bluuebunny/crossref_metadata_2025 huggingface dataset:
What Matters Most? A Mixed Methods Study of Critical Aspects of a Home-Based Palliative Program
Authors: Ankuda Claire K. , Kersting Kaileen , Guetterman Timothy C. , Haefner Jessica , Fonger Evan , Paletta Michael , Hopp Faith
Published: November 2017

Background:

Home-based palliative care programs have shown value in improving quality of care and lowering costs for seriously ill patients. It is unknown what specific elements of these programs matter most to patients and caregivers.

Aim:

To identify what services are critical and why they matter to patients in a home-based palliative program.

Setting/Participants:

A mixed methods study of 18 participants in the At Home Support (AHS) program in Southeast Michigan.

Measurements:

Two semistructured interviews were conducted for each participant, one while enrolled in AHS and another 3 months after the program ended to elicit the impact of AHS on their care. Qualitative theme data were merged with quantitative data on demographics, social and financial resources, symptoms, medical conditions, functional status, and utilization of health care while in AHS.

Results:

Four major themes of critical services reported by distinct populations of participants were described—medical support, endorsed by nearly every participant; emotional and spiritual support, endorsed by those with serious illness and symptom burden; practical assistance, endorsed by those with functional disability and isolation; and social services, endorsed by those in poverty. Medical monitoring was also described as critical but only by healthier participants.

Conclusion:

This study presents a conceptual model of the critical services in home-based palliative care and why these services are important to high-risk patients. This model may be used to guide further research and evaluation work on the benefits of home-based palliative care.
Multidisciplinary Training on Spiritual Care for Patients in Palliative Care Trajectories Improves the Attitudes and Competencies of Hospital Medical Staff: Results of a Quasi-Experimental Study
Authors: van de Geer Joep , Veeger Nic , Groot Marieke , Zock Hetty , Leget Carlo , Prins Jelle , Vissers Kris
Published: November 2017

Objectives:

Patients value health-care professionals’ attention to their spiritual needs. However, this is undervalued in health-care professionals’ education. Additional training is essential for implementation of a national multidisciplinary guideline on spiritual care (SC) in palliative care (PC). Aim of this study is to measure effects of a training program on SC in PC based on the guideline.

Methods:

A pragmatic multicenter trial using a quasi-experimental pretest–posttest design as part of an action research study. Eight multidisciplinary teams in regular wards and 1 team of PC consultants, in 8 Dutch teaching hospitals, received questionnaires before training about perceived barriers for SC, spiritual attitudes and involvement, and SC competencies. The effect on the barriers on SC and SC competencies were measured both 1 and 6 months after the training.

Results:

For nurses (n = 214), 7 of 8 barriers to SC were decreased after 1 month, but only 2 were still after 6 months. For physicians (n = 41), the training had no effect on the barriers to SC. Nurses improved in 4 of 6 competencies after both 1 and 6 months. Physicians improved in 3 of 6 competencies after 1 month but in only 1 competency after 6 months.

Significance of Results:

Concise SC training programs for clinical teams can effect quality of care, by improving hospital staff competencies and decreasing the barriers they perceive. Differences in the effects of the SC training on nurses and physicians show the need for further research on physicians’ educational needs on SC.
Aspects and Intensity of Pediatric Palliative Case Management Provided by a Hospital-Based Case Management Team: A Comparative Study Between Children With Malignant and Nonmalignant Disease
Authors: Jagt-van Kampen Charissa T. , Colenbrander Derk A. , Bosman Diederik K. , Grootenhuis Martha A. , Kars Marijke C. , Schouten-van Meeteren Antoinette YN
Published: November 2017

Objectives:

Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children’s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT.

Methods:

Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT.

Results:

Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases).

Significance of Results:

This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT.
Single Institute Experience With Methylphenidate and American Ginseng in Cancer-Related Fatigue
Authors: Chang Young D. , Smith Joshua , Portman Diane , Kim Richard , Oberoi-Jassal Ritika , Rajasekhara Sahana , Davis Mellar
Published: November 2017

Background:

Single therapy with methylphenidate or American ginseng contributes to the reduction in cancer-related fatigue (CRF) with different pharmacologic mechanisms and is relatively safe. However, the safety and efficacy of treating CRF with methylphenidate and AG combination therapy is unknown.

Aim:

The primary objective was to assess the clinical safety and the change in fatigue with numerical rating scale (NRS) on the Edmonton Symptom Assessment Scale (ESAS) after intervention with methylphenidate and AG combination therapy.

Methods:

We reviewed the electronic medical records of 857 patients seen in our Palliative Medicine outpatient clinic between February 1, 2015, and December 31, 2015. Fatigue was assessed by NRS on ESAS. Toxicity was reviewed on clinician’s documents.

