1. Improving Palliative Care For People Experiencing Homelessness
Spotlight on Deaths
Improving Palliative Care For People Experiencing Homelessness
Dr Caroline Shulman
GP in homeless and Inclusion Health
Honorary senior Lecturer UCL &
Pathway Research Fellow
Mary Kneafsey
Assistant Director Client Services
Providence Row Housing association
@ProvidenceRowHA
@carolineshulman

2. What we’ll be covering Background on homelessness and health
Research findings: challenges and complexities around the support received by homeless people with advanced ill health
Sharing a resource we have developed to address the training and support needs of front-line staff
Pilot project to explore impact of in-reach by palliative care staff into hostels in improving access to holistic palliative care

3. Homelessness and Health Complex needs & Tri-morbidity
Substance Misuse
Mental Health
> 60% history of substance misuse
70% reach criteria for personality disorder
Physical Health
>80% at least 1 health problem,
20% have more than 3 health problems
St Mungos (2010), Homelessness, it makes you sick, Homeless Link Research (n = 700)
Suzanne Fitzpatrick et al (2010) Census survey multiple exclusion homelessness in the UK (n= 1268)

4. Complex needs and Access to Health Care
Barriers to accessing health care services can include:
Impact of these barriers:
Health not a priority
Fear & distrust
Feel unwelcome or not listened to
Difficulty registering with GP
Inflexibility in appointments – discharged for non attendance
Fear of withdrawing
People seek treatment when problems reach advanced stage
High A&E attendance
High rate of self discharge
High rate of unsafe discharge

5. Homeless people die young
Standardised all cause mortality rate
Average age of death in the UK for single homeless people:
44 for men (84%)
42 for women (16%)
Office of National Statistics
597 deaths in 2017.
Morbidity and mortality in homeless individuals, prisoners, sex workers, and individuals with substance use disorders in high-income countries: systematic review and meta-analysis. R Aldridge, A Story, S Hwang et al, The Lancet Nov 2017

6. Dying as a homeless person
Deaths are often sudden, untimely and undignified, with access to palliative care being very unusual
(Crisis report 2012)
How do we improve palliative care for homeless people?

7. What is Palliative Care?
is an holistic multidisciplinary approach in the care and support of people with a life limiting condition and advanced ill health
aims to help people have a good quality of life
can occur alongside active treatment

8. How can we improve palliative care for homeless people?
Gemma
28 years old
Street homeless for many years, now living in hostel
Decompensated liver disease
Multiple hospital attendances & admissions
Frequently self discharging
Died in hostel one weekend following collapse
How can we improve palliative care for homeless people?

9. Hostel and outreach staff
Our research
Hostel and outreach staff
n=40
Health & social care
professionals
n=49
Currently homeless people
n=28
Formerly homeless people
n=10
Shulman C, Hudson B F, Low J, Hewett N et al (2018) End-of-life care for homeless people: a qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine 32(1):
Hudson BF, Shulman C, Low J, et al. Challenges to discussing palliative care with people experiencing homelessness: a qualitative study. BMJ Open 2017;7:e doi: / bmjopen
Shulman C, Hudson B F, Low J, Hewett N et al (2018) End-of-life care for homeless people: a qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine 32(1):

10. Palliative care & homelessness
“I think that people are just resistant to the concept of them [homeless people] being palliative patients. You are dealing with people who are still relatively young…it's difficult”.
Specialist GP

11. Uncertainty & complexity
…around who is palliative due to:
- disease trajectory  - substance misuse / complex behaviour - access to and utilisation of health care
Functional state
death
Months/years
Organ failure eg liver disease
Many deaths are sudden, but not unexpected

12. “I think everyone knew she was very, very sick
“I think everyone knew she was very, very sick. But… I sort of have an informal list of people…a “this isn’t good list”. But actually, then a third of them probably move up to my “this is really bad” list. But….how do you know out of those….?”
In-reach nurse
Some of these patients, I’d fast track them every time they come in. But the reality is that they go on and pick up again. And obviously you can only do that so many times…
Hospital palliative care specialist
This uncertainty results in people not being considered for referral to palliative care services

13. Where is Palliative Care being delivered?
Lack of options
Many people with very complex needs, at risk of dying, are in hostels or temporary accommodation with inadequate support & care.

