L'action du Collectif revêt deux formes. La première est un réseau d'accompagnement qui, alerté par les services funéraires municipaux dès qu'ils ont connaissance des funérailles d'une personne isolée, se mobilise selon les disponibilités de chacun pour être présent. L'objectif étant que nul ne soit inhumé sans une présence citoyenne et fraternelle. La deuxième consiste en l'organisation d'une cérémonie annuelle sous la présidence du maire. Il s'agit de rendre hommage à toutes les personnes accompagnées l'année précédente.
Background: Homeless people experience multiple health problems and early mortality. In the Netherlands, they can get shelter-based end-of-life care, but shelters are predominantly focused on temporary accommodation and recovery.
Aim: To examine the characteristics of homeless people who reside at the end-of-life in shelter-based nursing care settings and the challenges in the end-of-life care provided to them.
Design: A retrospective record study using both quantitative and qualitative analysis methods.
Setting/participants: Two Dutch shelter-based nursing care settings. We included 61 homeless patients who died between 2009 and 2016.
Results: Most patients had somatic (98%), psychiatric (84%) and addiction problems (90%). For 75% of the patients, the end of life was recognised and documented; this occurred 0–1253 days before death. For 26%, a palliative care team was consulted in the year before death. In the three months before death, 45% had at least three transitions, mainly to hospitals. Sixty-five percent of the patients died in the shelter, 27% in a hospital and 3% in a hospice. A quarter of all patients were known to have died alone. Documented care difficulties concerned continuity of care, social and environmental safety, patient–professional communication and medical-pharmacological alleviation of suffering.
Conclusions: End-of-life care for homeless persons residing in shelter-based nursing care settings is characterised and challenged by comorbidities, uncertain prognoses, complicated social circumstances and many transitions to other settings. Multilevel end-of-life care improvements, including increased interdisciplinary collaboration, are needed to reduce transitions and suffering of this vulnerable population at the end of life.
PURPOSE OF REVIEW: This review seeks to identify the current prevalence of potentially life-limiting respiratory conditions among those who have experienced homelessness, incarceration or had criminal justice involvement, and current developments in, and barriers to, delivery of supportive and palliative respiratory care to these populations. These structurally vulnerable populations are known to be growing, their health behaviours more risky, and their morbidity and mortality higher, with evidence of accelerated ageing.
RECENT FINDINGS: Most studies identified investigated prevalence of respiratory conditions, which were found to be high. In contrast, only one study directly explored supportive and palliative care (in a prison population) and none considered or addressed palliative and end-of-life needs of these populations, or mechanisms to address them. There was an absence of qualitative work and studies of the impact on, or role of, family, friends or informal networks.
SUMMARY: There is a need for evidence-based interventions to reduce the risk of communicable respiratory conditions and a greater understanding of disease trajectories and management for these vulnerable populations, including provision of accessible appropriate supportive, palliative and end-of-life care.
Background/Objectives: Older homeless-experienced adults have low rates of advance care planning (ACP) engagement despite high rates of morbidity and mortality. To inform intervention development, we examined potential barriers and solutions to ACP engagement.
Design: Cross-sectional qualitative study.
Setting: We recruited adults who were homeless in the prior three years and =50 years of age in the San Francisco Bay Area, and recruited clinical stakeholders from a national meeting of homeless providers. We analyzed qualitative data using thematic analysis.
Measurements: We conducted semistructured interviews with homeless-experienced older adults (n = 20) and focus groups with clinical stakeholders (n = 24) about perceived barriers and solutions to ACP engagement.
Results: Participants considered ACP important, reflecting on deaths of people in their networks who had died. Participant-identified barriers to ACP included poor ACP knowledge, lack of familial ties and social isolation, competing priorities, avoidance and lack of readiness, fatalism and mistrust, and lack of ACP training for clinical and nonclinical staff. They identified solutions that included framing ACP as a way to provide meaning and assert choice, providing easy-to-read written documents focused on the populations' unique needs, tailoring content and delivery, initiating ACP in nonclinical settings, such as permanent supportive housing, and providing incentives.
Conclusions: Both older homeless-experienced adults and clinical stakeholders believe that ACP is important, but acknowledge multiple barriers that impede engagement. By focusing on potential solutions, including capitalizing on opportunities outside of health care settings, focusing on the period after housing, and tailoring content, there are opportunities to improve ACP uptake.
BACKGROUND: People experiencing homelessness have significantly shorter life expectancies and higher rates of morbidity and mortality than the general population. Many barriers have been identified to providing palliative care to this population. This study examines health and social service providers' experiences providing end-of-life care to people experiencing homelessness, seeking recommendations to improve both patient and provider experience.
