Transcript Supporting Families Ciara Savage, Palliative Care Social Work

Supporting Families
Ciara Savage, Palliative Care Social Work
Palliative Care Study Day
17th September 2009
Lecture Outline
Context
 Practical Focus
 Challenges – Coping with anger, denial,
family dynamics, etc.
 Solutions – What we can do
 Questions
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A FRIENDS STORY, 1990
Challenges
 Family
Dynamics
 Coping
with Anger
 Coping
with Denial and Collusion
 Attending
to Emotion
Typical Timeline
Breaking Bad News
End of Life Care
Time of Death
Immediate Aftermath
Coping with Family Dynamics
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We need to be aware of broader social
/cultural issues that have an impact on
family systems.

We need to look at the individual contexts.

Be mindful of a family’s journey
MIND
BODY
Physical Attributes
Medical Conditions
Self Esteem
Psychology
Cognitive
Intelligence
SPIRIT
Value Systems
Laws
Socio-Economic
Policies
Discrimination
Oppression
Culture/Ethnicity
Resources
Meaning
Will Power
Religion
Determination
Family History
Relationships
Communications
Expectations
Family Needs
Family Networks
Community/Society
The whole person exists in context
Environmental Needs - Housing –Money- Facilities-Material Conditions
Framework for holistic assessment - the whole person exists in a context: From Good Pracices in Palliative Care : A
Psycho social Perspective (1998) David Oliviere, Rosalind Hargreaves & Barbara Monroe.
Impact of Illness on the Family
Altschuler 1997
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Socio-Cultural factors are important
Life Stage is significant
Stage of illness significant
Common dilemmas:
- living with uncertainty.
- maintaining identities.
- negotiating changes in roles and expectations.
Balancing acceptance with hope as illness
progresses.
Impact of Illness on the Family
Byng-Hall 1997
 Families often have a particular ‘way’ or
‘script’ for dealing with illness, and
providing care.
 Our role in promoting innovative ways to
cope with illness.
Relationships between Professionals and
Families
Altschuler 1997
 Boundary between the family and outside world,
more permeable.

Shift in definition of roles.
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Important to ensure the family-professional
system functions effectively.
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Avoid de-skilling
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Actively listen to concerns
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Non-judgemental stance
Relationships between Professionals and
Families
Altschuler 1997
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Important to respect limits on what people
feel they can share.
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Professional role – Provide space for
families to consider impact of illness on
dignity and quality of their lives.
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Allow family members to reach informed
decisions they feel comfortable with.
Relationships between Professionals and
Families – effective communication
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Illness Narratives (Altschuler 1997)
- a way of exploring the patients’ and families
experience of illness
- Illustrate strategies used to cope and manage
illness
- Highlight unique gains and losses to individual
relationships
- Method to explore parts of patients stories
which may have been excluded.
Purpose of Family Meetings
Sharing of Information & Concerns
 Clarifying goals of care
 Diagnosis
 Treatment Plan
 Prognosis
 Providing space to attend to challenging
issues.

Coping with Anger
Often misdirected at health professionals.
 Remain calm; acknowledge & legitimise feelings
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Establish cause.
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Is it justified?
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Who/ where is it focused?
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Aim for healthy discharge of feelings.
(Faulkner, 1998)
Coping with Anger –
Altschuler 1997
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Aim to direct the energy of ANGER into
some ACTION
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Energy to Harness, not to Resist.
Methods of dealing with anger
Faulkner, A. BMJ 1998;316:130-132
Denial
A valid coping mechanism for patients and
their families.
 May be total (rare).
 May be ambivalent.
 Level of denial may change over time.
(Faulkner, 1998)
 Question/ Prompt
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Collusion
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A situation where a group of people agree to keep
information from or to misinform others.
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Generally an act of love and a need to protect a
loved one from further pain.
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Fear that ‘truth’ will take away hope.(Faulkner
1998)
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A way to cope with denial.
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Patients commonly aware and also colluding.
Collusion: How to diffuse it sensitively
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Modelling open communication at a team
level.
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Explore the cost of collusion to the family.
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Explore fears.
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Promise not to give unwanted information.
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Never agree to withhold information.
Necessary Collusion?
Referred to by Helft, 2005.
 Believes that, “.. Except in instances
where stark frankness is openly requested,
a style of communication that allows
patients to dictate most of the flow of
prognostic information, or to avoid it, is an
ethical strategy of prognostic
communication.”
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Recommended manner of breaking bad news
Faulkner, A. BMJ 1998;316:130-132
Breaking Bad News
Its an UNCOMFORTABLE experience
 Goal – EMPATHY
 Diificult to do – be aware of how we
screen our own pain
 Eg. Avoiding eye contact, rushing, turning
away, inappropriate settings.
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Communication
Studies have shown a correlation of
perceived poor team communication styles
with increased levels of family distress.
(Morita et al, 2004)
 Revealed a strong need for emotional
support for families. Lower levels of
distress correlated with physicians willing
to explore families’ feelings.
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Effective Communication
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Depends on all stakeholders.
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Avoid ambivalent language, can lead to
misunderstandings.
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Needs of patients and carers do not
always match.
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Demanding on professionals: ‘pig in the
middle’ syndrome. (Faulkner, 1998)
Providing space
Re-tell story - Helping families hear bad
news, come to terms with situation.
 Making sense of the ‘new reality’
 Meaning Making
 Attending to emotion – however it
presents itself.
 Aim to ensure families feel we have
understood their fears/dilemmas.
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“Despite the urgency to get things right, there is no one
best way of saying goodbye,and what is often most
important is accepting differences in what each person can
tolerate.”
Altschuler, 1997
Hug, 1990