Results:

We identified 28 patients who were prescribed a combination of methylphenidate (10-40 mg/d) and AG (2000 mg/d). Ten patients did not comply with the combination therapy. Three patients had stage 2 adverse effects. Fifteen patients completed prescribed combination therapy per instructions. The mean time interval between pre- and postintervention follow-up was 30.5 days (standard deviation [SD]: 7.78). There was a significant reduction in the fatigue score (mean score 6.93-4.13) from the pre- to postscore records (mean: −2.8; SD: 1.61; P < .0002* [*refers to statistically significant]). Sixty percent of patients reported significant reduction in fatigue (cutoff value: ≥3; reduction in fatigue score from baseline: 80% ≥2, 60% ≥3, and 46.7% ≥4).

Conclusion:

In our retrospective medical record review, the combination treatment of methylphenidate and AG had no discernible associated toxicities and showed potential clinical benefit in CRF.
End-of-Life Care and Discussions in Japanese Geriatric Health Service Facilities: A Nationwide Survey of Managing Directors’ Viewpoints
Authors: Kanoh Asako , Kizawa Yoshiyuki , Tsuneto Satoru , Yokoya Shoji
Published: November 2017

Background:

Geriatric health service facilities (GHSFs) play important roles as intermediate care facilities for elderly individuals temporarily when they need rehabilitation before returning home. However, the number of residents spending their end-of-life (EOL) period in such facilities is increasing. To improve the quality of EOL care, end-of-life discussions (EOLDs) are recommended by some guidelines and studies.

Aim:

This study aimed to clarify the current practice of EOL care and EOLDs in GHSFs in Japan.

Methods:

We conducted a nationwide cross-sectional survey by mailing questionnaires about EOL care and EOLDs to 3437 GHSF managing directors. The questionnaire was developed through a literature review and discussion among the researchers and experts. Descriptive statistics summarized the data. We also analyzed the factors related to GHSFs conducting EOLDs using Fisher exact tests.

Results:

The response rate was 20.7% (713 of 3437). Among the respondents, 75.2% (536 of 713) of GHSFs provided EOL care and 73.1% (521 of 713) conducted EOLDs. The most common reasons for difficulties in providing EOL care included the lack of EOL education for nurses and care workers, and their fear about caring for dying residents. End-of-life discussions were mostly initiated after the deterioration of a resident’s condition and were conducted with families by physicians. Statistically significant factors of GHSFs conducting EOLDs included providing EOL education for nurses and care workers, availability of private room for critically ill residents, emergency on-call doctors, and EOL care.

Conclusion:

Adequate practical staff education programs for EOL care including EOLDs may be crucial for quality of end-of-life care in aged care facilities.
Outcomes of Music Therapy Interventions on Symptom Management in Palliative Medicine Patients
Authors: Gallagher Lisa M. , Lagman Ruth , Rybicki Lisa
Published: November 2017

Purpose:

Evidence has demonstrated the positive effects of music therapy on symptom management for palliative medicine patients. Previous studies have addressed patient needs, with limited discussion involving the relationship between interventions utilized to improve symptoms. The purpose of this study was to understand the impact of music therapy sessions; identify common music therapy goals and interventions and assess their effect; and investigate the effects of gender, age, and type of cancer on symptoms in patients who experienced music therapy.

Methods:

This was a retrospective study of data collected during music therapy sessions. Patients scored their symptoms (pain, anxiety, depression, shortness of breath, and mood) before and after sessions. Data collected from over 1500 patients included symptom evaluation, goals, interventions, music used, patient/family reactions, and narratives.

Results:

Among 293 patients who met all study inclusion criteria, significant improvement in pain, anxiety, depression, shortness of breath, mood, facial expression, and vocalization scores was noted. In addition, 96% of patients had positive responses to participating in music therapy. Vocal and emotional were the 2 most effective interventions in improving symptoms. All 5 patient-reported symptoms improved when the therapist focused on these symptoms as goals. Age, gender, and diagnosis had no impact on symptom improvement.

Conclusions:

This study demonstrated the importance of music therapy for addressing symptoms and behaviors of palliative medicine patients. Statistically and clinically significant effects were noted. The most effective interventions were identified. More research needs to be conducted to better understand the benefits of music therapy for palliative medicine patients.
“It Has Changed My Life”: An Exploration of Caregiver Experiences in Serious Illness
Authors: Anderson Eric W. , White Katie M.
Published: November 2017

Background:

Informal, unpaid caregivers shoulder much of the care burden for individuals with serious illness. As part of a project to create an innovative model of supportive care for serious illness, a series of user interviews were conducted, forming the basis for this article.

Objective:

To understand both individual and interpersonal aspects of caregiving for serious illness.

Methods:

Twelve semistructured group interviews were conducted with patients, families, and professionals as part of a larger study of late-life serious illness. Transcript data were analyzed with descriptive coding, and then coded material was analyzed to elicit major themes and subthemes.

