1. Delivering Palliative Care in a Hostel Setting
Catherine Hedges

2. Palliative Care at St Mungo’s
The palliative care coordinator supports clients and staff across the organisation
We provide a bed and support to more than 2,700 people a night who are either homeless or at risk
The befriender service support clients who are at risk of dying, or who are grieving and in need of bereavement support. They also support St Mungo’s staff and teams where a client has passed away
We support men and women through more than 300 projects
We work across London and the south of England

3. Dying as a homeless person
Deaths are often sudden, untimely and undignified, with access to palliative care being very unusual
(Crisis report 2012)
Thomas B. Homelessness Kills: An analysis of the mortality of homeless people in early twenty-first century England. London Crisis; 2012.

4. Caring for clients in a hostel setting
The Challenges
Caring for clients in a hostel setting
Ask group what challenges they face

5. The Challenges
Hostel Setting
Knowledge
Complex Clients
The Topic

6. Three tools for planning ahead…
The Hostel Environment
Hostel not equipped or set up with the facilities
Cannot store or administer medication
Impact on other clients & safeguarding concerns
Chaotic nature of hostel setting
Do not provide personal or domestic care
Check out Sample Advance State

7. Knowledge Lack of confidence Unaware of the impact on staff
Lack of specialist knowledge
The rapid changes of the client’s condition

8. Complex needs of the client
Tri-morbidity
Mental health
45% had mental health diagnosis
Drug and pain management
Negative perceptions from professionals
Physical health
Substance use
60% history of substance misuse
Denial of prognosis

9. Interacting with the topic
Having conversations about deteriorating health
Complexity of need
Removing hope
Saying the wrong thing
Dealing with difficult questions
Our own feelings about death
Uncertain illness trajectories
Non-engagement
Each one of these factors is a potential stumbling block. This is the reality. It is also the case that we are not there to solve every problem. Don’t let these difficulties stop us from having meaningful conversations with clients and finding out what is important to them.
Client reaction
Fearful of damaging your relationship
Not feeling qualified
Lack of options

10. Counteracting the Challenges
Ask group how they have worked against the challenges

11. Working through the challenges
Partnership working
Good Communication
Parallel Planning
Start early
Training as well but in the moment it might be available

12. High Risk Client Review MeetingGP
Hospital Palliative care nurse
Complex Needs Worker
Hostel Manager
Palliative Care Coordinator
Drug and Alcohol rep
Hospice Rep
Information sharing
Communication
Coordinated Care planning

13. Parallel Planning Aims Examples Encouraging goals and interests
Hoping for the best
Encouraging goals and interests
Exploring hopes for the future
Supporting to attend care assessment
Planning for the worst
If there’s another hospital admission, what should we do?
Family reconnection?
Does he have questions and would like to speak to his GP?

14. Planning ahead for end of life.
Making sure the clients wishes are respected
Organ donation
Befriender Service
Making a will/sorting out finances
Advance Statement of Wishes
Emotional/
Psychological needs
Funeral wishes
Decisions about their death
Family Reconnection
Place of Care
Refusing treatment
(ADRTs)
Friends/ Community
Preferred place of death

15. Caring for clients in a hostel
Case Study
Caring for clients in a hostel
Small group discussion 15 minutes

16. Laura
Aged 36, heavy substance user (crack & heroin – smoked) since a young age with a history of sex working
Dependence on butane gas, will use 10+ a day
History of trauma (rape, domestic violence) and mental health (self-harm, depression), estranged from family
Spent many years sleeping rough, and was placed in a hostel after an serious sexual assault incident
Multiple admissions to hospital, continuously self-discharges with multiple serious health issues (Hep C, HIV, increased risk of infection)
Laura’s care needs are increasing (frail, extra support from staff, episodes of incontinence, not eating unless food is provided by staff), will disappear for multiple days
Laura was on a methadone script, but has since disengaged with the local services

17. Working through the challenges
Consider
The Challenges
What challenges can you identify working with Laura?
Working through the challenges
What would put in place to support Laura, keeping parallel planning in mind.
Use the Planning care home tool if it is helpful.

18. Planning care at home tool
MDT considerations
Practical considerations
(H&S, mobility, equipment)
Domestic & Personal Care
(meals, hygiene)
Medical
(scripts, storage, nurse access etc.)
Impact on other clients
Staff support
Laura
PAIRED ACTIVITY – 8 mins and 10 mins feedback on flipchart
Remind group to draw on own experiences and think creatively about ideas.

19. MDT considerations
Practical considerations
(H&S, mobility, equipment)
Domestic & Personal Care
(meals, hygiene)
Medical
(scripts, storage, nurse access etc.)
Impact on other clients
Staff support
Laura
Regular review of risk assessments, ground floor room/lift, fire evacuation plan, transport/arrangements for appointments
Full package of care, equipment and resources (disposable bedsheets), community support, entitlement to additional benefits i.e. DS1500
Lockable cabinet in client’s room, pharmacy daily pickup/drop off, key safe installed
Client meetings, emotional support available, risk assessments reviewed
Regular MDTs, in reach support (service mapping), emotional support
Emotional support, family reconnection, spiritual needs, wishes and preferences for care
Prompt discussion from group, add to areas not included on slide.

