Transcript Slide 1

Advance Care Planning
Rev Kevin McGovern,
Caroline Chisholm Centre for Health Ethics:
Multifaith Academy for Chaplaincy & Community Ministries
at Pharmacy Australia College of Excellence (PACE),
15 July 2014
Outline
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4.
5.
Why should we do ACP?
Ethics
Advance Care Planning
Practical Steps
Finding Hope in Sickness, Dying
and Death
1.
Why should we do ACP?
Two Stories
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At 3 am, old Mrs Jones at the RACF
had what is probably a heart attack.
There was no ACP form, or the night
staff didn’t know where to look.
Ambulance
CPR
ED (Emergency Department)
ICU (Intensive Care Unit)
“This is just what Mum was trying to
avoid!”
Mrs Jones never really regained
consciousness. She showed some
signs of agitation and distress. She
died two days later.
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At 3 am, old Mrs Jones at the RACF
had what is probably a heart attack.
There was an ACP form – and the
night staff knew how to access it.
Mrs Jones had said that she didn’t
want CPR. She wanted comfort
measures which allow natural death
(AND).
The ACP form told staff whether or
not to call anyone at night.
Mrs Jones was cared for at the
RACF where she lived. Just-in-case
medicine kept her comfortable.
She died peacefully at 5 am.
Two More Stories – Part 1
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Kath is a 50-year-old woman who has just being diagnosed with
early-onset dementia. Kath lives with her husband of 30 years;
none of their 5 adult children live in the family home anymore.
Kath and her husband talk to the specialist regarding Kath’s new
diagnosis. Given that the progression of Kath’s condition is
unknown, the specialist introduces Advance Care Planning to
Kath. Kath, her husband and their children think and talk about
her values and wishes. Kath feels empowered to be able to make
decisions while she is still cognitively able to do so. At her next
specialist meeting, Kath gives her husband an Enduring Power of
Attorney (for both financial and personal/health matters). She
also completes an Advance Health Directive.
Two More Stories – Part 2
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Mark is a fit young man in his mid-20s. He learnt about Advance
Care Planning at university, but hadn't really thought much more
about it. Then, a footballer on a local team was seriously concussed
with an on ground head injury. The footballer ended up in intensive
care and, sadly, failed to recover. His parents had to hastily make
difficult decisions, and were obviously traumatised because they
didn’t really know what their son wanted. The media publicity
prompted Mark to think about his own situation. A quick search of
the internet gave Mark a document to give his uncle an Enduring
Power of Attorney. Mark was close to his uncle, and he told his
parents that if something happened, he thought they would be too
upset to make difficult decisions. His parents accepted this, but
asked Mark to talk to Uncle Jim, so that Jim would know what Mark
wanted if something ever did happen.
Random Clinical Trial
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Karen M Detering et al, “The impact of advance care planning on end of life
care in elderly patients: randomised controlled trial,” British Medical Journal
340 (2010):1345-1353:
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ACP significantly increased patient satisfaction with their hospital
stay.
ACP significantly increased the percentage of patients whose
EOL wishes were both known and followed.
ACP significantly increased family satisfaction with the process of
their loved one’s dying and death.
If their loved one died without ACP, 15-30% of family members
experienced significant stress, serious depression or severe
anxiety. ACP greatly reduced all these negative reactions.
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2.
Ethics
Traditional Morality
= the traditional ethical standard of Western
civilisation - and other cultures too:
•We should take reasonable steps to
preserve our life
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‘ordinary’ or ‘proportionate’ means
•We
may refuse anything unreasonable or
excessive
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‘extraordinary’ or ‘disproportionate’ means
Legal Standard
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Each competent person has an unlimited right to
refuse all medical treatment.
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These two standards
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traditional morality
the legal standard
co-exist in health care,
sometimes in an uneasy tension.
Extraordinary or
Disproportionate Means
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Futile and/or
Overly burdensome
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physically too painful
psychologically too distressing
socially too isolating
financially too expensive
morally repugnant
spiritually too distressing
‘heroic’ or ‘cruel’ treatment
may be refused
Advance Care Planning
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Our best first step is to appoint a
Substitute Decision Maker (SDM), who
speaks for us if we cannot speak for
ourselves.
Decisions by an SDM should be :
• faithful to our values and wishes
• substituted judgement = not deciding
for us, but speaking for us
Advance Care Planning
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We must guide our SDM:
• ongoing communication between
person, SDM, significant others, and
health professionals
• telling them our wishes verbally
• recording our wishes in doctor’s notes,
hospital and aged care records
Advance Care Planning
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Legally binding Advance Directives are
sometimes problematic because they can
bind us to a course of action which is
inappropriate in unforeseen circumstances.
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Advance Directives may become more
appropriate for those who are aged and
frail, or those with serious or life-threatening
disease.
3.