METHODS: Qualitative study using phenomenological approach. Qualitative and quantitative surveys with 136 health and social service providers in Ontario's South East Local Health Integration Network, in-depth interview with 10 key informants.
FINDINGS: Participants approached the end-of-life care of people experiencing homelessness from a framework of dignity and respect. Themes included barriers to end-of-life care internal to the health care system; care avoidance; the experience of stigma for this population when accessing end-of-life care; lack of provider information and awareness on how to provide care for marginalized groups, how to provide care in the context of substance use, and how to assist clients in accessing the formal palliative care system; and the need for harm reduction approaches to end-of-life care for persons experiencing homelessness.
DISCUSSION: Focusing on harm reduction, and using the framework of Equity-Oriented Health Care to make systemic, cultural, and policy changes to develop a palliative-care system for persons experiencing homelessness may improve care experience for both patients and providers.
BACKGROUND: Thirty-five thousand Canadians are homeless on any given night, and mortality rates are much higher than for the general population. Studies have identified barriers to accessing end-of-life care among the homeless, including logistic barriers and experiences of stigma. This study seeks to explore the experience, goals, fears, and hopes surrounding death in the setting of homelessness or vulnerable housing.
METHODS: Qualitative phenomenological study involving focus groups and in-depth interviews with 31 people with lived experience of homelessness. Additional sociodemographic data collected from participants.
FINDINGS: Themes included extensive experience with death and dying, relationship with mortality, ideas for a good death, and desires for end-of-life care. Participants presented suggestions for improving end-of-life care including care that was delivered by people with lived experience of homelessness and substance use; care that was provided either as outreach or in a welcoming, flexible institutional environment; care that minimized stigma and enhanced dignity; and care that respected people's desires to use substances at the end of life.
DISCUSSION: Participants with lived experience of homelessness were articulate in their desires and needs for end-of-life care. They have extensive exposure to mortality and feel that their needs are not met by the current palliative care system. Recommendations for system change that include harm reduction and equity-oriented health care, as well as a combination of outreach and inpatient services, are necessary before palliative care services will be accessible for this population.
Although the process of dying is a universal human experience, it often magnifies individuals’ unique cultural differences. Persons experiencing homelessness (PEHs) have unique barriers, challenges, and wishes for end-of-life care. There is insufficient evidence about how to provide culturally congruent advance care planning (ACP) through advance directive (AD) completion for PEHs. This study addressed this knowledge gap, and its findings serve as the basis for developing additional strategies to promote a satisfying ACP experience for this population when they complete an AD. The purpose of this study was to discover if an AD form recreated for PEHs would positively affect their completion of the AD as well as their overall experience with ACP. Guided by the culture care theory and qualitative ethnonursing methodology, 38 individuals (30 PEHs and 8 student nurses) were interviewed. Data were analyzed using the 4 phases of ethnonursing analysis. The 3 themes abstracted were (1) “it needs to be done,” (2) the presence or absence of trusted family support, and (3) ACP for PEHs is facilitated by an AD workshop. Nursing interventions based on study findings can be used to help promote a dignified, meaningful ACP experience for vulnerable populations.
BACKGROUND: Considerable gains are being made in data-driven efforts to advance quality improvement in health care. However, organizations providing hospice-oriented palliative care for structurally vulnerable persons with terminal illnesses may not have the enabling data infrastructure or framework to derive such benefits.
METHODS: We conducted a pilot cross-sectional qualitative study involving a convenience sample of hospice organizations across North America providing palliative care services for structurally vulnerable patients. Through semistructured interviews, we surveyed organizations on the types of data collected, the information systems used, and the challenges they faced.
RESULTS: We contacted 13 organizations across North America and interviewed 9. All organizations served structurally vulnerable populations, including the homeless and vulnerably housed, socially isolated, and HIV-positive patients. Common examples of collected data included the number of referrals, the number of admissions, length of stay, and diagnosis. More than half of the organizations (n = 5) used an electronic medical record, although none of the record systems were specifically designed for palliative care. All (n = 9) the organizations used the built-in reporting capacity of their information management systems and more than half (n = 6) augmented this capacity with chart reviews.
DISCUSSION: A number of themes emerged from our discussions. Present data collection is heterogeneous, and storage of these data is highly fragmented within and across organizations. Funding appeared to be a key enabler of more robust data collection and use. Future work should address these gaps and examine opportunities for innovative ways of analysis and reporting to improve care for structurally vulnerable populations.
