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Abstract
Background Homeless adults experience a significant symptom burden when living with a life-limiting illness and nearing the end of life. This increases the inequalities that homeless adults face while coping with a loss of rootedness in the world. There is a lack of palliative and end of life care provision specifically adapted to meet their needs, exacerbating their illness and worsening the quality of their remaining life.
Aim To identify interventions and models of care used to address the palliative and end of life care needs of homeless adults, and to determine their effectiveness.
Methods Standard systematic reviewing methods were followed, searching from 1 January 2000 the databases: Ovid MEDLINE, EMBASE, SCOPUS, Web of Science, CINAHL and PsycInfo. Results were reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and described using a narrative synthesis. Study quality was assessed using Hawker’s Quality Assessment Tool.
Results Nine studies primarily focused on: education and palliative training for support staff; advance care planning; a social model for hospice care; and the creation of new roles to provide extra support to homeless adults through health navigators, homeless champions or palliative outreach teams. The voices of those experiencing homelessness were rarely included.
Conclusion We identified key components of care to optimise the support for homeless adults needing palliative and end of life care: advocacy; multidisciplinary working; professional education; and care in the community. Future research must include the perspectives of those who are homeless.
- Palliative Care
- Terminal care
- Supportive care
- Hospice care
- Quality of life
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information. Not applicable.
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WHAT IS ALREADY KNOWN ON THIS TOPIC
Use of palliative care services by the homeless population is limited; there is a considerable lack of end of life care provision specifically adapted to meet their biopsychosocial needs.
WHAT THIS STUDY ADDS
This systematic review provides a detailed understanding of the nature of interventions and models of care currently used to deliver palliative and end of life care to homeless adults, and what interventions are most effective to enhance the support for these marginalised individuals.
HOW THIS STUDY MIGHT AFFECT RESEARCH, PRACTICE OR POLICY
Key components have been identified which are most important for optimising the delivery of palliative and end of life care to homeless adults: advocacy; multidisciplinary working; professional education; and care integrated into the community settings where the homeless population is based. Future research must include the perspectives of those who are homeless, build on the components which we know work, and address the sustainability of these interventions and models of care.
Background
The numbers and needs of people experiencing homelessness while living with a life-limiting illness are increasing, yet these marginalised individuals are restricted from mainstream health and social care, despite often having the greatest needs; this is a pertinent issue that must be addressed within palliative and end of life care.1 The number of people experiencing homelessness in the UK is rapidly rising; Shelter2 reports that 1/182 people are homeless, with over 3000 rough sleeping every night. Similarly, rates of homelessness within European countries including Germany, Spain and Ireland are also rising: recent data from FEANTSA3 (the European Federation of National Organisations Working with the Homeless) report rising levels of homelessness within these countries, reaching 262 645, 28 552 and 11 632, respectively. However, these figures are likely an underestimation due to ‘hidden homelessness’ in which an individual is homeless but missing from the data.
Homelessness, according to Somerville,4
is not just a matter of lack of shelter or lack of abode, a lack of a roof over one’s head. It involves deprivation across a number of different dimensions—physiological (lack of bodily comfort or warmth), emotional (lack of love or joy), territorial (lack of privacy), ontological (lack of rootedness in the world, and anomie [a theory in which purpose and goals cannot be achieved due to lack of means5]) and spiritual (lack of hope, lack of purpose).
Elements of the ETHOS light criteria6 have been adopted within this review to describe the different types of homelessness (table 1). Many homeless adults suffer with trimorbidity, explained by Vickery et al7 as ‘a subset of multimorbidity representing overlap of physical health, mental health, and substance use conditions’; this can make caring for these individuals complex and challenging. Health inequalities are evident for this ostracised community, and life expectancy is exceedingly low: 43 years for women and 45 years for men, compared with the UK national average of 83 years and 79 years, respectively.8 Most notably, deaths within the homeless community are continuing to rise annually.9
The spectrum of homelessness
Somerville highlights the crucial need for a holistic approach to care for homeless adults, yet numerous hurdles exist in the delivery of good palliative and end of life care for this population. Homeless adults often experience a large symptom burden near the end of life, particularly pain, worry, sadness and exhaustion.10 Many also have growing mistrust in healthcare professionals and underuse healthcare services due to fear of stigmatisation, discrimination and perceived healthcare prejudice. There is a considerable lack of palliative and end of life care provision specifically adapted to meet the biopsychosocial needs of the homeless population; this exacerbates the illness burden for these destitute individuals and worsens the quality of their remaining lifetime.
