Background
Aims
Methods
Study eligibility criteria
Data collection
Data analysis
Coding the text
Developing descriptive themes
Generating analytical themes
Findings
Study characteristics
Reference | Author | Title | Setting | N | Participants | Data collection methods | Analytical approach | Main findings | Critical appraisal score |
---|---|---|---|---|---|---|---|---|---|
[39] | Tarzian, Neal & O’Neil (2005) | Attitudes, Experiences, and Beliefs Affecting End-of-Life Decision-Making Among Homeless Individuals | USA | 20 | Homeless people | Focus groups | Thematic analysis | Five main themes: 1) Valuing an individual’s wishes; 2) Acknowledging emotions 3) The primacy of religious beliefs and spiritual experience; 4) Seeking relationship-centred care 5) Reframing advance care planning. | 27/28 |
[36] | Song et al. (2007) | Dying on the streets: homeless persons’ concerns and desires about EoLC | USA | 53 | Homeless people | Focus groups | “Consensual qualitative research” 3 step inductive analytic process | Personal themes: 1) Experience of EoLC 2) Fears and uncertainties around lack of dignity and dying anonymously 3) Preferences wishes and 4) Advance care planning 5) Spirituality & religion 6) Veteran status Relational themes: 1) Relationships with known people/burden to others 2) Relationships with strangers 3) Communication tools Environmental factors 1) Barriers and facilitators to good EoLC 2) Participant suggested interventions | 32/34 |
[37] | Song et al. (2007) | Experiences with and attitudes toward death and dying among homeless persons | USA | 53 | Homeless people | Focus groups | “consensual qualitative research” 3 step inductive analytic process | Personal themes: 1) Early loss 2) Experience with death 3) Personal life threatening experiences 4) Fears and uncertainties 5) Coping strategies 6) Approach to risk, risk management and risky behaviours Relational themes: 1) Relationships with strangers | 33 |
[29] | Ko, Kwak & Nelson-Becker (2015) | What constitutes a good and bad death?: perspectives of homeless older adults | USA | 19 | Homeless people (aged 60+) | Semi structured individual interviews | Grounded theory | A good death 1) Dying peacefully 2) Not suffering 3) Experiencing spiritual connection 4) Making amends with significant others. A bad death 1) Experiencing death by accident or violence 2) Prolonging life with life supports 3) Becoming dependent while entering a dying trajectory 4) Dying alone | 28/29 |
[30] | Ko & Nelson-Becker (2014) | Does end-of-life decision making matter? Perspectives of older homeless adults | USA | 21 | Homeless people (aged 60+) | Semi structured individual interviews | Grounded theory | 1) EOL topic is uncomfortable 2) God plans EoLC 3) Physicians are preferred as decision makers 4) EoLC is not a priority 5) need for sensitivity | 28/30 |
[39] | Davis – Berhman (2016) | Serious Illness and End-of-Life Care in the Homeless: Examining a Service System and a Call for Action for Social Work | USA | 14 | Homeless people, hostel staff, outreach staff and health and social care professionals | Interviews | Grounded theory | Lack of services for serious, chronic and life threatening illness, Barriers to access to services Stigma, End-of-life care. | 24 |
[6] | Hakanson et al. (2015) | Providing palliative care in a Swedish support home for people who are homeless | Sweden | 12 | Hostel staff | Group and individual discussions | Interpretive description | 1) Conditional factors framing palliative care 2) Building trustful- family like relationships 3) Re-dignifying the person 4) Re-defining flexible and pragmatic care solutions | 33/34 |
[38] | Webb (2015) | When dying at home is not an option: Exploration of hostel staff views on palliative care for homeless people | UK | 7 | Hostel staff | Semi structured individual interviews | Four stage phenomenological method | 1) Understanding of palliative care 2) Working with limited medical information 3) Taking responsibility 4) Building rapport 5) Upholding residents dignity 6) Recognising physical deterioration 7) Managing environmental challenges 8) Role limitations and support needs of hostel staff | 26/28 |
[33] | McNeil & Guirguis-Younger (2011) | Illicit drug use as a challenge to the delivery of end-of-life care services to homeless persons who use illicit drugs: Perceptions of health and social care professionals | Canada | 50 | Canadian Health care professionals and hostel workers | Semi structured individual interviews | Grounded theory | Barriers to EoLC services: 1) Competing priorities 2) Lack of trust of healthcare providers 3) Exclusion from traditional end-of-life care settings Challenges to EoLC service delivery: 1) Non-disclosure of illicit drug use 2) Pain and symptom management 3) Interruptions in care as a result of illicit drug use policies 4) Lack of understanding of addictions and palliative medicine | |