Advance Care Planning
Facilitated Decision-Making
Medical Consultation
• patient reports their
symptoms
• health professional
provides diagnosis,
prognosis, and treatment
options
• health professional
facilitates the patient’s
decision-making
Advance Care Planning
• patient reports their state
of health, their values and
wishes
• ACP facilitator may
provide medical and other
information
• ACP facilitator facilitates
the patient’s decisionmaking
NB
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Chaplains (Pastoral Practitioners or Spiritual
Care Practitioners) have useful skills for
Advance Care Planning.
What structures should be set up so that
chaplains are able to part of the
multidisciplinary team involved in Advance
Care Planning?
Initiating the Conversation
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This is part of our facilitation!
Most people are ambivalent about ACP.
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Even so, research shows that most people expect their
carers to discuss ACP with them.
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It’s about sickness, death and dying!
How do you go about making these decisions?
They expect us to raise the issue.
They expect us to guide them through decision-making.
We must encourage and support them to initiate ACP.
Revisiting the Conversation
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This too is part of our facilitation!
Revisit ACP:
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at regular intervals (e.g. every 6 or 12 months)
if a person’s health situation changes significantly
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e.g. their health deteriorates; they are admitted into hospital
if a person’s social situation changes significantly
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a significant person in their life dies, or moves away, or doesn’t
visit much any more
a significant goal has been achieved (e.g. they celebrate their 80th
birthday, or attend a significant celebration)
Conversations and Paper
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Both facilitated decision-making and records of the
conclusions from this are necessary for ACP.
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There is a reductionistic tendency to reduce ACP to ‘ticka-box’ or ‘fill-in-a-form.’ (‘paper’)
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The heart of ACP must be facilitated decision-making.
(‘conversations’)
Queensland Paperwork
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Form 1 General Power of Attorney
http://www.justice.qld.gov.au/__data/assets/pdf_file/0004/1588
9/general-power-attorney.pdf
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Form 2 Enduring Power of Attorney – Short
http://www.justice.qld.gov.au/__data/assets/pdf_file/0004/1597
0/enduring-power-attorney-short-form.pdf
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Form 3 Enduring Power of Attorney – Long
http://www.justice.qld.gov.au/__data/assets/pdf_file/0008/1598
3/enduring-power-attorney-long-form.pdf
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Form 4 Advance Health Directive
http://www.justice.qld.gov.au/__data/assets/pdf_file/0007/1598
2/advance-health-directive.pdf
Queensland Paperwork (cont’d)
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Form 5 Revocation of General Power of Attorney
http://www.justice.qld.gov.au/__data/assets/pdf_file/0004/1598
8/revocation-of-general-power-attorney.pdf
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Form 6 Revocation of Enduring Power of Attorney
http://www.justice.qld.gov.au/__data/assets/pdf_file/0003/1598
7/Revocation-of-Enduring-Power-of-Attorney.pdf
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Form 7 Interpreter’s/Translator’s Statement
http://www.justice.qld.gov.au/__data/assets/pdf_file/0009/1598
4/interpreter.pdf
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All these forms are available at:
http://www.justice.qld.gov.au/justice-services/
guardianship/forms-and-publications-list#Forms
Catholic Resources
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Advance Care Plan
A Guide for People Considering Their Future Health
Care
A Guide for Health Care Professionals Implementing
a Future Health Care Plan
Code of Ethical Standards for Catholic Health and
Aged Care Services in Australia
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Download them all for free from the Catholic Health
Australia website:
http://www.cha.org.au/publications.html
4.
Practical Steps
Triage
Those in reasonable health
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appoint Substitute Decision Maker (SDM)
advise SDM of their values and wishes
Those with a serious chronic disease
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appoint Substitute Decision Maker (SDM )
advise SDM of their values and wishes
advice about disease trajectory
bucket list?
Triage (cont’d)
No to the trigger questions: ‘Would I be surprised
if this person died in the next 12 months?’
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appoint Substitute Decision Maker (SDM )
advise SDM of their values and wishes
advice about disease trajectory
bucket list?
recording treatment preferences, e.g. Advance Directive
Death is imminent (e.g. 48-72 hours)
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hopefully, all the plans are in place
as the situation changes, new decisions may still have to be
made
ACP Process
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What do they understand about their condition (diagnosis, prognosis)
“We hope for the best and we prepare for the worst.”
hopes and fears
bucket list
values and wishes (“Are you someone who believes that every last
thing must be done to preserve life, or do you believe that treatment
may be refused if it is futile or too burdensome?”)
Choosing and appointing a substitute decision maker
Recording treatment wishes (e.g. doctor’s notes, hospital and aged
care records, Advance Directive): Should these guide or bind their
substitute decision maker?
Make plans for review (e.g. 6 or 12 months, or if their health, personal
or social situation changes)
Choosing a
Substitute Decision Maker
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someone who is reasonably accessible
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someone I trust
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someone I can talk to
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someone who is at least a bit assertive
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someone who is not so close to me that they might be
overwhelmed by their own emotions when my end draws
near
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Is this a close family member? another family member? a
friend?