Objectives: As the homeless population ages, it is imperative to improve access to advance care planning (ACP) and document preferences in case medical decision-making capacity is lost.
Methods: We implemented an ACP Project to discuss and document advance care plans with all patients aged 45 and older who received primary care at our adult Homeless Program clinics.
Results: Over 14 months, ACP was discussed with 48% (n = 138) of the population and health care proxy (HCP) appointment with 91% (n = 125) of these patients. Most (62%; n = 77) appointed a HCP from personal relationships, though a significant minority (38%; n = 48) could not and were considered "surrogateless." End-of-life preferences varied. Approximately 20% of patients wanted to defer to a surrogate for each decision.
Discussion: ACP is feasible in primary care for adults who have experienced homelessness and should be incorporated into routine care.
Given the barriers to advance care planning (ACP) and low utilization of outpatient advance directives in hospital settings, it is unclear if ACP in primary care for adults who have experienced homelessness is effective and a valuable use of clinical time. As part of our ACP Project, we examined the feasibility and outcomes of ACP in primary care for patients who have experienced homelessness. We found that such efforts had significant impacts on patients' hospital care and allowed their wishes to be honored when they lost capacity for medical decision-making, particularly at the end of life. Here, we present six case studies demonstrating the outcomes of ACP in primary care for homeless adults and highlight lessons learned. To our knowledge, this is the first case series showing how ACP for homeless adults in primary care has been utilized during hospital care. Based on our findings, we believe that outpatient ACP even for the most socially vulnerable patients is feasible, often impactful, and should be integrated into routine primary care.
This literature review aimed to answer the focus question: are district nurses well placed to provide equitable end of life care (EOL) for homeless individuals? It focused on 10 primary research studies, from which two themes emerged and subsequently formed the basis of the discussion: (1) the difficulty in predicting disease trajectory in people who are homeless and (2) the gaps in existing systems. The main findings from these themes were a lack of education on the recognition of the dying and a general lack of knowledge of the complex challenges faced by and health needs of homeless people, which cause stigma from both the general public and health professionals towards these marginalised individuals. Further, there is certainly a lack of suitable places to deliver palliative and EOL care for people who are homeless. Available services are inflexible and have no tolerance for substance misuse, which creates an access barrier for homeless people in need of EOL care.
BACKGROUND: People experiencing homelessness often encounter progressive incurable somatic diseases in combination with psychiatric and psychosocial problems, and many need palliative care at the end of their lives. Little is known about how palliative care for this group can be started in good time and provided optimally. The objective of this paper is to give insight into the extent people experiencing homelessness have access to good palliative care.
METHODS: Qualitative in-depth interviews were held to reconstruct the cases of 19 people experiencing homelessness in the Netherlands. Eight cases concerned persons being in the palliative phase (using the surprise question) and the other 11 cases concerned persons recently died after a period of ill health due to somatic illness. We used purposive sampling until data saturation was reached. The total number of interviews was 52. All interviews were transcribed verbatim and analysed inductively.
RESULTS: Three key themes were: 'late access', 'capricious trajectory' and 'complex care'. The first key theme refers to the often delayed start of palliative care, because of the difficulties in recognizing the need for palliative care, the ambivalence of people experiencing homelessness about accepting palliative care, and the lack of facilities with specific expertise in palliative care for them. The second key theme refers to the illness trajectory, which is often capricious because of the challenging behaviour of people experiencing homelessness, an unpredictable disease process and a system not being able to accommodate or meet their needs. The third key theme refers to the complexity of their care with regard to pain and symptom control, psychosocial and spiritual aspects, and the social network.
CONCLUSIONS: The care for in the palliative phase does not satisfy the core requirements of palliative care since there are bottlenecks regarding timely identification, the social network, and the assessment and management of physical symptoms and psychosocial and spiritual care needs. Education in palliative care of outreach professionals, training staff in shelters in the provision of palliative care, and building a network of palliative care specialists for people experiencing homelessness.
Traditional models of palliative care are largely inaccessible to homeless persons, and their preferences regarding end-of-life care are poorly understood. The purpose of the present scoping review is to summarize the burgeoning gray and academic literature on end-of-life care for homeless persons. Five medical databases, seven social science databases, and four gray literature databases were searched, resulting in 57 relevant titles. Six themes emerged: (a) Characteristics of homeless persons who require end-of-life care; (b) preferences and concerns of homeless persons approaching the end of life; (c) the role of spirituality for homeless persons at the end of life; (d) barriers to care at the patient, provider, and institutional or structural levels; (e) inclusive models of palliative care; and (f) implications for policy and practice. Practitioners and homeless persons must negotiate many obstacles in the provision and receipt of palliative care. However, there is tremendous potential and opportunity to improve the quality of life at the end of life for this vulnerable population.
