Making Explicit the Contention in Hospice Care

Hospice care encompasses physical treatment and emotional, social and spiritual support which recognises what is important to each patient and supports decision-making where patients cannot make decisions for themselves. The Mental Capacity Act 2005 (MCA) regulates decision-making for people without capacity. Post-legislative scrutiny of the Act (in 2014) concluded that it is neither well understood nor working well in practice. The research aim is to describe how the Act’s principles are understood and interpreted in hospice practice, specifically considering the patient’s role in the decision-making process. A relational constructionist approach is adopted, situating hospice care within an ethic-of-care understanding of decision-making, adopting a socio-legal perspective and understanding compassion as a concept relevant to the legal process. An innovative genealogical analysis of policy and legislative documents (n=24) influencing the ‘coming to be’ of the Act and a systematic review of Court of Protection judgments (n=63) ‘historicises’ the empirical research. Two group interviews and six individual interviews (13 participants from 2 hospices) provide empirical data. Legal consciousness theory influences analysis of the interview data. In the findings, the hospice is characterised as expert, the guardian of a proper process, ‘holding’ both patient and family members and recognising the patient’s wishes and feelings as fundamental to a good decision. The availability of time to understand a patient’s narrative and the collegiate, supportive nature of the multi-disciplinary team are important factors in hospice decision-making. In conclusion, hospice staff benefit from having time to understand a patient’s narrative and to make decisions within a reciprocal hospice-patient relationship, informed by an ethic-of-care approach. The understanding of hospice as a ‘movement’ (being distinctly and self-consciously different from other settings) influences the legal consciousness of hospice staff such that compliant decision-making is considered to be part of good quality care rather than simply reflecting a legally acceptable approach.

Dignity, Death, and Dilemmas: A Study of Washington Hospices and Physician-Assisted Death

This paper reports results from a national survey in 1999 of voluntary hospice services in the UK. It focuses on volunteer and staff views of the purposes of hospice care, and on current debates within palliative care. Twenty-five hospice services, stratified by region, services provided (inpatient care, day care and/or home care) and number of beds were randomly sampled from amongst 175 voluntary hospices in the UK. Nineteen participated. Seventy per cent of a random sample of professional and voluntary staff within these hospices returned a postal questionnaire. Both volunteers and professionals considered care of the whole person, pain and symptom control, quality of life and dying peacefully to be important aspects of hospice care. Most doctors chose care of the whole person as the most important aspect, and they were more likely to choose this option than other staff. Hospice volunteers were less positive than hospice staff (particularly doctors and nurses) in their attitudes to extending hospice care to noncancer patients (where many volunteers held no strong view), to restricting care to patients with specialist palliative care needs, and less negative about euthanasia. These findings illustrate the importance of including hospice volunteers and the general public, as well as hospice staff, in debates about the future of hospice and palliative care in the UK. Further research is needed into lay and professional views of the role of hospices and palliative care services.

PC-FACS

Hospice staff members have concerns about the appropriateness of enrolling terminally ill people in research studies. These concerns can have profound implications for the advancement of palliative and hospice care as they can impede the empirical investigation of interventions for improving the quality of life of patients with advanced disease. This survey study was designed to examine hospice staff attitudes, beliefs, and values about research with their patients and family members. This study utilized a cross-sectional, anonymous survey design to measure hospice staff members' beliefs, attitudes, and values. The survey contained questions derived by hospice and palliative care experts from their experience and review of the literature. It was handed out at staff meetings and returned via mail. The survey contained 14 questions and was able to be completed in less than 5 min. A total of 225 participants (56.25% response rate) completed the survey and were included in the data analysis. Hospice staff members were largely supportive about the idea of conducting research with patients and family members (mean agreement of 4.08-4.44 on several perception items about research on a 1-5 scale). They also acknowledged a mixture of being protective of controlling access to patients (52% wanted to be the ones to approach patients) and not having enough time for research (59% either had no time or would be willing to spend no more than 10 min on research). Although many of the opinions derived from the survey appear to indicate a willingness to embrace research in a hospice setting, significant barriers, especially time constraints and protective attitudes, remain. Educational efforts and firsthand involvement in the research process might be a useful first step in attempting to address these barriers and traditionally held beliefs against using hospice patients and families in research.

Communities use rituals at end of life to foster a peaceful death, ensure passage to the afterlife, and grieve their lost loved ones. Studies report fear of misunderstanding or impeding rituals as a barrier to accepting hospice care. However, there has been little research on cultural and spiritual rituals in the setting of hospice care or how patient preference should be assessed, documented, and supported by hospice staff. This project sought to identify the current practice for assessment of cultural or spiritual end-of-life practice preferences, and the documentation of those preferences, within pediatric hospice programs in a Midwestern state. In surveys of 2 pediatric hospice programs, employee respondents reported routine assessment (97.3%) and routine documentation (70.3%) of cultural or spiritual end-of-life practice preferences. Most respondents reported documentation was written by various disciplines and in various locations in the medical record. Additionally, a retrospective chart review was performed including decedents of 1 pediatric hospice program over a 5-year period. Documentation affirming familial spiritual beliefs was identified in 75.9% of charts, of which, only 12.2% had documentation regarding end-of-life-specific spiritual needs. Standardized documentation practices may help foster equitable hospice care for all patients by ensuring care providers are aware of the patient and/or family's end-of-life spiritual needs.