[34] | McNeil, Guirguis Younger & Dilley (2012) | Recommendations for improving the end-of-life care system for homeless populations: A qualitative study of the views of Canadian health and social services professionals | Canada | 54 | Canadian health and social care professionals | Semi structured individual interviews | Grounded theory | Perceived barriers to the EoLC system: 1) Availability of end-of-life services and supports 2) operating policies that exclude homeless populations 3) lack of continuity of care Participant recommendations to improve the EoLC system. 1) Low threshold strategies 2) Partnering community agencies with EoL services 3) Strengthening training for EoLC professionals | 31 |
[35] | McNeil et al. (2012) | Harm reduction services as a point-of-entry to and source of end-of-life care and support for homeless and marginally housed persons who use alcohol and/or illicit drugs: a qualitative analysis | Canada | 54 | Canadian health and social care professionals | Semi structured individual interviews | Grounded theory | Harm reduction services as a point of entry to EoL services. 1) Increasing engagement with this population 2) Engaging with clients over time 3) Maintaining relationships with EoLC providers Harm reduction outreach services as a source of EoLC: 1) Providing EoLC for those unable to access services 2) Providing EoL support for clients who wished to die at home Residential harm reduction services as a source of EoLC. 1) Providing culturally competent care. 2) Providing EoLC in a home setting 3) Implications of EoLC for regular services | 28/30 |
[31] | Krakowsky et al. (2012) | Increasing access—A qualitative study of homelessness and palliative care in a major urban center | Canada | 7 | Registered nurses (n = 3) & outreach workers (n = 4) | Semi structured individual interviews | Thematic analysis | 1) Homeless persons’ access to palliative care compromised due to previous negative experiences of Homeless people with the health care system. 2) Staff training needed 3) Palliative services must respect the individual’s habits, friends, and preferred surroundings. 4) Diversity needed in vehicles used to deliver palliative care. | 19/21 |
[32] | Macwilliams et al. (2014) | Reaching out to Ray: delivering palliative care services to a homeless person in Melbourne, Australia | Australia | 6 | Managers from hospitals, palliative care services & residential shelters. | Semi structured individual interviews | Thematic analysis | Key concerns from health care providers 1) Late stage presentation and multiple admissions 2) Safe use of drugs 3) Non compliance 4) Staff stress | 19/21 |
Participants
Results of data synthesis
Codes | Challenges to the provision of palliative and end of life care | Suggestions for the provision of palliative and end of life care |
---|---|---|
Challenges related to the chaotic lifestyles associated with being homeless | ||
Death in the day to day context of homelessness | Previous negative experiences of death and fear of death | Peer advocates/community services to facilitate attendance & engagement |
Unconventional living arrangements & social isolation | Training for staff around addiction issues and associated complications | |
Attitudes to health care; substance misuse & competing priorities | Previous negative experiences or perceptions of health care & mistrust of professionals | |
Poor engagement with services | ||
Substance and alcohol misuse | ||
Complex care needs & competing priorities | ||
Trends in accessing health care and poor adherence to treatment | ||
Communicating about death, dying and advance care planning | ||
Challenges to the delivery of end of life care and specialized palliative care within a hostel | ||
The hostel environment | Limited resources | Advocacy |
Difficulty accessing support and specialist services | Greater collaboration with medical services – MDT discussion | |
Limited medical information | Greater in hostel support from medical and social services | |
Practical and emotional burdens for staff | Limitations of staff roles | Increased training & specialised services |
Emotional burden for staff | ||
Challenges to the provision of palliative care to homeless persons relating to mainstream health care systems | ||
Inflexibility of the health care service and limited planning | Inflexible services and systems | Flexibility in care model & locations |
Strict rules and regulations | Harm minimisation strategies | |
Lack of specialised services | Linking with community services | |
Limited planning, especially at discharge | Training for health care professionals | |
Health care professionals’attitudes and inexperience in supporting homeless people | Attitudes of professionals | Person centred care |
Emotional & practical burdens | Increased training & specialised services |
The chaotic lifestyles sometimes associated with being homeless
“…Bad death is being lonely…no friends around you when you’re passing away. Well, death is never really good but…(laughs)…at least it’d be better with … friends around…you know someone to hold your hand and whatever…” – Homeless person [32]Yet meeting these wishes may be more complicated for people who are homeless, who often felt abandoned, alone and uncared for:“End of life. What end of life are you talking about? … I’m on the street and nobody cares about me” – Homeless person [33]
