Hospice Programs Research Articles

Museum-Based Education: A Novel Educational Approach for Hospice and Palliative Medicine Training Programs.

Objective: To describe museum-based education (MBE) as an emerging pedagogy in our four hospice and palliative medicine (HPM) training programs. Background: MBE is a pedagogy that uses art and the museum space to promote a variety of skills, including reflective practice, self-awareness, and interprofessional teamwork. While MBE has been extensively applied and studied in undergraduate medical education, it is not a common educational strategy in HPM education. Methods: We summarize the characteristics of MBE initiatives in our institutions, including makeup of fellowship class, MBE site, facilitators, exercises, number of sessions, number of years using MBE, and expenses and funding to support MBE in our training programs. Results: To date, we have used MBE to train 104 HPM fellows. Evaluations from MBE have been overwhelmingly positive. Conclusion: MBE holds great promise as a pedagogic strategy to improve metacognition, tolerance of uncertainty, appreciation of multiple perspectives, and teamwork among hospice and palliative care professionals. Further research is needed to identify best practices for MBE across HPM training programs.

Development of Subspecialty-Specific Reporting Milestones for Hospice and Palliative Medicine Fellowship Training in the U.S.

Continuing the transition to competency-based education, Hospice and Palliative Medicine (HPM) fellowship programs began using context-free reporting milestones (RMs) for internal medicine subspecialties in 2014 but quickly recognized that they did not reflect the nuanced practice of the field. This article describes the development of 20 subspecialty-specific RMs through consensus group process and vetting by HPM educators. A workgroup of content experts used an iterative consensus building process between December 2017 and February 2019 to draft new RMs and create a supplemental guide that outlines the intent of each RM, examples of each developmental trajectory, assessment methods, and resources to guide educators. Program directors, program coordinators, and designated institutional officers were contacted directly to solicit feedback. Most respondents agreed or strongly agreed that each RM represented a realistic progression of knowledge, skills, and behaviors, and that the set of milestones adequately discriminated between meaningful levels of competency. Similarly, respondents felt that the supplemental guide was a useful resource. The result is a set of carefully developed and broadly vetted RMs that represent a progression of development for HPM physicians during one year of clinical fellowship training.

Bringing Home into the Academic Medical Center: Inpatient Hospice with a Community Partner (QI612)

•Describe multiple models to deliver inpatient hospice.•Evaluate a general inpatient care (GIP) hospice program using a set of metrics. Often, patients with devastating and serious illnesses are referred to academic medical centers for expert-level care. After evaluation, many patients and families elect comfort care, and patients spend the final days of their lives within an academic center's hospital walls. There were not options for inpatient hospice care in our area, and a review of our process showed inconsistent end-of-life care processes and bereavement support. Literature shows that including palliative care treatment plans at the end of life can reduce patient suffering. Families report connecting with support providers during a period of bereavement to be helpful. To address the variability in care and family support, we developed an inpatient hospice service to streamline and standardize end-of-life care at our hospital. Develop an inpatient hospice program to streamline end-of-life care for dying patients. Develop an inpatient hospice program with a community partner to provide comprehensive bereavement to families after the death of a loved one. Evaluate patient and family satisfaction with end-of-life care via interview and a 30-day postdischarge survey. We partnered with a community hospice company to provide nursing, social work, and chaplain support to dying patients. We developed an evidence-based comfort measures order set for all dying patients in our hospital and provided end-of-life symptom management education to the care team. We then designed a process for a smooth transition to inpatient hospice and monitored demographics for all patients. Patient families, when present, were interviewed with predetermined questions to evaluate their experience. Surveys were sent at 30 days. Forty-four patients have been admitted. Of these, 60% are men and 40% are women. Over 90% of these patient families report that they received a high level of care at the end of life. Implementation of an inpatient hospice program in an academic center with a community partner is successful with high patient and family satisfaction.

"Yes to Life" and the Expansion of Perinatal Hospice.