IntroductionTo enhance support for individuals at end of life to die at home, a new community-driven home-based hospice program was developed–Home Hospice. This wholistic hospice care program, co-designed by hospice care staff, community end-of-life care providers, researchers, and health systems decision-makers, will provide around the clock care to clients and their families.Methods and analysisThis mixed methods study, guided by a process evaluation framework, will use secondary client and caregiver data collected as part of regular Home Hospice program processes, as well as primary interview data collected from caregivers at least three months post-death of the client and from hospice staff and volunteers involved in the Home Hospice program. Analysis will include descriptive statistical analysis of quantitative data and thematic analysis employing an inductive and a deductive qualitative analysis approach.EthicsEthics approval has been received from the University of Northern British Columbia (File No: 6009117). All individuals and caregivers who enroll in the Home Hospice program will be invited to participate in this study. At three months post-death of the client, hospice staff will contact caregivers to ask if they would like to participate in a one-on-one interview with a research team member. Staff and volunteers will also be eligible to participate in one-on-one interviews with research team members. De-identified participant data will be provided by hospice staff to the research team. All participants will provide informed consent prior to participation in the study.DisseminationThis study will use an integrated Knowledge Translation/Knowledge Mobilization (iKTKM) lens wherein the research team will work closely and meaningfully with knowledge users and community partners at all stages. Evidence-based and targeted iKTKM products will be created, including community event presentations and social media posts to share findings with participant and community audiences. Further, findings will be disseminated at conferences, workshops, and policy rounds with academic and decision-making audiences. Preliminary and full project findings will be published in high-quality open access journals.Strengths and limitations of this studyCo-design of Home Hospice program and evaluation metrics involves researchers, hospice staff, health systems decision-makers, and community members.Evaluation metrics involve prospective collection of service utilization from client, family, hospice, and health systems perspectives.Integrated knowledge translation approach which frames the knowledge dissemination plan for the study findings focuses on a range of audiences, including local citizens, hospice and community end-of-life care providers, health systems decision-makers, and academic professionals.As a one-year pilot study, the number of clients who may be able to participate in this program will be approximately 50 persons.

The translation of evidence-based interventions into routine hospice care is impeded by numerous barriers, including a disconnect between research priorities and clinical care. To inform the development of a more practice-informed agenda for hospice intervention research, our team conducted a qualitative descriptive study, posing the following research questions: 1) How do hospice staff members describe their most significant work-related challenges? and 2) What regulatory changes do hospice staff members report would most improve hospice care? To answer these research questions, we interviewed 22 hospice staff members and then conducted a template analysis of the interview content. In doing so, we identified themes that described challenges in 5 key areas: time, documentation, professional roles, recruitment and retention, and burn-out. In addition, we identified a perceived need among hospice staff members for more regulatory flexibility and clarity. Based on our findings, we conclude that a practice-informed agenda for hospice intervention research includes the development and testing of interventions that increase efficiency, explicitly speak to the humanity of hospice care, and elevate the roles of all members of the interdisciplinary team.

Major depression and delirium are prevalent, underrecognized, and undertreated in hospice and palliative care settings. Furthermore, they are both associated with significant morbidity and mortality. A screening study of patients receiving inpatient hospice care was conducted in order to determine the ease of screening for depression and delirium in patients with advanced, life-threatening illnesses by hospice social workers and nurses, respectively. A two-question depression screening tool was administered to 20 consecutive patients on admission to a hospice general inpatient care center by social work staff during their initial assessment. A delirium-screening tool was administered daily to 22 consecutive patients admitted to the ICC daily by nursing staff. Screening results were collected, as were patient and staff feelings about the burden of the screening process. Of the 20 patients screened on admission for depression by social work, 70% (14/20) screened positive. Of the 22 patients screened daily for delirium by nursing, 64% (14/22) screened positive at least once during their admission. Screening for both conditions was considered relatively easy to accomplish by the hospice staff. There were no significant associations between a positive screen of depression or delirium and patient gender, age, ethnicity, terminal diagnosis, or marital status. These results support the notion that depression and delirium are very common in hospice inpatients, and that screening for both is relatively easy and practical for hospice clinicians to conduct.