“It makes a difference when you’re homeless and you’re dying…You’re here by yourself…” Homeless person [40]
“I’d tell them how much I love them … tell them if I did … forgive me if I did something wrong … Express my feelings and say I love them.. . I want to die comfortably … surrounded by my family…” – Homeless person [32]However, this sentiment was not shared by all homeless people or their families:“My living Will says my family will have no say or discussion of what is done. Basically, they don’t know me, so why should they have a say in whether I live or not.”- Homeless person [39].“We got in touch with relatives to say that…it’s close now [death]. And the relative just says we should throw him on the rubbish pile” – Hostel staff [6]
Death in the day to day context of homelessness
“I’m looking around, taking account of my surroundings, making sure I don’t get jumped” – Homeless person [40]These experiences influenced homeless people’s conceptualisations of themselves, others and also society [6]:“I think when you’re homeless and you’re out on the street so long, you’re surrounded by grief and death and a lot of stuff. It makes you cold. It makes you unfeeling towards people.”- Homeless person [40]
“Everybody wants to live you know ….I find if I dwell on it, it gets depressing … I get depressed enough you know” – Homeless person [33]
“The people that I’ve talked to that live on the street.....they’re just looking to get their food and stay warm…get a shower…They’re not really considering much beyond that”- Homeless person [33]
Attitudes to health care; mistrust and competing priorities
“There is a lot of shame….low self-esteem, horrific histories of trauma and abuse, mistrust of caregivers. They’ve lived very independent lives. At the end of life, when their needs increase, it’s distressing to them because they need to trust when they’ve never learned to trust. They bring with them experiences that are negative from healthcare providers. It’s a challenge” - Health care professional [36]
“People who are living on the street…it’s much harder to access them. They don’t come to us and they don’t go anywhere for help until they’re so sick that they’re picked up by an ambulance” – Health care professionalThese patterns of health care usage challenged the implementation of traditional models and methods of palliative care delivery [9]:“Those folks die younger and actually die suddenly. The population that I serve often doesn’t make use of [palliative care] facilities. Unfortunately, they die because they have had such poor access they drop dead at the age of 40. I’ve lost two people in their early 50s to sudden death” – Health care professional [36].
“If you are worried about where your next fix is going to come from or where your next meal is going to come from and you don’t know where you are going to sleep that night, healthcare falls to the bottom of the list” – Health care professional [36]
“The people who are addicted to drugs…. we don’t know what they’re going to be like. We ask them not to come back until they’re straight.” – Health care professional [36]
Challenges to the delivery of palliative care within a hostel
‘The resources thing is—are we really an appropriate environment? Do we have rooms that are equipped for people who are reaching the end of their life?” - Hostel staff [41]
“We’ll try to do anything to keep them here because they are family. It’s like they want to die in their home” – Nurse attached to hostel [38]“Certainly, we wouldn’t be able to provide the same level of care that they might receive in the hospital but we might still be more desirable—passing away at home because the program environment had indeed become their home and their community” – Hostel staff [38]
“It got to the point that he had problems going to the bathroom…[hostel] Staff had to basically spend twenty-four hours with this individual. That is when we realized we had nine other residents. Staff were saying we really want to support this client but it’s impossible…. At that point, we said, ‘Okay, we really need to make a referral”- Harm reduction specialist [38]
“We kind of got caught off guard because our first client that got sick was quite young and experienced profound liver failure, extremely fast. He had to go to the hospital. He didn’t want to but he had to. We didn’t have any nursing support in place. We didn’t have equipment. We didn’t have the drugs. He had to go to the hospital to die” – Hostel staff [38]
“You have to build a relationship with these people before they will say “I’ve got leukaemia and I’ve got 6 months left.” – Hostel staff [41]
Practical and emotional burdens for hostel staff
“At the end of the day I’m not a personal carer. My job is not personal care” – Hostel staff [41]“It was really hard trying to get someone on the side with us … It was so negative the responses [from mainstream health services] we were getting.” – Hostel staff [41].
