Pilot Evaluation of Hospice Decision Support Tools
Phase: NA
Conditions: Hospice, End-of-life Decision Making, Hospice Decision Making
Sponsor: University of Colorado, Denver

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R21 Protocol and Analysis Plan 
Protocol #: 18-1138 
Project Title: Pilot Evaluation of Hospice Decision Support Tools 
 
 
 
 
Principal Investigator:  Dan Matlock, MD 
Version Date: 01/08/19  
 
 
 
  
 
I. Hypotheses and Specific Aims:   
The goal of this project is to determine the feasibility and acceptability of a novel 
hospice patient decision aid (PtDA). 
 
Aim 1: Determine the feasibility and acceptability of a hospice decision aid among a diverse 
population of older adults at multiple stages of illness and in two health care settings (an academic 
medical center and a county hospital system) using a mixed-methods approach. 
 
Aim 2: Determine the preliminary efficacy of the hospice decision aid on decision quality, hospice 
knowledge, and values-concordance. 
 
II. Background and Significance:  
Although hospice has existed for more than 40 years, many people and even some physicians 
do not fully understand hospice care.1 For example, many patients misunderstand the payment 
mechanism for hospice and incorrectly believe they are unable to afford hospice care, despite the 
fact that most payers cover hospice services. Some believe that enrolling in hospice requires 
institutionalization, despite evidence that 80% of hospice care occurs at home and those enrolled in 
hospice are more likely to die at home.1-3 For some hospice conveys the message of “giving up”, 
even though evidence suggests that hospice enrollees and their loved ones report a sense of hope, 
relief, and improved quality of life.4-6 Finally, people report concerns that hospice hastens death, 
despite evidence that hospice is not associated with shorter survival and in some cases hospice 
enrollees live longer than those seeking curative treatments.5,7-10 To understand how to address 
these misconceptions, we performed a qualitative needs assessment with patients, caregivers and 
healthcare providers. We found, in addition to the aforementioned misunderstandings, that hospice 
is often not presented as an option until death is imminent and caregivers are consequently 
unaware of the potential support provided by hospice. Caregivers expressed regret for not knowing 
of and not enrolling in hospice earlier in the disease course of their loved ones. The patient 
decision aid (PtDA) being studied in this application is designed specifically to address these 
misperceptions of hospice care. 
Hospice is underutilized. Despite the documented benefits of hospice, less than 2 million 
people utilize hospice services annually.2 More than one third of all hospice users spend less than 
7 days receiving care.2 Approximately 40% of eligible Medicare beneficiaries die enrolled in 
hospice. In other words, almost two-thirds of eligible patients do not benefit from the documented 
advantages of hospice care. Racial and ethnic minority patients account for only 15% of all hospice 
users.2,11  When they are enrolled, they spend less time in hospice services than white patients, 
averaging fewer than seven days enrolled in hospice care.12,13 Further, the percentage of the oldest 
old utilizing hospice services has plateaued over the last several years with little more 50% 
enrolling in hospice.14 The reasons for underutilization are complex but include knowledge barriers 
and misunderstandings about hospice care by both physicians and patients,15-17 cultural beliefs 
about death,18-20 lower health literacy in older adults and minorities,21-23 physician gatekeeping and 
late referral,16 and disparities in access to quality healthcare.15,18,19,24  
The absence of quality shared decision making (SDM) and of quality patient-centered care 
is a disparity highlighted by the Institute of Medicine.25 The goals of SDM include improved patient-
provider communication, information sharing, and collaborative decision making.15,26,27 SDM is an 
important aspect of patient-centered care.26 One strategy to support SDM is utilizing PtDAs which 
engage patients in the process of decision making by providing information on diagnosis and/or 
treatment options.28,29 PtDAs assume various forms including paper (e.g. leaflets, pamphlets, and 
booklets), electronic media (e.g. audio recordings, videos) and web-based interactive portals.30 A 
Cochrane review of 115 randomized trials of PtDAs demonstrated a reduction of decisional conflict, 

