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Delivering Palliative Care in a Hostel Setting
Catherine Hedges
Palliative Care at St Mungo’s
We support men and women through more than 300 projects
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
The palliative care
coordinator supports clients
and staff across the
organisation
We work across London and
the south of England
We provide a bed and
support to more than
2,700 people a night who
are either homeless or at
risk
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
The Challenges
Caring for clients in a hostel
setting
The Challenges
Knowledge The Topic Hostel
Setting Complex
Clients
Three tools for planning ahead…
Hostel not equipped or set up with the facilities
Cannot store or
administer medication
Impact on other
clients & safeguardi
ng concerns
Chaotic nature of
hostel setting
Do not provide personal
or domestic
care
Check out Sample Advance State
The Hostel Environment
7Knowledge
Unaware of the impact
on staff
The rapid
changes of the
client’s condition
Lack of specialist
knowledge
Lack of confidence
8Complex needs of the client
Mental health
45% had mental health
diagnosis
Physical health
Substance use 60% history of substance
misuse
Drug and pain management
Negative perceptions from
professionals
Denial of prognosis
Tri-morbidity
9
Having conversations about deteriorating health
Interacting with the topic
Dealing with
difficult questions
Our own feelings
about death
Non-
engagement
Saying the
wrong thing
Lack of
options
Client
reactionFearful of damaging
your relationship
Uncertain illness
trajectories
Complexity
of need
Not feeling
qualified
Removing hope
10
Counteracting
the
Challenges
Working through the challenges
Good
Communication Start early Partnership
working Parallel
Planning
High Risk Client Review
Meeting
GPHospital Palliative
care nurse
Complex Needs Worker
Hostel Manager
Palliative Care
Coordinator
Drug and Alcohol rep
Hospice Rep
Information
sharing
Coordinated Care planning
Communication
13
Parallel Planning
Aims Examples
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
Making sure the clients wishes are respected
Planning ahead for end of life.
Emotional/
Psychological
needsFuneral wishes
Decisions
about their
death
Advance
Statement of
Wishes
Preferred
place of
death
Place of
CareRefusing treatment
(ADRTs)
Family
Reconnection
Organ
donation
Friends/
Community
Making a
will/sorting out
finances
Befriender Service
15
Case Study
Caring for clients in a hostel
16
Consider
What challenges can you identify working
with Laura?
What would put in place to
support Laura, keeping parallel
planning in mind.
Use the Planning care home tool
if it is helpful.
The Challenges
Working through the challenges
17
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
Planning care at home tool
18
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
GPFirst port of call for medical issues
Religious / Cultural supportsIndividual 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/teamSpecialist professionals who work alongside GP and medical team in the community
Marie Curie / MacmillanProvides nursing care at home and overnight
HospiceProvides 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 supportAvailable through GP or external agencies
PharmacyDispenses medications. Some pharmacies can agree to drop off service if patient bed
bound
Drug and Alcohol servicesProvides advice and support around harm minimisation, abstinence, detox and rehab
Occupational therapist Ensures patient has adequate support to carry out everyday activities
Mental Health advocateEnsures the needs of patients are met by working within the Mental Health Act
framework
Health advocatePromotes access to health services
Family / friends Salvation ArmyProvides advice and support in reuniting families
Who can support us
Name D.O.B Project
GP details Next of Kin Diagnosis/NHS
number
Professionals involved in care
(Name / role)
Contact details
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
End of Life Care – project checklistProfessionals involved in care
Supporting clients: Do’s & Don’t’sDo……
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
22Questions 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?
Useful tools
Palliative care co-ordinator at St Mungo’s
Homeless Palliative Care Toolkit
www.homelesspalliativecare.com
Hospice UK
www.hospiceuk.org
Marie Curie
www.mariecurie.org.uk
Compassion in Dying
Compassion in Dying have resources to
help explain and write an advance care
plan.
www.compassionindying.org.uk
Dying Matters
www.dyingmatters.org
Macmillan Learnzone
Free learning resources, online courses, and
professional development tools from Macmillan
Cancer Support
www.learnzone.org.uk