Since the model of perinatal hospice was first proposed more than two decades ago, its growth has been exponential. Perinatal hospice, now also called perinatal palliative care, is a practical and compassionate model of care for those continuing a pregnancy following a prenatal diagnosis indicating that their baby has a life-limiting condition and might die before or shortly after birth. Well over 300 international perinatal hospice and palliative care programs have been created; many articles have been published in major medical journals; several textbooks and guides have now been published; protocols and training have been developed; and growing numbers of parents are choosing to continue their pregnancies when perinatal hospice care is offered. And now the idea has even reached Pope Francis.

Health Care Worker Perceptions of Gaps and Opportunities to Improve Hospital-to-Hospice Transitions

Background: Care transitions from the hospital to hospice are a difficult time, and gaps during this transitions could cause poor care experiences and outcomes. However, little is known about what gaps exist in the hospital-to-hospice transition. Objectives: To understand the process of hospital-to-hospice transition and identify common gaps in the transition that result in unsafe or poor patient and family caregiver experiences. Design: We conducted a qualitative descriptive study using semistructured interviews with health care workers who are directly involved in hospital-to-hospice transitions. Participants were asked to describe the common practice of discharging patients to hospice or admitting patients from a hospital, and share their observations about hospital-to-hospice transition gaps. Setting/Subjects: Fifteen health care workers from three hospitals and three hospice programs in Portland, Oregon. Measurements: All interviews were audio recorded and analyzed using qualitative descriptive methods to describe current practices and identify gaps in hospital-to-hospice transitions. Results: Three areas of gaps in hospital-to-hospice transitions were identified: (1) low literacy about hospice care; (2) changes in medications; and (3) hand-off information related to daily care. Specific concerns included hospital providers giving inaccurate descriptions of hospice; discharge orders not including comfort medications for the transition and inadequate prescriptions to manage medications at home; and lack of information about daily care hindering smooth transition and continuity of care. Conclusion: Our findings identify gaps and suggest opportunities to improve hospital-to-hospice transitions that will serve as the basis for future interventions to design safe and high-quality hospital-to-hospice care transitions.

Characteristics of Hospice and Palliative Care Programs in US Prisons: An Update and 5-Year Reflection

Individuals with terminal illness are dying behind bars and many state prison administrators have incorporated on-site hospice and palliative care services. Little is known, however, about these programs since a 2010 study of prison hospice characteristics. We provide an updated description and reflection of current hospice and palliative care programs in state prisons serving incarcerated persons with terminal illness. A cross-sectional survey was sent to representatives of all known prisons offering hospice and palliative care programs and services (N = 113). Questions were drawn from an earlier iteration regarding interdisciplinary team (IDT) membership, training length and topics, peer caregivers, visitation policies, bereavement services, perceived stakeholder support, and pain management strategies. Additional questions were added such as estimated operational costs, peer caregiver input in patient care, and the strengths and weaknesses of such programs. Frequency distributions were calculated for all study variables. Responding representatives (n = 33) indicated IDTs remain integral to care, peer caregivers continue to support dying patients, and perceived public support for these programs remains low. Reduced enthusiasm for the programs may negatively influence administrative decision-making and program resources. Further, peer caregiver roles appear to be changing with caregivers charged with fewer of the identified tasks, compared with the 2010 study.

Bathroom.

This article details the hospitalization experience of a homeless man diagnosed with cancer. Recounted are the man's desire to enter a hospice program and his need for a safe space. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

THE DEVELOPMENT AND IMPLEMENTATION OF A CARDIAC HOME HOSPICE PROGRAM FOR ADVANCED STAGE HEART FAILURE PATIENTS

Heart failure (HF) patients encounter distressing symptoms at the end-of-life including dyspnea, edema, and fatigue. Left untreated, these symptoms increase risk for hospice disenrollment. This presentation used the RE-AIM framework to examine a cardiac home hospice program for HF patients. Qualitative interviews with hospice providers (N=32) and quantitative medical record data were used to examine the program. Reach—1,183 HF participants were served between 2013-2016. Effectiveness—Enrollment of HF patients in the hospice program increased from 7.9% to 9.5% after the cardiac protocol was implemented. Adoption—implementation was spearheaded by a clinical champion aware of the challenges of HF symptom management. Implementation— additional support services (i.e., paramedicine, infusion services, cardiac comfort medication kits) were incorporated in the cardiac protocol to better manage complex clinical cases in the home. Maintenance— Reinforcing factors include ongoing training for nursing staff and a 3.5-hour introduction module providing information about HF case management and symptoms/treatments.

