Psychosocial Needs of
Families of Palliative Care
Patients
Aim of the Session
To provide insight into the psychosocial
issues which may affect families of
patients receiving palliative care
Learning Outcomes
• By the end of this session the participants
will be able to;
• Explain why it is important to assess
families’ needs
• Describe the common issues which affect
families
• Outline where support can be accessed
Palliative care has been defined by the WHO
as “the active total care of patients whose
disease is not amenable to treatment.
Control of pain, of other symptoms and of
psychological, social and spiritual
problems is paramount as is the best
quality of life for patients and their
families”
Family? Always relatives ?
Always human?!!! Woof!
‘Whilst some families will be drawn closer
together by the stress they are facing ,
making relationships stronger than ever, in
other families the emotionally charged
situation of a terminal illness can cause
conflicts to surface, adding to the family’s
general distress’
(McIntyre, 1996, p204)
Families
“ The family can be a source of strong
support or chronic stress, it can nurture or
destroy, it can promote wellness or
illness…..effective assessment, care
planning and care delivery rests on the
recognition that the family is the client too”
( Epilopoulous,1984)
Difficult times for families
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The varying ability of the patient and family to
adjust to transitions in disease is heightened at
particular points in the course of the disease and
these include,
Diagnosis
Commencement of treatment
Recurrence of disease
Transition from curative to supportive therapies
Advanced disease
End of life care
Why is it important to support
relatives at this time?
Because it may have an impact on health
and their bereavement experience
What do we know affects family
health?
• Experiences of Hospital Care –good and
not so good
• Socioeconomic factors
• Factors within the individual –how does
this person usually cope during stressful
times and which coping strategies have
they used in the past?
• Feeling valued as a part of the caring team
• Changes in life/ hopes for future
What can happen?
Family members can play a central role in
managing all aspects of the patients care
which can become overwhelming and very
stressful, affecting all aspects of their
quality of life. They are at risk of
developing a variety of psychological and
physical problems, including anxiety,
depression, fatigue and health problems
What helps
• Provision of information
• Practical help with care provision
• Clarification about the patients care or
symptoms
• Provision of emotional and spiritual
support
• Structured assessment
Case Study
• Mrs M is a 79yr old lady who has end stage heart failure
and chronic lung problems. She has been ill for many
years but on this admission to hospital she has not
responded to usual treatment. The cardiologists now feel
it is inappropriate to continue with this and have
explained the aim now is for comfort.
• Mrs M has a partner of the last 5 yrs , whom she met at
the bowling club. He is living in her house at present to
care for her dog. He is very emotional and tearful each
time he visits
• Mrs M ‘s daughter is newly retired and childminds fulltime for her grandchildren
• Mrs M is asking to go home to die and her son who is in
contact daily by phone from Canada agrees with this
Case Study
• 40 yr old lady admitted to surgical ward with abdominal pain and
vomiting. Bowel ca 5 yrs ago, now bowel obstruction- no surgery
possible.
• Pt is Turkish asylum seeker ( in Scotland 3 yrs) and is in danger of
deportation
• Husband and pt speak little English and staff have been using 16yr
old daughter to interpret . Husband rarely visits as works long hours(
?illegally). Daughter on college course but has had to take time off.
Spends her time in ward reading magazines
• Daughter says her 10yr old sister is not aware of mothers cancer
diagnosis and is being cared for by friends. She says her family are
hoping for a cure and are angry that oncologists here have no
treatment to offer. Friends are contacting doctors on the internet re
new drugs
Case study
Pt is a 10yr old boy born with a genetic disorder which
has short life span. He has amazed doctors with his fight
for life and living but is now entering the terminal phase
of his illness.
He has a younger brother of 6yrs who also has the same
condition.
The parents marriage split but mum is remarried and
pregnant with a baby girl.
The paternal grandparents still have contact with the
boys and are very close to them.
The doctors have explained pt is dying to the family and
asked where they would like him to be cared for
Where can support be accessed?
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Medical and nursing staff on ward
AHP- Physiotherapist, occupational therapists,SALT
Chaplaincy
Interpreting services
GP
Carers support agencies
Welfare Rights officers
Social work
Family/child support services/protection officers
Internet resources for families
Specialist palliative care
Relevance of this for Practice?
Relatives’ stress is reduced by;
• Seeing the patient comfortable with symptoms relieved
• Getting regular updates from nurses and doctors
• Carers who know and are known to the patient and their
family
• A caring and relaxed manner of the staff
• Having a private place to rest that is close to the patient
• Support of family and close friends
• Access to social, pastoral and specialist support
(McIntyre,1996)
“ My wife has been diagnosed with a disease but it’s the
devastation of that disease that we live each day….
Bearing witness to illness is one thing.
Bearing witness to pain is quite an other.
I feel I am becoming the patient on many levels. I, too,
cannot sleep. I am anxious and depressed and tearful. I
am attempting to be provider, spouse, father and mother.
As I measure medication I shudder at the reality that I am
pouring a dose of morphine for my wife.
There is something surreal about this way of being that
now fills my daily life.
I am not the patient. I am the witness.
( Ferrell,B 2005)
References and Sources of further
information
• Epilopoulous,C (1984) Health Assessment of the
Older Adult. California:Addison-Wesley
• Callaghan,H.E(2003) Families dealing with
advanced heart failure.Critical Care Nursing
Vol26,3,pp230-243
• McIntyre, R. ( 1996)Nursing support for relatives
of dying cancer patients in hospital :improving
standards by research. Unpublished PhD
Thesis. Dept of Nursing and Community Health,
Glasgow Caledonian University, Glasgow.
• www.macmillancancersupport.org.uk