Results:

A total of 73 individuals participated in group interview sessions. Using descriptive coding, quotes were assigned to first-order codes of rewards, challenges, and a category of learnings and adaptations. Subthemes of reward included gratitude, a sense of accomplishment or mastery, and closeness in personal relationships. The most oft-cited challenges included emotional and physical stresses of caregiving and feeling unprepared or unsupported in caregiving. Reflecting on their experiences, caregivers cited new ways in which they had learned to be creative, to show assertiveness and advocacy, and to create personal balance in a demanding situation.

Conclusions:

The experience of caregiving is a life-altering journey as individuals rise to challenges and reflect on the rewards. Caregivers described intensive caregiving, often without acknowledgment or understanding of their role from the health-care system. This invisibility created its own iatrogenic caregiving challenge. The identified themes suggest avenues of meaningful caregiver support that bear further exploration.
Sleep Problems, Anxiety, and Global Self-Rated Health Among Hospice Family Caregivers
Authors: Washington Karla T. , Parker Oliver Debra , Smith Jamie B. , McCrae Christina S. , Balchandani Shanky M. , Demiris George
Published: November 2017

Background:

Although research has linked sleep problems, anxiety, and poor health outcomes among patients’ family members in nonhospice settings, little is known about these often interrelated issues among hospice family caregivers.

Objectives:

We sought to examine the relationships between sleep problems, anxiety, and global self-rated health among hospice family caregivers.

Methods, Setting, and Patients:

We conducted a secondary analysis of quantitative data from 395 family caregivers of hospice patients in the Midwest and Southeastern United States.

Results:

Nearly one-third of the hospice family caregivers who participated in this study experienced clinically noteworthy levels of sleep problems and/or anxiety. Caregivers’ symptoms of anxiety and sleep problems were strongly correlated. Caregivers who reported more frequent sleep problems and higher levels of anxiety reported poorer overall health.

Conclusion:

Hospice providers, who are charged with attending to the needs of both patients and their family caregivers, may improve their practice by regularly assessing for sleep problems and anxiety among family caregivers and providing appropriate interventions or referrals.
Pneumonia in Nursing Home Patients With Advanced Dementia: Decisions, Intravenous Rehydration Therapy, and Discomfort
Authors: van der Steen Jenny T. , Di Giulio Paola , Giunco Fabrizio , Monti Massimo , Gentile Simona , Villani Daniele , Finetti Silvia , Pettenati Francesca , Charrier Lorena , Toscani Franco
Published: November 2017

Background:

Comfort may be an appropriate goal in advanced dementia. Longitudinal studies on physician decision-making and discomfort assessed by direct observation are rare, and intravenous rehydration therapy is controversial.

Methods:

To assess treatment decisions and discomfort in patients with advanced dementia and pneumonia and to compare by intravenous rehydration therapy, we used data from the observational multicenter Italian End of Life Observatory–Prospective Study On DEmentia patients Care. We analyzed 109 episodes of pneumonia, which involved decisions in 77 nursing home patients with Functional Assessment Staging Tool stage 7. We assessed decisions, decision-making, and treatments every fortnight. Trained observers assessed discomfort with the Discomfort Scale–Dementia Alzheimer Type (DS-DAT).

Results:

Most decisions referred to treatment with antibiotics (90%; 98 of 109) and intravenous rehydration therapy (53%; 58 of 109), but hospitalization was rare (1%). Selecting decisions with antibiotics, with rehydration therapy, the prognosis was more frequently <15 days (34% vs 5% without rehydration therapy; P = .001), and a goal to reduce symptoms/suffering was more common (96% vs 74%; P = .005) while there was no difference in striving for life prolongation (a minority). With rehydration therapy, the decision was more often discussed with family rather than communicated only. Mean DS-DAT scores over time proximate to the first decision ranged between 9.2 and 10.5.

Conclusions:

Italian nursing home patients with advanced dementia and pneumonia frequently received invasive rehydration therapy in addition to antibiotics, however, mostly with a palliative intent. Discomfort was high overall and symptom relief may be improved. Relations between invasive rehydration therapy and discomfort need further study.
“This Is What Family Does”: The Family Experience of Caring for Serious Illness
Authors: Anderson Eric W. , White Katie M.
Published: November 2017

Background:

As the demographics of caregiving in United States evolve toward multigenerational, distributed family structures, the ways in which individuals and their families experience serious illness are changing. As part of a project to create an innovative model of supportive care for serious illness, a series of user interviews were conducted, forming the basis for this article.

Objective:

To understand the experience of caregiving for individuals with serious illness from an intergenerational family perspective.

Methods:

Twelve semistructured group interviews were conducted with patients, families, and professionals. Transcript data were analyzed with descriptive coding, looking for major themes and subthemes related to family experiences.

Results:

Seventy-three individuals participated in group interview sessions. While both families and individuals encountered caregiving challenges, the family unit experienced care in several unique ways. It accommodated differences in temperament and readiness, managed internal conflict, and strived to emerge as a cohesive unit. Individual struggles were often magnified or, more often, ameliorated by family context. Caregiving itself formed a legacy for future generations. Finally, care was seen as bidirectional, being tendered both by the family caregivers and in turn by the patient.

