Hospice Experience Research Articles

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.

Transforming Nursing Students' Attitudes Toward End-of-Life Care.

End-of-life care is an important nursing competency and must be incorporated into the baccalaureate nursing curriculum. The purpose of this research was to examine the outcomes of an actual hospice compared with a simulated hospice clinical experience. This pretest and posttest nonequivalent 2-group design consisted of a sample of 65 undergraduate nursing students enrolled in a community health course. All students enrolled in the community health course have 1 day for hospice experience and a 2-hour orientation from the nurse educator at a local hospice agency. Students enrolled in the first 7 weeks were paired with a hospice nurse and conducted home visits. Students enrolled in the second 7-week session participated in 2 simulated hospice clinical experiences on campus. Thirty-two students were in the simulated hospice group and 33 were in the home hospice group. Attitudes toward end-of-life care were measured before and after the intervention with the Frommelt Attitudes Toward Care of the Dying. The findings indicated positive attitude changes toward end-of-life care. After the hospice clinical experience, both groups seemed to show increases in their mean Frommelt Attitudes Toward Care of the Dying scores, possibly indicating a greater comfort with caring for dying patients.

Korean Physicians' Perspectives on Prognostication in Palliative Care: A Qualitative Study.

Prognostication is an essential component of palliative care for patients with advanced cancer but also poses challenges. Little is known about physicians' perspectives on prognostication and prognostic tools used in palliative care practice in Eastern countries. To explore Korean physicians' perspectives and experiences with prognostication in their palliative care practices. Semi-structured interviews were conducted in Korea in 11 palliative care physicians. A constant comparative and grounded theory approach was used to derive themes from interview transcripts. Participants on average had 6.4 (SD = 4.5, range 0.5-15) years of hospice and palliative care experience. We identified 4 main themes about prognostication: (1) the importance of prognostication (to help patients and their families prepare for death, to determine the appropriate time of transition to hospice care, to facilitate appropriate decision making, and to facilitate communication with patients and their families); (2) difficulties of prognostication (discomfort estimating the exact date of death); (3) basis of prognostication (clinical prediction of survival as well as prognostic scores); and (4) areas for further research (need for a simpler scoring system or parameters to predict survival with greater certainty). Palliative care physicians in Korea reported similar perceptions about the role and challenges inherent in prognostication compared to clinicians in Western cultures. However, they emphasize the need to predict final days to keep families with dying patients, reflecting family-centered aspects of Asian culture. They reported frustrations with inaccurate prognostication schemas and called for the development of simpler, more accurate predictors as a focus of future research.

Continuous Inotrope Therapy in Hospice Care: A Case Series.

Continuous cardiac inotropes are increasingly utilized for symptom management in advanced heart failure (AHF). Among patients who are not eligible for cardiac transplant or mechanical circulatory support, many are hospice eligible at the time of inotrope initiation. Nevertheless, given relative infrequent use as well as cost issues, acceptability and management of inotropes in the hospice setting are likely widely variable between hospice agencies. To describe hospice care experiences for patients with AHF receiving continuous inotrope therapies and weaning inotropes at the end of life. Single-institution retrospective chart review of patients with AHF receiving continuous inotropes who were discharged from the hospital to hospice care between February 2015 and October 2016 and survey of hospice medical directors providing direct care of these patients. Eighteen patients with AHF receiving continuous inotropes were discharged to 6 hospice agencies. Twelve patients were weaned from inotropes prior to death. Among cases where the inotrope was weaned, patients lived several days to more than 2 weeks. All hospice medical directors surveyed would accept patients on inotropes again. Most believed that providing continuous inotrope therapy for patients with AHF is compatible with the philosophy of hospice care. Cardiac inotropes can align with both the goals of care for the patient with AHF and the philosophy of hospice care. Patients with AHF admitted to hospice care on continuous inotropes may live days to weeks, whether or not inotropes are discontinued.