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improved patient-provider communication, and increased patient involvement in medical decision 
making.30 Video PtDAs are effective in older patients and patients with lower literacy and 
numeracy.31-33 Critical to PtDAs is the presentation of balanced, evidence-based, accurate, neutral 
and unbiased information to patients.30,34 
 
III. Preliminary Studies/Progress Report:   
We conducted and extensive qualitative needs assessment and environmental scan of 
available hospice decision aids. Though the needs assessment we interviewed 5 patients, 20 
caregivers and 27 providers (e.g. social workers, nurses, chaplains) regarding their perceptions of 
participating in hospice. In the preliminary analyses, we found that all participant groups describe 
misunderstandings and myths regarding hospice care consistent with those cited in the literature. 
Additionally, we learned that timing of introduction and initiating of hospice care was a major theme 
across all participants. Hospice is often presented as an option only when death is imminent. As a 
result, caregivers expressed regret for not being aware of or enrolling their loved ones in hospice 
earlier in the disease course.  
Our environmental scan found only 7 PtDAs that mentioned hospice as a potential 
secondary treatment option for people with illnesses such as end stage heart failure, cancer or 
kidney disease. The PtDAs did not describe the eligibility criteria hospice, the services provided by 
hospice and failed to provide resources for patients interested in hospice care. These PtDAs 
inadequately explain the nuances of hospice care as a primary treatment option and have limited 
reach to only specific populations. Further, these PtDAs fail to acknowledge the complexity of end-
of-life decision making.35 
We then brought in 20 laypersons into our lab to conduct an organic web search for 
information regarding hospice and to participate in a semi-structured interview regarding their 
perceptions of the available information. Many of the online resources that the participants found 
were promotional materials from specific hospices or other special interest groups, thus the 
participants found these materials confusing and biased. Further, the online resources failed to 
provide clear information on cost, enrollment, and lacked the desired patient and caregiver 
testimonials. Surprisingly almost all participants went to sites such as yelp to get narrative 
descriptions of hospices.35 
 
IV. Research Methods 
A.  Outcome Measure(s):   
Overview: The goal of the project is to determine the feasibility, acceptability and preliminary 
efficacy of a novel hospice decision aid. We will achieve this goal through a series of quantitative 
surveys and through qualitative methods. 
 
Aim 1. Feasibility and Acceptability Outcomes: 
Acceptability of the decision aid will be measured using the Ottawa Acceptability Scale (OAS). The 
OAS scale consists of 8 questions on a 5-point Likert scale with additional yes/no questions.36 
Feasibility will be assessed asking patients when they viewed the decision aid, if the used the 
paper version, the video version or both. We will also ask for input on the overall design and 
usefulness of the decision aid in facilitating their decisions.  
Aim 2. Preliminary Efficacy:  
Efficacy will be measured qualitatively and quantitatively through surveys. We are trying to 
determine if the decision aid improves hospice knowledge, decreases decisional conflict and 
improves self-efficacy. 
• 
Description of qualitative writing sample: Hospice knowledge will be qualitatively assessed 
prior to randomization at the baseline visit to better understand the misconceptions 
associated with hospice care. Matsuyama et al37 described a brief qualitative assessment 
in which participants are asked to describe “what is hospice” in their words. Participants will 
provide their answers on paper. These brief writings will be analyzed using thematic 
content analysis. 

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Figure 1. Recruitment 
• 
Knowledge of Hospice Test: The Knowledge of Hospice Test is a 23-item scale with 
true/false questions.1,38 The Cronbach’s alpha coefficient for the scale is 0.75 showing 
good internal reliability.  
• 
Decision Self-efficacy: Is an 11-item instrument that one’s self-confidence in decision 
making. This scale is a validated scale with a Cronbach’s alpha of 0.92 and correlates with 
DCS subscale of being informed (r=0.47). Based on our prior study of a decision aid in 
palliative care, we hypothesize that one of the strongest effects of a decision aid might be 
to increase self-efficacy of the decision making.31   
Hospice Beliefs and Attitude Scale (HBAS): The HBAS is an 8-item scale developed to 
measure beliefs and attitudes towards hospice care.39 It has a Cronbach’s α = .74 for the 
scale, indicating a good degree of internal reliability. 
B. Description of Population to be Enrolled:   
Patients: Patients will be older adults age ≥65 with at least one life-limiting illness or syndrome as 
defined by the clinicians.  
 