20. Adam
Aged 53, historical substance user (crack & heroin – IV) since being in the army
Detained in a immigration detention centre, but won case for right to remain
History of PTSD
Spent many years sleeping rough, and was placed in a hostel after being discharged to streets upon receiving terminal diagnosis of pancreatic cancer
Adam has a dog who has been his companion on the streets for over a year
Prognosis of 6 months to live
Adam has additional care needs (stoma, mobility issues)
Does not want to die in hospital
Has not seen his family in 10+ years

21. Who can support us GP Religious / Cultural supports
First port of call for medical issues
Religious / Cultural supports
Individual to each person – representative can visit resident or access place of worship
Continuing health care (CHC)
NHS Package of care for end of life patients cared for outside of hospital
District Nurse
Nurse that provides care at home, usually linked to specific surgery
Community palliative care nurse/team
Specialist professionals who work alongside GP and medical team in the community
Marie Curie / Macmillan
Provides nursing care at home and overnight
Hospice
Provides care (medical, psychological, therapeutic) and respite for palliative patients
Social worker
Provide care assessments, advice and information to address needs of individual. Can support patient with entitlement for DS 1500 payments
Psychological / emotional support
Available through GP or external agencies
Pharmacy Dispenses medications. Some pharmacies can agree to drop off service if patient bed bound
Drug and Alcohol services
Provides advice and support around harm minimisation, abstinence, detox and rehab
Occupational therapist
Ensures patient has adequate support to carry out everyday activities
Mental Health advocate
Ensures the needs of patients are met by working within the Mental Health Act framework
Health advocate
Promotes access to health services
Family / friends
Salvation Army
Provides advice and support in reuniting families

22. Comments / Action points
End of Life Care – project checklist
Professionals involved in care
Professionals involved in care
(Name / role)
Contact details
Name
D.O.B
Project
GP details
Next of Kin
Diagnosis/NHS number
To do
Comments / Action points
Do you have letter of consent to discuss clients care with others?
Has a referral been made to palliative care? If not, would the client benefit? Who can you approach to talk to about this (e.g. GP, hospital consultant, palliative care team).
When might be a good time to begin to explore clients wishes and concerns with them? Who else can support you with this?
Have all professionals involved in client’s care been identified? Who are they?
Have other professionals who could provide support in the future been identified? Who are they?
Is the project considered an appropriate place of care?. If not, what needs to be done to overcome obstacles. Who else might support you in meeting them?
Has a case review been arranged? If not, is this a role you or the project can take on? Who can you invite?
Have a client’s preferences and wishes been identified, including their preferred place of care? If no, would they like further information? Who can you contact for further advice? (e.g. GP, specialist palliative care team)
Have important relationship been identified (using Eco map) and other client’s briefed (with client’s consent)
Does the client want their next of kin to be contacted?
Has an action plan identifying the client’s support needs been initiated? If not, what actions need to be taken?
Is client entitled to additional benefits i.e. DS1500 payment

23. Supporting clients: Do’s & Don’t’s
Familiarise yourself with, and talk to clients about, the nature of loss and grief reactions in bereavement or when facing a terminal illness (e.g. toolkit/CRUSE, Us)
Encourage clients to express their feelings and not be afraid to express your own where appropriate
Involve clients in funeral arrangements and celebrations
Be available to listen or to help when you can
Continue to affirm dying as a normal process
For bereavement, continue to acknowledge loss months after a death
Don’t……
… feel that you are there to resolve client’s grief
… let your own sense of helplessness keep you from reaching out
… tell them what they should feel or do
… change the subject when they bring up their illness or loss
… assume that just because months have gone by that everything is ok

24. Questions to consider PHYSICAL
What do you understand about your current health situation?
What are your main concerns … about seeing the doctor?
How are you feeling about …your recent hospital admission?
Tell me about what you would like to see happen next?
This may not be your worry or concern right now, just mine, and it’s important I share it with you …
SUBSTANCE USE
What are your thoughts around reducing your drinking/substance use?
Say you struggled to stop drinking, what do you think might happen in the next 3/6/9 months?
What are the likely benefits of going 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?
RELATIONSHIPS
Tell me about 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 at some stage?
How can we support your …partner, friend, mother?
TREATMENT AND CARE
What extra support do you think would be helpful to you and us (e.g. nursing or personal care)?
If you became very ill, where would you wish 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?
What would be helpful for others to know about you when … talking about your care?
EMOTIONAL
How are you feeling about your recent … diagnosis/hospital admission/poor health?
It may be just me, but I’ve noticed you seem a bit withdrawn lately, what can I help with?
Tell me more about what is worrying you?
What do you feel would help right now?
HOPES FOR FUTURE
What is most important to you at the moment?
What are the things you most want to do?
Would you like support to reconnect with family?
Tell me the ways I/we can best support your goals and aspirations (short, medium, long term)
SOCIAL / PRACTICAL ISSUES
How can we make things more comfortable for you?
We notice you are having trouble attending appointments, what can we do to help?
Have you thought about making a will or letter of wishes?
Have you ever thought about how you’d like to be remembered?

25. Useful tools Palliative care co-ordinator at St Mungo’s
Homeless Palliative Care Toolkit
Hospice UK
Marie Curie
Compassion in Dying
Compassion in Dying have resources to help explain and write an advance care plan.
Dying Matters
Macmillan Learnzone
Free learning resources, online courses, and professional development tools from Macmillan Cancer Support