Chronic diseases are becoming a serious threat to the physical and mental health of older people in China as their aging process picks up speed. Home hospice care addresses diverse needs and enhances the quality of life for older adult individuals nearing the end of life. To ensure the well-being of chronically ill older adults at the end of life, it is vital to explore and assess the multidimensional hospice needs of terminally ill older individuals in their homes. The aim of this study was to investigate the current situation of home hospice care needs of Chinese older adults with chronic diseases at the end of life, and to analyze the influencing factors (sociodemographic and disease-related factors). In this cross-sectional study, 247 older adult people with chronic diseases at the end of life were selected from the communities of 4 community health service centers in Jinzhou City, Liaoning Province from June to October 2023 by random sampling method. A general information questionnaire and the home hospice care needs questionnaire developed by our research group were used to investigate. Independent samples t-test or one-way ANOVA was used to compare the differences in the scores of different characteristics, and the factors with significant differences were selected for multivariate linear regression analysis to determine the final influencing factors. The total score of home hospice needs of the dying older adult was 115.70 ± 12, with the mean scores for each dimension in descending order being Information Needs (3.96 ± 0.61), Social Support Needs (3.96 ± 0.44), Spiritual Needs (3.92 ± 0.43), Physical Needs (3.60 ± 0.59), Psychological Needs (3.37 ± 0.65). Status of residence, duration of illness (year), the type of disease, and self-care ability were influential factors in the total score of home hospice needs. The need for hospice care for the terminally ill older adult is high, and healthcare professionals should implement services according to the influencing factors of need to meet their multidimensional needs and improve their quality of life.

Knowledge, Attitudes, and Practices Surrounding Safe Medication Disposal in a Hospice Setting.

B10-A Primary Caregivers’ Experiences of Caring for Patients Under Hospice Care at Home

A case of a patient with gastrointestinal hemorrhage raises the question of limiting medical treatment. We analyze four reasons to limit treatment: Treatment is futile, the patient refuses treatment, the costs of treatment seem excessive, and the quality of life is judged unacceptable. For cases in which treatment is to be limited, we offer practical suggestions for compassionate and appropriate terminal care.

This study examines the degree to which hospice and palliative care staff observe or perceive inadequate, disrespectful, or abusive care to LGBT patients and family members. A cross-sectional study using an online survey completed by 865 providers, including social workers, physicians, nurses, and chaplains. Among respondents, 55% reported that LGB patients were more likely to experience discrimination at their institution than non-LGB patients; 24% observed discriminatory care; 65% reported that transgender patients were more likely than non-transgender patients to experience discrimination; 20% observed discrimination to transgender patients; 14% observed the spouse/partner of LGBT patients having their treatment decisions disregarded or minimized; and 13% observed the spouse/partner being treated disrespectfully. Findings reported also include: institutional non-discrimination policy, staff training, intake procedures, and comfort in assessing LGBT status. Implications for future research, policy, and practice will be presented.

<h3>Background</h3> Despite the introduction of an ‘opt-out’ system in 2020, 8,132 patients in the UK are awaiting organ transplants.^{1 2} NICE advises organ donation should be a routine consideration in end-of-life care planning, however at Moya Cole Hospice discussions were observed to be infrequent.³ This cross-site project evaluated the effect of three educational interventions on the frequency of organ donation discussions. <h3>Methods</h3> A target compliance of discussions with 70% of patients was set, allowing clinician discretion to avoid distress.⁴ Case notes for admissions to both Moya Cole Hospice sites, Heald Green (HG) and Little Hulton (LH), were reviewed at baseline and after each intervention. Interventions included a teaching session for medical staff, an educational poster and introduction of organ donation advocates. <h3>Results</h3> At baseline, organ donation discussions were held with 4.08% of patients at HG and 11.4% at the LH site. Following the first intervention, compliance at both sites improved, to 12.9% at HG and 24% at LH. Following the second intervention, compliance increased to 15.1% at HG but decreased to 2.22% at LH. Following the third intervention, compliance increased to 25.9% at HG and 12.5% at LH. <h3>Conclusion</h3> Available literature suggests education of staff is key to increasing organ donation discussions in end-of-life care planning.^{4 5} This project suggests a more inconsistent picture; despite three educational interventions, sustained improvements were not achieved. Challenges included the rotational resident doctor workforce, demonstrated by a marked decrease in compliance at the LH site after rotation. Coordinating interventions across both sites also presented difficulties; delays and staffing differences led to inconsistent results. Future plans to mitigate these issues include incorporating teaching sessions into all inpatient unit staff inductions and inclusion of organ donation discussion prompts in standardised advance care planning documents.. <h3>References</h3> NHS Blood and Transplant (2020) ‘Date announced for Max and Keira’s Law to come into effect’. [Online] Available at: https://www.organdonation.nhs.uk/get-involved/news/date-announced-for-max-and-keira-s-law-to-come-into-effect/[Accessed 04/10/25] NHS Blood and Transplant (2025) ‘Statistics about organ donation’. [Online] Available at: https://www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/statistics-about-organ-donation/[Accessed 04/10/25] National Institute for Health and Care Excellence (2016) ‘Organ donation for transplantation: improving donor identification and consent rates for deceased organ donation’. [Online] Available at: https://www.nice.org.uk/guidance/cg135 [Accessed 04/10/25] Madi-Segwagwe BC, Bracher M, Myall M, Long-Sutehall T. Barriers and facilitators to eye donation in hospice and palliative care settings: a scoping review. <i>Palliative Medicine Reports</i> 2021;<b>2</b>(1):175–187. Wale J, Arthur A, Faull C. An analysis of knowledge and attitudes of hospice staff towards organ and tissue donation. <i>BMJ Supportive &amp; Palliative Care</i> 2014;<b>4</b>:98–103.