_MRPCI_Final_Report_2011_06.pdf. 
Accessed July 22, 2013.  
35. Minnesota Department of Administration. State Demographic Center. 2013; 
http://www.demography.state.mn.us/. Accessed July 22, 2013.  
36. Sims-Gould J, Byrne K, Hicks E, Khan K, Stolee P. Examining "success" in post-hip fracture 
care transitions: a strengths-based approach. J Interprof Care. May 2012;26(3):205-211.  
37. Coleman EA, Boult C. Improving the quality of transitional care for persons with complex care 
needs: Position statement of The American Geriatrics Society Health Care Systems Committee. 
Journal of the American Geriatrics Society. 2003;51:556-557.  
38. Coleman EA. Falling through the cracks: Challenges and opportunities for improving 
transitional care for persons with continuous complex care needs. Journal of the American 
Geriatrics Society. 2003;51(4):549-555.  
39. Naylor MD. Comprehensive discharge planning for the elderly. Res Nurs Health. Oct 
1990;13(5):327-347.  
40. Jackson MF. Discharge planning: Issues and challenges for gerontological nursing. A critique 
of the literature. Journal of Advanced Nursing. 1994;19:492-502.  
41. Forster AJ, Clark HD, Menard A, et al. Adverse events among medical patients after discharge 
from hospital. CMAJ. Feb 3 2004;170(3):345-349.  
42. Bixby MB, Naylor MD. Try this: best practices in nursing care to older adults. The Transitional 
Care Model (TCM): hospital discharge screening criteria for high risk older adults. MEDSURG 
Nursing. 2010 Jan-Feb 2010;19(1):[62-63].  
43. Brooten D, Youngblut JM, Deatrick J, Naylor M, York R. Patient problems, advanced practice 
nurse (APN) interventions, time and contacts among five patient groups. J Nurs Scholarsh. 
2003;35(1):73-79.  
44. Foust JB, Naylor MD, Boling PA, Cappuzzo KA. Opportunities for improving post-hospital 
home medication management among older adults. Home Health Care Serv Q. 2005;24(1-2):101-
122.  
45. Naylor MD. Transitional care of older adults. Annu Rev Nurs Res. 2002;20:127-147.  
46. Naylor MD, Brooten DA, Campbell RL, et al. Transitional care of older adults hospitalized with 
heart failure: a randomized, controlled trial. Journal of the American Geriatrics Society. 
2004;52(5):675-684.  
47. Naylor MD, Marcille J. Managing the transition from the hospital. Managed care (Langhorne, 
Pa.). Jun 2014;23(6):27-30.  
48. Naylor MD, Keating SA. Transitional care: Moving patients from one care setting to another. 
American Journal of Nursing. 2009;108(9S):58-63.  

49. Naylor MD, Brooten D, Campbell R, et al. Comprehensive discharge planning and home 
follow-up of hospitalized elders: a randomized clinical trial. Jama. Feb 17 1999;281(7):613-620.  
50. Naylor MD, Brooten D, Jones R, Lavizzo-Mourey R, Mezey M, Pauly M. Comprehensive 
discharge planning for hospitalized elderly: A randomized clinical trial. Annals of Internal Medicine. 
1994;120:999- 
51. Field MJ. Telemedicine: a guide to assessing telecommunications in health care. Washington, 
D.C.: National Academy Press; 1996.  
52. Coye MJ, Haselkorn A, DeMello S. Remote patient management: technology-enabled 
innovation and evolving business models for chronic disease care.[Erratum appears in Health Aff 
(Millwood). 2009 Jan-Feb;28(1) doi: 10.1377/hlthaff.28.1.126]. Health Affairs. Jan-Feb 
2009;28(1):126-135.  
53. Vanderboom CE, Vincent A, Luedtke CA, Rhudy LM, Bowles KH. Feasibility of interactive 
technology for symptom monitoring in patients with fibromyalgia. Pain Manag Nurs. Sep 
2014;15(3):557-564.  
54. Brennan PF, Burke L, Casper G, et al. Creating technology-enhanced practice: A university-
home care-corporate alliance. Studies in Health Technology & Informatics. 2006;122:644-648.  
55. Dansky KH, Bowles KH. Impact of Telehealth on Heart Failure Outcomes. Circulation. 
2007;113(21):794.  
56. Bowles KH, Baugh AC. Applying research evidence to optimize telehomecare. Journal of 
Cardiovascular Nursing. Jan-Feb 2007;22(1):5-15.  
57. Murray E, Burns J, See TS, Lai R, Nazareth I. Interactive Health Communication Applications 
for People with Chronic Disease (Review). The Cochrane Collaboration. 2009.  
58. Coen Buckwalter K, Lindsey Davis L, Wakefield BJ, Kienzle MG, Ann Murray M. Telehealth for 
Elders and Their Caregivers in Rural Communities. Family and Community Health. 2002;25(3):31-
40.  
59. Levine C, Rutberg, J., Jack, B., & Cancino R. Tool 7: Understanding and Enhancing the Role 
of Family Caregivers in the Re-Engineered Discharge. 2014. 
http://www.bu.edu/fammed/projectred/Project%20RED%20Revised%20Toolkit%209-
2012/REDTool7FamilyCaregiversUnitedHospital%20Fund.pdf. Accessed September 8, 2015.  
60. Coleman EA, Roman SP, Hall KA, Min SJ. Enhancing the care transitions intervention protocol 
to better address the needs of family caregivers. J Healthc Qual. Jan-Feb 2015;37(1):2-11.  
61. Thomas K, Hudson P, Oldham L, Kelly B, Trauer T. Meeting the needs of family carers: an 
evaluation of three home-based palliative care services in Australia. Palliat Med. Mar 
2010;24(2):183-191.  
62. Hudson P, Aranda S, McMurray N. Intervention development for enhanced lay palliative 
caregiver support - the use of focus groups. Eur J Cancer Care (Engl). Dec 2002;11(4):262-270.  
63. Northouse LL, Katapodi MC, Song L, Zhang L, Mood DW. Interventions with family caregivers 
of cancer patients: meta-analysis of randomized trials. CA: a cancer journal for clinicians. Sep-Oct 
2010;60(5):317-339.  
64. Caress AL, Chalmers K, Luker K. A narrative review of interventions to support family carers 
who provide physical care to family members with cancer. Int J Nurs Stud. Nov 2009;46(11):1516-
1527.  
65. Hopkinson JB, Brown JC, Okamoto I, Addington-Hall JM. The effectiveness of patient-family 
carer (couple) intervention for the management of symptoms and other health-related problems in 
people affected by cancer: a systematic literature search and narrative review. J Pain Symptom 
Manage. Jan 2012;43(1):111-142.  
66. Gibson M, Kelly K, Kaplan A. Family Caregiving and Transitional Care: A Critical Review. 
2012; https://caregiver.org/family-caregiving-and-transitional-care-critical-review-2012. Accessed 
December 10, 2014.  
67. Benzar E, Hansen L, Kneitel AW, Fromme EK. Discharge planning for palliative care patients: 
a qualitative analysis. J Palliat Med. Jan 2011;14(1):65-69.  
68. Hudson P, Remedios C, Zordan R, et al. Clinical Practice Guidelines for the Psychosocial and 
Bereavement Support of Family Caregivers of Palliative Care Patients. In: Care CfP, ed. St 
Vincent's Hospital. Melbourne, Australia2010.  
69. Center to Advance Palliative Care. Improving the Care of Serious Illness Through Innovative 
Payer-Provider Partnerships: A Palliative Care Tooklit and Resource Guide. 2014; 
https://www.capc.org/payers/palliative-care-payer-provider-toolkit/. Accessed May 6, 2015.  

70. Levine C, Halper D, Rutberg J, Gould DA. Engaging Family Caregivers as Partners in 
Transitions: TC-QuIC: A Quality Improvement Collaborative. 2013; 
http://www.uhfnyc.org/publications/880905. Accessed September 11, 2015.  
71. Hudson P. Positive aspects and challenges associated with caring for a dying relative at 
home. Int J Palliat Nurs. Feb 2004;10(2):58-65; discussion 65.  
72. Hudson P. Improving support for family carers: key implications for research, policy and 
practice. Palliat Med. Jul 2013;27(7):581-582. 
73. Hudson P, Collins A, Bostanci A, Willenberg L, Stephanov N, Phillip J. Toward a systematic 
approach to assessment and care planning in palliative care: A practical review of clinical tools. 
Palliat Support Care. Jun 11 2015:1-13.  
74. Hudson P, Quinn K, Kristjanson L, et al. Evaluation of a psycho-educational group programme 
for family caregivers in home-based palliative care. Palliat Med. Apr 2008;22(3):270-280.  
75. Hudson P, Thomas T, Quinn K, Cockayne M, Braithwaite M. Teaching family carers about 
home-based palliative care: final results from a group education program. J Pain Symptom 
Manage. Aug 2009;38(2):299-308.  
76. Hudson P, Trauer T, Kelly B, et al. Reducing the psychological distress of family caregivers of 
home based palliative care patients: longer term effects from a randomised controlled trial. 
Psychooncology. Jan 2015;24(1):19-24.  
77. Hudson PL, Aranda S, Hayman-White K. A psycho-educational intervention for family 
caregivers of patients receiving palliative care: a randomized controlled trial. J Pain Symptom 
Manage. Oct 2005;30(4):329-341.  
78. Hudson PL, Hayman-White K, Aranda S, Kristjanson LJ. Predicting family caregiver 
psychosocial functioning in palliative care. J Palliat Care. Autumn 2006;22(3):133-140.  
79. Hudson PL, Trauer T, Graham S, et al. A systematic review of instruments related to family 
caregivers of palliative care patients. Palliat Med. Oct 2010;24(7):656-668.  
80. Waldron EA, Janke EA, Bechtel CF, Ramirez M, Cohen A. A systematic review of 
psychosocial interventions to improve cancer caregiver quality of life. Psychooncology. Jun 
2013;22(6):1200-1207.  
81. Bakitas M. Charting Your Course-A Guide for People Living with Cancer-CAREGIVER GUIDE. 
2011.  
82. Bakitas M, Bishop MF, Caron P, Stephens L. Developing successful models of cancer 
palliative care services. Semin Oncol Nurs. Nov 2010;26(4):266-284.  
83. Meier DE. Increased access to palliative care and hospice services: opportunities to improve 
value in health care. Milbank Q. Sep 2011;89(3):343-380.  
84. Naylor MD, Aiken LH, Kurtzman ET, Olds DM, Hirschman KB. The Care Span: The 
Importance of Transitional Care in Achieving Health Reform. 2011.  
85. Chi NC, Demiris G. A systematic review of telehealth tools and interventions to support family 
caregivers. J Telemed Telecare. Jan 2015;21(1):37-44.  
86. Demiris G. Electronic home healthcare: concepts and challenges. Int J Electron Healthc. 
2004;1(1):4-16.  
87. Demiris G, Parker Oliver D, Kruse RL, Wittenberg-Lyles E. Telehealth group interactions in the 
hospice setting: assessing technical quality across platforms. Telemed J E Health. Apr 
2013;19(4):235-240.  
88. Oliver DP, Demiris G. Comparing face-to-face and telehealth-mediated delivery of a 
psychoeducational intervention: a case comparison study in hospice. Telemed J E Health. Jul-Aug 
2010;16(6):751-753.  
89. Oliver DP, Demiris G, Wittenberg-Lyles E, Washington K, Day T, Novak H. A systematic 
review of the evidence base for telehospice. Telemed J E Health. Jan-Feb 2012;18(1):38-47.  
90. Washington KT, Pike KC, Demiris G, Oliver DP. Unique characteristics of informal hospice 
cancer caregiving. Support Care Cancer. Jul 2015;23(7):2121-2128.  
91. Wittenberg-Lyles E, Kruse RL, Oliver DP, Demiris G, Petroski G. Exploring the collective 
hospice caregiving experience. J Palliat Med. Jan 2014;17(1):50-55.  
92. Dansky KH, Bowles KH. Lessons learned from a telehomecare project. Caring : National 
Association for Home Care magazine. 2002;21(4):18-22.  
93. AARP NAfCa. New Study Identifies Challenges for Family Caregivers, Caregiving Solutions 
Needed. 2015; http://www.prweb.com/releases/2015/06/prweb12765231.htm. Accessed 
September 1, 2015.  

94. Grady PA, Gullatte M. The 2014 National Nursing Research Roundtable: The science of 
caregiving. Nurs Outlook. Sep-Oct 2014;62(5):362-365.  
95. Research NIoN. Bringing Science to Life - NINR Strategic Plan. 2011.  
96. Meleis AI, Sawyer LM, Im EO, Hilfinger Messias DK, Schumacher K. Experiencing transitions: 
an emerging middle-range theory. ANS Adv Nurs Sci. Sep 2000;23(1):12-28.  
97. Geary CR, Schumacher KL. Care transitions: integrating transition theory and complexity 
science concepts. ANS Adv Nurs Sci. Jul-Sep 2012;35(3):236-248.  
98. Schumacher KL, Stewart BJ, Archbold PG. Conceptualization and measurement of doing 
family caregiving well. Image J Nurs Sch. 1998;30(1):63-69. 
99. Schumacher KL, Stewart BJ, Archbold PG. Mutuality and preparedness moderate the effects 
of caregiving demand on cancer family caregiver outcomes. Nursing research. Nov-Dec 
2007;56(6):425-433.  
100. Park EO, Yates BC, Schumacher KL, Meza J, Kosloski K, Pullen C. Caregiving demand and 
difficulty in older adult spousal caregivers after coronary artery bypass surgery. Geriatr Nurs. Sep-
Oct 2013;34(5):383-387.  
101. Park EO, Schumacher KL. The state of the science of family caregiver-care receiver 
mutuality: a systematic review. Nursing inquiry. Jun 2014;21(2):140-152.  
102. Glajchen M, Kornblith A, Homel P, Fraidin L, Mauskop A, Portenoy RK. Development of a 
brief assessment scale for caregivers of the medically ill. J Pain Symptom Manage. Mar 
2005;29(3):245-254.  
103. Noonan A, Tennstedt S. Meaning in care-giving and its contribution to caregiver well-being. 
Gerontologist. 1997;37:785-794.  
104. Beach SR, Schulz R, Yee J, Jackson S. Negative and positive effects of caring for a disabled 
spouse: Longitudinal findings from the caregiver health effects study. Psychology and aging. 
2000;15(2):259-271.  
105. Gitlin LN, Belle SH, Burgio LD, et al. Effect of multicomponent interventions on caregiver 
burden and depression: the REACH multisite initiative at 6-month follow-up. Psychology and 
aging. Sep 2003;18(3):361-374.  
106. Sudore RL, Stewart AL, Knight SJ, et al. Development and validation of a questionnaire to 
detect behavior change in multiple advance care planning behaviors. PLoS One. 
2013;8(9):e72465.  
107. Benjamin Rose Institute on Aging. Selected Caregiver Assessment Measures: A Resource 
Inventory for Practitioners. 2012; 
https://www.caregiver.org/sites/caregiver.org/files/pdfs/SelCGAssmtMeas_ResInv_FINAL_12.10.1
2.pdf. Accessed July 11, 2014.  
108. Degner LF, Sloan JA, Venkatesh P. The Control Preferences Scale. Can J Nurs Res. Fall 
1997;29(3):21-43.  
109. Parker RM, Baker DW, Williams MV, Nurss JR. The test of functional health literacy in adults: 
a new instrument for measuring patients' literacy skills. J Gen Intern Med. Oct 1995;10(10):537-
541.  
110. Ewing G, Grande G. Development of a Carer Support Needs Assessment Tool (CSNAT) for 
end-of-life care practice at home: a qualitative study. Palliat Med. Mar 2013;27(3):244-256.  
111. Weiss ME, Costa LL, Yakusheva O, Bobay KL. Validation of Patient and Nurse Short Forms 
of the Readiness for Hospital Discharge Scale and Their Relationship to Return to the Hospital. 
Health Serv Res. Jul 16 2013.  
112. Archbold PG, Stewart BJ, Greenlick MR, Harvath T. Mutuality and preparedness as 
predictors of caregiver role strain. Res Nurs Health. Dec 1990;13(6):375-384.  
113. Lorig KR. Outcome measures for health education and other health care interventions. 
Thousand Oaks [u.a.]: Sage; 1998.  
114. Glasgow RE, Wagner EH, Schaefer J, Mahoney LD, Reid RJ, Greene SM. Development and 
validation of the Patient Assessment of Chronic Illness Care (PACIC). Med Care. May 
2005;43(5):436-444.  
115. Wolff JL, Giovannetti ER, Boyd CM, et al. Effects of guided care on family caregivers. 
Gerontologist. Aug 2010;50(4):459-470.  
116. Weitzner MA, Jacobsen PB, Wagner Jr H, Friedland J, Cox C. The Caregiver Quality of Life 
Index–Cancer (CQOLC) scale: development and validation of an instrument to measure quality of 
life of the family caregiver of patients with cancer. Quality of Life Research. 1999;8(1):55-63.  

