Advance Care Planning

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

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Outline

1. Why should we do ACP?
2. Ethics
3. Advance Care Planning
4. Practical Steps
5. Finding Hope in Sickness, Dying and Death

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1. Why should we do ACP?

4
Two Stories

• 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 didnt 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.

• 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 didnt
  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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Two More Stories Part 1

• 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 Kaths new diagnosis. Given that the
  progression of Kaths 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.

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Two More Stories Part 2

• 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 didnt 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.

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Random Clinical Trial

• 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
• 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 ones 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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• Ethics

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Traditional Morality

• the traditional ethical standard of Western
  civilisation - and other cultures too
• We should take reasonable steps to preserve our
  life
• ordinary or proportionate means
• We may refuse anything unreasonable or excessive
• extraordinary or disproportionate means

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Legal Standard

• Each competent person has an unlimited right to
  refuse all medical treatment.
• These two standards
• traditional morality
• the legal standard
• co-exist in health care,
• sometimes in an uneasy tension.

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Extraordinary or Disproportionate Means

• Futile and/or
• Overly burdensome
• physically too painful
• psychologically too distressing
• socially too isolating
• financially too expensive
• morally repugnant
• spiritually too distressing
• heroic or cruel treatment
• may be refused

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Advance Care Planning

• 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

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Advance Care Planning

• We must guide our SDM
• ongoing communication between person, SDM,
  significant others, and health professionals
• telling them our wishes verbally
• recording our wishes in doctors notes, hospital
  and aged care records

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Advance Care Planning

• Legally binding Advance Directives are sometimes
  problematic because they can bind us to a course
  of action which is inappropriate in unforeseen
  circumstances.
• Advance Directives may become more appropriate
  for those who are aged and frail, or those with
  serious or life-threatening disease.

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• Advance Care Planning

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Facilitated Decision-Making

• Medical Consultation

• Advance Care Planning

• patient reports their symptoms
• health professional provides diagnosis,
  prognosis, and treatment options
• health professional facilitates the patients
  decision-making

• patient reports their state of health, their
  values and wishes
• ACP facilitator may provide medical and other
  information
• ACP facilitator facilitates the patients
  decision-making

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NB

• 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?

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Initiating the Conversation

• This is part of our facilitation!
• Most people are ambivalent about ACP.
• Its about sickness, death and dying!
• How do you go about making these decisions?
• Even so, research shows that most people expect
  their carers to discuss ACP with them.
• 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.

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Revisiting the Conversation

• This too is part of our facilitation!
• Revisit ACP
• at regular intervals (e.g. every 6 or 12 months)
• if a persons health situation changes
  significantly
• e.g. their health deteriorates they are admitted
  into hospital
• if a persons social situation changes
  significantly
• a significant person in their life dies, or moves
  away, or doesnt visit much any more
• a significant goal has been achieved (e.g. they
  celebrate their 80th birthday, or attend a
  significant celebration)

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Conversations and Paper

• Both facilitated decision-making and records of
  the conclusions from this are necessary for ACP.
• There is a reductionistic tendency to reduce ACP
  to tick-a-box or fill-in-a-form. (paper)
• The heart of ACP must be facilitated
  decision-making. (conversations)

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Queensland Paperwork

• Form 1 General Power of Attorney
  http//www.justice.qld.gov.au/__data/assets/pdf_fi
  le/0004/15889/general-power-attorney.pdf
• Form 2 Enduring Power of Attorney Short
  http//www.justice.qld.gov.au/__data/assets/pdf_fi
  le/0004/15970/enduring-power-attorney-short-form.p
  df
• Form 3 Enduring Power of Attorney Long
  http//www.justice.qld.gov.au/__data/assets/pdf_fi
  le/0008/15983/enduring-power-attorney-long-form.pd
  f
• Form 4 Advance Health Directive
  http//www.justice.qld.gov.au/__data/assets/pdf_fi
  le/0007/15982/advance-health-directive.pdf

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Queensland Paperwork (contd)

• Form 5 Revocation of General Power of Attorney
  http//www.justice.qld.gov.au/__data/assets/pdf_fi
  le/0004/15988/revocation-of-general-power-attorney
  .pdf
• Form 6 Revocation of Enduring Power of Attorney
  http//www.justice.qld.gov.au/__data/assets/pdf_fi
  le/0003/15987/Revocation-of-Enduring-Power-of-Atto
  rney.pdf
• Form 7 Interpreters/Translators Statement
  http//www.justice.qld.gov.au/__data/assets/pdf_fi
  le/0009/15984/interpreter.pdf
• All these forms are available at
  http//www.justice.qld.gov.au/justice-services/
  guardianship/forms-and-publications-listForms

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Catholic Resources

• 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
• Download them all for free from the Catholic
  Health Australia website http//www.cha.org.au/pu
  blications.html

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• Practical Steps

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Triage

• Those in reasonable health
• appoint Substitute Decision Maker (SDM)
• advise SDM of their values and wishes
• Those with a serious chronic disease
• appoint Substitute Decision Maker (SDM )
• advise SDM of their values and wishes
• advice about disease trajectory
• bucket list?

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Triage (contd)

• No to the trigger questions Would I be
  surprised if this person died in the next 12
  months?
• 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)
• hopefully, all the plans are in place
• as the situation changes, new decisions may still
  have to be made

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ACP Process

• 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. doctors 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)

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Choosing a Substitute Decision Maker

• someone who is reasonably accessible
• someone I trust
• someone I can talk to
• someone who is at least a bit assertive
• someone who is not so close to me that they might
  be overwhelmed by their own emotions when my end
  draws near
• Is this a close family member? another family
  member? a friend?

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• ACP Skills
• Visit http//depts.washington.edu/oncotalk/ for
  videos and other resources

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Tell me more

• Try to avoid closed-ended questions (which elicit
  answers like yes or no).
• Instead, make open-ended requests like Tell me
  more or Help me to understand.

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Ask-Tell-Ask

• 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.

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Respond to emotions

• 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.

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Elicit hopes and fears

• 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?
• DONT say Im sorry. Say I wish e.g. I wish
  we had more options or better treatment.

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Making a recommendation

• 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?

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Other Matters

• 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
• 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 dont seem to respond?
• Funeral wishes
• eg readings, hymns, readers, pall bearers, etc
• Burial wishes
• What else is important for you?

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NB

• 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?

42

• Finding Hope in Sickness, Dying and Death

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The Spiritual Quest

• Bruce Rumbold, Dying as a Spiritual Quest, in
  Spirituality and Palliative Care Social and
  Pastoral Perspectives, 195-218
• Restitution Narrative
• I got sick. I got treated. Now Im completely
  recovered.
• Chaos Narrative
• Nothing makes any sense.
• Quest Narrative
• 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

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Philip Goulds When I Die

• 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)

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Henri Nouwens Our Greatest Gift A Meditation
on Dying and Caring

• Henris 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)

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Henri Nouwens Our Greatest Gift A Meditation
on Dying and Caring

• She, who lived such a long and very productive
  life now, in her growing weakness, gives what she
  couldnt give in her strength a glimpse that
  love is stronger than death. Her grandchildren
  will reap the full fruits of that truth. (p 104)
• Not only the death of Jesus, but our death too,
  is destined to be good for others to bear fruit
  in other peoples lives. (p 52) In this way,
  dying becomes the way to an everlasting
  fruitfulness. (p 53)

47
NB

• 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?

48
Crossing the Bar by Alfred Lord Tennyson
(1809-1892)

• 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.