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.
Homelessness is a complex and multidimensional issue often involving a combination of personal vulnerability, the limitations of social housing, and inadequacies in welfare support. Providing palliative and end-of-life care to people experiencing homelessness is challenging, both to individuals receiving care and nurses aiming to meet their complex needs. This article discusses what is understood by the concept of 'homelessness' and examines the barriers to accessing effective healthcare for people who are homeless and have life-limiting conditions. The authors review the research into end of life care for people experiencing homelessness and identify areas for further investigation, notably the lack of evidence regarding the end of life care priorities of these individuals. There is a focus on the availability of healthcare services for people who are homeless at the end of life, as well as the factors that should be considered if evidence-based healthcare services for this group of people are to be improved in the future.
La prise en charge de la fin de vie et de la mort n’est pas exceptionnelle dans les situations de grande précarité. Une étude descriptive rétrospective a été réalisée, analysant les dossiers de 18 personnes décédées entre le 1er juin 2013 et 15 juillet 2016, ayant en commun d’avoir été prises en charge au sein d’un établissement accueillant des personnes sans domicile. L’objectif principal était de relever les principales caractéristiques médico-psycho-sociales. L’âge moyen lors du décès était de 54,8 ans. Il existait une surreprésentation des conduites addictives et des maladies chroniques. Les principales causes de décès étaient l’évolution d’une néoplasie et les complications liées à l’alcoolisme. Cinq personnes ont bénéficié de l’évaluation par une équipe mobile de soins palliatifs et 6 d’un questionnement éthique. Dix sont décédées en milieu hospitalier dont 5 dans un service pratiquant les soins palliatifs. L’errance rend difficile le suivi médico-social. La coordination et la formation des intervenants est nécessaire afin d’assurer une prise en charge optimisée. Trois cadres syndromiques ont été identifiés permettant de cibler les actions entreprises. La communication entre les professionnels du champ de la précarité et des soins palliatifs est essentielle pour définir le projet de vie de ces patients.
OBJECTIVES: To explore the views and experiences of people who are homeless and those supporting them regarding conversations and approaches to palliative care
SETTING: Data were collected between October 2015 and October 2016 in homeless hostels and day centres and with staff from primary and secondary healthcare providers and social care services from three London boroughs.
PARTICIPANTS: People experiencing homelessness (n=28), formerly homeless people (n=10), health and social care providers (n=48), hostel staff (n=30) and outreach staff (n=10).
METHODS: In this qualitative descriptive study, participants were recruited to interviews and focus groups across three London boroughs. Views and experiences of end-of-life care were explored with people with personal experience of homelessness, health and social care professionals and hostel and outreach staff. Saturation was reached when no new themes emerged from discussions.
RESULTS: 28 focus groups and 10 individual interviews were conducted. Participants highlighted that conversations exploring future care preferences and palliative care with people experiencing homelessness are rare. Themes identified as challenges to such conversations included attitudes to death; the recovery focused nature of services for people experiencing homelessness; uncertainty regarding prognosis and place of care; and fear of negative impact.
CONCLUSIONS: This research highlights the need for a different approach to supporting people who are homeless and are experiencing advanced ill health, one that incorporates uncertainty and promotes well-being, dignity and choice. We propose parallel planning and mapping as a way of working with uncertainty. We acknowledge that these approaches will not always be straightforward, nor will they be suitable for everyone, yet moving the focus of conversations about the future away from death and dying, towards the present and the future may facilitate conversations and enable the wishes of people who are homeless to be known and explored.
BACKGROUND: Being homeless or vulnerably housed is associated with death at a young age, frequently related to medical problems complicated by drug or alcohol dependence. Homeless people experience high symptom burden at the end of life, yet palliative care service use is limited.
AIM: To explore the views and experiences of current and formerly homeless people, frontline homelessness staff (from hostels, day centres and outreach teams) and health- and social-care providers, regarding challenges to supporting homeless people with advanced ill health, and to make suggestions for improving care.