117. Weiss M, Johnson NL, Malin S, Jerofke T, Lang C, Sherburne E. Readiness for discharge in 
parents of hospitalized children. Journal of Pediatric Nursing. Aug 2008;23(4):282-295.  
118. Okun A, Stein RE, Bauman LJ, Silver EJ. Content validity of the Psychiatric Symptom Index, 
CES-depression Scale, and State-Trait Anxiety Inventory from the perspective of DSM-IV. Psychol 
Rep. Dec 1996;79(3 Pt 1):1059-1069.  
119. Montgomery RV, Stull DE, Borgatta EF. Measurement and the analysis of burden. Res 
Aging. Mar 1985;7(1):137-152.  
120. Administration HRaS. Find Shortage Areas: MUA/P by State and County. 
http://muafind.hrsa.gov/index.aspx. Accessed September 3, 2015.  
121. Administration HRaS. List of Rural Counties and Designated Eligible Census Tracts in 
Metropolitan Counties. ftp://ftp.hrsa.gov/ruralhealth/Eligibility2005.pdf. 
122. Lindquist R, Wyman JF, Talley KM, Findorff MJ, Gross CR. Design of control-group 
conditions in clinical trials of behavioral interventions. J Nurs Scholarsh. 2007;39(3):214-221.  
123. Dose AM, Rhudy LM, Holland DE, Olson ME. The Experience of Transition From Hospital to 
Home Hospice: Unexpected Disruption. Journal of Hospice & Palliative Nursing. 2011;13(6):394-
402.  
124. Casarett DJ, Crowley R, Hirschman KB. Surveys to assess satisfaction with end-of-life care: 
does timing matter? J Pain Symptom Manage. Feb 2003;25(2):128-132.  
125. DiBiasio EL, Clark MA, Gozalo PL, Spence C, Casarett DJ, Teno JM. Timing of Survey 
Administration After Hospice Patient Death: Stability of Bereaved Respondents. J Pain Symptom 
Manage. Jul 2015;50(1):17-27.  
126. Archbold PG, Stewart BJ, Greenlick MR, Harvath TA. The Clinical Assessment of Mutuality 
and Preparedness in Family Caregivers to Frail Older People. New York, NY: Springer Publishing 
Company; 1992:328-339.  
127. Archbold PG, Stewart BJ, Miller LL, et al. The PREP system of nursing interventions: a pilot 
test with families caring for older members. Preparedness (PR), enrichment (E) and predictability 
(P). Res Nurs Health. Feb 1995;18(1):3-16.  
128. Schumacher KL, Stewart BJ, Archbold PG, Caparro M, Mutale F, Agrawal S. Effects of 
caregiving demand, mutuality, and preparedness on family caregiver outcomes during cancer 
treatment. Oncol Nurs Forum. Jan 2008;35(1):49-56.  
129. Henriksson A, Hudson P, Ohlen J, et al. Use of the Preparedness for Caregiving Scale in 
Palliative Care: A Rasch Evaluation Study. J Pain Symptom Manage. May 21 2015.  
130. Lorig K, Stewart A, Ritter P, Gonzalez J, Laurent D, Lynch J. Outcome measures for health 
education and other health care interventions. Thousand Oaks: Sage Publications; 1996.  
131. Glasgow RE, Whitesides H, Nelson CC, King DK. Use of the Patient Assessment of Chronic 
Illness Care (PACIC) with diabetic patients: relationship to patient characteristics, receipt of care, 
and self-management. Diabetes Care. Nov 2005;28(11):2655-2661.  
132. Wagner EH, Bennett SM, Austin BT, Greene SM, Schaefer JK, Vonkorff M. Finding common 
ground: patient-centeredness and evidence-based chronic illness care. J Altern Complement Med. 
2005;11 Suppl 1:S7-15.  
133. Schmittdiel J, Mosen DM, Glasgow RE, Hibbard J, Remmers C, Bellows J. Patient 
Assessment of Chronic Illness Care (PACIC) and improved patient-centered outcomes for chronic 
conditions. J Gen Intern Med. Jan 2008;23(1):77-80.  
134. Lutz BJ. Patient-centered care: understanding its interpretation and implementation in health 
care. Scholarly Inquiry for Nursing Practice. 2000;14(2).  
135. Deeken JF, Taylor KL, Mangan P, Yabroff KR, Ingham JM. Care for the caregivers: a review 
of self-report instruments developed to measure the burden, needs, and quality of life of informal 
caregivers. J Pain Symptom Manage. Oct 2003;26(4):922-953.  
136. Bakas T, Champion V. Development and psychometric testing of the Bakas Caregiving 
Outcomes Scale. Nursing research. Sep-Oct 1999;48(5):250-259.  
137. Bakas T, Champion V, Perkins SM, Farran CJ, Williams LS. Psychometric testing of the 
revised 15-item Bakas Caregiving Outcomes Scale. Nursing research. Sep-Oct 2006;55(5):346-
355.  
138. Weiss ME, Ryan P, Lokken L. Validity and reliability of the Perceived Readiness for 
Discharge After Birth Scale. J Obstet Gynecol Neonatal Nurs. Jan-Feb 2006;35(1):34-45.  
139. Maloney LR, Weiss ME. Patients' perceptions of hospital discharge informational content. 
Clin Nurs Res. Aug 2008;17(3):200-219.  

140. Robert Wood Johnson Foundation. Health care's blind side: The overlooked connection 
between social needs and good health. 2011.  
141. Institute of Medicine. Living well with chronic illness: A call for public health action. 
Washington, DC: The National Academies Press; 2012.  
142. Calvillo-King L, Arnold D, Eubank KJ, et al. Impact of social factors on risk of readmission or 
mortality in pneumonia and heart failure: systematic review. J Gen Intern Med. Feb 
2013;28(2):269-282.  
143. Weiss ME, Piacentine LB, Lokken L, et al. Perceived readiness for hospital discharge in adult 
medical-surgical patients. Clinical Nurse Specialist. 2007;21(1):31-42.  
144. Irwin M, Artin KH, Oxman MN. Screening for depression in the older adult: criterion validity of 
the 10-item Center for Epidemiological Studies Depression Scale (CES-D). Arch Intern Med. Aug 
9-23 1999;159(15):1701-1704. 
145. Zeng L, Bedard G, Cella D, et al. Preliminary Results of the Generation of a Shortened 
Quality-of-Life Assessment for Patients with Advanced Cancer: The FACIT-Pal-14. J Palliat Med. 
Apr 16 2013.  
146. Zhang W, O'Brien N, Forrest JI, et al. Validating a shortened depression scale (10 item CES-
D) among HIV-positive people in British Columbia, Canada. PLoS One. 2012;7(7):e40793.  
147. Ramsey S, Willke R, Briggs A, et al. Good research practices for cost-effectiveness analysis 
alongside clinical trials: the ISPOR RCT-CEA Task Force report. Value in health : the journal of 
the International Society for Pharmacoeconomics and Outcomes Research. Sep-Oct 
2005;8(5):521-533.  
148. St Sauver JL, Grossardt BR, Yawn BP, et al. Data resource profile: the Rochester 
Epidemiology Project (REP) medical records-linkage system. International journal of 
epidemiology. Dec 2012;41(6):1614-1624.  
149. Melton LJ. History of the Rochester Epidemiology Project. Mayo Clinic Proceedings. 
1996;71:266-274.  
150. Cook D, Thompson JE, Habermann EB, et al. From 'solution shop' model to 'focused factory' 
in hospital surgery: increasing care value and predictability. Health Aff (Millwood). May 
2014;33(5):746-755.  
151. Woelk JL, Borah BJ, Trabuco EC, Heien HC, Gebhart JB. Cost differences among robotic, 
vaginal, and abdominal hysterectomy. Obstetrics and gynecology. Feb 2014;123(2 Pt 1):255-262.  
152. Leibson CL, Long KH, Maraganore DM, et al. Direct medical costs associated with 
Parkinson's disease: a population-based study. Movement disorders : official journal of the 
Movement Disorder Society. Nov 2006;21(11):1864-1871.  
153. Lipscomb J, Ancukiewicz M, Parmigiani G, Hasselblad V, Samsa G, Matchar DB. Predicting 
the cost of illness: a comparison of alternative models applied to stroke. Medical decision making : 
an international journal of the Society for Medical Decision Making. Apr-Jun 1998;18(2 
Suppl):S39-56.  
154. Palliative Care Outcome Scale. 2015; http://pos-pal.org/. Accessed September 9, 2015.  
155. Dupont WD. Statistical nodeling for biomedical resaerchers: A simple approach to the 
analysis of complex data. Cambridge, UK: Cambridge University Press; 2009.  
156. Krippendorff K. Content analysis: an introduction to its methodology. Thousand Oaks, Calif.: 
SAGE Publications; 2013.  
157. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, 
procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105-112.  
158. Cameron AC, Trivedi PK. Regression analysis of count data. 2013.  
159. Blough D, Ramsey S. Using Generalized Linear Models to Assess Medical Care Costs. 
Health Services & Outcomes Research Methodology. 2000/06/01 2000;1(2):185-202.  
160. Boult C, Reider L, Leff B, et al. The effect of guided care teams on the use of health services: 
results from a cluster-randomized controlled trial. Arch Intern Med. 2011;171(5):460-466.  
161. Brown KE, Levine JM, Fiellin DA, O'Connor P, Sledge WH. Primary intensive care: pilot study 
of a primary care-based intervention for high-utilizing patients. Dis Manag. Jun 2005;8(3):169-177.  
162. Holland DE, Harris MR, Leibson CL, Pankratz VS, Krichbaum KE. Development and 
validation of a screen for specialized discharge planning services. Nursing research. Jan-Feb 
2006;55(1):62-71.  
163. Holland DE, Hemann MA. Standardizing Discharge Planning at the Mayo Clinic. The Joint 
Commission Journal on Quality and Patient Safety. January 2011;37(1):29-36.  

164. Holland DE, Mistiaen P, Knafl GJ, Bowles KH. The English Translation and Testing of the 
Problems After Discharge Questionnaire. Social Work Research. 2011;35(2):107-116.  
165. Dose A, Holland D, Vanderboom C, Ingram C, Wild E. Sharing the Journey: Technology-
Enhanced Transitional Palliative Care for Rural Patients/Caregivers (S728). Journal of Pain and 
Symptom Management. 2015;49(2):422. 
166.  Tarlow, B. J., Wisniewski, S. R., Belle, S. H., Rubert, M., Ory, M. G., & Gallagher-
Thompson, D. (2004). Positive aspects of caregiving: Contributions of the REACH project to the 
development of new measures for Alzheimer’s caregiving. Research on aging, 26(4), 429-453. 
 
 

APPENDIX A: Intervention 
 
 
Document 
  Page 
Intervention Detail ………………………………………………………………………………………1 - 3 
Readiness Plans ………………………………………………………………………………………4 - 56 
Basic Tips in Caring for a Loved One at Home…………………………………………………4 - 5 
Lack of Sleep……………………………………………………………………………………….6 - 7 
Mindful Breathing Stress Reduction …………………………………………………………………8 
Managing Fatigue………………………………………………………………………………...9 - 10 
Food and Fluid Issues …………………………………………………………………………11 - 12 
Grief and Mourning……………………………………………………………………………..13 – 14 
Potential Bleeding……………………………………………………………………………….15 - 16 
Managing Anxiety……………………………………………………………………………….17 - 18 
Bladder Incontinence…………………………………………………………………………...19 - 20 
Bowel Incontinence……………………………………………………………………………..21 - 22 
Constipation……………………………………………………………………………………..23 – 25 
Delirium…………………………………………………………………………………………..26 - 27 
Depression……………………………………………………………………………………….28 - 29 
Nausea and Vomiting…………………………………………………………………………..30 – 31 
Constipation – Opioids………………………………………………………………………….32 - 34 
Managing Pain…………………………………………………………………………………..35 - 36 
Managing Restlessness………………………………………………………………………..37 - 38 
Managing Shortness of Breath………………………………………………………………...39 - 40 
Preparing the Children………………………………………………………………………….41 - 46 
Psychological Distress……………………………………………………………...................47 - 48 
Self-Care…………………………………………………………………………………………49 - 50 
Skin Care………………………………………………………………………………………...51 - 52 
Social Distress…………………………………………………………………………………..53 - 54 
Spiritual Distress………………………………………………………………………………...55 - 56 
 

 
 
Technology-Enhanced Transitional Palliative Care for Family Caregivers in Rural Settings Detailed Intervention 
Protocol 
 
Part 1. Pre-discharge 
• 
Hospital visit within 24 hours of study enrollment 
o Establish relationship with family caregiver (FCG) and care recipient (if able) 
o Assess FCG needs including:  knowledge and skills needed for skillful caregiving, FCG physical and emotional 
self-care needs, involvement of secondary caregivers and/or formal service providers to support the FCG 
o Begin transitional care planning with acute care staff, FCG and local community service providers 
• 
Daily hospital visits to patient 
o Work with FCG, multidisciplinary palliative care team, and community providers to complete Transitional Care 
Plan identifying local community resources to support caregiving including: 
▪ 
Caregiver/respite availability 
▪ 
Medication availability and plans for refills 
▪ 
Transportation home and to medical appointments 
▪ 
ADL support (as needed) including, personal care assistance, food availability/meal preparation, housekeeping 
▪ 
Equipment needs/delivery 
▪ 
Crisis prevention plan consistent with caregiver/care recipient goals 
• 
FCG Readiness Plans 
o Develop individual-specific Readiness Plans to support FCG to effectively manage care-recipient’s symptoms 
▪ 
FCG Readiness Plans available for dealing with: anxiety, breathlessness, constipation, hypoglycemia, 
restlessness, shortness of breath. 
o Develop individual-specific Readiness Plans to support self-care of FCG 
▪ 
Examples of self-care plans include Caregiving Care for Yourself, Lack of Sleep, Mindful Breathing, 
Managing Anxiety/Uneasy Feelings 
• 
Day of discharge 
o Confirm FCG and patient readiness for discharge – understanding of patient care needs, physical and emotional 
readiness for caregiving,  plans for FCG self-care and respite are in place 
o Assure Palliative Care Team consensus on post discharge FCG Readiness Plans to support caregiver activities on 
behalf of the patient 
o Implement and coordinate Transitional Care Plan 
o Schedule first virtual visit 
• 
Document all problem-related assessments/interventions for each FCG encounter on study documentation forms 
 