Background: In the UK, many people experiencing homelessness whose health is deteriorating remain in homeless hostels due to few suitable alternative places of care. Hostel staff struggle to support residents with deteriorating health and palliative care services are rarely involved. There is recognition of the need for multiagency working to support this group.
Objectives: To pilot and evaluate the impact of a two-day training course for hostel staff around supporting clients with palliative care needs, and increasing multiagency working.
Design: Mixed methods evaluation using pre-and-post training data collection.
Settings and Participants: Frontline staff from two London homeless hostels.
Methods: Staff from two hostels attended a two day training course. Self-perceived confidence in supporting residents with deteriorating health, knowledge of palliative care, openness to discussing deteriorating health and work related stress were assessed at baseline and immediately after training using a novel questionnaire. Qualitative data was collected via focus groups immediately after and three months post-training.
Results: Twenty four participants attended at least one day of training, 21 (87%) completed the course. Training was reported to be useful and relevant. Modest improvements in self-perceived work related stress, knowledge, confidence and openness were observed following training. At three months, qualitative data indicated the beginnings of a shift in how palliative care was conceptualised and an increase in knowledge and confidence around supporting residents. Anxiety regarding the role of the hostel in palliative care, the recovery focused ethos of homelessness services and fragmented systems and services presented challenges to establishing changes.
Conclusions: Training can be useful for improving knowledge, confidence, openness and work related stress. Recommendations for implementing changes in how people experiencing homelessness are supported include embedding training into routine practice, promoting multidisciplinary working, incorporating flexibility within the recovery focused approach of services and recognising the need for emotional support for staff.
BACKGROUND:: Spiritual care is a fundamental component of holistic end-of-life (EoL) care.
AIM:: To explore what is known about the spiritual concerns of people experiencing homelessness towards the EoL.
METHODS:: A narrative literature review was conducted from 1997 to June 2018 using CINAHL Complete, MEDLINE and PubMed. This identified just 11 relevant papers; eight papers report on studies based in the US, one paper reports on a study based in the Republic of Ireland (ROI), and two of the papers are literature reviews.
RESULTS:: Both the ROI and US studies report the primacy of religious beliefs and spiritual experience for people experiencing homelessness considering EoL issues. However, the findings of studies from the US and the ROI are not necessarily transferable to the other populations of people experiencing homelessness. Furthermore, it cannot be assumed that the spiritual needs of people experiencing homelessness mirror those of the housed population.
CONCLUSION:: There is a need for further research into the international perspective on the spiritual needs of homeless people towards the EoL, especially in secular countries.
CONTEXT: Palliative care for homeless people is often given late, if at all. Professionals in both palliative care and shelter care are often insufficiently equipped to provide this complex care.
OBJECTIVES: To provide insights into the palliative care experiences of professionals and homeless people., including barriers and facilitators to care, and to investigate whether a consultative function can help improve palliative care for homeless people.
METHODS: Six focus groups; four with professionals (n=19) and two with severely ill homeless people (n=15). Professionals were sampled purposively in organizations providing (palliative) care to the homeless. Homeless people were recruited by opportunity sampling.
RESULTS: Palliative care for homeless people is especially complex and differs substantially from regular palliative care. It differs greatly between professionals, institutions and cities. Homeless people get less autonomy than they would like. Homeless people and professionals have different perceptions of the care provided. Trusting relationships between professionals and homeless people are essential, and easily accessible, and flexible care is needed. Consultation, in particular involving exchange of expertise between professionals, can provide added value to professionals. Homeless people consider consultation primarily as an opportunity to train professionals to show more understanding, provide tailored palliative care and enhance professional collaboration. The local situation, characteristics of a consultant and role of a consultant in providing information and education must be considered when developing the consultation process.
CONCLUSION: Consultation can play an important role in improving palliative care by linking disciplines, providing support to professionals and providing appropriate palliative care to homeless people.
CONTEXT: The homeless population is aging. Older homeless adults experience premature development of age-related conditions and an elevated symptom burden. Little is known about symptom experience among older homeless adults.
OBJECTIVES: To characterize the experience, understanding, and management of physical, psychological, social (e.g. loneliness), and existential (e.g. regret, loss of dignity) symptoms among older homeless adults.
METHODS: We conducted semi-structured interviews from June 2016 through March 2017 with a purposive sample of participants from the HOPE HOME cohort, a longitudinal study of homeless adults ages 50 and older. We analyzed data between June 2016 and December 2017 using thematic analysis.