Conclusions:

When talking about care for serious illness, individuals report both rewards and challenges, often in a family context. The family enterprise manages a loved one’s care, negotiates the health-care system, and adjusts its own internal dynamics. Integrating the family narrative provides a more balanced view of the family system that provides the day-to-day care for individuals with serious illness.
Preliminary Analysis of a Modified Screening Tool to Increase the Frequency of Palliative Care Consults
Authors: Hurst Emily , Yessayan Lenar , Mendez Michael , Hammad Aws , Jennings Jeffrey
Published: November 2017

Purpose:

Palliative care interventions have been shown to improve patient quality of life but the benefit may be less if interventions occur late in the patient’s disease process. The objective of this study was to evaluate whether an objective screening tool could improve the frequency and timeliness of palliative care consultation.

Methods:

Using a quasi-experimental design with 2 geographically separate medical intensive care units (MICUs), the control MICU continued existing consultation practice and the intervention MICU implemented a screening tool with each new admission. Any item checked on the screening tool triggered a palliative care consult within 24 hours of admission to the MICU.

Results:

A total of 223 MICU admissions were evaluated: 156 patients in the control group and 67 patients in the intervention group. More consults were generated in the intervention group (22.39%) compared to the control group (7.05%; P < .001). The median time to consultation was lower in the intervention group compared to the control group (1 day vs 2 days; P < .01).

Conclusion:

Implementing a simple, objective screening tool increased palliative consultation rates and decreased median time to palliative consultation in our institution’s MICU.
Access to Palliative Care for Patients Undergoing Mechanical Ventilation With Idiopathic Pulmonary Fibrosis in the United States
Authors: Rush Barret , Berger Landon , Anthony Celi Leo
Published: November 2017

Objective:

The utilization of palliative care (PC) in patients with end-stage idiopathic pulmonary fibrosis (IPF) is not well understood.

Methods:

The Nationwide Inpatient Sample (NIS) was utilized to examine the use of PC in mechanically ventilated (MV) patients with IPF. The NIS captures 20% of all US inpatient hospitalizations and is weighted to estimate 95% of all inpatient care.

Results:

A total of 55 208 382 hospital admissions from the 2006 to 2012 NIS samples were examined. There were 21 808 patients identified with pulmonary fibrosis, of which 3166 underwent mechanical ventilation and were included in the analysis. Of the 3166 patients in the main cohort, 408 (12.9%) had an encounter with PC, whereas 2758 (87.1%) did not. After multivariate logistic regression modeling, variables associated with increased access to PC referral were age (odds ratio [OR]: 1.02, 95% confidence interval [CI]: 1.01-1.03, P < .01), treatment in an urban teaching hospital (OR: 1.49, 95% CI: 1.27-3.58, P < .01), and do-not-resuscitate status (OR: 9.86, 95% CI: 7.48-13.00, P < .01). Factors associated with less access to PC were Hispanic race (OR: 0.64, 95% CI: 0.41-0.99, P = .04) and missing race (OR: 0.52, 95% CI: 0.34-0.79, P < .01), with white race serving as the reference. The use of PC has increased almost 10-fold from 2.3% in 2006 to 21.6% in 2012 ( P < .01).

Conclusion:

The utilization of PC in patients with IPF who undergo MV has increased dramatically between 2006 and 2012.
Toward Mentoring in Palliative Social Work: A Narrative Review of Mentoring Programs in Social Work
Authors: Toh Ying Pin , Karthik R. , Teo Chia Chia , Suppiah Sarasvathy , Cheung Siew Li , Krishna Lalit
Published: November 2017

Background:

Mentoring by an experienced practitioner enhances professional well-being, promotes resilience, and provides a means of addressing poor job satisfaction and high burnout rates among medical social workers. This is a crucial source of support for social workers working in fields with high risk of compassion fatigue and burnout like palliative care. Implementing such a program, however, is hindered by differences in understanding and application of mentoring practice.

Aim:

This narrative review of mentoring practice in social work seeks to identify key elements and common approaches within successful mentoring programs in social work that could be adapted to guide the design of new mentoring programs in medical social work.

Methodology and Data Sources:

A literature search of mentoring programs in social work between January 1, 2000, and December 31, 2015, using Pubmed, CINAHL, OVID, ERIC, Scopus, Cochrane and ScienceDirect databases, involving a senior experienced mentor and undergraduate and/or junior postgraduates, was carried out. A total of 1302 abstracts were retrieved, 22 full-text articles were analyzed, and 8 articles were included.

Results:

Thematic analysis of the included articles revealed 7 themes pertaining to the mentoring process, outcomes and barriers, and the characteristics of mentoring relationships, mentors, mentees, and host organizations.