Non-pharmacological solutions to sleep and circadian rhythm disruption: voiced bedside experiences of hospice and end-of-life staff caregivers

BackgroundSleep disturbance is a significant issue, particularly for patients with advanced terminal illness. Currently, there are no practice-based recommended approaches for managing sleep and circadian disruptions in this population. To address this gap, a cross-sectional focus group study was performed engaging 32 staff members at four hospices/end-of-life programs in three demographically diverse counties in New York State.MethodsParticipants responded to structured open-ended questions. Responses were transcribed and subjected to qualitative content analysis. The themes and recommendations for improved practice that emerged were tabulated using Atlas TI qualitative software.ResultsThis report details the experiences of hospice and end-of-life care staff in managing sleep and circadian disruptions affecting patients and analyzes their recommendations for improving care. Caregivers involved in the study described potential interventions that would improve sleep and reduce circadian disruptions. They particularly highlighted a need for improved evaluation and monitoring systems, as well as sleep education programs for both formal and informal caregivers.ConclusionsThe voiced experiences of frontline hospice and end-of-life caregivers confirmed that disruption in sleep and circadian rhythms is a common issue for their patients and is not effectively addressed in current research and practice. The caregivers’ recommendations focused on management strategies and underscored the need for well-tested interventions to promote sleep in patients receiving end-of-life care. Additional research is needed to examine the effectiveness of systematic programs that can be easily integrated into the end-of-life care process to attenuate sleep disturbances.

Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses

ContextApproximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. ObjectiveTo determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community. MethodsA cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot tested and distributed to hospice nurses across a tristate region. ResultsA total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting <5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains. ConclusionChildren with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child- and family-centered policies to improve the delivery of palliative and hospice care to children in the community.

Clinical Phenomenology and Characteristics of Centenarians in Hospice.

Little is known about the hospice experience of centenarians. As the population of centenarians is projected to increase, understanding their unique end-of-life needs will be important to inform delivery of quality end-of-life care. Our objective was to characterize the hospice experience of centenarians. A retrospective single-institution cohort study of centenarians enrolled in hospice from January 1, 2015, to December 31, 2017, was conducted to collect demographic and clinical information. Seventeen centenarians, who comprised 1.4% of hospice admissions, had an average age of 102 years, were mostly female (71%) and widowed (76%), and all caucasian. Upon hospice admission, centenarians resided in nursing (8, 47%) and assisted living (4, 24%) residencies as well as at home (4, 24%) and in senior independent living (1, 6%). Sixty percent of centenarians died in a nursing home. The most common hospice admission diagnosis was dementia (35%). Median length of stay on hospice was 41 days (range: 16-85) for 15 persons who died or discharged live. In this group of centenarians, dementia was the most common condition for hospice enrollment. Slightly less than half resided in nursing homes on admission, although death occurred most frequently in a nursing home. Centenarians were generally able to remain out of the hospital at their time of death.

Getting to the Heart of the Matter: A Regional Survey of Current Hospice Practices Caring for Patients With Heart Failure Receiving Advanced Therapies.

No guidelines exist regarding care for patients with advanced heart failure (HF) receiving hospice care while continuing advanced HF therapies such as left ventricular assist devices (LVADs) or continuous inotropes. We surveyed hospice providers in our tristate region to determine hospice demographics, current practices for care of patients with advanced HF, and perceived challenges of providing advanced HF therapies. Cross-sectional survey of hospice clinical and administrative leaders. Forty-six respondents representing 23 hospices completed the survey. Over half (27/46) held leadership administrative roles, and most (37/46) had more than 5 years of hospice experience. Although lack of experience and cost were cited as primary barriers to providing inotrope therapy in home hospice, about half of respondents (24/46) said they would manage inotropes. All participants said their respective hospices accept patients with implantable cardioverter-defibrillators; over half (28/46) said they accept patients with LVADs into hospice care. Lack of experience with LVADs was the most frequently cited barrier. Most participants were interested in training and support by an advanced HF program to facilitate hospice care of patients receiving these advanced therapies. General access to hospice services for patients with HF at their organization was considered adequate by 30 of 46 participants. Most (32/46) reported that referrals are made too late. Hospice specialists reported widely varied practice experiences caring for patients with HF receiving advanced therapies, noted specific challenges for care of these patients, and expressed a desire for targeted HF education.