Part 2. In-Home 
• 
Provide ongoing education, guidance and support to FCG for Transitional Care Plan to develop caregiving skills 
described above 
• 
Coordinate the implementation of transitional care plan 
o Communicate with local community resources to assure support services are in place and effective 
o Reassess continued appropriateness/outcomes of FCG Readiness Plans 
o Identify and address any new problems that develop 
• 
Reaffirm and provide education and anticipatory guidance for use of appropriate FCG Readiness Plans 
• 
Collaborate with primary care provider/specialty provider who will provide primary care related to goals of care 
• 
Coach FCG in preparation for care-recipient physician office visits 
• 
Provide additional virtual visits/phone calls to support FCG as needed during: 
o Transfer to hospice 
o Permanent nursing home placement 
o Death of care-recipient 
• 
Document all assessments/interventions for each FCG encounter on study documentation forms  
o The pre-discharge protocol will be reinstituted for the duration of the hospital stay. Virtual visits will begin again 
after hospital discharge. 
Review case weekly with palliative care study team members (MD, SW, Pharm) 
Final virtual visit - complete FCG transition to ongoing family, community and health care support 
If patient is rehospitalized during the 8-week study period 
 

 
 
Conducting TPC for FCG Intervention 
Initial and Ongoing during Part 1 and Part 2 
 
Assessments and Monitoring – Assess FCG’s priority emotional, self-care needs and caregiving support needs 
• 
Psychosocial 
o Mental health – anxiety or depression 
o Grief/anticipatory grief 
o Spirituality 
o Communicating with Healthcare & Community Resources 
o Social Contact 
o Role Change 
o Interpersonal Relationship 
o Other 
• 
Self-Care Needs 
o Nutrition 
o Physical activity 
o Sleep and Rest 
o Personal care 
o Condition specific needs (cardiac, respiratory, pain etc.) 
o Medication regimen 
o Residence (fall risk/ safety risks) 
• 
Caregiving Support 
o Caregiving skills 
o Continuity of care 
o Coping skills 
o Support system 
 
Care Coordination/Transition 
• 
Provide coordination, advocacy and referral for FCG during transition in collaboration with the palliative care 
team, other specialists, community services providers and other staff: 
o Facilitate community services for symptom management - medication availability, plan for refills, correct use 
o Communicate with health care and community service providers across care settings 
o Develop connections between family, primary care physician, specialists 
o Guide the FCG in the use of appropriate community resources 
o Promote FCG/provider/community communication 
o Coordinate care needs and community resources 
o Ensure food availability – services in place to obtain food and prepare meals 
o Facilitate decision to access hospice services as needed 
o Arrange for emergency services consistent with patient goals 
o Arrange for respite care as needed 
• 
Transition to usual care 
o Create a transition plan to usual care (local primary care or other health provider) 
o Create a post-transition care management plan 
o Provide a written summary of care to transition team (palliative care, primary care, oncologist, social worker, 
minister etc.) 
 
Teaching, Counseling and Guidance 
• 
Provide teaching, counseling, guidance regarding FCG educational needs and support that impact effective 
caregiving and a safe transition home 
• 
Determine family priorities and learning needs. Provide ongoing education to support development of caregiving 
skills: 
o Monitoring patient, subtle changes, written record 
o Interpreting changes, understand the meaning of symptom changes 
o Decision making considering multiple illness demands, self-care needs 
o Taking action - timing, routines, reminders 

 
 
o Making adjustments – food, environment, creative problem-solving 
o Accessing resources – takes initiative, makes needs known 
o Providing hands-on care 
o Working together with the care recipient 
o Negotiating the health care system 
• 
Provide ongoing education and support for use of Readiness Plans to:  LIST ALL PLANS HERE 
o  effectively manage care-recipient’s symptoms (anxiety, breathlessness, constipation, hypoglycemia, 
restlessness, seizures, shortness of breath and urinary tract infection) 
o Promote FCG self-care 
• 
Educate FCG about disease process, trajectory and care and safety needs 
• 
Set realistic interim goals for achieving preferences 
• 
Assure FCG understanding of prescribed instructions/therapies 
• 
Promote FCG adaptation by focusing on coaching, education, problem solving, and enlisting support of 
family/friends in Education 
o maintenance of  health and well-being and safety measures 
o teach strategies to maximize self-care 
o enlist support of family/friends/agencies to compensate for FCG time or functional deficiencies to provide 
care 
o counsel on need for consistent self-care activities to maintain health, well-being 
• 
Teach and build caregiver skills in navigating health system to meet needs 
o understand meaning of symptoms 
o understand roles and responsibilities of various formal providers of care 
• 
Teach communication skills 
o strategies to communicate effectively with healthcare providers and gain access to care when needed 
o clarification of goals/preferences of care and consequences of decisions 
• 
Assist with resources for ethical and legal aspects of care 
o discuss advance care planning 
o assure patient treatment goals are transferable and applicable across care settings 
• 
Psychosocial Guidance and Support for FCG 
o Promote mental health: 
▪ 
establish strategies to manage anxiety, depression 
▪ 
establish strategies to address psychological reactions of patient/FCG/family (stress and coping) 
▪ 
provide education and guidance to enhance FCG coping skills for responding to patient problems such as 
problem behaviors, anger, depression 
o Provide support for anticipatory grief 
▪ 
Grief plan 
o Foster quality of relationships and support systems 
▪ 
support spirituality 
▪ 
patient story – sense making 
o Promote use of Readiness Plans related to FCG self-care 
o Help caregiver connect with a community resources, support group as appropriate – face to face or on-line 
o Reduce amount of caregiving: encourage/arrange respite – in home, day care, institutional for holidays, 
temporary illness of caregiver, other demands 
o Advance care planning – goals of care 
 
References: 
Grady, P. A. and M. Gullatte (2014). "The 2014 National Nursing Research Roundtable: The science of caregiving." Nurs Outlook 
62(5): 362-365. 
Schulz, R. (2013). "Research priorities in geriatric palliative care: informal caregiving." Journal of Palliative Medicine 16(9): 1008-
1012. 
Deitrick, L. M., et al. (2011). "Delivering specialized palliative care in the community: a new role for nurse practitioners." Advances 
in Nursing Science 34(4): E23-36. 
Bakitas, M., et al. (2010). "Developing successful models of cancer palliative care services." Seminars in Oncology Nursing 26(4): 
266-284. 
Pearlin, L. I., et al. (1990). "Caregiving and the Stress Process: An Overview of Concepts and Their Measures." The Gerontologist 
30(5): 583-594. 

 
 
Basic Tips in Caring for a Loved One at Home 
Develop a plan 
It’s important to always think both short term (prescriptions are due for refill) and long term (the “what ifs”). You 
can’t anticipate every scenario, but being forward-thinking now will help you respond more quickly and 
effectively in an emergency. And don’t go it alone. Reach out to form a larger team of family, friends and others 
who can help you. 
Quick Tips: 
• 
Determine tasks and find consensus. Ask team members what they’re willing to do to contribute to your 
loved one’s care. Even if they live far away, they can handle jobs like paying bills, ordering prescriptions 
and scheduling medical appointments. Work with the team on a plan. 
• 
Be honest with yourself. What are you prepared to do? If you are uncomfortable with hands-on caregiving 
tasks, such as helping a loved one bathe, ask if another team member can step in. Or discuss whether 
there is money available to hire assistance. 
• 
Summarize the plan in writing. A written record will ensure that everyone on your team, including your 
loved one, is on the same page and avoids misunderstandings (while remembering, of course, that the 
plan will likely evolve as time passes). 
Manage health care needs 
Because hospitals have been discharging patients more abruptly to cut costs, tasks once reserved for nurses 
are now often handed off to caregivers, who sometimes get little or no training or instruction. Meanwhile the 
caregiver may be trying to keep track of a confusing mix of medications for a range of different ailments. The 
key is to stay organized and know how to get the help you need. 
Quick Tips: 
• 
Stay on top of meds. Create and maintain an updated medication list, with the name, dosage, prescribing 
doctor and other relevant information — a handy document to bring to medical appointments. AARP’s Rx 
app is one easy way to manage both your and your loved one’s prescriptions. 
• 
Be ready to handle medical tasks. Many family caregivers are required to handle challenging tasks at 
home, such as injecting medicines and inserting catheters. It’s important to get detailed instructions and 
even a demonstration of how to perform the procedure before you leave the hospital. 
• 
Set up home health services. Medicare and some other insurance plans will cover certain in-home services 
deemed medically necessary — such as doctor/nurse visits, X-rays, lab tests or therapies. A patient who is 
considered homebound, or unable to make an office visit, qualifies for these services on an ongoing basis. 
A healthy lifestyle 
Especially if you are sharing a home with the person you’re caring for — most likely a parent or spouse — 
caregiving can become all-consuming. You may find yourself playing nurse, coach, nutritionist and social 
director. All of these roles are important for maintaining your loved one’s mental and physical health. Just don’t 
neglect your own. 
Quick Tips: 
• 
Address social needs. Isolation and loneliness are associated with poorer health — so helping your loved 
one (and yourself!) avoid them is a key part of caregiving. You might find a community arts program for 
seniors, invite friends and family members to visit, or go out to eat together. 
• 
Manage nutrition. Be conscious of any dietary restrictions, and encourage your loved one to maintain a 
balanced diet, avoiding processed foods. Look into home-delivered meal programs and be sure your loved 
one drinks plenty of fluids; dehydration can cause fainting, headaches and more. 

 
 
• 
Encourage exercise. Staying mobile is crucial for maintaining — among other things — strength, balance, 
energy and brain health. Your loved one’s abilities will vary, and you should check with a doctor, but the 
routine may include activities such as walks, seated yoga, swimming or lifting small weights. 
• 
Establish boundaries. Especially if you and your spouse/partner are living with the person you’re caring for, 
it’s important that everyone has a level of privacy. Ideally, there is some separation between living areas 
and you can manage some time together as a couple. 
Get help 
Depending on the severity of your loved one’s problems, if you’re the primary caregiver you’re going to need 
either a bit of assistance or a whole lot of it. Rely on your team for help with some caregiving tasks and to fill in 
so you can take breaks. Don’t feel guilty: Your own health — and the quality of your caregiving — will suffer if 
you try to do everything and don’t take time to care for yourself. 
Quick Tips: 
• 
Understand caregiving’s costs: Your personal finances can take a hit from family caregiving—which might 
require time off of work, cutting back on hours, or passing up promotions, as well as paying for things like 
groceries and prescriptions for your loved one from your own pocket. Try to calculate these costs when 
budgeting. 
• 
Find out if your workplace is accommodating: Your employer may be fine with your working from home 
part- time or making certain adjustments to your schedule. If you need more time off, consider asking 
whether you are covered by the Family and Medical Leave Act. (Many are, but if you work for a small 
company or haven’t worked for your employer long, you may not be eligible.) 
• 
Give yourself a break: Sometimes caregivers feel guilty about taking time to have fun. Find ways to reduce 
your stress and enjoy yourself. Many turn to yoga or meditation, or arrange a weekly movie outing with 
friends. Think about what activities you find relaxing and/or energizing and put them on your to-do list. 
• 
Ask friends and family members for help. There are plenty of people in your life who may be happy, or at 
least willing, to lend a hand if you simply ask. Maybe someone can pick up a prescription for you on the 
next trip to the store, or a neighbor might stop by with dinner once a week. 
• 
Farm out some household jobs. Consider paying for relatively small services that will take a big load off, 
such as a weekly housecleaner, yard care or grocery delivery. If you live apart from your loved one, you 
might do the same for your own home. 
• 
Hire in-home care. You can go through an agency or hire a caregiver directly, but either way, be sure to 
check references and background, then monitor performance carefully (cautionary tales abound). It’s smart 
to rely on word of mouth; ask fellow caregivers for recommendations. 
• 
Watch your mental health. As a caregiver, you are at a higher risk for stress and depression. If either grows 
serious, seek help from a mental health professional. And consider reaching out to other caregivers for 
support and advice. 
 
Adapted from AARP Caregiving Guides (http://www.aarp.org/home-family/caregiving/care-guides/caregiving-
at-home.html#step1) and AARP Care-giving guides for first-time caregivers (http://www.aarp.org/home-
family/caregiving/care-guides/first-time-caregiving-guide.html#step5) 
 
 
 
 

 
 
Lack of Sleep: Energy Boosters for Sleepy Caregivers 
Avoid quick-fix snacks 
When your body is sleep-deprived, it craves carbohydrates and foods high in glucose or sodium. Snack foods 
like cookies, doughnuts, candies, crackers and chips taste good, but are just a quick, short-term energy fix. 
Ultimately, your body experiences a letdown. Likewise, eating too much of these foods is simply not healthy and 
can lead to an unwanted weight gain — so steer clear of these tasty snacks. Instead, eat an apple, orange, 
banana or a handful of nuts to satisfy your hunger and provide energy in a healthy way. 
Eat small, healthy meals 
A large, calorie-rich meal can make you feel sleepy and sluggish. Try eating several smaller meals throughout the 
day, and be sure to include high-protein foods. Protein provides and sustains energy for a longer time than simple 
carbohydrates. 
 
Consider enjoying one of these smaller, lighter meals: 
• 
Low-fat peanut butter spread on celery and apples 
• 
Scrambled egg whites served with a side dish of fresh fruit and whole-wheat toast 
• 
Tuna salad topped with lettuce and tomato on whole-wheat bread or pita 
• 
A cup or smoothie of low-fat yogurt mixed with blueberries or strawberries 
Don't overdo caffeine 
When you're tired and know you have many daily chores to do for your loved one, it may be tempting to double 
or triple your daily amount of caffeine. Unfortunately, it's likely this increase will keep you awake when it's time to 
go to sleep. Instead of upping your caffeine quotient, stick with the amount of caffeine you normally drink during 
the day, followed by a good night's rest. 
Grab a nap 
Napping is healthy. Studies show that an occasional short snooze may decrease a person's risk of coronary 
heart disease. If you can, make time for a nap. But be sure another person is present in your home to care for 
your loved one, particularly if he or she has special needs that require constant attention. 
Refresh with a cold shower 
While a soothing, hot shower may sound good, it can leave you sleepy. Instead, take a quick, cold shower or 
wash your face with cool water. This refreshing and revitalizing break can make you feel better all over and 
ready to take on your next caregiving task. 
Walk for 30 minutes 
A brisk walk can physically and mentally recharge you. It brings fresh, oxygenated blood to your muscles and 
organs, boosts your metabolism and lifts your spirits. This added energy can help sustain you throughout the 
day. 
Drink water 
Water is essential to your body's good health. Fifty-five to 60 percent of the average body is made up of water. 
Drinking water throughout the day protects you from dehydration. Mild dehydration (as little as a 1 to 2 percent 
loss of body water) can reduce your energy and cause weariness, making caregiving responsibilities even more 
challenging. 
 