Discussion and Conclusion:

Common themes in prevailing mentoring practices help identify key elements for the design of an effective mentoring program in medical social work. We conclude with a discussion of the implications of these findings upon clinical practice in palliative care and on sustaining such a program.
Severely Affected by Parkinson Disease: The Patient’s View and Implications for Palliative Care
Authors: Strupp Julia , Kunde Anne , Galushko Maren , Voltz Raymond , Golla Heidrun
Published: November 2017

Introduction:

People severely affected by Parkinson disease (PD)/atypical parkinsonism (AP) comprise a heterogeneous group with distinct needs, which so far remain largely unexamined. The aim of our study was to analyze reasons for feeling severely affected and document unmet needs in a patient subgroup severely affected by PD/AP using solely a subjective inclusion criterion.

Methods:

Patients feeling severely affected by PD/AP were recruited via a magazine published by the German Parkinson Association. A questionnaire was sent out nationwide. Besides analyzing the closed-ended questions, a subsample of 40% was analyzed regarding the open-ended questions using content analysis. Correlations between subjectively felt severe affectedness and objective criteria were calculated.

Results:

Eight hundred fourteen questionnaires were analyzed. Sample characteristics were: mean age 70 years; 60.3% male; time since diagnosis up to 37 years; and Hoehn and Yahr score (if known) 3 (44.6%), followed by 4 (23.9%). Significant associations were observed between subjectively felt severe affectedness and Hoehn and Yahr ( P ≤ .05), poorer health ( P ≤ .01), higher nursing care level ( P ≤ 0.01), and having no children ( P ≤ .05). Most common reasons for feeling severely affected were mobility impairment (34.9%), coordination problems (17.0%), speech problems (12.2%), and limited day-to-day activities (7.8%). Most often expressed unmet needs were support in everyday life (28.1%), medical treatment (15.2%), help with financial services (11.6%), and social integration (9.9%).

Conclusions:

To meet the complex needs, an integrated multidisciplinary and multiprofessional approach is indicated befitting palliative care principles. Herein, home-based services seem of special importance for patients in advanced disease stages.
End-of-Life Conversation Game Increases Confidence for Having End-of-Life Conversations for Chaplains-in-Training
Authors: Van Scoy Lauren Jodi , Watson-Martin Elizabeth , Bohr Tiffany A. , Levi Benjamin H. , Green Michael J.
Published: November 2017

Context:

Discussing end-of-life issues with patients is an essential role for chaplains. Few tools are available to help chaplains-in-training develop end-of-life communication skills.

Objective:

This study aimed to determine whether playing an end-of-life conversation game increases the confidence for chaplain-in-trainings to discuss end-of-life issues with patients.

Methods:

We used a convergent mixed methods design. Chaplains-in-training played the end-of-life conversation game twice over 2 weeks. For each game, pre- and postgame questionnaires measured confidence discussing end-of-life issues with patients and emotional affect. Between games, chaplains-in-training discussed end-of-life issues with an inpatient. One week after game 2, chaplains-in-training were individually interviewed. Quantitative data were analyzed using descriptive statistics and Wilcoxon rank-sum t tests. Content analysis identified interview themes. Quantitative and qualitative data sets were then integrated using a joint display.

Results:

Twenty-three chaplains-in-training (52% female; 87% Caucasian; 70% were in year 1 of training) completed the study. Confidence scores (scale: 15-75; 75 = very confident) increased significantly after each game, increasing by 10.0 points from pregame 1 to postgame 2 ( P < .001). Positive affect subscale scores also increased significantly after each game, and shyness subscale scores decreased significantly after each game. Content analysis found that chaplains-in-training found the game to be a positive, useful experience and reported that playing twice was beneficial (not redundant).

Conclusion:

Mixed methods analysis suggest that an end-of-life conversation game is a useful tool that can increase chaplain-in-trainings’ confidence for initiating end-of-life discussions with patients. A larger sample size is needed to confirm these findings.
Practice and Perceived Importance of Advance Care Planning and Difficulties in Providing Palliative Care in Geriatric Health Service Facilities in Japan: A Nationwide Survey
Authors: Yokoya Shoji , Kizawa Yoshiyuki , Maeno Takami
Published: November 2017

Background:

The provision of end-of-life (EOL) care by geriatric health service facilities (GHSFs) in Japan is increasing. Advance care planning (ACP) is one of the most important issues to provide quality EOL care. This study aimed to clarify the practice and perceived importance of ACP and the difficulties in providing palliative care in GHSFs.

Methods:

A self-report questionnaire was mailed to head nurses at 3437 GHSFs nationwide. We asked participants about their practices regarding ACP, their recognition of its importance, and their difficulties in providing palliative care. We also analyzed the relationship between these factors and EOL care education.

Results:

Among 844 respondents (24.5% response rate), approximately 69% to 81% of head nurses confirmed that GHSF residents and their families understood disease conditions and goals of care. There was a large discrepancy between the actual practice of ACP components and the recognition of their importance (eg, asking residents about existing advance directive [AD; 27.5% practiced it, while 79.6% considered it important]; recommending completion of an AD [18.1% vs 68.4%], and asking for designation of a health-care proxy [30.4% vs 76.8%]). The EOL care education was provided at 517 facilities (61.3%). Head nurses working at EOL care education–providing GHSFs practiced ACP significantly more frequently and had significantly fewer difficulties in providing palliative care.