ACP Skills
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Visit http://depts.washington.edu/oncotalk/ for videos and
other resources
“Tell me more”
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Try to avoid closed-ended questions
(which elicit answers like ‘yes’ or ‘no’).
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Instead, make open-ended requests like
“Tell me more” or “Help me to understand.”
Ask-Tell-Ask
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ASK what the other person already
understands about their condition.
ASK e.g. “May we talk about what the future
could hold?”
TELL no more than 3 points at a time, using
simple and non-technical language.
ASK what questions they have.
ASK them to summarise what they have
heard.
Respond to emotions
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Bad news elicits emotions.
NAME the emotion.
ACKNOWLEDGE the challenges of the
situation.
Offer SUPPORT.
If emotion is not honoured, it will detract
from good decision-making in Advance
Care Planning.
Elicit hopes and fears
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“If your time is limited, what is most
important to you?”
Discuss goals and what is achievable.
“When you think about the future, what
worries you?”
DON’T say “I’m sorry.” Say “I wish…” e.g.
“I wish we had more options or better
treatment.”
Making a recommendation
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“Do you want a recommendation?”
Start with what can be achieved.
After you have made your recommendation,
ask what they are thinking.
If necessary, explain why other courses of
action cannot achieve what is wanted.
“At the point when death is very close, have
you given any thought to the type of care you
would want?”
Other Matters
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Have I made a will? Do I have special things that I want to leave
to specific people? (Make a list!)
Any last messages for anyone?
As death nears, do you want:
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Funeral wishes
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people to be told you are sick and asked to pray for you?
people with you? Who?
to have people talk to you and hold your hand, even if you don’t
seem to respond?
eg readings, hymns, readers, pall bearers, etc
Burial wishes
What else is important for you?
NB
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Chaplains (Pastoral Practitioners or Spiritual
Care Practitioners) have useful skills for
Advance Care Planning.
What structures should be set up so that
chaplains are able to part of the
multidisciplinary team involved in Advance
Care Planning?
5.
Finding Hope in Sickness,
Dying and Death
The Spiritual Quest
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Bruce Rumbold, “Dying as a Spiritual Quest,” in Spirituality and Palliative
Care: Social and Pastoral Perspectives, 195-218:
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Restitution Narrative
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Chaos Narrative
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“I got sick. I got treated. Now I’m completely recovered.”
Nothing makes any sense.
Quest Narrative
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A quest is the story of a man or woman who journeys to a
strange land in search of treasure…. This time, the strange
land is the world of suffering and sickness. But there is
treasure there too.
“Responding to the call involves initiation into suffering and
trial, then (hopefully) transformation…”
Philip Gould’s When I Die
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“Intensity comes from knowing you will die and knowing
you are dying…. Suddenly you can go for a walk in the
park and have a moment of ecstasy…. I am having the
closest relationships with all of my family…. I have had
more moments of happiness in the last five months than
in the last five years.” (p. 127-129)
“I have no doubt that this pre-death period is the most
important and potentially the most fulfilling and most
inspirational time of my life.” (p. 143)
Henri Nouwen’s Our Greatest Gift:
A Meditation on Dying and Caring
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Henri’s secretary Connie Ellis had a stroke: “She who
had always been eager to help others now needed
others to help her.” (pp 96-97)
“I wanted Connie…. to come to see that, in her growing
dependency, she is giving more to her grandchildren
than during the times when she could drive them around
in her car…. The fact is that in her illness she has
become their real teacher. She speaks to them about her
gratitude for life, her trust in God and her hope in a life
beyond death.” (pp 103-104)
Henri Nouwen’s Our Greatest Gift:
A Meditation on Dying and Caring
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“She, who lived such a long and very productive life now,
in her growing weakness, gives what she couldn’t give in
her strength: a glimpse that love is stronger than death.
Her grandchildren will reap the full fruits of that truth.” (p
104)
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“Not only the death of Jesus, but our death too, is
destined to be good for others… to bear fruit in other
people’s lives.” (p 52) “In this way, dying becomes the
way to an everlasting fruitfulness.” (p 53)
NB
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Chaplains (Pastoral Practitioners or Spiritual
Care Practitioners) have useful skills for
Advance Care Planning.
What structures should be set up so that
chaplains are able to part of the
multidisciplinary team involved in Advance
Care Planning?
Crossing the Bar
by Alfred Lord Tennyson (1809-1892)
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Sunset and evening star,
And one clear call for me!
And may there be no moaning of the bar,
When I put out to sea,
But such a tide as moving seems asleep,
Too full for sound and foam,
When that which drew from out the boundless deep
Turns again home.
Twilight and evening bell,
And after that the dark!
And may there be no sadness of farewell,
When I embark;
For tho' from out our bourne of Time and Place
The flood may bear me far,
I hope to see my Pilot face to face
When I have crost the bar.