Hospice and Palliative Care Provider Experiences With Meditation Using Mobile Applications.

Healthcare providers who are involved in the care of patients at the end of life are at risk of developing compassion fatigue, a condition characterized by emotional exhaustion and reduced professional engagement. Research has shown that development of a meditation practice can modify stress perceptions and promote quality of life. This study aimed to evaluate perceived benefits, challenges, and recommendations following participation in a workplace mobile application- and email-based meditation research program. 11 healthcare providers who participated in the feasibility pilot were recruited from Sparrow Health System in Lansing, Michigan. Three focus groups and one in-depth interview were conducted. Data were analyzed using qualitative methodology. Major themes included program advantages and limitations, challenges that affected adherence, and support for caregivers. Findings support further evaluation of a technology-mediated meditation program for professional caregivers to reduce perceived stress associated with the work environment.

Community-Based Palliative Care Leader Perspectives on Staffing, Recruitment, and Training.

To assess perspectives of US community-based palliative care program leaders on staffing, recruitment, and training, a qualitative descriptive study was conducted. Leaders (n = 20) from academic medical centers, large integrated and community health systems, home health and hospice organizations, and the Veterans Administration were recruited. Three major categories emerged that influence community-based palliative care workforce team composition across settings: (1) staffing models and recruitment are influenced by setting and workforce experience, (2) training varies by setting, and (3) demand exceeds supply of trained workforce. Participants described a hybrid approach used in academic and community settings to complete an interdisciplinary team by leveraging social work and chaplaincy from inpatient departments and home health and hospice. Physician-led interdisciplinary teams in academic settings and teams more often led by nurse practitioners in community settings were reported. Community program leaders expressed the desire to recruit nurses with home health and hospice experience because of the ability to work independently. Training was described as more often on-the-job in community settings. Turnover related to the lack of a properly trained workforce was described as one of the biggest barriers to palliative care development.

Should I Unplug the Phones Again: Understanding Government Hospice Audits and “Pre-Tecting” Your Organization Through Robust Provider Documentation (TH303)

•Describe 3 common legal avenues federal and state investigators and Medicare contractors use to target hospice organizations.•Discuss commonly encountered barriers to adequate nursing documentation in hospice care.•Demonstrate 4 evidence-based tools useful for supporting prognosis in patients near the end of life. Since the inception of the Medicare Hospice Benefit, hospice has grown to serve over 1.6 million people per year at an annual cost of over $15.8 billion dollars. This high price tag has led to increased scrutiny by federal and state regulators over the past decade. Documentation by bedside and interdisciplinary team clinicians represents the vast majority of data in these inquiries. Unfortunately, nurses, nurse practitioners, and physicians have been trained to document clinically relevant information without always understanding the impact that this documentation will have during payer audits sometimes years later. How can hospice clinicians further not only their clinical information needs but also protect the organization should an audit occur in the future? In this concurrent session, a healthcare law attorney with 25 years of healthcare and hospice experience will partner with a hospice's nurse manager and 2 HPM physicians who have reviewed hundreds of thousands of pages of hospice records under government audit to share strategies to support effective documentation of eligibility. The False Claims Act and hospice-focused program integrity initiatives will be examined and the role of recovery audit contractors (RAC) and zone program integrity contractors (ZPIC) will be presented. Our nursing leader will address barriers to effective nursing documentation, which constitutes the vast majority of clinical information, including difficulties with technical Local Coverage Determinations, struggles around complex prognostication, and limitations inherent to hospice electronic medical record systems. During the second half of the interdisciplinary presentation, the physician team will present 4 evidence-based tools and articles that cut across disease states that will inform prognostic abilities of physicians completing Certification of Terminal Illness (CTI) documentation and support their prognostic claims. They will use examples from real cases showing well- and poorly written face-to-face and CTI notes, reworking those with opportunities for improvement using the presented tools to reinforce audience learning.