14. Gaps in services: challenges for traditional models of care
MENTAL HEALTH DIFFICULTIES, COMPLEX BEHAVIOUR AND SUBSTANCE MISUSE & YOUNG AGE:
Often deemed inappropriate for care homes, sheltered accommodation or hospice
Many homeless people are “young olds” – evidence of accelerated aging with conditions usually experienced by people who are much older
Cognitive impairment at a young age – from head injuries and sustained alcohol abuse
Results in difficulty accommodating choice

15. Lack of options for place of care – lack of support
“At least three times a shift we check she’s okay. It’s hard… particularly on weekends and nights when we only have two staff… it’s a big hostel [60 residents]… this isn’t an appropriate environment, but it’s the best we have” Hostel staff
“…In the past we have tried to put people into hospice … one person [in his 40’s] we did get in there. And he was asked to leave because of his behaviour when drunk. And in the end he died in the hostel, he had cancer” Hostel staff

16. Challenges for hostels as a place of care
Hostels are designed to provide temporary accommodation
Their remit is to support people into recovery
Hostels have been left to support people with increasing complexity at a young age, with limited resources
Difficulty accessing social services & adequate medical support including palliative care
Lack of training and confidence in supporting people with palliative care needs

17. Barriers to discussions about Advance Care Planning
Uncertainty of prognosis
Lack of options to offer
Concern about fragility & removing hope
Lack of confidence
Denial - from all sides

18. But what if the hostel is seen as their home?
It was his desire to remain here, he wanted to remain here, and …for me personally…I don’t think we should go against that….Hostel staff
I’ve had it when people end up in hospital and you know that’s the last place they want to be …Specialist homelessness nurse

19. Overcoming the challenges
©STIK

20. Our research – recommendations
1. A Shift in Focus:
(parallel planning)
End of life care
Advanced ill health

21. Our research – recommendations
1. A Shift in Focus:
(parallel planning) …as a way of working with Uncertainty
End of life care
Advanced ill health
Supporting decisions, while keeping options open
Identify people whose health is a concern
Person-centred exploration of insights into illness, wishes and choices, not just giving warnings– but how to live well
Respecting choices even if we feel they are unwise
Early & repeated conversations
Not just issues for the very end of life, but about living well.

22. Our research – recommendations
1. A Shift in Focus:
(parallel planning)
End of life care
Advanced ill health
2. Choice with appropriate places of care :
Explore other models such as a facility that
Understands the needs of people who are homeless
Acts as a step up from hostel/street & a step down from hospital
Could provide adequate 24 hour support
Offers respite AND/OR a comfortable place to live until the end of life

23. Our research – recommendations
1. A Shift in Focus:
(parallel planning)
End of life care
Advanced ill health
2. Choice with appropriate places of care :
Explore other models such as a facility that
Understands the needs of people who are homeless
Acts as a step up from hostel/street & a step down from hospital
Could provide adequate 24 hour support
Offers respite AND/OR a comfortable place to live until the end of life
3. More support for hostels:
In the meantime….
More in-reach into hostels
Greater multi agency working addressing needs of residents of concern)
More training and support for all groups

24. Homeless palliative care toolkit
Identifying Clients
Assessing Needs
Sharing Care
Communication
Bereavement
Practicalities after a death
Self Care

25. Person centred care - Support and concerns mapping
Physical
Hopes for the future
Emotional
Place patient in centre
Locate important issues to address
Colour lines according to priority
Patient / client
Treatment
and Care
Social /
Practical
High Priority
Low Priority
Difficult
Substance Use
Relationships
Supporting front line staff to start from where their client is – work alongside them