A systematic review was undertaken to identify the strengths and gaps in the delivery of palliative and end of life care to homeless adults, and make recommendations to bridge these gaps, with the aim of improving health and social care practice. Our review question aimed to determine what interventions and models of care are used to address the palliative and end of life care needs of adults who are experiencing homelessness, and are they effective? The objectives for adults experiencing homelessness, and needing palliative and end of life care, were to: (1) describe the interventions and models of care and (2) consider the strengths and gaps of the interventions and models of care, and discuss their effectiveness.
Methods
Preliminary searching was first undertaken using the Database of Systematic Reviews, the Database of Abstracts of Reviews of Effects and PROSPERO. We identified no similar systematic reviews, however, a relevant scoping review by James et al11 reports that the provision of palliative care to homeless adults is complex with many barriers hindering the delivery of quality care.
We conducted a systematic review using a standard methodological framework, adapted from the Centre for Reviews and Dissemination12 (CRD) on how to undertake systematic reviews in healthcare. We followed the PEOS (Population, Exposure, Outcome and Study Design) framework to build a focused research question (table 2). Case series and case reports, commentary, review and opinion pieces were excluded due to the high potential for bias within these types of study designs. Research which did not report on interventions or models of care, or include homeless adults for at least 50% of their study population was also excluded. Results were reported following Preferred Reporting Items for Systematic Reviews and Meta-Analyses reporting guidelines.13
PEOS framework
Our search strategy (table 3) was independently reviewed and refined by a librarian with expertise in information skills. Systematic searches were conducted on electronic databases using MeSH terms employing Boolean logical operators of “AND” and “OR”, in addition to free text searches (identified as key words). Truncations of words using an * was undertaken to enable the inclusion of multiple endings of the specific term. We limited the search criteria to “English language”. Online databases were searched on 22 November 2023 for articles published from 1 January 2000 using Ovid MEDLINE, EMBASE, SCOPUS, Web of Science, CINAHL and PsycInfo.
Search strategy
All identified citations were uploaded into the bibliographic software, EndNote21, and duplicate studies were removed. During initial screening, one author (MRC) oversaw the screening of study titles and abstracts; discussion with the second author (FM) was undertaken on 5% of studies during this stage to determine their relevance to the research question. One reviewer undertook full-text screening of studies (MRC); 30% of studies at this stage were discussed with the second author (FM) to determine suitability for inclusion. Data were extracted into tabular format on the design, context, quality and effectiveness of interventions and models of care.
Quality assessment of individual studies was formally undertaken using Hawker’s Quality Assessment Tool for Qualitative Studies.14 Nine domains within each individual study were assessed and categorised as being of good, fair, poor or very poor quality. The minimum score that could be achieved for each paper using this tool was 9, the maximum 36. High, medium and low quality studies were determined based on their cumulative score across the nine domains, ranging between 30–36, 24–29 and 9–23, respectively.
A meta-analysis was not completed due to the heterogeneity of studies; instead, we undertook a narrative synthesis due to its appropriateness for organising and summarising the main findings from a varied body of research. We used formal guidance by Popay et al15 for conducting a narrative synthesis and the following steps were addressed: ‘developing a theory of how the intervention works, why and for whom; developing a preliminary synthesis of findings of included studies; exploring relationships in the data; assessing the robustness of the synthesis’. We selected thematic analysis as the best method to describe the interventions and models of care, and consider their strengths, gaps and effectiveness.
Results
Study selection
The search was conducted in November 2023. 5487 studies were initially identified. After screening and full-text review, nine studies were included (figure 1).