Exclusions: We will exclude patients who cannot speak English. In future work, we plan to make a 
Spanish version if this version is deemed acceptable.  We will exclude patients with cognitive 
impairment as determined by ability to provide informed consent. We will also exclude patients on 
isolation precautions due to resistant bacteria or impaired immune function. 
 
 
C. Study Design and Research Methods   
Settings: For this pilot, we will recruit from Denver Health Medical Center and UCHealth. At each 
site, we will recruit patents from both the inpatient and 
outpatient palliative care services and the outpatient geriatric 
and primary care clinics. In order to get perspectives on 
feasibility of the PtDA in populations at different places in their 
illness trajectory. We plan to recruit 120 patients (Figure 1). 
Hundreds of patients each year who meet our eligibility criteria 
are served in each setting, so we will have no difficulty 
recruiting 20-25 patients from each site/setting. 
 
Recruitment: Patients will be identified differently in each setting:  
• 
In the outpatient setting, potential patients will be identified through weekly chart reviews. 
The study team will communicate with the outpatient physician by his/her preferred 
communication method (e.g. email, phone) to determine whether the patients are appropriate 
to be approached. Reasons for non-approach will be recorded. If eligible and appropriate, a 
research team member will approach the patient and introduce the study following their clinical 
encounter. 
• 
In the inpatient settings, the study team will speak with the palliative care teams twice a week 
to identify eligible patients who are currently being followed by the consult service. Then, a 
member of the study team will contact the attending physician of record for the patient to 
determine if he or she has concerns with the patient being approached regarding enrollment in 
the study. If eligible and appropriate, a research team member will approach the patient and 
introduce the study. 
 
Research Methods: This will be a patient-level trial randomized in a 2:1 intervention: control (see 
figure 1 above).  
• 
Control - No PtDA: Patients assigned to the control group will receive usual care. On the 
palliative care service, this typically includes a team with a physician, an advanced practice 
nurse, and occasionally other team member including a chaplain or a social worker. This 
consultation typically includes a discussion of advanced directives, symptoms, and prognosis. 
In the primary care settings, this is more variable and is a function of the primary care 
physician’s practice and the patient’s clinical situation. 

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• 
Intervention - PtDA:  In addition to usual care, patients assigned to the intervention group will 
also be asked to view the hospice-PtDA. In the inpatient setting, the PtDA can be utilized 
anytime in the course of their hospitalization (all hospital rooms have a DVD player for the 
video). This could be before, during, or after the palliative care team consultation. In the 
outpatient setting, the patient will receive the PtDA after a clinic visit and will be allowed to take 
it home. In both settings, we have chosen a model with the PtDA delivery facilitated by 
research staff. The staff will NOT sit with patients while they watch the PtDA, as to allow 
patients to declare their desired use without study staff influence.  
  
Data collection: For patients who agree to participate, the study coordinator will collect baseline 
demographic and quantitative data (surveys described above in Section A). The research 
coordinator will then open the envelope to determine the patient’s allocation. Control patients will 
be asked to complete the baseline measures at time of enrollment and again at 1-month follow-up. 
Intervention patients will be given the decision aid and asked to review it within the next week. 
Then the best way to contact them 1 week later will be recorded (for outpatients, this will likely be 
at home by phone, for inpatients, this will likely be in the hospital.) Then the baseline surveys will 
be administered again by phone. Finally, each participant (control and intervention) will be 
contacted at one month for the final data point collection. $25 gift cards will be given for baseline 
and one-month follow-up surveys.   
• 
Baseline visit (control & Intervention)- All participants will be asked to complete the 
Hospice Knowledge Test, Decisional Conflict Scale, Decision Self-efficacy scale, SPMSQ, 
HADSA, PHQ-9 and demographics.  
• 
1 week  Follow-up call (intervention only)-Participants will be asked to complete the 
Hospice Knowledge Test, Decisional Conflict scale, Decision Self-efficacy scale and brief 
qualitative survey.  
• 
One Month Follow-up (control & intervention)-At one month follow-up all participants 
will be asked to complete the Hospice Knowledge Test, Decisional Conflict scale and the 
Decision Self-efficacy scale. 
 