 
 

 
 
Stay safe 
After a sleepless night, you should also recognize that you may have some limitations. Avoid activities that 
could compromise your safety and that of your loved one, such as: 
• 
Driving — especially for long distances. Driving is dangerous when you're tired. So if you need to take your 
loved one to a doctor's appointment or pick up a prescription at the pharmacy, you may want to reschedule 
or ask a friend for a ride. 
• 
Drinking alcohol — don't! It can make you even sleepier and compromise your caregiving duties. 
• 
Smoking — once again, don't! Many household fires are caused when someone falls asleep while smoking. 
Plan ahead 
Keep these survival tips in mind when you know you'll have to pull an all-nighter. 
• 
If you work outside the home, ask your boss if you can come in late the next day. 
• 
If you have children, ask if a neighbor can watch them. This can give you a few hours of relief before you 
have to stay up all night. 
• 
Arrange for another person to provide caregiving services to your loved one the next morning. 
• 
Try to get a good night's rest the night before. 
 
 
 
Adapted from AARP caregiver guides (http://www.aarp.org/home-family/caregiving/info-2014/energy-boosters-
sleepy-caregivers.html) 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
Mindful Breathing Stress Reduction 
Mindfulness is paying attention in a particular way: on purpose, in the present moment and 
nonjudgmentally. The practice of mindfulness leads to stress reduction through several 
mechanisms: (1) paying attention on purpose interrupts automatic negative thoughts; (2) paying 
attention in the present moment reduces rumination and worries; and (3) paying attention 
nonjudgmentally minimizes negative evaluations of the situation. 
Instructions: 
Make yourself comfortable. Relax your body. 
Close your eyes gently. 
Take two deep breaths slowly. Then breathe naturally. 
Notice the flow of air through your nose. Rest your attention gently on the breath. 
If you are distracted by any sounds, body sensations, thoughts or feelings, gently come back to your 
breath. 
Be aware of the breath for the next five minutes. 
 
 
Beng TS, Ahmad F, Loong LC, Chin LE, Zainal NZ, Guan NC, Ann YH, Li LM, Meng CB. Distress 
Reduction for Palliative Care Patients and Families With 5-Minute Mindful Breathing: A Pilot Study. 
The American Journal of Hospice & Palliative Care. 2016;33(6):555-60. doi: 
10.1177/1049909115569048. PubMed PMID: 25632044. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 

 
 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
Managing Fatigue 
 
 
What is Fatigue? 
Fatigue is a feeling of being tired or exhausted. Even after getting plenty of 
sleep or rest, people with fatigue feel like they have no energy. They are so 
tired that they cannot do the activities they normally enjoy. Fatigue is 
common among hospice and palliative care patients. Diagnosing reasons for 
fatigue may take time because fatigue can have many causes, including 
illness, emotions and treatments. Sometimes, fatigue can also come with 
feelings of depression or sadness. 
 
What are the Signs of Fatigue? 
◼ “Just too tired” to care about or do normal activities or routines 
◼ Lack of appetite or not having energy to eat 
◼ Sleepiness 
◼ Not talking 
◼ Depression 
 
What to Report to the Hospice/Palliative Care Team? 
◼ Any signs listed above. 
◼ Describe how bad the fatigue is by using a number scale from 0 to 10: 
0 = no fatigue to 10 = in bed all day 
◼ What makes the fatigue better or worse? 
◼ Spiritual, social or emotional concerns and worries. 
◼ Changes in appetite. 
◼ Any troubling symptoms that are not controlled, such as nausea, pain 
or bowel problems. 
◼ If you have experienced fatigue before, and what made it better. 
 
What Can be Done to Help Fatigue? 
Because fatigue can have many causes, it may take a number of 
actions to improve your symptoms. Talk to your healthcare team about 
your fatigue. The team will work with you and your family to find the causes 
for the fatigue. They will discuss treatments that may work best for you. 

 
 
Things you may do to help your fatigue: 
◼ Slowly increase your activity. Do so a little at a time to save energy. 
▪ Keep a log of which time of day seems to be your best time. 
▪ Plan and do activities during your best times of the day. 
▪ Avoid or delay activities that are not your priority. 
▪ Change your position. Do not just stay in bed. 
▪ Use sunlight or a light source to help your body feel more energized. 
▪ Try activities that restore your energy, such as music, meditation or 
spending time outdoors. 
▪ Allow caregivers to assist you with daily activities such as eating, 
moving or bathing, if necessary. 
▪ Talk with your family about your energy level and how they can help. 
◼ Rest and sleep better. 
▪ Listen to your body – rest as needed. 
▪ Try to keep a regular time to go to bed and to wake up. 
▪ Stay away from things that may keep you from sound sleep, such as 
lighting, or certain food, drinks and medicine taken too late in the day. 
▪ Avoid interrupted sleep time, and try to get continuous hours of sleep. 
▪ Plan rest times or naps during the late morning or mid-afternoon. 
▪ Avoid sleeping later in the afternoon, which could affect your 
nighttime sleep. 
▪ Ask if using oxygen when you sleep will help you to sleep better. 
◼ Increase food intake. 
▪ Try nutritious, high protein food. 
▪ Eat small, frequent meals. 
▪ Add protein supplements to foods or drinks. 
▪ Frequent mouth care (before and after meals). 
▪ Ask about the possible use of medications to stimulate your appetite or 
relieve fatigue. 
 
Other HPNA Teaching Sheets are available at www.goHPNA.org. 
 
 
References 
Martinez H, Berry P. Core Curriculum for the Hospice and Palliative Registered Nurse. 4th ed. Dubuque, 
IA: Kendall/Hunt Publishing Company; 2015. 
 
Borneman T. Assessment and management of cancer-related fatigue. J Hosp Palliat Nurs. 
2013;15(2):77–86. doi: 10.1097/NJH.0b013e318286dc19. 
 
Approved by the HPNA Education Committee August 2008. 
Revised by the HPNA Education Services Committee May 2011. 
Revised by the HPNA Professional Development Advisory Council October 2015. 
 
 
 
 
 

 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
Food and Fluid Issues at the End of Life 
 
 
What are nutrition(food) and hydration(fluids)? 
◼ Nutrition is the intake of calories to support the body 
◼ Hydration is the intake of fluids to support the body 
 
The desire to eat or drink at the end of life usually decreases. This is a natural 
response of the body as the organs are slowing down and it becomes difficult 
to manage the intake of food and/or fluids. 
 
What to report to the hospice/palliative care team? 
Tell them if the person: 
◼ Is unable to eat or drink 
◼ Has trouble swallowing 
◼ Has a dry mouth, tongue, or skin 
◼ Loses more than five pounds in a week. You may notice the weight 
loss by loose fitting clothes or dentures 
◼ Makes less urine 
◼ Becomes confused or drowsy 
 
What can be done? 
If there is a problem that can be managed, your health care team will discuss 
possible treatment options. It is normal for the person to lose interest in food 
and drink as the illness progresses. Treatment choices will depend on the 
person’s wishes and illness. 
 
Things you can do: 
◼ Encourage favorite foods and drinks, never force a person to eat or 
drink 
◼ Help family members and friends understand why eating and drinking 
may make the person uncomfortable as the body loses the ability to use 
nutrition and hydration 
◼ Offer drinks or sips often – at least every two hours 
◼ Clean the mouth often – a pleasant tasting mouth may make food taste 
better 
◼ Support the person’s decision if he/she refuses food and/or fluids 

 
◼ Encourage the person to rest before and after a meal 
◼ If dentures do not fit well, consult a dentist 
◼ Make mealtime a quiet and pleasant time 
◼ Offer small meals and use smaller dishes 
◼ If nausea is a problem, serve small portions of salty (not sweet), dry 
foods and clear liquids 
◼ Find other ways besides food and drink to show care and support. For 
example, offer the person a massage, apply lotion to his or her hands or 
feet, look through a picture album together 
 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Reference 
 
Core Curriculum for the Generalist Hospice and Palliative Nurse. 3rd edition. Dubuque, 
IA: Kendall/Hunt Publishing Company; 2010. 
 
Ferrell, B. R. & Coyle, N. (2006). Textbook of Palliative Care, 2nd ed. New York, NY: 
Oxford University Press. 
 
 
Approved by the HPNA Education Committee August 2008 
Reviewed by the Education Services Committee September 2012 
 
 
 

 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Grief and Mourning 
 
 
What is grief? 
Grief is the normal, emotional response to a loss. Each person grieves in his 
or her own way. There is no right way to grieve. There is no specific timetable 
for completing the grief process. While grief is often associated with the 
death of a loved one, it may also be experienced at the time of other losses 
such as the loss of function due to illness, loss of a pet, loss through divorce, 
loss of future dreams or role changes, and many other changes in life or 
health. 
 
What is mourning? 
Mourning is the outward expression of grief and includes rituals and customs 
such as funerals, viewing of the body, cremation and other customs. Each 
religion, culture, ethnicity and even different parts of the same country may 
have different expressions of mourning. 
 
What reactions may be expected during the grief process? 
Grief affects a person’s behavior, emotions, mental and physical well being. 
Among the physical experiences are such things as: 
◼ Tightness in the chest and throat, breathlessness 
◼ Headaches and dizziness 
◼ Exhaustion or weakness 
◼ Dry mouth 
◼ Muscle aches 
 
Among the thoughts are: 
◼ Disbelief and shock 
◼ Confusion and difficulty concentrating 
◼ Hallucinations 
◼ Preoccupation with the deceased 
 
Some of the emotions that are most often felt include: 
◼ Sadness or helplessness 
◼ Anger, which may be directed at God, family, health care providers, or 
the person who died 
◼ Shock, guilt, or anxiety 

 
 
◼ Numbness or ambivalence 
◼ Yearning 
◼ Shame 
◼ Fear 
 
Changes in behavior may include: 
◼ Sleeping more or less 
◼ Eating more or less 
◼ Withdrawal from usual activities 
◼ Crying 
◼ Over activity or keeping busy 
◼ Dreaming of the deceased 
 
What can be done to help the healing process? 
◼ Give yourself permission to grieve 
◼ Get plenty of rest, exercise and eat a healthy diet 
◼ Try to have at least one close person with whom you share 
your feelings and receive support 
◼ Consider keeping a journal to write down your feelings 
◼ Don’t push yourself to make changes in your life too quickly 
◼ Reminiscing and putting together a memory book provide an 
active way to heal 
◼ Get information about the normal grief process 
◼ Attend a community grief support group 
What should be reported? 
◼ Persistent intense grief reactions months after the loss (not 
just occasional intense grief reactions) 
◼ Thoughts of suicide or self-harm 
◼ Social isolation 
◼ Unplanned changes in weight 
◼ Increase in use of alcohol or drugs 
Your team cares about your well-being long after your loss. Take care to 
ensure you recover from your loss by creating a “new normal” way of life. 
Other HPNA Teaching Sheets on are available at 
www.HPNA.org. 
Reference 
Hospice and Palliative Nursing Assistant Core Curriculum. Pittsburgh, PA: Hospice 
and Palliative Nurses Association;2009. 
Approved by the HPNA Board of Directors July 2006. 
Reviewed by the HPNA Education Committee June 2009. 

 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
How to Prepare for Potential Bleeding 
 
 
Why Bleeding Happens, and What to Do if It Occurs 
Bleeding at the end of life can be distressing for the patient and family. 
Bleeding occurs for many different reasons, such as clotting disorders, 
tumors that erode (wear away) blood vessels, ulcers, and some lung or 
breathing conditions. Patients who have had previous bleeding are at 
increased risk for additional bleeds. It is important to have a plan in place to 
respond if bleeding occurs. Ask for education and support from the hospice 
staff. The primary goals are patient comfort, and reducing patient and family 
anxiety and fear. 
 
What are the Signs of Bleeding? 
◼ Previous bleeding from any part of the body, including the gums 
◼ Blood-tinged coughing or vomiting 
◼ Blood in the urine or stool 
◼ Nose bleeds 
◼ Skin with excessive bruising/many red dots on the skin 
 
What to Report to the Hospice/Palliative Care Team? 
Any change in frequency or quantity of bleeding symptoms should be 
reported to the hospice/palliative care team. 
 
What Can be Done for Bleeding? 
The hospice/palliative care team will talk to the patient and family about the 
chance for any bleeding and will provide help if bleeding occurs. 
 
Tips for patients who experience bleeding are: 
 
◼ Keep air humidified. 
◼ Have bandages/dressings to apply as directed by the care team. 
◼ Keep dark-colored towels or blankets and waterproof underpads ready 
for use if bleeding occurs. 
◼ Use non-sterile gloves to clean up after any bleeding episodes. 

 
 
Discuss with the hospice/palliative care team: 
 
◼ Stopping any medications or treatments that can cause bleeding (aspirin, 
Ibuprofen/Motrin, Vitamin E). 
◼ The use of cough medicine for patients with a cough. 
◼ Medications that can be prescribed to lessen the problem. 
◼ Medications already in the home that may provide sedation, anxiety relief and/or 
pain relief. 
 
 
Your hospice/palliative care team is available to make sure you have all the 
education and support you need if bleeding occurs. 
 
Other HPNA Teaching Sheets are available at www.gohpna.org. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
References 
Berry P. Core Curriculum for the Hospice and Palliative Registered Nurse. 4th ed. Pittsburgh, PA: Hospice 
and Palliative Nurses Association; 2015. 
 
Coyne P. Compendium of Treatment of End Stage Non-Cancer Diagnoses. Hepatic. 2nd ed. Pittsburgh, PA: Hospice 
and Palliative Nurses Association; 2012. 
 
Kuebler K, Heidrich D, Esper P. Palliative & End-of-Life Care: Clinical Practice Guidelines. St. Louis, MO: Saunders; 
2007. 
 
 
Approved by the HPNA Education Committee October 2008. 
Reviewed by the HPNA Education Services Committee June 2011. 
Reviewed by the HPNA Professional Development Advisory Council October 2015. 

 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Managing Anxiety/Uneasy Feelings 
 
 
What is Anxiety? 
Anxiety is a feeling or deep sense that things are not right. It is OK to 
experience anxiety sometimes. Anxiety can help people to focus on 
completing a task or to deal with a stressful situation. But it is not alright for 
people to have strong, extreme and lasting worry and fear about everyday 
life. People who have trouble with activities of daily living because of these 
feelings should ask for help to manage their anxiety. 
 