Preferred Reporting Items for Systematic Reviews and Meta-Analyses flow diagram.13
Study characteristics
Three included studies were qualitative,16–18 one was mixed methods,19 three were service evaluations/improvements,20–22 one was a retrospective cohort study23 and one was a randomised control trial.24 Different interventions and models of care and whether they worked were mainly reported qualitatively, however, four studies included quantitative reporting.19 20 23 24 Qualitative data were collected using questionnaires,19 24 semi-structured interviews,18 monthly reporting via email and telephone,18 focus group interviews19 and photovoice exploration in which participants photographed components of a model of care found to be most meaningful to them.17 Quantitative data were collected from tabulation of key performance indicators achieved,20 review of patient medical notes,23 evaluation of baseline and outcome questionnaires19 and uptake of an intervention.16 24 Results from two studies did not specify how they were collected.21 22 The locations of these included studies were the UK,18 19 21 Canada20 22 23 and the USA.16 17 24 All interventions and models of care were instigated between the years 2001 and 2021.
Sample sizes were only reported in some studies. Where documented, numbers of participants ranged from 3 to >150. Five study populations primarily reported from professionals18–22 with roles including non-clinical hostel staff, palliative care doctors, palliative care nurses, social workers and community nurses. Four study populations focused primarily on the care of homeless adults.16 17 23 24 Financial reimbursement was provided within two studies to homeless adults for their participation.17 24 Only one study focused on the experiences of a model of care directly from the perspective of the homeless adults involved; this was through interpretation of photos taken by patients during their stay in a social hospice.17
Demographics of homeless adults were not always reported. However, in studies that did document homeless adult characteristics, most were of white ethnicity; two study populations predominantly consisted of black homeless adults.16 24 There was a significant male preponderance in all the homeless populations studied; one study included transgender adults.23 Homeless adults involved in this review were at different stages of their disease trajectories: one study focused on the transfer of terminally ill homeless individuals into a hospice to die in their preferred place of death23; another focused on the provision of care to adults with a predicted life expectancy of under 6 months,17 and a further study emphasised engagement with homeless adults living with a high degree of frailty.22
Most homeless individuals were hostel-based. Only two papers included homeless adults that were rough sleeping, couch surfing or vulnerably housed within other accommodations beyond the realms of a shelter.17 23 Most homeless adults were aged under 65 years due to age limits of sheltered accommodation restricting acceptance beyond this age.18 Many were living with trimorbidity (overlap of poor physical health, poor mental health and substance use conditions); substance use is a common barrier to being accepted into hostels and hospices.16 18 23 However, in light of this, three studies were inclusive of patients with addiction: two implemented a harm reduction strategy to minimise the adverse effects of substance misuse22 23; one explicitly enrolled homeless adults living with a substance abuse diagnosis.16
Quality of included studies
The quality assessment of all included studies can be found within online supplemental table 1. The highest scoring study in this review scored 33/36,18 while the lowest scored 17/36.21 The highest quality score was awarded to an explorative qualitative study. It described the nature of the intervention and its success in detail using interviews and surveys, completed preintervention and postintervention, to gain insight into its impact. Its methodology was clearly ascribed with minimal areas for bias identified. The lowest quality study was a service evaluation on a nurse led homeless project. Despite the model working well to deliver its outcomes, the study had poor internal validity with limited description of its methodology and sampling; and little reporting of limitations.