DEATH NARRATIVE IN 19TH-CENTURY CHINA: HOW DID NEWSPAPERS FRAME DEATH AND DYING?

This study explored the death narrative in the late Qin dynasty as expressed in Chinese newspapers in the 19th century. Using textual analysis to analyze the 646 pieces of news containing death-related topics, this study revealed the discourse regarding death and dying during this period can be understood at three levels: (a) euphemism of death: the language of death and its relationship with power and social hierarchy; (b)definition of “good death”: including preferences for location, cause, and experiences of death and dying; and (c) Western influence on the death narrative: missionaries’ efforts to incorporate Catholic and Chinese traditions to attract more believers. This paper argues that the current Chinese people’s perception of death is inherited and evolved from those historical roots, which has practical implications for the systematic development of hospice care in China. Suggestions include changing the language used in the hospice policy, emphasizing the importance of confidentiality in home-based hospice programs, and building a hospice system based on public perceptions of so-called “good death” while advocating for individualized definitions of this concept.

Current landscape of combined oncology/palliative care training in the United States.

68 Background: Recent calls by ASCO and others recommend early integration of oncology and palliative care. The rapid growth of new cancer therapies (e.g. immunotherapy) and their associated side effects and prognostic uncertainty suggest the need for oncologists to have palliative care sub-specialization. Despite the logical integration of oncology and palliative care training, the current landscape of ACGME training programs for these fields is unknown. Methods: We explored the ERAS Fellowship Website (https://www.aamc.org/services/eras/) on June 15, 2019, and collected information on Medical oncology, Medical Oncology/Hematology, and Hospice and Palliative Medicine (HPM) Programs. We identified institutions/ health systems that offered both Medical Oncology and HPM programs. We also identified institutions/ health systems that offered other Fellowships combined with Medical Oncology. We validated information by verifying each training program's website. Results: 152 unique programs offered Medical Oncology fellowship (144 combined with hematology) and 131 unique programs offered HPM fellowship. 7 Medical Oncology programs had tracks that allowed combination with geriatrics or infectious disease. 73 unique institutions/ health systems offered both Medical Oncology and HPM training separately, but no programs offered a combined Medical Oncology/ HPM track. Conclusions: Despite the call to better integrate palliative care in oncology care, we did not find any published descriptions of tracks combining Medical Oncology and HPM training. Successful examples of integrating Medical Oncology with other disciplines such as geriatrics exist. Trainees may still forge their own pathway and do sequential fellowships in Medical Oncology and HPM, but investment by key stakeholders is essential to pilot novel educational programs to address workforce issues in this field. It remains unknown how many programs accommodate combined or sequential training for interested applicants, or how they are funded.

Enhancing Connections-Palliative Care: A Quasi-Experimental Pilot Feasibility Study of a Cancer Parenting Program.

Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap. Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes. Design: Quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression). Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program. Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment. Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.

Elizabeth Madigan, PhD, RN, FAAN

Elizabeth Madigan began her nursing career with her bachelor of science in nursing (BSN) from Wright State University and has been on a journey of progressive roles, organizations, and forward-thinking endeavors since that time. She received her MS from The Ohio State University, and began her career in formal leadership positions, including a position as Director of Home Care in Columbus, Ohio, and as assistant chief nursing officer in a hospital at the age of 30.

PC-FACS

PC-FACS

Family Caregiver Perspectives on End-of-Life Dreams and Visions during Bereavement: A Mixed Methods Approach.