What are the Symptoms of Anxiety? 
◼ Fear 
◼ Worry 
◼ Sleeplessness, disturbing dreams or nightmares 
◼ Confusion 
◼ Rapid breathing 
◼ Racing heartbeat 
◼ Tension 
◼ Shaking 
◼ Inability to relax or get comfortable 
◼ Sweating 
◼ Problems paying attention or concentrating 
 
What to Report to the Hospice/Palliative Care Team? 
◼ Feelings that may be causing anxiety (like a fear of dying or worrying 
about money) 
◼ Concerns about illness 
◼ Relationship problems with family or friends 
◼ Spiritual concerns 
◼ Signs and symptoms that anxiety is changing or getting worse 
 
 
 
orig. 06 08, rev. 06 11, rev. 10 15 
 

 
 
What Can be Done to Help Relieve Anxiety? 
The hospice/palliative care team will try to find the cause for your anxiety. 
They will talk with you and your primary care provider about treatment 
options. 
 
Things you can do: 
 
◼ Activities that have helped your anxiety in the past. 
◼ Write down your thoughts and feelings. 
◼ Treat physical problems, such as pain, that can cause anxiety. 
◼ Try relaxing activities like deep breathing or yoga. 
◼ Play soothing music. 
◼ Keep your surroundings calm. 
◼ Limit visitors. 
◼ Massage your arms, back, hands or feet. 
◼ Count backward slowly from 100 to 0. 
◼ Avoid caffeine and alcoholic beverages. 
◼ Exercise. 
◼ Provide reassurance and support. 
◼ Ask for help from family, friends and other members of your care team. 
◼ Live life one minute at a time. 
◼ Use ordered medications as prescribed. 
 
 
 
Other HPNA Teaching Sheets are available at www.goHPNA.org. 
 
 
 
References 
Anxiety Disorders Association of America. Tips to Manage Anxiety and Stress. Available at 
http://www.adaa.org/tips-manage-anxiety-and-stress. Accessed October 10, 2015. 
 
Berry P. Core Curriculum for the Hospice and Palliative Registered Nurse. 4th ed. Pittsburgh, PA: 
Hospice and Palliative Nurses Association; 2015. 
 
 
Approved by the HPNA Education Committee June 2008. 
Reviewed by the HPNA Education Services Committee June 2011. 
Reviewed by the HPNA Professional Development Advisory Council October 2015. 
 
 
 
 

 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Managing Bladder Incontinence 
 
What is bladder incontinence? 
◼ Loss of bladder control causing loss of urine 
◼ The problem has varying degrees of severity. Some people have only 
small leaks or dribbles of urine, while others lose large amounts of urine at 
a time. 
◼ Bladder muscles and nerves as well as the brain all work together to 
control bladder function 
▪ A problem in any of these areas can result in incontinence 
▪ Infection, constipation and mobility problems can also cause 
incontinence 
◼ Urine left on the skin can lead to irritation and odors 
 
What can I do to control urinary leakage? 
◼ Establish a regular pattern of urinating 
▪ Plan to go to the toilet every two hours while awake and before bedtime 
◼ Make it easier to get to the bathroom 
▪ Use a bedside commode, urinal or bedpan 
◼ Protect your privacy and dignity 
◼ Avoid fluids or foods that contain caffeine (soft drinks, coffee, tea or 
chocolate) 
◼ Avoid alcohol as it can over stimulate the bladder 
◼ Ask your nurse about 
▪ Exercises that can help develop more control 
▪ Medications that may help improve bladder function 

orig. 09 07, rev. 05 11, rev. 09 15 
 
What can be done to prevent odor or skin irritation? 
◼ Keep skin clean and dry 
▪ Take extra care to wash and dry the area 
▪ Products are available that can help you feel clean and eliminate odor 
▪ Use barrier creams to protect skin from urine 
◼ Use protective products to try to keep clothing dry 
▪ Your nurse can help you select which type of garment and products 
would be most helpful for you 
▪ Change the garment frequently 
◼ Wash your hands before and after care to prevent infection 
◼ Ask your nurse for things that can further control any odors 
 
What to discuss with the hospice and palliative nurse? 
◼ Changes in your bladder function 
▪ Burning, pain or discomfort with urination 
▪ Changes in the amount, frequency, color or odor of urine 
◼ Medications 
▪ Many medications can cause incontinence 
◼ Skin irritation 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
 
 
 
 
 
 
 
 
 
 
 
 
Reference 
 
Core Curriculum for the Generalist Hospice and Palliative Nurse. Dubuque, 
IA: Kendall/Hunt Publishing Company; 2011. 
 
Hospice and Palliative Nursing Assistant Core Curriculum, Pittsburgh, PA: Hospice 
and Palliative Nurses Association; 2009. 
 
 
Approved by the HPNA Education Committee, June 
2007 Reviewed January 2009, July 2013 
 

orig. 09 07, rev. 05 11, rev. 09 15 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Managing Bowel Incontinence 
 
What is Bowel Incontinence? 
Not being able to control a bowel movement from the rectum - has many 
causes. Some of these include: 
◼ Weakness of the anal muscle 
◼ Dementia 
◼ Mobility problems 
◼ Nervous system disorders 
◼ Mental confusion 
Other factors include: 
◼ Long-term use of laxatives 
◼ Not enough fluid or fiber intake 
◼ Lack of exercise 
◼ Hemorrhoids 
◼ Sedation 
◼ Very hard stool/severe constipation (may cause leakage) 
 
What are the Signs and Symptoms? 
◼ Losing control of a bowel movement or blockage of bowel contents. 
◼ Symptoms may include: 
▪ Nonstop oozing of loose stools 
▪ Loss of appetite 
▪ Cramping 
 
What to Report to the Hospice/Palliative Care Team? 
◼ Color, looseness and odor of the stool 
◼ Abdominal discomfort, cramping or bloating 
◼ Medications and diet history 
◼ Changes in activity level 
◼ Skin problems of the affected area 
◼ Concerns and thoughts from either the patient or caregiver 

orig. 01 07, rev. 05 11, rev. 09 15 
 
What Can Be Done for Bowel Incontinence? 
◼ Know the person’s bowel history which includes usual routine, time of day, following 
a meal, etc. 
◼ Ask your health care team about strategies to reestablish a routine and predictable 
schedule for elimination. 
◼ Plan a bowel retraining program that is easy and fits into the person’s lifestyle. Your 
nurse can help with this. 
◼ Take in enough fluids and fiber, if possible. 
◼ Determining types of fluids and fiber sources pleasing to the patient. 
◼ Provide ample time and privacy during toileting. 
◼ Keep skin clean and dry to prevent breakdown and odors. 
◼ Avoid baby powder and cornstarch – use protective barrier creams. 
◼ Wear loose fitting clothing to allow for air flow. 
◼ Control odors with fresh air and room deodorizers. 
◼ Wear protective garments. 
◼ Avoid foods that act as laxatives; these include caffeine, alcohol, diet soda and 
artificial sweeteners. 
◼ Talk to your nurse for additional information. 
 
Other HPNA Teaching Sheets are available at www.goHPNA.org. 
 
 
 
 
 
 
 
 
References 
Berry P. Core Curriculum for the Hospice and Palliative Registered Nurse. Pittsburgh, PA: 2015. 
 
Bates-Jensen BM. Skin disorders: pressure ulcers – assessment and management. In: Ferrell BR, Coyle N, eds. Textbook 
of Palliative Nursing. 2nd Ed. New York, NY: Oxford University Press; 2006: 301-328. 
Mayo Clinic online. Available at http://www.mayoclinic.com/health/fecal-incontinence/DS00477. Accessed September 2, 
2015. 
 
 
Approved by the HPNA Education Committee September 2007. Reviewed by the 
HPNA Education Services Committee May 2011. 
Reviewed by the HPNA Professional Development Advisory Council September 2015. 
 
 
 
 
 
 
 
 
 
 
 

orig. 01 07, rev. 05 11, rev. 09 15 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Managing Constipation 
 
 
What is Constipation? 
◼ Bowel movements occurring less often than your usual established 
bowel pattern 
◼ Hard stool that may be difficult to pass 
◼ Increased difficulty moving bowels 
 
What to Report to the Hospice/Palliative Care Team? 
◼ No bowel movement in two (2) days 
◼ Any change in the frequency or consistency (e.g., liquid, pebbles) of 
bowel movements 
◼ Pain, cramping, tenderness 
◼ A feeling of fullness or bloating 
◼ Blood in stools 
◼ Diarrhea or oozing stools 
 
What Can be Done? 
The good news is that there are things you, your caregiver and the 
hospice/palliative care team can do for constipation. 
 
The health care team will determine the underlying cause and discuss the 
best treatments for your constipation. 
 
◼ Record when bowel movements occur. A sample Bowel Movement 
Record is attached to this teaching sheet. 
◼ Follow a regular bowel regimen, even if you are not constipated. Many 
medications can cause constipation. 
▪ Drink as much fluid (liquids) as is comfortable; drinking warm liquids 
may promote bowel movement. Fluids are found in liquids, juices, 
soups, fruits and vegetables, and frozen treats. 
▪ Try to drink 6-8 cups daily. 
▪ Eat more fruits and fruit juices, including dried fruits. 
▪ Try to sit upright and avoid lying too much in bed. 
▪ Increase physical activity if possible; walking can be beneficial. 
▪ Take laxatives/stool softeners as ordered by your healthcare 
provider. 

orig. 01 07, rev. 05 11, rev. 09 15 
 
▪ Sit upright on the toilet, commode or bedpan. 
▪ Establish routine times for toileting. 
▪ Avoid bulk laxatives as determined by your health team if not drinking 
enough fluids. 
◼ Notify the hospice/palliative care team if constipation continues. 
 
Other HPNA Teaching Sheets are available at www.goHPNA.org. 
 
 
 
References 
Berry P. Core Curriculum for the Hospice and Palliative Registered Nurse. Pittsburgh, PA. 2015. 
Ferrell B, Coyle N. Textbook of Palliative Nursing. 4th Ed. New York, NY. Oxford University Press. 2015. 
Oncology Nursing Society. Putting evidence into practice: Quick view for constipation. 
2009. http://www.ons.org/Research/PEP/media/ons/docs/research/outcomes/constipation/quickvew/pdf. 
Accessed April 19, 2011. 
 
 
Approved by the HPNA Education Committee January 2007. 
Reviewed by the Education Services Committee May 2011. 
Reviewed by the Professional Development Advisory Council September 2015. 

orig. 07 05, rev. 01 09, 07 13 
 
 
 
 
Bowel Movement Record 
 
 
 
 
 
Date and 
Time of 
BM 
Consistency Of 
Stool 
Examples include: 
hard, soft, liquid 
Abdominal Symptoms 
Examples include: 
bloating, distention, gas, 
cramping, nausea, vomiting, 
reflux, heartburn 
Problems With Passing 
Stool 
Examples include: 
straining, incomplete passage 
of stool, leakage of stool, 
diarrhea, hemorrhoidal pain or 
bleeding 
Questions Or Comments For The Hospice/Palliative Care Team 
 
 
 

orig. 07 05, rev. 01 09, 07 13 
 
 
 
 
Managing Delirium 
PATIENT / FAMILY 
TEACHING SHEET 
 
What is delirium? 
◼ A sudden change in a person’s mental status over a period of hours to days 
◼ Mental clouding with less awareness of one’s environment 
◼ Confusion about time, place and person 
 
What are the signs and symptoms of delirium? 
◼ Reversal of sleep and awake cycles 
◼ “Sundowning” or confusion that is worse at night 
◼ Mood swings that may change over the course of a day 
◼ Difficulty focusing attention or shifting attention 
◼ Hallucinations or seeing, hearing or feeling things which are not there 
◼ Agitation and irritability 
◼ Drowsiness and sluggishness 
◼ May be restless and anxious 
 
What to report to the hospice/palliative care team? 
◼ Any of the signs or behaviors listed above 
◼ Changes in food or fluid intake 
◼ Decrease in urine output 
◼ Change in frequency or type of bowel movements 
◼ Depression 
◼ Wandering 
◼ Withdrawal from people or activities 
◼ Any change in medications the team is unaware of 

orig. 07 05, rev. 01 09. rev 07 13 
 
What can be done for delirium? 
Delirium is common at the end-of-life. It has many causes. The team will 
try to find out what is causing the delirium. The team will discuss treatment 
options with you. As a caregiver you may: 
◼ Keep the patient safe 
◼ Remind the patient who you are when you assist with caregiving. Tell 
them what you are going to do. For example, “I am going to help you get 
out of bed now” 
◼ Offering support such as “I am right here with you” 
◼ Try to maintain a routine and structure 
◼ Avoid asking a lot of questions 
◼ Provide a quiet, peaceful setting, without TV and loud noises 
◼ Play the patient’s favorite music 
◼ Keep a nightlight on at night 
◼ If starting a new medication, watch for improvement, worsening or side 
effects and report to healthcare provider 
 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Reference 
 
Core Curriculum for the Generalist Hospice and Palliative Nurse. Dubuque, IA: 
Kendall/Hunt Publishing Company; 2011. 
 
Hospice and Palliative Nursing Assistant Core Curriculum, Pittsburgh, PA: Hospice 
and Palliative Nurses Association; 2009. 
 
 
Approved by the HPNA Board of Directors July 2005, 
Reviewed by the Education Committee, January 2009, July 2013. 
 
 
 

orig. 07 05, rev. 01 09. rev 07 13 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
Managing Depression 
 
What is depression? 
◼ A range of feelings that may include sadness, gloom, numbness, 
emptiness, helplessness and hopelessness 
◼ Occurs frequently in chronic and terminal illness 
◼ Symptoms are often the same as those of illness 
 
What are the signs and symptoms of depression? 
◼ Fatigue 
◼ Sadness, depressed mood 
◼ Loss or appetite with weight loss 
◼ No interest or pleasure in daily activities 
◼ Withdrawal from family and friends 
◼ Sleep problems 
◼ Feelings of worthlessness, hopelessness, guilt 
◼ Difficulty focusing and thinking 
◼ Thoughts of death or suicide 
◼ Agitation or slowing down 
 
What to report to the hospice/palliative care team? 
◼ Any of the symptoms 
◼ A known history of depression 
◼ Any symptoms such as pain, nausea, difficulty breathing 
◼ Change in medications the team may be unaware of 

orig. 08 08, rev. 05 11 
 
What can be done for depression? 
Depression may occur at the end-of-life. There is a wide range of intensity 
of depression. The team will help you sort out causes of depression. They will 
discuss treatment options with you. 
 
You may: 
◼ Optimize physical status with rest and nutrition 
◼ Set small, realistic, achievable goals 
◼ Utilize relaxation techniques 
◼ Consider complementary therapies such as aromatherapy, art and music 
therapy 
 
Your caregiver may: 
◼ Keep you and your area safe 
◼ Let you know that they will be there 
◼ Allow you to express feelings 
◼ Allow you to control as much as possible related to treatment decisions 
and activities 
 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Reference 
 
Core Curriculum for the Generalist Hospice and Palliative Nurse. Dubuque, IA: 
Kendall/Hunt Publishing Company; 2011. 
 
 
Approved by the HPNA Board of Directors July 2005, 
Reviewed by the Education Committee January 2009, July 2013. 
 