Supplemental material
Nature of the interventions/models of care
The nature of the interventions and models of care identified are explored in table 4, including specification of the types of homelessness included. The included studies primarily focused on education and palliative training for support staff,18 19 21 22 advance care planning,16 19 23 24 the creation of new roles to provide extra support to homeless individuals via the introduction of health navigators,20 homeless champions18 or palliative outreach teams.22 One study focused on the implementation of a social model of hospice care based within the community.17 Three studies were undertaken within hostels,16 18 19 two within hospices17 23 and four were embedded directly into the community as in-reach models of care.20–22 24
The nature of the interventions and models of care
Effectiveness of the interventions/models of care
Outcomes and effectiveness of the interventions and models of care are reported in table 5 (see online supplemental table 2 for a detailed review of the evidence of effectiveness). Multiagency communication and collaboration were common findings which enhanced the quality of palliative and end of life care provided to homeless adults and reduced care fragmentation among the various professionals involved.18–20 Advocacy was another common attribute of many interventions, enhancing person centred care for vulnerable adults experiencing homelessness. The introduction of a healthcare navigator, with expertise in social work, enabled the social determinants of health to be targeted for homeless adults in receipt of care.20 Similarly, social worker participation in advance directive completion favourably enhanced uptake of the intervention.24 Embedding specialist palliative care teams into hostels18 helped hostel staff to develop an increased awareness of both the social and healthcare needs of their hostel residents. Through collaboration with social workers and palliative care nurses, hostel staff felt this intervention was invaluable and allowed for the provision of individually tailored, holistic care.18
Supplemental material
Outcomes and effectiveness of identified interventions and models of care
Educational programmes19 21 enhanced the confidence and knowledge of hostel staff on the ethos of palliative care and how to use this within their practice, noting that the training was ‘invaluable’, ‘extremely beneficial’18 and ‘empowering’.21 However, it was mentioned that the increased workload relating to educational programmes risked potential staff burnout. To minimise this, two interventions encouraged hostel staff to optimise their well-being through use of counselling services and psychological support.20 22
Working within supportive environments enabled hostel staff to improve productivity and become more proactive, liaising with colleagues, and challenging external agencies, when needed, to act in the best interests of their residents.18 Hostel staff used their new skills to commence discussions on death and dying with hostel residents; they felt empowered having broken down the taboo associated with this subject.21 Hostel residents emphasised the beneficial impact of these timely conversations, and positively reported that they felt cared for which reduced fear and anxiety.18 21 Early recognition of health deterioration by hostel staff allowed for a prompt transfer of homeless adults to hospices or hospitals, according to their wishes. This allowed homeless adults to die with dignity and in the place of their choosing with appropriate support.21
To address the impact of grief and bereavement, spiritual support was offered for both homeless individuals and professionals involved in their care.23 A chaplain was available to provide religious counsel in one study.17 Grief circles,22 death cafes, and vigils were also introduced into hostels.18 These interventions were used to help ease the loss of fellow residents and improve psychological well-being within supportive and nurturing environments. Pets were encouraged in one hospice to provide invaluable companionship, unconditional love and comfort to their owners who were living with a terminal illness.17
A key challenge faced when engaging homeless adults in end of life discussions was their concurrent addictions to drugs and alcohol; this was a barrier that professionals involved in their care often struggled to overcome.19 However, interventions were also identified which actively overcame this struggle and acknowledged the vulnerability of homeless adults, including factors that potentiate their low self-esteem, such as racism, addiction and homophobia.19 22 23 Harm reduction strategies were advantageous in caring for homeless adults with trimorbidity, and when coupled with the reduction of pain and other symptoms attributable to terminal conditions, homeless adults were able to gradually reduce their intake of illicit drugs.23
Similarly, the utilisation of trauma informed care for homeless adults22 (a method which increases professional understanding that many homeless adults have lived through an unsurmountable level of trauma), helped to educate professionals involved in their care as to why they may maintain dependency on substances, despite the severity of their faltering health. Hostel staff was encouraged to build rapport with residents and break down existential barriers (including stigma for selected lifestyle choices) which helped residents to feel secure in their surroundings and improve adherence to medical treatment,19 while preventing further worsening harmful behaviours, such as the continuing use of drugs and alcohol.22 Previous research emphasises that understanding and addressing the complexities of the individual is essential within palliative and end of life care to ensure the delivery of personalised, holistic services.11 24
Two interventions and models of care were cost saving.16 23 However, others were time consuming to undertake, requiring both investment and dedication from professionals to integrate their newly learnt skills into practice. New interventions sometimes came at the expense and compromise of professionals fulfilling their usual routine tasks.18 The role of a healthcare navigator20 was recognised as causing a large workload for one person to manage; additionally, its lack of funding highlighted another potential barrier to sustaining the role and maximising its impact long-term.