Background: End-of-life dreams and visions (ELDVs) are prevalent experiences that provide comfort and meaning to dying individuals. Limited research has examined the impact of ELDVs on the bereaved. Objective: This study aimed to explore differences in self-reported grief for people whose loved ones shared ELDVs and those who did not, and to describe the role of ELDVs in the grieving process. Design: Mixed-methods cross-sectional survey. Settings/Subjects: A total of 228 bereaved family caregivers (FCGs) of patients who died while under the care of a comprehensive hospice program were recruited. Measurements: Demographics and ELDV prevalence were collected. Bereavement was assessed using the Core Bereavement Items (CBI) a validated measure. Impact on grief was also evaluated using an ad hoc tool. Results: Comfort from dreams significantly related to total CBI score (r = 0.224, p = 0.047) as well as the images and thoughts (r = 0.258, p = 0.025) and acute separation subscales (r = 0.224, p = 0.047). Comfort from dreams had a positive relationship with accepting the reality of loss (r = -0.511, p < 0.001), working through the pain of grief (r = -0.556, p < 0.001), adjusting to the new environment (r = -0.405, p = 0.001), and continuing bonds (r = -0.538, p < 0.001). CBI scores were not significantly different between caregivers who reported loved ones with ELDVs and others. Open-ended responses were thematically analyzed resulting in three emergent themes: comfort, reflection and emotions, and sense-making. Conclusions: ELDVs' impact extends beyond those experiencing them to bereaved loved ones. Bereaved FCGs report that comforting ELDVs experienced by their dying loved ones influenced their grief process in terms of the Worden's tasks of mourning.

Use of Auditing and Feedback in an Outpatient Hospice Setting: Quality and Pharmacoeconomic Oversight

BackgroundClinicians play an important role in containing pharmaceutical spending at the patient level, as well as ensuring efficacy and quality outcomes, yet little research has examined how to achieve this goal. MeasuresUsing auditing and feedback (A&F) as part of a Pharmacy and Therapeutics (P&T) Committee, we evaluated our community-based hospice program's prescribing habits for opioids, antipsychotics, and antidepressants and calculated oral pharmaceutical prescription costs per-patient-day. Quality of care was reflected by patient pain scores in electronic medical records. InterventionOur P&T Committee adopted an A&F approach to monitor and assess provider prescribing habits and cost. An already-existing pain quality improvement program assessed care quality. OutcomesPain relief either improved or was maintained while medication costs were reduced by over $1.00 per-patient-day from 2010 to 2011. Conclusions/Lessons LearnedAn active, hospice P&T Committee featuring A&F can significantly affect medication costs for a hospice program while maintaining or improving patient outcomes.

Developing an Appetite

Developing an Appetite

A systematic integrative review of programmes addressing the social care needs of older prisoners

BackgroundThe number of older prisoners has risen exponentially over the last two decades, especially in high-income countries. Due to the increased and somewhat inadequately met health and social care needs of this group of prisoners, coupled with their vulnerability arising from higher levels of isolation, poverty and exploitation, financial costs have spiralled and human rights concerns have grown. This review aimed to present an overview of programmes that addressed older prisoners’ social care needs, a particularly underdeveloped area, with a view to assessing the extent to which they could inform policy and practice.MethodsFollowing Whittemore and Knafl’s (J Adv Nurs 52:546-553, 2005) integrative review approach, a comprehensive search - including 16 electronic databases and hand searching - was undertaken up to May 2017 using search terms related to context, function and disability. The quality of included papers was assessed, data were extracted using a review-specific form based on the PICO formula, and research questions addressed using a narrative synthesis approach. Additionally, reporting followed PRISMA guidelines.ResultsA total of 29 papers were selected for inclusion, the majority of which focused on hospice programmes, with the remainder describing personal care-focused services, structured day programmes, and adaptations to prison operations (regime) and accommodation in support of prisoners’ social care needs. Whilst the programmes were reported to have some positive impacts on prisoners and the prison overall, and programmes were perceived to be cost-effective or cost-neutral, outcomes regarding staff were more mixed. Findings were tempered by the methodological shortcomings of the included papers, with many assessed as low quality, with a lack of prisoner participation, and an absence of experimental studies.ConclusionsThe evidence base for programmes addressing older prisoners’ social care needs appears to be at an embryonic stage. Further robust studies evaluating the effectiveness and cost-effectiveness of programmes addressing older prisoners’ social care needs are imperative in better informing policy and practice in support of this highly vulnerable group.