Conclusion:

A large discrepancy was found between GHSF nurses’ practice of ACP and their recognition of its importance. Providing EOL care education in GHSFs may increase ACP practices and enhance respect for resident’s preferences concerning EOL care.
Palliative Care Gaps in Providing Psychological Treatment: A Review of the Current State of Research in Multidisciplinary Palliative Care
Authors: Kozlov Elissa , Niknejad Bahar , Reid M. C.
Published: November 2017

Background:

Patients with advanced illness often have high rates of psychological symptoms. Many multicomponent palliative care intervention studies have investigated the efficacy of overall symptom reduction; however, little research has focused explicitly on how interventions address psychological symptoms associated with serious illness.

Methods:

The current study reviewed 59 multicomponent palliative care intervention articles and analyzed the mental health components of palliative care interventions and their outcomes in order to better understand the current state of psychological care in palliative care.

Results:

The majority of articles (69.5%) did not provide any details regarding the psychological component delivered as part of the palliative care intervention. Most (54.2%) studies did not specify which provider on the team was responsible for providing the psychological intervention. Studies varied regarding the type of outcome measure utilized; multi-symptom assessment scales were used in 54.2% of studies, mental health scales were employed in 25.4%, quality of life and distress scales were used in 16.9%, and no psychological scales were reported in 28.8%. Fewer than half the studies (42.4%) documented a change in a psychological outcome.

Discussion and Conclusion:

The majority of analyzed studies failed to describe how psychological symptoms were identified and treated, which discipline on the team provided the treatment, and whether psychological symptoms improved as a result of the intervention. Future research evaluating the effects of palliative care interventions on psychological symptoms will benefit from using reliable and valid psychological outcome measures and providing specificity regarding the psychological components of the intervention and who provides it.
Pilot Study of an Interprofessional Palliative Care Curriculum: Course Content and Participant-Reported Learning Gains
Authors: Starks Helene , Coats Heather , Paganelli Tia , Mauksch Larry , van Schaik Eileen , Lindhorst Taryn , Hurd Caroline , Doorenbos Ardith
Published: November 2017

Context:

The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines recommend that palliative care clinicians work together as interprofessional teams. We created and piloted a 9-month curriculum that focused on 3 related domains: (1) patient-centered, narrative communication skills; (2) interprofessional team practice; and (3) metrics and systems integration. The multifaceted curriculum was delivered through 16 webinars, 8 online modules, 4 in-person workshops, reflective skill practice, written reflections, and small group online discussions.

Objectives:

Report evaluations of the course content and skill self-assessments from 24 interprofessional palliative care clinicians.

Methods:

Participants rated each learning activity and completed a retrospective pre–post test skill assessment. Learning gains were measured as the difference in the percentage of participants reporting “strong” or “highly competent” skill levels at baseline and the end of the course. Participants also provided examples of how they used the skills in practice.

Results:

Participants achieved an average learning gain of 50% across all domains, and in each domain communication (54%), interprofessional team practice (52%), and metrics and systems integration (34%). They also gave high ratings for the curriculum content (overall mean [standard deviation] rating of 5.5 (0.7) out of 6). Examples of practice impacts included improved skills in responding to emotions, understanding the equal importance of all professions on their team and incorporating different perspectives into their practice, and learning about outcome measurement in palliative care.

Conclusion:

This curriculum demonstrated success in increasing perceived skills for interprofessional palliative care clinicians in advanced communication, team practice, and metrics and system integration.
Patterns of Palliative Care Referral in Patients Admitted With Heart Failure Requiring Mechanical Ventilation
Authors: Wiskar Katie J. , Celi Leo Anthony , McDermid Robert C. , Walley Keith R. , Russell James A. , Boyd John H. , Rush Barret
Published: November 2017

Background:

Palliative care is recommended for advanced heart failure (HF) by several major societies, though prior studies indicate that it is underutilized.

Aim:

To investigate patterns of palliative care referral for patients admitted with HF exacerbations, as well as to examine patient and hospital factors associated with different rates of palliative care referral.

Design:

Retrospective nationwide cohort analysis utilizing the National Inpatient Sample from 2006 to 2012. Patients referred to palliative care were compared to those who were not.

Setting/Participants:

Patients ≥18 years of age with a primary diagnosis of HF requiring mechanical ventilation (MV) were included. A cohort of non-HF patients with metastatic cancer was created for temporal comparison.

Results:

Between 2006 and 2012, 74 824 patients underwent MV for HF. A referral to palliative care was made in 2903 (3.9%) patients. The rate of referral for palliative care in HF increased from 0.8% in 2006 to 6.4% in 2012 ( P < .01). In comparison, rate of palliative care referral in patients with cancer increased from 2.9% in 2006 to 11.9% in 2012 ( P < .01). In a multivariate logistic regression model, higher socioeconomic status (SES) was associated with increased access to palliative care ( P < .01). Racial differences were also observed in rates of referral to palliative care.