“That weekend when I spent 17 hours at the hospital it was in my own time”- Hostel staff [11]
“I think in this line of work, you have to be very resilient … some of the things you are going to come across… and some of the stuff you deal with is going to take you to some very dark places” – Hostel staff [41]
Challenges relating to mainstream health care systems
Inflexibility of health care service and limited planning
“The health care system has failed that population…When trying to access care in the mainstream, they experience discrimination and disrespect and poor care”- Health care professional [37]
“People died outside on the streets because [end-of-life care providers] couldn’t provide that”- Emergency shelter director [37]
“The clients are still on drugs. They go out, pick up some crack cocaine and they’re using it. In main stream settings, you’re not going to get that. That’s not going to happen. Traditional hospices are very rigid. There’s no flexibility around behaviours. If someone gets angry or says something wrong, they’re asked to leave” – Health care professional [36]
“The hospital social workers will many times release the people back here to the shelter that are completely inappropriate to be in a shelter. We are not a nursing care facility.” – Hostel staff [9]
Health care professionals’ attitudes and inexperience
“When you’re trained in your profession, you’re trained in a certain way. If harm reduction wasn’t in your training, you’re not going to know anything about it. How can you expect somebody to embrace that with open arms if they know nothing about it?” - Harm Reduction Specialist [37]
“I got out [of the hospital] and I’m walking, really sick, carrying my bags, and there was nowhere really to go…the doctors made it clear that my life was not their problem…” - Homeless person [40]
“A lot of people have the idea that…[homeless people] are drug addicts and have mental health issues. That’s the case for some, but we’re seeing a different face of homeless now. We have patients in the clinic who have doctoral degrees that lost their jobs and they just can’t find work.– Social worker [9]
Improving palliative and end of life care for homeless people– suggestions derived from studies
Building trust and relationships
“You have to earn it. You have to show that you want to do something for them [homeless people]. You have to be respectful and treat people with the same kind of treatment that you would want. It's often word of mouth. One client will say, “Listen, you can trust her” - Harm reduction outreach worker [38]
“It would be helpful to have like individuals who serve as bridges between the [health and social services] systems…. I think that people are the key to building bridges” – Health care professional [37]
Collaboration between professionals in the care and support of homeless people
“To avoid unnecessary disrespect and bad treatment of the patients, staff also went to great lengths to inform workers in other departments about these matters. For example, staff would talk with the X-ray department when these patients were scheduled to come there” – Hostel staff [6]
“Three or four of these clients since I’ve started working here have been recognized by the workers at [harm reduction program]. They know to call us and that we’ll follow through with helping with appointments and referrals to the [EoLC]” – Health care professional [38]
Flexibility within health services
“We agreed to walk outside on the street with these people. [Harm reduction] is part of walking down the road, so that they don’t go out and drink Listerine” - Emergency shelter director [37].
“You respect the wishes of the one dying, That’s the main thing” − Homeless person [42]
Training and support for professionals working with homeless people
“The unwelcomeness from the medical staff is a big issue. That’s the major one that really needs to be addressed and I feel…there needs to be a lot of education… to overcome this barrier. I understand there are issues of hygiene and behavioural problems but I think … we could tear down a lot of these barriers” - Social worker [37]
“Have a doctor, an intern, or…a medical student come and work at a shelter for a week, just to see how it is. To get woke up at 6:00 in the morning and booted out… getting a cold bowl of cereal… for breakfast, and just shadowing somebody that… is homeless… if just to say ‘I know this guy; he’s homeless and this needs to be taken care of right away… not making him wait. Then they will have an ideal of what it’s like being homeless” - Homeless person [40].