RESULTS: We found four main themes: 1) Non-physical symptoms are interwoven with and as distressing as physical symptoms; 2) Individuals attribute symptoms to childhood abuse, manual labor, the conditions of homelessness, and aging; 3) Symptoms interfere with daily functioning, causing negative changes in personality, energy, and motivation; and 4) Individuals cope with symptoms through religion, social support, and substance use.
CONCLUSION: Homelessness causes and exacerbates physical and psychological distress. Interventions should address multiple interconnected dimensions of suffering. Health systems that care for homeless patients should adapt palliative care practices using a stepwise approach. Homeless shelters should adopt policies and modifications that increase privacy and autonomy while promoting community-building. Housing interventions should promote community-building. All who work with people experiencing homelessness should avoid stigmatizing language and recognize homeless individuals' sources of strength and coping.
There is a scarcity of research into the end-of-life preferences of homeless people in the UK. Wendy Ann Webb, Theresa Mitchell, Brian Nyatanga and Paul Snelling examine the barriers to this population accessing palliative care and outline ways in which their preferences can be determined. They argue that while the priorities of homeless people are not yet known – and research into this area should itself be prioritised – it should not be assumed that they will mirror those of the general population who have a home and resources and who often have multiple support networks.
Older homeless-experienced adults have low engagement in advance care planning (ACP) despite high morbidity and mortality. We conducted a cross-sectional analysis of a cohort of 350 homeless-experienced adults aged 50 and older in Oakland, California. We assessed the prevalence of potential surrogate decision-makers, ACP contemplation, discussions, and ACP documentation (surrogate designation, advance directives). We used multivariable logistic regression to examine factors associated with ACP discussions and documentation. The median age of the cohort was 59 (range 52-82), 75.2% were male, and 82.1% were black. Sixty-one percent reported a potential surrogate, 21.5% had discussed ACP, and 19.0% reported ACP documentation. In multivariable models, having 1 to 5 confidants versus none (adjusted odds ratio (aOR)=5.8, 95% confidence interval (CI)=1.7-20.0), 3 or more chronic conditions versus none (aOR=2.3, 95% CI=0.9-5.6), and a recent primary care visit (aOR=2.1, 95% CI=1.0-4.4) were associated with higher odds of ACP discussions and each additional 5 years of homelessness (aOR=0.7, 95% CI=0.5-0.9) with lower odds. Having 1 to 5 confidants (aOR=5.0, 95% CI=1.4-17.5), being black (aOR=5.5, 95% CI=1.5-19.5), and having adequate versus limited literacy (aOR=7.0, 95% CI=1.5-32.4) were associated with higher odds of ACP documentation and illicit drug use (aOR=0.3, 95% CI=0.1-0.9) with lower odds. Although the majority of older homeless-experienced adults have a potential surrogate, few have discussed or documented their ACP wishes; the odds of both were greater with larger social networks. Future interventions must be customized for individuals with limited social networks and address the instability of homelessness, health literacy, and the constraints of safety-net healthcare settings.
BACKGROUND: Homeless people often suffer from complex and chronic comorbidities, have high rates of morbidity and die at much younger ages than the general population. Due to a complex combination of physical, psychosocial and addiction problems at the end of life, they often have limited access to palliative care. Both the homeless and healthcare providers experience a lot of barriers. Therefore, providing palliative care that fits the needs and concerns of the homeless is a challenge to healthcare providers. This systematic review aims to summarize evidence about the concerns, palliative care needs and preferences of homeless people, as well as barriers and facilitators for delivering high quality palliative care.
METHODS: PubMed, Embase, PsycINFO, CINAHL and Web of Science were searched up to 10 May 2016. Included were studies about homeless people with a short life expectancy, their palliative care needs and the palliative care provided, that were conducted in Western countries. Data were independently extracted by two researchers using a predefined extraction form. Quality was assessed using a Critical Appraisal instrument. The systematic literature review was based on the PRISMA statement.
RESULTS: Twenty-seven publications from 23 different studies met the inclusion criteria; 15 studies were qualitative and eight were quantitative. Concerns of the homeless often related to end-of-life care not being a priority, drug dependence hindering adequate care, limited insight into their condition and little support from family and relatives. Barriers and facilitators often concerned the attitude of healthcare professionals towards homeless people. A respectful approach and respect for dignity proved to be important in good quality palliative care.
CONCLUSIONS: A patient-centred, flexible and low-threshold approach embodying awareness of the concerns of homeless people is needed so that appropriate palliative care can be provided timely. Training, education and experience of professionals can help to accomplish this.