Dancing with Parkinson's: a London hospice's experience of running a dance programme.

Dancing with Parkinson's: a London hospice's experience of running a dance programme.

Integrative Review of the Literature on Hispanics and Hospice.

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.

The care experiences of patients who die in residential hospice: A qualitative analysis of the last three months of life from the views of bereaved caregivers.

Despite the increasing prominence of residential hospices as a place of death and that, in many regards, this specialized care represents a gold standard, little is known about the care experience in this setting. Using qualitative survey data, we examined the positive and negative perceptions of care in hospices and in other prior settings. Qualitative comments were extracted from the CaregiverVoice survey completed by bereaved caregivers of decedents who had died in 16 residential hospices in Ontario, Canada. On this survey, caregivers reported what was good and bad about the services provided during the last three months of life as separate open-text questions. A constant-comparison method was employed to derive themes from the responses. A total of 550 caregivers completed the survey, 94% (517) of whom commented on either something good (84%) and/or bad (49%) about the care experience. In addition to residential hospice, the majority of patients represented also received palliative care in the home (69%) or hospital (59%). Overall, most positive statements were about care in hospice (71%), whereas the negative statements tended to refer to other settings (81%). The hospice experience was found to exemplify care that was compassionate and holistic, in a comforting environment, offered by providers who were personable, dedicated, and informative. These humanistic qualities of care and the extent of support were generally seen to be lacking from the other settings. Our examination of the good and bad aspects of palliative care received is unique in qualitatively exploring palliative care experiences across multiple settings, and specifically that in hospices. Investigation of these perspectives affirmed the elements of care that dying patients and their family caregivers most value and that the hospices were largely effective at addressing. These findings highlight the need for reinforcing these qualities in other end-of-life settings to create comforting and supportive environments.

A Survey of Hospice and Palliative Care Clinicians' Experiences and Attitudes Regarding the Use of Palliative Sedation.

A variety of terms and attitudes surround palliative sedation (PS) with little research devoted to hospice and palliative care (HPC) clinicians' perceptions and experiences with PS. These factors may contribute to the wide variability in the reported prevalence of PS. This study was designed to better identify hospice and palliative care (HPC) clinician attitudes toward, and clinical experiences with palliative sedation (PS). A 32-question survey was distributed to members of the American Academy of Hospice and Palliative Medicine (n = 4678). The questions explored the language clinicians use for PS, and their experiences with PS. Nine hundred thirty-six (20% response rate) responded to the survey. About 83.21% preferred the terminology of PS compared with other terms. A majority felt that PS is a bioethically appropriate treatment for refractory physical and nonphysical symptoms in dying patients. Most felt PS was not an appropriate term in clinical scenarios when sedation occurred as an unintended side effect from standard treatments. Hospice clinicians use PS more consistently and with less distress than nonhospice clinician respondents. Benzodiazepines (63.1%) and barbiturates (18.9%) are most commonly prescribed for PS. PS is the preferred term among HPC clinicians for the proportionate use of pharmacotherapies to intentionally lower awareness for refractory symptoms in dying patients. PS is a bioethically appropriate treatment for refractory symptoms in dying patients. However, there is a lack of clear agreement about what is included in PS and how the practice of PS should be best delivered in different clinical scenarios. Future efforts to investigate PS should focus on describing the clinical scenarios in which PS is utilized and on the level of intended sedation necessary, in an effort to better unify the practice of PS.

P079 The Use of Hospice Experiences to Improve Palliative Care Skills in Undergraduate Medical Students: Results of a Systematic Review of the Evidence-Based Teaching Literature

P079 The Use of Hospice Experiences to Improve Palliative Care Skills in Undergraduate Medical Students: Results of a Systematic Review of the Evidence-Based Teaching Literature

Development, implementation and evaluation of a terminal and hospice care educational online module for preclinical students

ObjectivesTo explore the application of an online learning tool to teach preclinical medical students terminal and hospice care in a blended curricula.MethodsWe created and evaluated a 30 min interactive online...