 
 

orig. 08 08, rev. 05 11 
 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Managing Nausea and Vomiting 
What is nausea and vomiting? 
There are many different causes of nausea and vomiting that may be related 
to your illness or treatment. Your hospice and palliative care team will try to 
discover the underlying reason in order to offer treatment options. 
◼ Nausea is an unpleasant feeling that may occur in the back of the 
throat or stomach prior to vomiting 
◼ Vomiting is the emptying of stomach contents 
What to report to the hospice/palliative care team? 
◼ Amount and frequency of nausea and vomiting 
◼ Description of vomited fluid 
◼ Altered mental status 
What can be done? 
The good news is that there is much you, your caregiver and the 
hospice/palliative care team can do for nausea and vomiting. Discuss 
with your healthcare team which options are best for you. These may include: 
◼ Record what causes you to feel nauseated or to vomit and what 
decreases the nausea and/or vomiting 
◼ Sip carbonated drinks that have gone flat 
◼ Drink sports drinks (such as Gatorade®) – with children use Pedialyte® 
◼ Provide small amounts of salty foods (such as crackers, chicken broth) 
◼ Provide foods as requested by patient in small frequent amounts as 
large meals may be overwhelming 
◼ Provide frequent mouth care 
◼ Try sips of water or ice chips before eating again 
◼ Maintain a comfortable room temperature 
◼ Increase air flow by opening a window or placing a small fan in the 
room 
◼ Try alternative therapies such as massage, guided imagery, or 
progressive muscle relaxation 
◼ Engage in relaxing activities that may distract from the nausea, such as 
listening to music, watching TV, working puzzles, sketching or drawing, 
reading, or yoga 
◼ Use medications as ordered by your healthcare provider 

orig. 03 08, rev. 05 12 
 
◼ Avoid juices (such as cranberry, grape, apple) 
◼ Avoid fried foods, milk products, or foods with strong smells 
◼ Avoid strong odors such as perfume and deodorizers 
◼ Avoid eating immediately after vomiting 
◼ Avoid constipation 
 
Contact your hospice/palliative care team if nausea/vomiting continues. 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
References 
 
Core Curriculum for the Generalist Hospice and Palliative Nurse. Dubuque, IA: 
Kendall/Hunt Publishing Company; 2010. 
 
Ferrell B, Coyle N. Textbook of Palliative Nursing. 2nd Ed. New York, NY: Oxford 
University Press; 2010. 
 
 
Approved by the HPNA Education Committee, August 2008, Revised by 
the Education Services Committee, May 2011 
 
 

orig. 03 08, rev. 05 12 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Managing Constipation Caused by Opioids 
 
Constipation caused by opioids (pain medicine) 
Constipation is the passage of hard, dry stools less often than the person’s usual bowel 
pattern. Individuals and healthcare providers may differ in their thoughts of what is 
considered constipation. Frequency of bowel movements (BM’s) is not the most critical 
factor. Comfort having BM’s is the important factor. It varies how often a person has a BM. 
Normal BM’s can range from 3 BM’s per day to 3 per week. Opioids (such as morphine) 
are medications that are used for the relief of pain. Opioids also slow the movement of the 
bowel which leads to constipation. Constipation during opioid therapy  is very common. A 
plan to prevent this should be started as soon as these medications are prescribed. 
Laxatives should be taken as regularly as the opioids. For example, if a person takes 
opioids daily, he/she should also take laxatives daily. Your hospice and palliative care team 
(your team) will discuss this with you. 
What are the signs and symptoms? 
◼ Less frequent stool, dry hard stools, straining during bowel movement 
◼ Incomplete passage of stool 
◼ Bloating and swelling of the abdomen 
◼ Cramping, nausea, vomiting, reflux/heartburn 
◼ Any of the above symptoms with small smeary or liquid stools (the liquid moves 
around constipated masses of stool and does not count as a BM) 
What to report to the hospice/palliative care team? 
Constipation may be embarrassing  to discuss. However, it is very important for 
your care and comfort. 
◼ Keep a record of your BM’s. List the day and time of your BM. Describe what the 
stool looked like and if you had any problems during the BM 
◼ Change in the frequency of bowel movements 
◼ Change in stool: consistency of stool (hard, soft, liquid), smaller size, oozing liquid 
stool 
◼ Urge but inability to pass stool or rectal fullness or pressure 
◼ Change in the amount of gas passed rectally 
◼ Constipation may worsen if you are not drinking enough liquids. If you are not able to 
drink enough fluids talk to your hospice and palliative team 
◼ It is important to tell your team if you are taking any over the counter medications or if 
there have been any medication changes made since the last visit. Many medications 
can make constipation worse 

orig. 03 08, rev. 05 12 
 
◼ Abdominal symptoms (bloating/swelling, distention, cramping, nausea, vomiting, 
reflux/heartburn, gas) 
◼ Problems with passing stool (straining, incomplete passage of stool or diarrhea, 
hemorrhoidal pain or bleeding) 
◼ It may be helpful to keep a record. An example of a Bowel Movement Record is 
attached to this document and available from HPNA at 
http://www.hpna.org/DisplayPage.aspx?Title=Patient/Family%20Teaching%20Sheets select 
Managing Constipation Caused by Opioids 
What can be done for opioid induced constipation? 
A person taking opioids should have BM at least every 2-3 days. The stools should not 
be hard or cause strain. Comfort when having a BM is important. 
◼ Stool softeners and laxatives are medications used for constipation. It is important to 
have stool softeners and laxatives prescribed at the same time the pain medication is 
prescribed. It may take a few changes to find the right combinations of medications 
that work best for you 
◼ Drink 8 glasses of fluid per day if able 
◼ Include natural fiber from fruits and vegetables in your diet 
◼ Drink warm fluids with or after meals to stimulate the bowel 
◼ Exercise if able. Walk or sit upright after meals. This helps with digestion 
◼ “Train” your bowels by sitting on the toilet at the same time daily 
◼ Do not fight the urge to have a BM even if in a public restroom 
◼ Keep a record of your BM’s. List the day and time of your BM. Describe what the 
stool looked like and if you had any problems during the BM 
Conclusion 
Managing constipation is key. A plan to prevent constipation caused by opioids (pain 
medication) should be started as soon as these medications are prescribed. It is important 
not to stop taking the pain medication because of the constipation. Talk with the health 
care team about what will work best for you. 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
References 
 
Clark K, Byfieldt N, Dawe M, Currow, DC. Treating constipation in palliative care: The impact of other factors aside from 
opioids. American Journal of Hospice & Palliative Medicine. 2012; 29(2):122-125. 
Clark K, Lam L, Agar M, Chye, R. Currow DC, Current approaches to diagnosing and managing constipation in advanced 
cancer and palliative care. J Palliative Med. 2010; 13 (4):473-476. 
Ferrell BR, Coyle N. Oxford Textbook of Palliative Nursing. 3rd ed. New York, New York: Oxford University Press; 2010. 
Herndon C, Jackson K, Hallun P. Management of Opioid Induced Gastrointestinal Effects in Patients Receiving Palliative 
Care. Pharmacotherapy 2002; 22(2): 240-250. 
Core Curriculum for the Generalist Hospice and Palliative Nurse. Dubuque, IA: Kendall/Hunt Publishing Company; 2010. 
Approved by the HPNA Education Committee March 2008. 
Reviewed May 2012 

orig. 01 06, rev. 07 09, rev 07 13 
 
 
 
BOWEL MOVEMENT RECORD 
 
DATE and 
TIME of BM 
CONSISTENCY 
of STOOL 
Examples include; 
hard, soft, liquid 
ABDOMINAL SYMPTOMS 
Examples include; 
bloating, distention, gas 
cramping, nausea, vomiting, 
reflux, heartburn 
PROBLEMS 
WITH PASSING 
STOOL 
Examples include; 
straining, incomplete passage 
of stool, leakage of stool, 
diarrhea, hemorrhoidal pain or 
bleeding 
 
QUESTIONS OR COMMENTS FOR THE HOSPICE AND PALLIATIVE HEALTH TEAM 
 
 
 
 

orig. 01 06, rev. 07 09, rev 07 13 
 
 
 
 
Managing Pain 
PATIENT / FAMILY 
TEACHING SHEET 
 
What is pain? 
◼ It is what the individual says it is 
◼ Hurting or discomfort 
◼ A condition that can cause physical, emotional or spiritual distress and 
can contribute to financial stress 
◼ An experience that can only be felt and described by the person with 
the pain 
◼ Pain affects everyone involved 
◼ Older adults may describe pain as aching, burning, gnawing, grabbing, 
being uncomfortable, soreness 
◼ Children may express pain in different ways, such as they may sleep 
more, become irritable, or have other behavior changes. They may  use 
words like oowie or boo-boo to describe pain 
◼ Confused patients, those with cognitive impairment, or those that cannot 
speak for themselves may have behavior changes such as pacing, 
moaning, agitation, grimacing, and furrowed brow that can indicate pain 
 
What to report to the hospice/palliative care team? 
◼ How severe or intense the pain is. It can be reported as a number using 
0 as no pain and 10 as the worst possible pain imaginable. Other ways 
of reporting pain are also available such as, mild to severe, using 
different types of pictures. Ask your nurse to tell you more about the 
options for reporting. There are also options for rating children’s pain. 
◼ Where the pain is located 
◼ If the pain keeps you from doing your usual activities 
◼ What makes the pain worse 
◼ What makes the pain better 
◼ What does the pain feel like (burning, sharp, stabbing) 
◼ Is the pain constant or does the pain come and go 
◼ How well the pain medication is working 
◼ How often you are taking pain medication 
◼ Any side effects of the medication (common side effects include: 
constipation, nausea, vomiting, sleepiness, dizziness, itching) 

orig. 06 08, rev. 06 11 
 
◼ Concerns about the medications, how to take them or how
 
to administer them 
◼ If you are becoming irritable from lack of sleep because of the pain 
 
What can be done? 
The good news is that there is much you, your caregiver, and the hospice 
and palliative care team can do for managing pain. They will try to find 
the reason for the pain and discuss treatment options with you. 
Medications are usually necessary to relieve pain – the nurse will give 
you information about the medicines, when to take them and what you 
need to know. 
◼ It is important to take or administer the medicines as ordered 
◼ Many side effects can be treated and/or may even stop after taking 
the medication for a few days 
◼ Other things that can make the pain better are: 
▪ Relaxing activities such as listening to music, light massage, 
soaking in a tub of warm water, or guided imagery (picturing 
enjoyable and relaxing scenes to take one’s mind off the pain) 
▪ Distracting activities such as watching TV, playing a game, or just 
thinking of other things 
▪ Heat or cold (such as a heating pad, warm compress, or ice pack) 
▪ Pleasant smells of certain plants or fragrances (aromatherapy) 
such as lavender, etc. 
▪ Storytelling, drawing 
▪ Deep breathing 
◼ Ask your hospice and palliative care team to teach you how to use 
these ways of relieving the pain 
 
Once medications are no longer needed your hospice and palliative care 
team will advise you on the proper disposal of medications. 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
References 
 
Bergen K. Pain management at the end of life. Hospice and Palliative 
Core Curriculum for the Nursing Assistant, Pittsburgh, PA: Hospice and 
Palliative Nurses Association; 2009. 
 
Core Curriculum for the Generalist Hospice and Palliative Nurse. 
Dubuque, IA: Kendall/Hunt Publishing Company; 2011. 
 
Approved by the HPNA Education Committee January 
2006. 

orig. 06 08, rev. 06 11 
 
Reviewed July 2009, July 2013. 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Managing Restlessness 
 
 
What is restlessness? 
◼ An inability to rest, relax or concentrate 
◼ Extreme restlessness is sometimes called agitation 
◼ A condition that occurs in nearly half of all patients during the last 48 
hours of life 
 
What are signs of restlessness? 
◼ Muscle twitching 
◼ Moving around without a known reason 
◼ Pulling at sheets, covers or clothing 
◼ Trying to get out of bed for no known reason 
◼ Fidgeting 
◼ Sleeplessness 
◼ Inability to get comfortable 
◼ Grimacing 
 
What to report to the hospice/palliative care team? 
◼ Any of the signs or behaviors listed above 
◼ Inability to administer medications by prescribed method 
◼ Things that make the restlessness worse, for example: loud music 
◼ Things that make the restlessness better, for example: soft music 
◼ Concerns that you may have as a caregiver to cope 
◼ Need for spiritual support 
◼ Situations that might be unsafe 

orig. 01 06, rev. 08 09, rev 07 13 
 
What can be done for restlessness? 
The team will try to find the reason for the restlessness and talk with you about 
treatments. 
 
Things you can do: 
◼ Administer prescribed medications as ordered 
◼ Offer frequent reassurance 
◼ Offer relaxation activities, for example: play soothing music 
◼ Keep things calm, for example: decrease numbers of visitors 
◼ Read favorite stories, poems, etc. in a calm voice 
◼ Hold the person’s hand, give them a gentle massage 
◼ Keep the person safe, for example: do not leave the person alone while 
restless and check frequently when calm 
◼ Understand that restlessness may be a sign that the patient is close to 
death – let other family members know what is happening 
 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Reference 
 
Core Curriculum for the Generalist Hospice and Palliative Nurse. Dubuque, IA: 
Kendall/Hunt Publishing Company; 2010. 
 
Approved by the HPNA Education Committee June 2008. 
Reviewed by the HPNA Education Services Committee June 2011. 
 

orig. 01 06, rev. 08 09, rev 07 13 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
Managing Shortness of Breath 
 
What is shortness of breath (dyspnea)? 
◼ A personal experience for each individual 
◼ An uncomfortable feeling of having difficulty breathing 
◼ Can be described as not getting enough air (a feeling that you cannot 
catch your breath, like the room is closing in or that there is not enough 
air in the room) 
 
When should I seek advice about my shortness of breath? 
◼ When it stops you from doing what you want to do 
◼ When it causes you or your family fear, anxiety, nervousness or 
restlessness 
◼ When it causes bluish discoloration of your face, ears, nose, fingers or 
toes 
 
What can be done? 
The good news is that there is much you, your caregiver and the 
hospice and palliative care team can do for shortness of breath. The 
team will always try to find out the cause and discuss treatment options with 
you and your family. Things that may be helpful: 
◼ Sit in a chair or recliner 
◼ Elevate your head on pillows when lying in bed 
◼ Sit with your hands on your knees or on the side of the bed leaning 
over the bedside table 
◼ Practice pursed lip breathing technique. Take slow, deep breaths, 
breathing in (inhale) through nose and then breathe out (exhale) slowly 
and gently through pursed lips (lips that are “puckered” as if you were 
going to whistle) 
◼ Increase air movement by opening a window, using a fan or air 
conditioner. Apply a cool cloth to your head or neck 
◼ Use oxygen as directed by your healthcare provider 
◼ Take medication as directed by your doctor 
◼ Keep your environment quiet to decrease feelings of anxiety 
◼ Use relaxing activities such as prayer, medication, calming music, and 
massage 
◼ Notify the team if your shortness of breath is not relieved or gets worse 

orig. 12 10 
 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Reference 
 
Berry P. Management of other symptoms at the end of life. Hospice and Palliative Nursing 
Assistant Core Curriculum. Pittsburgh, PA: The Hospice and Palliative Nurses Association; 
2009:24-25. 
 
Core Curriculum for the Generalist Hospice and Palliative Nurse. Dubuque, IA: Kendall/Hunt 
Publishing Company; 2011. 
 
Approved by the HPNA Education Committee January 2006. 
Reviewed August 2009, July 2013. 
 