DESIGN: Thematic analysis of data collected using focus groups and interviews.
PARTICIPANTS: Single homeless people ( n=28), formerly homeless people ( n=10), health- and social-care providers ( n=48), hostel staff ( n=30) and outreach staff ( n=10).
RESULTS: This research documents growing concern that many homeless people are dying in unsupported, unacceptable situations. It highlights the complexities of identifying who is palliative and lack of appropriate places of care for people who are homeless with high support needs, particularly in combination with substance misuse issues.
CONCLUSION: Due to the lack of alternatives, homeless people with advanced ill health often remain in hostels. Conflict between the recovery-focused nature of many services and the realities of health and illness for often young homeless people result in a lack of person-centred care. Greater multidisciplinary working, extended in-reach into hostels from health and social services and training for all professional groups along with more access to appropriate supported accommodation are required to improve care for homeless people with advanced ill health.
Those who are homeless face illness and death, however, live in places not conducive to provision of end-of-life care. Limited information exists on causes of death among this group of people. To characterize causes of death, data were requested from the Office of the Chief Medical Examiner for Alberta Justice, Canada, for people determined to be homeless in the period 2007-2009. One hundred and thirty-two deaths were reported. Most deaths that could be classified were attributed to drug and alcohol use/abuse and to natural causes. For many, end-of-life circumstances may have been improved through provision of palliative care delivered in a hospice setting.
Un constat résonne malheureusement comme une évidence : les inégalités de la vie se prolongent devant la mort. Les morts de la rue, "invisibles", (en témoigne la difficulté d'avoir des statistiques de décès représentatives) sont appréhendés comme le symptôme de la relégation sociale et des effets néfastes de l'individualisation. Les conséquences de la précarité, de la perte de liens, ne s'arrêtent pas après le décès : qui se soucie de la mort des plus précaires ? Au-delà d'une vision nostalgique où la communauté familiale et les proches étaient présents pour organiser les funérailles, des collectifs se mobilisent aujourd'hui pour coordonner les obsèques de ces défunts, et surtout leur donner une visibilité. Il y a enjeu à socialiser la mort, les morts, notamment pour les plus exclus.
Origine : BDSP. Notice produite par EHESP kHooR0x7. Diffusion soumise à autorisation
Les objectifs principaux de ce travail sont d'estimer le nombre de décès de personnes "SDF" en France en 2015 et de décrire le parcours des personnes étant ou ayant été "SDF" décédées en France en 2015. Au total, 585 décès survenus en 2015 ont été transmis au CMDR. Parmi eux, 497 personnes étaient "SDF" et 88 anciennement "SDF". Le nombre de décès signalé au collectif se situe actuellement à 497 soit près de 6 fois moins que le chiffre total estimé. D'après une étude menée en collaboration avec l'Inserm-CepiDc en 2013 l'on pourrait estimer le nombre total des décès de personnes "SDF" en France en 2015 à 2838 (entre 1489 et 4253).
Origine : BDSP. Notice produite par IRDES E9rR0xpp. Diffusion soumise à autorisation
En quinze années d'existence, le collectif "Les morts de la rue" a changé en profondeur le regard porté sur le décès des sans-abri aussi bien par la société, les chercheurs, les pouvoirs publics que par les associations. Au-delà de son envergure militante, il a affiné sa mission en proposant accompagnement et analyse. Jusqu'à se faire une place dans le milieu associatif. (R.A.).
Origine : BDSP. Notice produite par EHESP AR0x9oAq. Diffusion soumise à autorisation
Les problématiques des personnes qui vivent dans la rue sont diverses et complexes. Elles requièrent de nombreuses qualités de la part des professionnels. Vivre dans la rue signifie souvent mourir dans la rue. Les professionnels sont alors confrontés à des questions pratiques et éthiques. Ils ont un rôle essentiel aussi bien dans l’écoute que dans l’accompagnement. Exemple avec le collectif Les Morts de la rue.