D.   Description, Risks and Justification of Procedures and Data Collection Tools: 
The study team believes that this project poses minimal risk to all subjects involved. The 
intervention involves review of decisional support materials and a series of quantitative and 
qualitative questions.  Data collection from participants includes questions and medical record 
review to screen for eligibility and only limited demographic data will be obtained. Audio-recordings 
of all qualitative will be kept on a secure server on the University network to which only the study to 
will have access. There is always a risk that participants may feel uncomfortable discussing 
hospice or end-of-life decisions. Participants will be informed of their right to refuse to answer any 
question they do not wish to answer, and may terminate participation in the study at any point (and 
that should they decline to participate, answer a question or withdraw this will not affect their 
medical care).  
Data collection and storage has been planned to appropriately protect participant 
confidentiality. All patients will be given a unique identification number, and study data and 
identifiable information will always be kept separate. REDCap, the COMIRB-preferred system, will 
be used to store all survey and enrollment data, and the University’s secure server will be used to 
store clinic audio files, interview audio files, transcripts and notes; access to both REDCap and the 
secure server will be limited to study personnel only. All paper documents will be stored in a secure 
and locked file cabinet in a secure and locked office building – again, all study data paperwork will 
be stored separate from paperwork with identifiable information (i.e. signed consent forms) and be 
accessible to study personnel only. 
    
E.   Data Analysis Plan:   
Qualitative Data: The open-ended qualitative question will be analyzed using inductive and 
deductive content analysis.40-42 The deductive approach will identify participant knowledge of key 
domains of hospice. The inductive approach will identify any key misconceptions or fallacies 

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expressed by participants in the study. The quantitative acceptability and feasibility measures will 
be analyzed descriptively with means and interquartile ranges. Analysis of qualitative data will be a 
continuous process beginning with initial interviews and continuing throughout and beyond the data 
generation period. All interviews will be audio-recorded and professionally transcribed verbatim. A 
multidisciplinary team, led by Dr. Morris will begin the analysis process with repeated readings of 
the transcripts to achieve immersion. The team will then develop and apply a list of codes to the 
transcripts using an emergent rather than a priori approach, in order to emphasize interviewee 
perspectives and de-emphasize team member speculations.43,44 All coded data will be entered into 
Atlas.ti v 7.0 (GmbH, Berlin) for data management. Coded transcripts will be analyzed within and 
across sites and settings to develop the major themes or concepts that the participants reported. 
The trustworthiness of study results will be enhanced through triangulation of the data and an audit 
trail throughout the data collection and analysis process. Following the interpretation of the 
qualitative findings, we will compare and contrast the results with the findings from the quantitative 
surveys using methods consistent with the NIH guidelines on mixed methods research.45 
 
Quantitative Data: We will compare differences between intervention and control using t-tests for 
continuous outcomes and chi-square tests for dichotomous outcomes. We will perform a 
multivariate analysis of our outcome variables (i.e. hospice knowledge, self-efficacy and decisional 
conflict) and look for mediation and/or moderation effects of age, race, and gender; while 
controlling for potential confounders. There is no power calculation as this is a pilot trial designed to 
test feasibility and acceptability.   
 
G.  Summarize Knowledge to be Gained:   
Through this R21 pilot project, we will answer several key questions regarding the utility of this 
hospice decision aid. Our innovative decision in which we intervene at three different time points 
(primary care, outpatient palliative care and inpatient palliative care) will provide valuable insights 
on when in the disease trajectory is appropriate to discuss hospice care with patients and loved 
ones. We will also gather data and when and how patients use these decision aids which will 
inform future research on implementation of decision aids and best formats  
(i.e. paper vs video) to present decision aids to patients. If this PtDA proves to be feasible and 
acceptable with positive preliminary efficacy, we will move forward with a multi-site pragmatic RO1. 
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