 
 

orig. 12 10 
 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Preparing the Children: Preschool ages 3-5 
 
Adults sometimes feel that children are too fragile to face the reality of death, or too young to 
understand. Children experience the same emotions adults do; most are emotionally strong 
enough and want to know about death. The truth helps them understand what is real and what 
is not. It is important to remember that grieving is natural. Support for their unique grief processes 
helps children heal and learn to live with a painful loss. With help, a child may find grief a growing 
process. It is important to make sure that the help offered is age appropriate. 
Age affects how children understand death – Preschool children ages 3-5 years 
◼ May have some understanding about death, but may think it is reversible like he/she sees 
on cartoons 
◼ May ask when a loved one will return, or may need the facts repeated 
◼ May believe that his/her thoughts or feelings have power over others and may believe 
he/she caused a loved one’s illness or death 
◼ Do not understand that every living thing will die and may question if other people or pets 
die 
How to explain 
◼ The person talking to the child should be someone the child knows and trusts and it 
should be done in a quiet, private place 
◼ Tel the truth; explain what dead means. Keep it simple by saying the person’s “body stopped 
working” and the doctors could not fix it. Tell the child he/she will never see that person 
again except in his/her memory or pictures 
◼ State the facts that the person “died/is dying” not that he/she “went/going away,” 
“Passed/ing to the other side,” or “went/going to sleep.” The child may expect the person to 
return or wake up 
◼ Tell the child it is okay to cry or feel angry or sad. Acknowledge that it is a scary, confusing 
time. Allow him/her to see adults crying and express their emotions. Allow the child to ask 
questions 
What can be done? 
◼ Reassure the child that it was not his/her fault, that he/she will be cared for and is loved 
◼ It may take some time for a child to react. Be present and attentive 
◼ Allow the child to play and have fun 
◼ Certain books may be a good tool to help the child become aware of his/her feelings and 
talk about them. Children may identify with a character in a book, learning they have 
similar feelings, which helps the healing process. Ask the nurse about books 
Signs and symptoms of Grieving/Mourning 
◼ Anxiety. The child may be clingy or demanding. He/she may loose his/her sense of 
security, or fear the loss of another loved one 
 

orig. 12 10 
 
 
◼ Sleep difficulty. This is common, especially if “sleep” was used to describe death. He/she 
may have nightmares 
◼ Behavior changes “acting out.” The child may be angry at death, God, or other adults or 
himself/herself. He/she may feel responsible 
◼ Withdrawal. The child may not want to talk about the dying loved one, hide in his/her room 
or behind furniture 
◼ School problems. The child may have difficulty concentrating 
◼ Physical complaints. The child may experience, such as a headache, stomach ache or 
similar symptoms as the person who is ill or died 
What to report to the hospice/palliative care team? 
◼ Any kind of extreme behavior 
Should children visit the dying? 
◼ Depends on the situation. If the child is old enough to understand what is happening and 
the dying person has played an important role in his or her life, then it may be good for both 
the child and the dying person 
◼ The child needs to be prepared for what he/she will see and hear. A picture and 
description of equipment in the room may help 
◼ May be useful to children, to help diminish the mystery of death 
◼ May help the child develop more realistic ways of coping 
◼ A child should never be forced to visit a dying person or go to a funeral, nor should he/she 
be made to feel guilty for not wanting to be involved 
Should children attend funerals? 
Yes, if a child wants to go and is old enough to understand the event. Rituals can be an important 
part of the grieving process. Prepare the child for the event by explaining what they will see and 
hear, especially if there will be a viewing. Give the child a choice, but try to understand the child’s 
reasons so you can address any fears or misconceptions and answer questions. 
The grieving process is normal and the process helps both adults and children heal from their 
pain. If you have questions or concerns, please contact the hospice or palliative care team, a 
bereavement group, religious advisor, or a mental health professional. Your child and you may 
need support during a time of grief. Please don’t hesitate to ask for help. 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
References 
Berry P. Core Curriculum for the Generalist Hospice and Palliative Nurse. Pittsburgh, PA: 2010. 
Deitrich-MacLean G. Death: Preparing Children for the Death of a Loved One. December 4, 2007. Available at 
www.texaschildrenspediatrics.org/healthlibrary/pa_deathpre_pep.aspx. Accessed June, 2010. 
Talking to Children about Death. Patient Information Publications from Clinical Center of the National Institutes of 
Health. 2006. Available at www.cc.nih.gov/ccc/patient_education/pepubs/childeath.pdf. Accessed June 1, 2010. 
Tousley M. Explaining the Funeral/Memorial Service to Your Children. Hospice of the Valley. Phoenix AZ. 2005. 
Available at http://www.hov.org/pdf/Explaining_Funerals.pdf. Accessed December 14, 2010. 
Wilken CS, Powell J. Learning to live through loss; Helping children understand death. Kansas State University 
Cooperative Extension Service. 1991. 
Approved by the HPNA Education Services Committee December 2010.

orig. 12 10 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Preparing the Children: Preteens and Teens 
 
Adults sometimes feel that children are too fragile to face the reality of death, or too young 
to understand. Children experience the same emotions adults do; most are emotionally 
strong enough and want to know about death. The truth helps them understand what is 
real and what is not. It is important to remember that grieving is natural. Support for their 
unique grief processes helps children heal and learn to live with a painful loss. With help, 
a child may find grief a growing process. It is important to make sure that the help offered 
is age appropriate. 
Age affects how children understand death – Preteens and Teens ages 10 years and 
above 
◼ May have developed an understanding of death; that death is final, but remains a 
mystery 
◼ While understanding death, he/she still may be careless with their own health and 
safety because they have a feeling that it will never happen to him/her 
◼ May want to talk about death and other abstract topics 
◼ May begin to question the family faith and other beliefs 
How to explain 
◼ Should be done by a person they know and trust 
◼ Know the facts and be honest. Make sure they understand that death could not be 
prevented, such as when a person dies of cancer 
◼ Provide needed structure, support and guidance. He/she is no longer a child, but not 
yet an adult. Allow him/her to express anger or guilt. He/she may try to hide his/her 
feelings, so let him/her know his/her emotions are okay and normal. Maintain family 
closeness, but respect their privacy 
Signs and symptoms of Grieving/Mourning 
◼ Anger or guilt 
◼ Withdrawal or attempts to hide their feelings 
◼ Aggressive behavior 
◼ Resistant to help and may react by trying to take care of others 
◼ May have difficulty concentrating in school 
What to report to the hospice/palliative care team? 
◼ Any kind of extreme behavior 
What can be done? 
◼ Refer to professional counseling, if needed 
◼ Access grief and bereavement support groups 

orig. 12 10 
 
 
◼ Certain books may be a good tool to help the preteen/teen become aware of 
his/her feelings and talk about them. The preteen/teen may identify with a character 
in a book, learning they have similar feelings, which helps the healing process. Ask 
the nurse about books 
◼ Allow him/her to participate in any family rituals such as funerals, wakes, and 
memorial services 
◼ Allow him/her to speak to someone other than a parent about his/her feelings may 
be best. Encourage him/her to seek another trusted adult such as a counselor, 
teacher, pastor, or coach 
Should children visit the dying? 
◼ This depends on the situation. If the child is old enough to understand what is 
happening and the dying person has played an important role in his or her life, then 
it may be good for both the child and the dying person 
◼ The preteen or teen needs to be prepared for what he/she will see and hear. A 
picture and description of the equipment in the room may help 
◼ The preteen or teen should never be forced to visit a dying patient, go to a funeral or 
to the funeral home, nor should he/she be made to feel guilty for not wanting to be 
involved 
Should children attend funerals? 
Yes, if a child wants to go and is old enough to understand the event. Rituals can be an 
important part of the grieving process. Prepare the child for the event by explaining  what 
they will see and hear, especially if there will be a viewing. Give the child a choice, but try 
to understand the child’s reasons so you can address any fears or misconceptions and 
answer questions. 
The grieving process is normal and the process helps both adults and children heal from 
their pain. If you have questions or concerns, please contact the hospice or palliative care 
team, a bereavement group, religious advisor, or a professional counselor. 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
Reference 
Berry P. Core Curriculum for the Generalist Hospice and Palliative Nurse. Pittsburgh, PA: 2010. 
Deitrich-MacLean G. Death: Preparing Children for the Death of a Loved One. December 4, 2007. 
Available at www.texaschildrenspediatrics.org/healthlibrary/pa_deathpre_pep.aspx. Accessed June, 2010. 
Talking to Children about Death. Patient Information Publications from Clinical Center of the National 
Institutes of Health. 2006. Available at www.cc.nih.gov/ccc/patient_education/pepubs/childeath.pdf. 
Accessed June 1, 2010. 
Tousley M. Explaining the Funeral/Memorial Service to Your Children. Hospice of the Valley. Phoenix AZ. 
2005. Available at http://www.hov.org/pdf/Explaining_Funerals.pdf. Accessed December 14, 2010. 
Wilken CS, Powell J. Learning to live through loss; Helping children understand death. Kansas State 
University Cooperative Extension Service. 1991. 
Approved by the HPNA Education Services Committee December 2010. 

orig. 12 10, rev. 08 15 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
Preparing Children for Death: Ages 6-9 Years 
How Should Adults Prepare Children Ages 6-9 for Death? 
Adults sometimes feel children are too fragile or too young to face the reality of death. Children 
experience the same emotions adults do; most are emotionally strong enough and want to know 
about death. The truth helps them to understand what is real and what is not. Grieving is natural 
- at any age. Recognizing and supporting their unique grief processes helps children to grow 
emotionally and to heal as they learn to live with a painful loss. It is important that the help offered 
is age appropriate since age affects how children understand death. School-aged children 6-9 
years: 
◼ Are beginning to understand that death is final. 
◼ May need more facts about death or how a loved one died, and may be curious about the 
physical details. 
How to Explain Death and Dying 
◼ The person talking to the child should be someone the child knows and trusts, and the 
conversation should happen in a quiet, private place. 
◼ Tell the truth; explain what “dead” means. Keep it simple by saying the person’s “body 
stopped working,” and that the child will never see that person again except through 
memories or in photographs. 
◼ State the facts. Say a person “died/is dying,” not that he/she “went/is going away,” 
“passed/is passing to the other side,” or “went/is going to sleep.” When these descriptions 
are used, the child may then expect the person to return or to wake up. Also, if the person 
died of illness, explain how the person was very, very sick so the child will not be scared 
when he/she gets a minor illness. 
◼ Talk about emotions and feelings. Tell the child it is okay to cry or to feel angry or sad. 
Explain that it is a scary, confusing time. Allow the child to see adults crying, to express 
emotions and to ask questions. 
Signs and Symptoms of Grieving/Mourning 
◼ Anxiety – The child may be clingy or demanding, lose his/her sense of security or fear the 
loss of another loved one. 
◼ Sleep difficulty – This is common, especially if the word “sleep” was used by someone to 
describe death. The child may even have nightmares. 
◼ Behavior changes, such as “acting out” – The child may be angry at death, God, other 
adults or himself/herself. He/she may feel responsible. 
◼ Withdrawal or attempts to hide feelings – The child may not want to talk about the dying 
loved one and may hide in his/her room. 
◼ School/health problems – The child may have difficulty concentrating, or may experience 
headaches, stomach aches or similar symptoms as the person who is ill or has died. 
◼ Denial – Refusing to admit the death happened, and fear that other loved ones will die, 
can also be symptoms. 

orig. 12 10, rev. 08 15 
 
What to Report to the Hospice/Palliative Care Team? 
◼ Any kind of extreme physical or emotional behavior should be reported. 
 
Should Children Visit the Dying or Attend Funerals? 
◼ Visitation depends on the situation. A visit may help the child by lessening the mystery of 
death. If the child is able to understand, and the dying person has played an important role 
in his/her life, then a visit may be good for both the child and the dying person. 
◼ The child needs to be prepared for what he/she will see and hear. A picture and description 
of the equipment in the room may help. 
◼ A visit may help the child to develop more realistic ways of coping with death. A child should 
never be forced to visit a dying patient, or go to a funeral or funeral home. No child should 
be made to feel guilty for not wanting to be involved. 
◼ A child should attend a funeral if he/she wants to go and is old enough to understand the 
event. Rituals can be an important part of the grieving process. Explain what the child will 
see and hear, especially if there will be a viewing. Give the child a choice, and try to 
understand the child’s reasons for wanting to attend. Be prepared to address any fears or 
misconceptions and answer questions. 
 
What Else Can be Done to Help Children? 
◼ Reassure the child the death was not his/her fault, and he/she will be loved and cared for. 
◼ It may take some time for a child to react. Be present and attentive. 
◼ Allow the child to play and have fun. 
◼ Rituals are important at this stage and can help the situation to seem more real. Allow a 
child who is interested to participate in a funeral or memorial service. 
◼ Certain books may help a child become aware of feelings and talk about them. If a child 
identifies with a character in a book who shares similar feelings about death and dying, it 
can help the healing process. Ask your nurse to recommend appropriate books. 
 
The grieving process is normal, and mourning helps both adults and children heal from the pain 
that comes with loss. If you have questions or concerns, please contact the hospice or palliative 
care team, a bereavement group, a religious advisor or a professional counselor. 
 
Other HPNA Teaching Sheets are available at www.goHPNA.org. 
References 
Berry P. Core Curriculum for the Hospice and Palliative Registered Nurse. Pittsburgh, PA: 2015. 
 
Deitrich-MacLean G. Death: Preparing Children for the Death of a Loved One. December 4, 2007. 
www.texaschildrenspediatrics.org/healthlibrary/pa_deathpre_pep.aspx. Accessed June 2010. 
 
Talking to Children about Death. Patient Information Publications from Clinical Center of the National Institutes of 
Health. 2015. http://www.cc.nih.gov/ccc/patient_education/pepubs/childdeath.pdf. Accessed August 17, 2015. 
 
Tousley M. Explaining the Funeral/Memorial Service to Your Children. Hospice of the Valley. Phoenix, AZ. 2005. 
Available at http://www.hov.org/pdf/Explaining_Funerals.pdf. Accessed August 17, 2015. 
 
Wilken CS, Powell J. Learning to live through loss; Helping children understand death. Kansas State University 
Cooperative Extension Service. 1991. 
 
Approved by the HPNA Education Services Committee December 2010. 
Reviewed by HPNA Professional Development Advisory Council August 2015 

orig. 06 08, rev. 06 11 
 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Psychological Distress 
 
 
What is psychological distress? 
Uneasy feelings of anxiety or depression in response to physical, spiritual, or 
emotional demands – or a combination of multiple demands – that result in 
temporary or permanent harm 
 
What are the signs and symptoms of psychological distress? 
◼ Feelings of anxiety, sadness, anger. Wanting to be alone 
◼ Feeling “out of control” or overwhelmed much of the time 
◼ Difficulty coping with everyday problems 
◼ Unable to talk about ways to solve problems or talk about fears 
◼ Needing the help of others to make decisions 
◼ Trouble sleeping 
◼ Not taking care of self 
◼ Looking sad, frowning. Crying easily. Loss of hope or sense of comfort 
◼ Laughing at odd times 
◼ Aches and pain. Feeling that your heart is racing 
◼ Thoughts of suicide or hastening death 
◼ Not wanting to follow the advice of the healthcare team 
 
What to report to the hospice/palliative care team? 
◼ Any signs of behaviors listed above 
◼ New onset of reckless behavior. Talking or thinking about suicide 
◼ Firearms in home. Hoarding or stockpiling medications 
◼ Seeing images or hearing voices not seen or heard by others 
◼ History of psychiatric illness or history of use of medications taken for 
depression, anxiety, schizophrenia, dementia, or bipolar disorder 
◼ Lack of interest in self or life in general 
◼ If you experience a new problem, or if a current problem is getting worse 
and the present medication does not seem to be working 
◼ Side effects of medications 
 
 
 
 

orig. 06 08, rev. 06 11 
 
 
What can be done for psychological distress? 
Psychological distress is common with terminal diseases, especially if physical 
symptoms are present. Your healthcare team wants you to be physically 
comfortable. There is a direct link between how one feels  physically and how 
one feels psychologically and emotionally. 
 