Conclusion:

The use of palliative care for patients with advanced HF increased during the study period; however, palliative care remains underutilized in this setting. Patient factors such as race and SES affect access to palliative care.
Pain Management Concerns From the Hospice Family Caregivers’ Perspective
Authors: Chi Nai-Ching , Demiris George , Pike Kenneth C. , Washington Karla , Oliver Debra Parker
Published: November 2017

Background:

Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers’ perspectives.

Objectives:

To identify the challenges related to pain management faced by family caregivers in hospice care and to examine the validity of an existing framework that outlines pain management challenges for hospice family caregivers.

Design:

We conducted a theory-driven, deductive content analysis of secondary data obtained from hospice family caregivers’ interviews from a randomized clinical trial.

Setting/Participants:

We included baseline interviews of 15 hospice caregivers of patients from hospice agencies in the States of Washington. The majority of the participants were white and female caregivers. They were spouse/partner or adult child living with the patient.

Results:

The study identified 5 out of the 6 major themes in the original framework and confirmed that hospice family caregivers face a variety of challenges: caregiver-centric issues, caregiver’s medication skills and knowledge, communication and teamwork, organizational skill, and patient-centric issues. A couple of the subthemes in the original framework were not present in our findings. We also expanded the original framework by adding 1 subtheme and revised 2 definitions in the original framework.

Conclusion:

The study provided an investigation on hospice family caregivers’ difficulties in pain management. The results can inform health-care providers and researchers of family caregivers’ challenges and provide insights for future designs of educational tools targeting pain management strategies, so that family caregivers can perform pain management effectively at home.
Outpatient Palliative Cardiology Service Embedded Within a Heart Failure Clinic: Experiences With an Emerging Model of Care
Authors: Gandesbery Benjamin , Dobbie Krista , Gorodeski Eiran Z.
Published: November 2017

Background:

The role of palliative care consultation in the outpatient treatment of patients with symptomatic heart failure (HF) is poorly studied. In August 2015, we created an outpatient palliative care service embedded within the HF clinic at Cleveland Clinic main campus.

Aim:

To characterize patients cared for by our novel outpatient palliative cardiology service, including their degree of HF, symptoms, comorbidities, topics addressed in clinic, palliative treatments prescribed, advanced directives status, and mortality.

Design:

We conducted a retrospective chart review of all patients evaluated by this outpatient service.

Results:

Eighty patients were seen in 229 outpatient encounters. The most commonly reported symptoms were tiredness (74%), pain (64%), dyspnea (57%), drowsiness (45%), anxiety (45%), and depression (43%). The most frequently addressed issues were pain management (55%) and advanced care planning (54%). The most common palliative medications prescribed in palliative care clinic were opiates (48%), laxatives (22%), antineuropathics (22%), and antidepressants (16%). The 1-year survival rate was 70% (CI 65-75%).

Conclusions:

Embedding palliative medicine services in an HF outpatient clinic is feasible. Patients seen in this setting had an array of quality-of-life limiting symptoms and were medically managed with several interventions familiar to palliative medicine specialists. Outpatients with chronic HF have a significant symptom burden and may benefit from outpatient specialist palliative care.
Recent Changes in End-of-Life Decisions for Newborns in a Korean Hospital
Authors: Kim Myo-Jing , Lee Jin-Hyeok , Lee Hyoung-doo
Published: November 2017

Introduction:

Despite recent advances in neonatal intensive care in Korea, few studies exist on the end-of-life decisions in newborns. In this study, we sought to examine the status of end-of-life decisions in neonates, changes over time, and affecting factors.

Methods:

This is a retrospective study of neonates who died between 2001 and 2015 in the neonatal intensive care unit of Dong-A University Hospital in Busan. The types of end-of-life decisions were divided into active resuscitation, withholding treatment, and withdrawing treatment. The study period was divided into 3 time frames using 5-year intervals to investigate changes over time. To identify the associated factors, we analyzed the demographic and clinical characteristics of the neonates and their parents using the χ2 test and independent t test.

Results:

Of the neonatal deaths included in the analysis (n = 222), active resuscitation, withholding treatment, and withdrawing treatment groups accounted for 73.4%, 25.2%, and 1.4% of cases, respectively. When comparing changes over time, between period 1 (2001-2005), 2 (2006-2010), and 3 (2011-2015), the proportion of active resuscitation decreased significantly, from 80.9% to 60.8%, while that of nonactive resuscitation increased significantly from 19.1% to 39.2%. The factors associated with end-of-life decisions were the clinical condition of the neonate at the time of death, rather than general characteristics or socioeconomic factors.