Discussion
We identified several pivotal interventions and models of care which were successful for optimising the delivery of palliative and end of life care to homeless adults, and improving their outcomes. These key components are: advocacy; multidisciplinary communication and collaboration; professional education; and community-based, rather than institution-based (hospital or inpatient hospice), care.
Prior evidence supports our findings. A systematic review by Ahmed et al25 identified that a lack of palliative care knowledge and education among health and social care staff is a severe limitation to providing support to the homeless when living with a terminal illness. Our review shows that educational programmes are beneficial for improving palliative care delivery to homeless adults in the community. The HEARTH study conducted by Crane et al26 evaluated the success of specialised primary care services to deliver healthcare to the homeless; it emphasised that homeless adults felt most trusting of healthcare providers working within specialist homeless services, tailored to meet their complex needs. Cook et al27 identified that homeless adults often have significant comorbidities while living with concurrent addiction, meaning their palliative and end of life care needs often differ from the general population. Our review adds to the findings of both Cook et al and the HEARTH study and recognises that flexible, holistic, multidisciplinary palliative care is paramount in addressing the trimorbid elements (poor physical health, poor mental health and substance use conditions) influencing palliative care needs among the homeless community.
Somerville4 emphasises that homelessness comprises physiological deprivation (lack of bodily comfort or warmth); a pivotal factor needing to be addressed. The research we identified demonstrated gaps in addressing this; for example, some homeless adults were refused access into homeless shelters due to age, leaving them destitute and in distress, despite living with a terminal illness. Two hostels had an upper age limit of 65 years old,18 restricting the support accessible to them, yet palliative care provision is most often associated with older patients. 27.2% of adults over 65 identify as homeless,28 yet limiting access to hostels where palliative needs can be addressed, due to chronological age, is a significant structural hurdle.
Somerville also states that homelessness involves ontological deprivation relating to a lack of rootedness in the world.4 This lack of rootedness was particularly evident for some groups; for example, 25% of transgender adults experience homelessness in Britain,29 yet only one study included transgender participants within their study population.23 Homeless services often fail to support transgender adults culturally; these individuals are less likely to be accepted into shelter-based accommodation, and due to fear of discrimination and lack of understanding, transgender adults have increasing mistrust in health and social care providers.30 The Office for National Statistics31 reinforce our findings and document that other homeless populations are also under-recognised, including women and ethnic minorities. Black ethnicities are three times, and mixed race are two times, more likely to be experiencing homelessness than white adults.28 32 However, inclusion of these ethnicities which are most prevalently affected by social inequalities are limited in research. Hidden homelessness may explain why these subgroups are limited in inclusion within this review. Hospices and hostels must be inclusive within their policies; it is essential that they adopt safe, stable, and welcoming environments to deliver palliative and end of life interventions and models of care to all demographics of homeless adults.
There are more gaps identified in our review. We found that healthcare needs were not always addressed; in one study, only 57.1% of terminally ill homeless patients admitted into a hospice received a palliative consult during their admission.23 Optimising medical comorbidities, through liaison with medical staff and external agencies (mainly primary care providers), was a significant challenge faced by hostel staff to provide total palliative symptom control.18
Furthermore, the ability to read and write was a crucial requirement of the homeless adults involved within two interventions,16 24 yet one-third of homeless adults have no educational qualifications.28 Both literacy and language barriers can make it difficult to engage with homeless adults directly within health and society. Application of structural interventions within health and social care policy, including access to advocates and translators, is essential to overcome these barriers.