Patients and Family 
◼ Do not feel that you are bothering your healthcare team by asking 
questions 
◼ Asking questions means you care 
Patient 
◼ You may not feel up to talking with many people. You may want to have 
one person to talk to whom you trust 
◼ Try to have a daily routine including a regular sleep schedule 
◼ Eat a balanced diet and exercise as you are able 
◼ Avoid alcohol and non-prescribed drugs and herbal remedies 
◼ Ask for and accept assistance from your team, including: family, friends, 
nurses, physicians, nursing assistants, social workers, chaplain 
Family 
◼ Provide calm, relaxing setting 
◼ Be flexible. The patient may want to talk one day. The next he/she may 
need quiet and calm 
◼ Be willing to be with them without having to “do” something 
◼ If needed, help with medications. Report any medication side effects or 
changes in behavior 
◼ Treat the patient with dignity and respect 
◼ Don’t be afraid to ask for help. Do not be hard on yourself with comments 
like “I should have done this or that” or “I should have known that” 
◼ As much as you can, enjoy this time together and look for ways to make 
memories 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
Reference 
 
Core Curriculum for the Generalist Hospice and Palliative Nurse. Dubuque, IA: 
Kendall/Hunt Publishing Company; 2010. 
 
Fortin M, Hudon C, Bayliss EA, Soubhi H, Lapointe L. Caring for body and soul: The 
importance of recognizing and managing psychological distress in persons with 
multimorbidity. International Journal of Psychiatry in Medicine;2007;37(1):pages 1-9. 
 
Approved by the HPNA Education Committee June 2008. 
Reviewed by the HPNA education Services Committee June 2011.

orig. 03 07 rev. 01 09 rev. 10 13 
 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Self-Care for the Caregiver 
 
 
Why it is important? 
Caregivers are very important to the care of persons with serious or life- 
threatening illnesses. More than 70% of people who die have had care from 
family caregivers. Caring for a loved one who is seriously ill can be hard work 
and can be very stressful. Your ability to do this work improves when you take 
time to take care of yourself. Self-care is about meeting your own needs so 
you are able to be an effective caregiver. It is important to be well rested to 
provide the best care. Some helpful suggestions include the following. 
 
Physical needs 
◼ Remember to take care of your own health. 
◼ Keep your own medical, dental, and therapy appointments. 
◼ Schedule time to eat: have at least 3 healthy but simple meals a day. 
◼ Learn to make meals in advance. Ask friends/family if they will help 
making meals. 
◼ Ask how best to provide care to your loved one and prevent injuring 
yourself. 
◼ Take time to rest, especially if sleeping has become hard for your. 
◼ Avoid/limit the use of tobacco and alcohol as they make it difficult to fall 
asleep. 
◼ Try to get exercise during the day. 
◼ Take time for yourself. This can include reading, listening to music, 
taking a bath, going for a walk, praying, gardening, and other activities 
you enjoy. 
 
Communication needs 
◼ Tell people about your worries and concerns. These people may be 
family, friends, or some of the healthcare providers working with you to 
help care for your loved one. 
◼ Stay informed! Ask what signs and symptoms the person you are caring 
for may have so that you are prepared to deal with them. 
◼ Get organized and set realistic goals for your day. Be flexible. Set limits. 
◼ Ask others to help with whatever you or your loved one needs. 
◼ Stay informed about the hospice visits and any changes in the schedule.

orig. 03 07 rev. 01 09 rev. 10 13 
 
Emotional/spiritual needs 
◼ Continue relationships with family and friends to avoid feeling alone. If it 
is difficult for you to get out, ask people to come visit. Let people take 
care of you and allow your loved one to say thank you for all you do. 
◼ Work with your team to provide time to get out of the home to enjoy 
social activities or attend support groups. When possible, keep doing 
favorite activities. Try to keep things simple. 
◼ Talk about what is happening to your loved one. Expect to feel angry, 
stressed, or frustrated at times. These are normal responses. 
◼ Tell yourself every day you are doing a great job. Breathe and laugh 
◼ Let your hospice/palliative care team know if you are feeling 
overwhelmed. Your team has resources to help. 
◼ Attend to your spiritual needs by calling or visiting your clergy, church or 
synagogue. 
◼ Have your own “special space.” This can be your room, a chair, a table, 
etc. Someplace that is yours where you can go unwind. 
◼ Take short breaks outside the house, even for a few minutes. 
◼ Seek additional professional help if you are feeling scared, helpless, lost, 
or depressed. 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
 
 
 
 
 
 
Reference 
 
Supiano K, Altilio T. Care of the Patient and Family. In: Core Curriculum for the 
Generalist Hospice and Palliative Nurse. 3rd ed. Dubuque, IA: Kendall/Hunt Publishing 
Company; 2010: 146-148. 
 
Garvin G, Smith E, Astrow A. Spirituality. In: Panke J, Coyne P, eds. Conversations in 
Palliative Care: Questions and Answers with the Experts. 3rd ed. Pittsburgh, PA: 
Hospice and Palliative Nurses Association; 2011: 123-127. 
 
Approved by the HPNA Education Committee March 2007 
Reviewed January 2009 
Revised by the HPNA Education Advisory Team October 
2013 
 
 
 
 
 
 

orig. 03 07 rev. 01 09 rev. 10 13 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Skin Care 
 
 
Why it is important? 
Care of the skin is an important part of the overall care. The skin is the largest 
organ of the body. It is the immune system’s first line of defense against 
infection. 
 
How can I keep the skin healthy? 
◼ Healthy skin needs to be cleaned and well hydrated. 
◼ Wash with warm water and mild soap. 
◼ Avoid friction or rubbing. 
◼ Clean skin after each soiling. 
◼ Use alcohol-free lotions on dry skin for moisturizing. 
◼ Do not massage reddened areas. 
 
What can be done to prevent damage to the skin? 
◼ Encourage the person to be out of bed as tolerated. 
◼ Avoid having person sit up straight in bed longer than necessary. This 
puts pressure on the buttocks and sacrum. 
◼ Raise heels off of the bed by placing pillows under calves and knees 
for support. 
◼ Change the bedbound person’s position at least every two hours; one 
hour if in a chair. 
◼ Remind the person to shift their own weight, if possible, every 15 
minutes. 
◼ Ask your team to show you how to use “draw” or “pull” sheets to move 
the person, avoiding friction from sheets. 
◼ Keep the person’s skin clean and dry. 
 
What to report to the hospice/palliative care team 
◼ Reddened areas that do not fade. 
◼ Open areas or blisters on the skin. 
◼ Any changes in the ability to turn or change the person’s position. If it 
becomes difficult for the person to change position because of weakness 
or pain. 

orig. 03 07 rev. 01 09 rev. 10 13 
 
The team can advise you on special pads and mattress overlays to help 
prevent skin breakdown. Nutrition is important but sometimes food may 
overwhelm the sick person. Offer protein-rich drinks and snacks during 
the day as person tolerated. 
 
Even though attentive care is provided, skin can break down because of 
the physical changes that occur at end of life. Skin breakdown can result 
from lying in bed much of the time. Other medical issues may prevent or 
delay healing. It is important to report any changes, redness or skin 
breakdown to the nurse. 
 
The person’s comfort is the goal of care. 
 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Reference 
 
Martinez J. Care at the Time of Dying. In Ersek M. ed. Hospice and Palliative Nursing 
Assistant Core Curriculum. Pittsburgh, PA: Hospice and Palliative Nurses Association; 
2009: 81-82. 
 
Sannon M, Abruzzese R. Statement on Pressure Ulcer Prevention. National Pressure 
Ulcer Advisory Panel. Galveston, TX. 
 
Philips P. Skin Care Guidelines. Memorial Medical Center. New Orleans, LA. May 2006. 
 
Ferris F. International Palliative Wound Care Initiative. Consensus Statement on 
Palliative Wound Care. Journal of Palliative Medicine, November 2007. 
 
 
 
Approved by the HPNA Education Committee October 2009 
Revised by the HPNA Education Advisory Team October 2013 
 
 

orig. 03 07 rev. 01 09 rev. 10 13 
 
PATIENT / FAMILY 
TEACHING SHEET 
 
 
Social Distress 
 
 
What is social distress? 
Social distress is a change in a person’s social life (roles, relationships, 
sense of belonging, sexual function and appearance which causes a 
suffering of mind or body. 
 
What are the signs and symptoms of social distress? 
◼ Feelings of : 
▪ Being lonely and/or feeling alone. 
▪ Not being able to carry out personal roles, such as spouse/partner, 
parent, or friend. 
▪ Not being able to do your job. 
▪ Shame of failure regarding not being able to have sex or lacking an 
interest in sex. This could be due to illness and related issues. 
▪ Fear about financial concerns. 
▪ Fear about being a burden to those providing care. 
◼ Not wanting to receive company or visitors. This may include even close 
friends or relatives. It could be due to the effects of your illness on your 
appearance. 
 
What to report to the hospice/palliative care team? 
◼ Any signs of behaviors listed above. 
◼ Any thoughts about suicide. 
◼ Prior history of social distress. 
◼ No interest in self and life in general. 
◼ Unusual anger or lashing out. The person may not understand the 
reason for the anger or how to cope. 
◼ Any change that concerns you. 

 
What can be done for social distress? 
Social distress is common with terminal illnesses. Not everyone 
experiences it the same way. 
 
 
Patients and Family 
◼ Do not feel you are bothering the hospice and palliative care team by 
asking questions. 
 
Patient 
◼ It is very important to have at least one person with whom you trust to 
talk with and share your thoughts and feelings. 
◼ Do not be hard on yourself for not feeling very social. 
◼ Allow yourself to be angry. Tell others about your anger. 
◼ Be sure to take your medications as prescribed. 
◼ It is okay to want quiet time. Consider using this time to reflect, record 
memories and future messages for your family. 
 
Family 
◼ Provide calm, relaxing setting. 
◼ Treat the patient with dignity and respect. 
◼ Be willing to be present. Provide support. 
◼ Be willing to listen and reminisce. 
◼ Enjoy the time together, look for ways to make memories. 
◼ Report any medication side effects or behavior that is out of character. 
◼ Support any desire to stay in touch with friends and family. 
◼ Encourage short periods of time for visitors during the day. 
◼ Try not to let the patient become secluded. 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
References 
 
Supiano K, Altilio T. Care of the Patient and Family. In: Core Curriculum for the Generalist Hospice 
and Palliative Nurse. 3rd ed. Dubuque, IA: Kendall/Hunt Publishing Company; 2010: 146-148. 
 
Ferrell BR, Coyle N. Textbook of Palliative Nursing. 3rd ed. New York, New York: Oxford University 
Press; 2011. 
 
Garvin G, Smith E, Astrow A. Spirituality. In: Panke J, Coyne P, eds. Conversations in Palliative 
Care: Questions and Answers with the Experts. 3rd ed. Pittsburgh, PA: Hospice and Palliative 
Nurses Association; 2011: 123-127 
 
Approved by the HPNA Board of Directors October 2005 
Reviewed by the HPNA Education Services Committee January 2009 
Revised by the HPNA Education Advisory Team October 2013 
 

 
PATIENT / FAMILY 
TEACHING SHEET 
 
Spiritual Distress 
 
What is spiritual distress? 
Spiritual distress is a disruption in a person’s belief or value system. It may 
occur when a person is unable to find sources of meaning, hope, love, 
comfort, strength, and connection in life or when conflict occurs between 
his/her beliefs and what is happening in their life. It may affect his or her 
entire being. Something in a person’s past can also be a cause of distress. 
 
What are the signs and symptoms of spiritual distress? 
◼ Sadness, anger, despair, depression, anxiety. 
◼ Questions the meaning of life. Questions the meaning of suffering. 
◼ Asks why this is happening, “Why now?”, “Why me?” 
◼ Afraid to fall asleep. 
◼ Questions his/her belief system. 
◼ Feels a sense of emptiness, loss of direction, abandonment. 
◼ Talks about feelings of being left or forgotten by God/higher power. 
◼ Seeks spiritual help or guidance. 
◼ Pain and other physical symptoms may be expressions of spiritual 
distress. 
 
What to report to the hospice/palliative care team? 
◼ Signs of behaviors listed above. 
◼ Side effects of medications. 
◼ Behaviors that seem out of character. 
◼ Symptoms that are getting worse. 
◼ Talk about suicide, ending it all, asking for help to die. 
◼ Known history of spiritual distress. 
◼ Not caring about self and life in general. 
◼ Sudden rejection or neglect of previous practices or beliefs. 
 
What can be done for spiritual distress? 
Spiritual distress is common with terminal illnesses. Not everyone 
experiences it the same way or to the same degree. 

Patients and Family 
◼ Do not feel you are bothering the hospice/palliative care team by 
asking questions. 
◼ Look for ways to keep and honor desired rituals and ways of life. 
 
Patient 
◼ Remember, not everyone has spiritual distress. 
◼ Have at least one person to talk with whom you trust about your 
concerns, fears, or anger. 
◼ Do not be hard on yourself for not feeling very spiritual. 
◼ Listening to devotional recordings may offer comfort. 
◼ Listening to instrumental music may be soothing. 
◼ Allow someone to pray with/for you. Meditation may be helpful. 
◼ Write, paint, or draw your feelings. 
◼ Take your medication as prescribed. 
◼ Forgive yourself, forgive others, and forgive God/higher power. 
◼ Say thank you. 
 
Family 
◼ Provide a calm, relaxing setting. 
◼ Treat the person with dignity and respect. 
◼ Be willing to be present.  Provide support. 
◼ Be willing to listen and reminisce. 
◼ Enjoy the time together, look for ways to make memories. 
◼ If asked, be open to contacting a spiritual leader (minister, rabbi, 
priest). 
 
Other HPNA Teaching Sheets on are available at www.HPNA.org. 
 
References 
 
Supiano K, Altilio T. Care of the Patient and Family. In: Core Curriculum for the 
Generalist Hospice and Palliative Nurse. 3rd ed. Dubuque, IA: Kendall/Hunt Publishing 
Company; 2010: 146-148. 
 
Ferrell BR, Coyle N. Textbook of Palliative Nursing. 3rd ed. New York, New York: Oxford 
University Press; 2011. 
 
Garvin G, Smith E, Astrow A. Spirituality. In: Panke J, Coyne P, eds. Conversations in 
Palliative Care: Questions and Answers with the Experts. 3rd ed. Pittsburgh, PA: Hospice 
and Palliative Nurses Association; 2011: 123-127. 
 
Approved by the HPNA Board of Directors October 2005 Reviewed 
by the HPNA education Services Committee January 2009 
Revised by the HPNA Education Advisory Team October 2013