Secondary Emotional Labor: Supervisors Withholding Support and Guidance in Interdisciplinary Group Meetings in a Community Hospice Program

Emotional labor (EL) can be rewarding, but it can also lead to burnout. Research suggests that supervisor support may be essential to positive experiences with EL. Using qualitative data from a com...

A Survey of Hospice Professionals Regarding Medical Cannabis Practices.

Introduction: With medical cannabis (MC) remaining illegal at the federal level, hospice programs are unsure how to handle requests for MC, particularly since hospice is largely funded with federal dollars. The purpose of this survey was to determine respondents' comfort level with MC use in hospice, what processes and logistics hospice programs are employing when dealing with MC, and to determine what, if any, education hospice programs are providing to their staff. Methods: An anonymous online survey assessed a variety of factors surrounding hospice staff practice, experience, and opinions regarding MC. The survey was disseminated to employees of clients of a large hospice benefit manager as well as through a national hospice and palliative medicine professional organization. Results: Three hundred ten hospice professionals responded to the survey. More than half of the respondents were nurses followed by administrators and physicians. Regardless of legal status, hospice staff members were overwhelmingly in agreement that MC is appropriate for hospice patients to have access to and use. Several barriers to use were identified including discordant legal status between state and federal governments, concerns about clinical efficacy and safety, and a myriad of other societal factors. Wide variations in MC documentation and education practices between hospices were noted. Discussion: The data suggest overwhelming support for MC use in the hospice setting. Our findings highlight important opportunities to support hospice providers and their patients through education and the development of policies around MC.

Home hospice for older people with advanced dementia: a pilot project

BackgroundDementia is a terminal illness making the palliative and hospice approach to care appropriate for older people with advanced dementia.ObjectiveTo examine clinical and health services outcomes of a quality improvement pilot project to provide home hospice care for older people with advanced dementia.Study designTwenty older people with advanced dementia being treated in the Maccabi Healthcare Services homecare program, received home hospice care as an extension of their usual care for 6–7 months (or until they died) from a multidisciplinary team who were available 24/7. Family members were interviewed using validated questionnaires about symptom management, satisfaction with care, and caregiver burden. Hospitalizations prevented and medications discontinued, were determined by medical record review and team consensus.FindingsThe findings are based on 112 months of care with an average of 5.6 (SD 1.6) months per participant. The participants were on average 83.5 (SD 8.6) years old, 70% women, in homecare for 2.8 (SD 2.0) years, had dementia for 5.6 (SD 3.6) years with multiple comorbidities, and had been hospitalized for an average of 14.0 (SD 18.1) days in the year prior to the project. Four patients were fed via artificial nutrition. During the pilot project, 4 patients died, 2 patients withdrew, 1 patient was transferred to a nursing home and 13 returned to their usual homecare program. The home hospice program lead to significant (p < 0.001)improvement in: symptom management (score of 33.8 on admission on the Volicer symptom management scale increased to 38.3 on discharge), in satisfaction with care (27.5 to 35.3,), and a significant decline in caregiver burden (12.1 to 1.4 on the Zarit Burden index). There were five hospitalizations, and 33 hospitalizations prevented, and an average of 2.1(SD 1.4) medications discontinued per participant. Family members reported that the professionalism and 24/7 availability of the staff provided the added value of the program.ConclusionsThis pilot quality improvement project suggests that home hospice care for older people with advanced dementia can improve symptom management and caregiver satisfaction, while decreasing caregiver burden, preventing hospitalizations and discontinuing unnecessary medications. Identifying older people with advanced dementia with a 6 month prognosis remains a major challenge.