We also recognised that the sustainability of some interventions was uncertain. Frequent staff turnover within hostels can affect the long-term impact of newly implemented educational programmes19; this risks losing knowledgeable staff and the initial successes achieved in improving palliative care delivery to hostel residents.19 We recommend that hostel and hospice staff participation in these educational programmes is made compulsory within their job specification. This will foster permanency of these interventions and models of care within practice; we found one instance of this which was very successful.18
This systematic review has strengths and limitations. We have advanced understanding on the interventions and models of care used for homeless adults needing palliative and end of life care, while also considering how well they work in achieving this. The nine included studies have been assessed to be of intermediate methodological quality overall and credible in their findings. However, the synthesis of this review demonstrates that there is a real paucity of research specifically relating to the availability of interventions and models of care used in the delivery of palliative and end of life care to homeless adults. A lack of quantitative data meant that we were unable to numerically quantify the effectiveness of identified palliative and end of life interventions and models of care. We synthesised data, mainly qualitative, from the perspectives of professionals involved in the provision of the palliative and end of life care to homeless adults. Rarely was the viewpoint directly obtained from homeless adults regarding their individual experiences of these interventions and models of care; this is a pertinent barrier which must be addressed in future research.
This paper followed guidance from the CRD12 for conducting a systematic review. Studies were limited to those published in the English language and the search strategy did not include bibliographic searching or grey literature; this may have prevented identification of unpublished documentation on interventions and models of care used within current health and social care practice. Only one author had undertaken the quality assessment of individual studies; this may have introduced bias into our methodology. Many studies were conducted in the USA, yet homelessness is a global finding; this limits the generalisability of our results within other cultural contexts. Most studies had small sample sizes which highlights the difficulty in recruiting homeless adults for participation in research.
Implications
Recent statistics document the rapid rise in the number of people experiencing homelessness2: it is imperative that we identify and implement effective palliative and end of life interventions and models of care into practice for homeless adults immediately. This will reduce health inequalities and promote equitable and accessible care to all, regardless of housing status.
All studies in this review addressed at least one of the critical components of homelessness according to the philosophy of Somerville.4 However, most failed to equally address and optimise them in their totality. The in-reach support model18 was the most valuable approach out of all the studies assessed, encompassing a holistic and inclusive approach to support the palliative and end of life needs of homeless adults within the hostel environment. It placed great emphasis on the optimisation of the medical, psychological, social and spiritual aspects of care for homeless adults, including addiction. Its methodological rigour was of high quality and, matched with the success of the model, we recommended that employment in wider health and social care practice is fulfilled to support the homeless population needing palliative and end of life care.
Gaps in the delivery of palliative and end of life care to homeless adults have been highlighted and we indicate where further direction is needed. We acknowledge that there is no specific definition of homelessness; however, perspectives from adults experiencing other types of homelessness, besides shelter-based living, must be of greater focus in future research. The impact of palliative and end of life interventions and models of care must also be sought from homeless women, older adults, LGBTQ+ and ethnic minorities who are underrepresented in the research.
Conclusion
There are key components that help optimise support for homeless adults needing palliative and end of life care: advocacy; multidisciplinary working; professional education; and care in the community. Most studies focused on the professionals involved in the care of homeless individuals; few studies included the voices of those experiencing homelessness. Future research must include the perspectives of those who are homeless, build on the components which we know work, and address sustainability of these interventions and models of care.
Data availability statement
All data relevant to the study are included in the article or uploaded as supplementary information. Not applicable.
Ethics statements
Patient consent for publication
Ethics approval
Not applicable.
Acknowledgments
FM is a UK National Institute for Health and Care Research (NIHR) Senior Investigator. The views expressed in this article are those of the author(s) and not necessarily those of the UK NIHR, or the Department of Health and Social Care.
References
Supplementary materials
Supplementary Data
This web only file has been produced by the BMJ Publishing Group from an electronic file supplied by the author(s) and has not been edited for content.
Footnotes
Contributors Study conception and design: MRC and FM. Screening and data extraction: MRC and FM. Analysis and interpretation of results: MRC and FM. Draft manuscript preparation: MRC. All authors reviewed the results and approved the final version of the manuscript. FM is the guarantor.
Funding The authors have not declared a specific grant for this research from any funding agency in the public, commercial or not-for-profit sectors.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
Author note Transparency declaration: The lead author (the manuscript’s guarantor) affirms that the manuscript is an honest, accurate and transparent account of the study being reported; that no important aspects of the study have been omitted; and that any discrepancies from the study as planned have been explained.
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