Preclinical Medical Students' Diverse Educational and Emotional Responses to a Required Hospice Experience.

Physicians' lack of comfort and skill in communicating about hospice care results in deficits and delays in hospice referrals. Preclinical exposure to hospice may lay a foundation to improve medical students' knowledge and comfort with hospice care. To understand how preclinical medical student (MS)-2s respond both educationally and emotionally to a required hospice care experience (HCE). Accompanied by hospice clinicians, MS-2s spent 3 hours seeing inpatient or home hospice patients followed by a 1-hour debriefing. Students submitted written reflections to e-mailed educational and emotional prompts. Two hundred and two MS-2s from 2 academic cohorts completed the HCE at 1 of 2 hospice sites. Written reflective responses were analyzed qualitatively, where salient themes extracted and responses were coded. Ninety-two students submitted 175 responses to Prompt #1 (educational impact) and 85 students entered 85 responses to prompt #2 (emotional impact) of the HCE. Eleven themes were identified for prompt #1, most frequently focusing on hospice services and goals and hospice providers' attitudes and skills. Prompt #2 elicited a diverse spectrum of emotional responses, spanning positive and negative emotions. Most often, students reported "no specified emotional reaction," "sad/depressed," "difficult /challenging," "heartened/encouraged," and "mixed emotions." In an HCE, preclinical students reported learning core aspects of hospice care and experiencing a broad spectrum of emotional responses. These findings may assist educators in the planning of HCEs for preclinical students, including debriefing sessions with skilled clinicians and opportunities for triggered reflection.

Hospice and palliative social workers' experiences with clients at risk of suicide.

We sought to determine the frequency with which hospice and palliative social workers encounter patients, family caregivers, and other clients at risk of suicide, and to discover the extent to which hospice and palliative social workers feel prepared to address issues related to suicide in their professional practice. We conducted a cross-sectional survey of hospice and palliative social workers, recruiting a convenience sample of volunteer respondents through advertisements at professional conferences and listservs, and via social media accounts associated with national organizations, state hospice and palliative care associations, and individual healthcare professionals. Most respondents reported having worked with patients, family caregivers, or other clients who had exhibited warning signs of suicide during the previous year. Fewer respondents indicated that they had worked with patients and family members who had attempted or died by suicide. While the majority of respondents believed they possessed sufficient knowledge and skills to intervene effectively with individuals at risk of suicide, they indicated that additional education on this topic would be valuable for their professional practice. These study results suggest that suicide-related competencies are important in the practice of hospice and palliative social work. Future education and training efforts should include skill development in addition to knowledge building.

Supporting older people with cancer and life-limiting conditions dying at home: a qualitative study of patient and family caregiver experiences of Hospice at Home care.

To explore patients' and family caregivers' experiences and perceptions of Hospice at Home care. The public indicate a preference to be cared for and to die at home. This has inherent challenges, with a key factor being the family caregiver. Supporting end-of-life care at home has resulted in the expansion of Hospice at Home services. A wide configuration of services exists with a lack of robust evidence as to what is valued by recipients, particularly those who are older people. A prospective descriptive qualitative study. Recruitment was purposive. Eligible participants were in receipt of Hospice at Home service on at least three occasions and were deemed to have a life expectancy measured in weeks rather than days. Digitally recorded semistructured interviews with 41 participants (16 patients and 25 family caregivers) were undertaken between October 2014 - July 2015. Data were analysed and organized thematically. Several subthemes: 'Talking about'; 'Knowing and Doing'; 'Caring for the Caregivers'; and 'Promoting Choice' contributed to the overall theme of Embracing Holism. A positive impact on emotional, psychological, social and physical well-being was apparent. This study has provided additional insights as to the value of Hospice at Home care where Hospice Nurses are helping to bring Hospice care into the home. This is helping to support older people who are dying and their caregivers, to live as well as possible and facilitate their wish to be cared for and die in their own home.