Conclusions:

In Korea, changes in the decisions on end-of-life care in neonates are shifting from active resuscitation to nonactive resuscitation based on clinical conditions.
Integrative Review of the Literature on Hispanics and Hospice
Authors: Rising Margaret L. , Hassouneh Dena S. , Lutz Kristin F. , Lee Chris S. , Berry Pat
Published: November 2017

The provision of optimal end-of-life care to Hispanics receiving hospice care requires familiarity with hospice-specific variables. For example, a preference for nondisclosure of terminal prognosis in some Hispanics is incongruous with traditional hospice practice. In addition, the Spanish word for hospice, “hospicio,” has negative connotations about abandonment of loved ones. Added to cultural considerations are socioeconomic considerations. Many marginalized Hispanic individuals may experience distinct challenges when enrolling in hospice due to socioeconomic hardships relating to poverty, citizenship, and lack of insurance. This systematic integrative review examines the research literature on Hispanics and hospice to report on the state of the science for this topic. Reviewed articles were identified systematically using computer research databases and inclusion and exclusion criteria. Of the 21 reviewed articles, many are survey and low-inference qualitative designs with limited validity and trustworthiness. Most survey instruments were not validated for Spanish language or Hispanic culture. None of the qualitative studies included theoretical sampling or follow-up interviews. Few study designs considered heterogeneity within the Hispanic population. Interpreting results cautiously, there is evidence that some Hispanics find some satisfaction with hospice care in spite of cultural incongruities and socioeconomic challenges. Future research calls for intervention studies and high-inference qualitative designs to gain insight into hospice experiences and what constitutes quality hospice care from the perspectives of Hispanic subgroups. Assessing quality and designing interventions for these end-of-life cultural and socioeconomic issues will improve end-of-life care and facilitate the hospice philosophy of promoting emotional growth at end of life.
Characteristics of Patients With Existing Advance Directives: Evaluating Motivations Around Advance Care Planning
Authors: Genewick Joanne E. , Lipski Dorothy M. , Schupack Katherine M. , Buffington Angela L. H.
Published: November 2017

Introduction:

Although 80% of patients endorse an advance directive (AD), less than 35% of American adults have a documented AD. Much research has been done on barriers to creating ADs; however, there is a paucity of research addressing motivations for creating ADs. Previous research has identified 4 categories of influence for engaging in advance care planning (ACP). This study aimed to quantify the influence of these 4 motivating categories in creating an AD.

Methods:

Participants included 238 adults with documented ADs. Participants completed an 11-item questionnaire addressing 1 of the 4 hypothesized categories of influence in addressing ACP: concern for self; concern for others; expectations about the impact of ACP; and anecdotes, stories, and experiences.

Results:

Principle component analysis yielded 2 factors representing dignity and personal control (intrinsic factors) and societal and familial influence (extrinsic factors). Intrinsic factors were the primary and most influential motivating factors among participants. A regression analysis of individual motivating factors showed that prior to age 50, the desire to provide guidance about personal preferences for end-of-life care significantly predicted the creation of an AD, whereas after age 50, the urging of family members significantly predicted the creation of an AD.

Discussion:

Results indicated that intrinsic factors were the most influential motivator among participants of all ages. Extrinsic factors appeared to be less influential in the decision to create an AD. Motivating factors were also found to vary by age. These results may help physicians be more targeted in discussions surrounding ADs, thus saving time, which physicians identify as the main barrier in engaging in such discussions, while meeting patients’ wishes for their physicians to bring up the topic of ADs.
Physicians Perceptions of Shared Decision-Making in Neonatal and Pediatric Critical Care
Authors: Richards Claire A. , Starks Helene , O’Connor M. Rebecca , Bourget Erica , Hays Ross M. , Doorenbos Ardith Z.
Published: November 2017

Background:

Most children die in neonatal and pediatric intensive care units after decisions are made to withhold or withdraw life-sustaining treatments. These decisions can be challenging when there are different views about the child’s best interest and when there is a lack of clarity about how best to also consider the interests of the family.

Objective:

To understand how neonatal and pediatric critical care physicians balance and integrate the interests of the child and family in decisions about life-sustaining treatments.

Methods:

Semistructured interviews were conducted with 22 physicians from neonatal, pediatric, and cardiothoracic intensive care units in a single quaternary care pediatric hospital. Transcribed interviews were analyzed using content and thematic analysis.

Results:

We identified 3 main themes: (1) beliefs about child and family interests; (2) disagreement about the child’s best interest; and (3) decision-making strategies, including limiting options, being directive, staying neutral, and allowing parents to come to their own conclusions. Physicians described challenges to implementing shared decision-making including unequal power and authority, clinical uncertainty, and complexity of balancing child and family interests. They acknowledged determining the level of engagement in shared decision-making with parents (vs routine engagement) based on their perceptions of the best interests of the child and parent.

Conclusions:

Due to power imbalances, families’ values and preferences may not be integrated in decisions or families may be excluded from discussions about goals of care. We suggest that a systematic approach to identify parental preferences and needs for decisional roles and information may reduce variability in parental involvement.