26. Questions to consider PHYSICAL
Do you have thoughts about where things are going with your illness?
What do you understand about your current health situation?
What are your main concerns?
What would you like to see happen next?
SUBSTANCE USE
Do you wish to reduce your drinking/substance use?
Say you struggled to stop drinking, what do you think might happen in the next 3/6/9 months?
Would you like to go to detox/rehab?
Can we make a plan to meet again in a few days/weeks/months, and see where you’re at with everything then?
TREATMENT AND CARE
Do you feel you need any extra support with your care (nursing or personal care)?
Are you having any difficulties getting around?
If you became very ill, where would you want to be cared for? Here at the hostel, in a hospital or a hospice?
Would you like to talk to your GP/doctor about what treatments you want/do not want?
EMOTIONAL
How are you feeling about your recent diagnosis/hospital admission/poor health?
I’ve noticed you seem a bit withdrawn lately, can I help with anything?
Would you like to tell me about your concerns/worries?
What do you feel would help right now?
HOPES FOR FUTURE
What is most important to you at the moment?
Are there things you have always wanted to do?
Would you like support to reconnect with family?
SOCIAL / PRACTICAL ISSUES
Have you been having trouble attending appointments, could we help with this?
Have you thought about making a will or letter of wishes?
What do you want to see happen with your possessions/pets after you die?
Have you ever thought about how you’d like to be remembered?
RELATIONSHIPS
Who are the people you trust the most?
Who would you like to be there if you got ill (again)?
Who would you NOT want to be there if you got ill?
Would you like to get in touch with family?

27. Case Review Prompt
Client — concerns / wishes / desired outcomes from review (if discussed)
Hostel — concerns / needs / desired outcomes from review
Actions — Outcomes from the case review
Physical health
Current health status
Notable changes
Current / Future health needs
Engagement with health services
Mental / Emotional Well-Being
Current mental health issues
Psychological difficulties
Insight / impact of illness
Ability to express feelings
Substance Use
Current usage (if any)
Engagement with addiction services
Current / Future support needs

28. embedding training and support into hostels
New Pilot Project:
embedding training and support into hostels
Twinning palliative care teams with hostels/day centres
Identify interested palliative care teams and link them with hostels
Hold stakeholder event within the Borough (inviting people from health, mental health, homelessness and housing, social care, addiction services)
Train palliative care professionals to be homelessness champions, to deliver training and support for hostel staff – as part of their job plan (1 day per month)
Champions provide support to the hostel teams with training, identifying residents of concern, advice and facilitating care plan development with residents being linked into appropriate services
Aim is to integrate multidisciplinary working into routine practice

29. High Risk Clients Review Meeting
Aiming for in-reach and multiagency approach to support clients of concern
High Risk Clients Review Meeting GP
Surgery nurse
Hostel key worker
Hostel Manager
Palliative Care Coordinator
Drug and Alcohol rep
Hospice Rep
Information sharing
Coordinated Care planning
Parallel planning

30. Current Projects

31. Publications
Faculty of Homeless and inclusion health: Join for free – Standards for providers and commissioners, publications, network, local meetings:
Training toolkit:
Hudson BF, Flemming K, Shulman C, Candy B. Challenges to access and provision of palliative care for people who are homeless: a systematic review of qualitative research. BMC Palliative Care. 2016;15(1):96.
Shulman C, Hudson BF, Low J, Hewett N, Daley J, Kennedy P, et al. End-of-life care for homeless people: A qualitative analysis exploring the challenges to access and provision of palliative care. Palliative Medicine. 2017;0(0):
Hudson BF, Shulman C, Low J, Hewett N, Daley J, Kennedy P, et al. (2017) Challenges to discussing palliative care with people experiencing homelessness: a qualitative study. BMJ Open 2017;7:e doi: /bmjopen
Shulman, C., Hudson, B.F, Brophy, N., Kennedy, N., & Stone, P (2018). Evaluation of training on palliative care for staff working within a homeless. Nurse Education Today Sep 29;71: doi: /j.nedt
NHS England podcast
NHS England End of life care Webinar:
Palliative care toolkit for people experiencing homelessness
CQC & Faculty of Homeless and Inclusion Health (2017). A Second Class Ending. Exploring the barriers and championing outstanding end of life care for people who are homeless