Advance Care Planning:
Do you really know
what your patient wants?
Dr John Buckley, GP
Director Medical Education
General Practice Training Queensland
FGP 16
Brisbane, 3 April 2016
Hippocratic Oath: 12th century Byzantine manuscript
Hippocratic Oath
• I swear by Apollo the healer…….
• I will prescribe regimens for the good of my
patients according to my ability and my judgment
• and never do harm to anyone.
Beneficence
and
non-maleficence
What’s our duty of care?
“To take reasonable steps
(as other reasonable doctors [or nurses] would)
to save or prolong life
or act in the patient’s best interests”
Prof Loane Skene
University of Melbourne
“Law and Medical Practice: Rights, Duties, Claims and Defences” 2008
What is Advance Care Planning?
“Advance care planning is a process of planning for future
health and personal care whereby the person’s values, beliefs
and preferences are made known so they can guide decisionmaking at a future time when that person cannot make or
communicate his or her decisions.”
Australian Health Ministers’ Advisory Council (AHMAC) 2011
Ethical principles for
medical decision making
1. Autonomy
2. Beneficence
3. Non-maleficence
AHMAC 2011; Beauchamp & Childress 2001; Breen et al 2010
Case study of Patient AG
Patient Background
81yo man living with his wife, diagnosed with lung fibrosis in July 2004.
Poor response to steroids: increasing breathlessness, oxygen requirements.
• Introduced to ACP in July 2004, he declined.
• In January 2005 he was approached again.
• Able to state some of his wishes, including:
 Not for intubation
 Not for ICU and other aggressive management
AG Continued …..
• He discussed his wishes with his GP, and these were documented on the
discussion card, but he did not appoint his wife as an SDM or complete an
Advance Care Directive.
• He subsequently became acutely breathless at home and asked his wife to
ring GP, not ambulance (as he would have previously done).
• His GP attended him and provided comfort care at home and he died.
Medical decision making:
based on the “best interests” test:
1.
Is the proposed treatment medically indicated?
Dr considers medical condition, prognosis & acceptable outcome
Note: The doctor considers the benefits versus the burdens
The doctor is not obliged to provide or continue treatment that is either futile or
not in the person’s best interests, even if the patient/family request it.
Note: In Qld, consent must be obtained to withhold or withdraw life-sustaining
treatment, except in an emergency.
2.
If yes, what are the patient’s wishes?
Informed consent of competent patient
or the SDM of the non-competent patient
Note: Unwanted medical interventions can be refused, even if death is the likely
outcome
AHMAC 2011; Beauchamp & Childress 2001; Breen et al 2010
Queensland Health: https://www.health.qld.gov.au/qhpolicy/docs/gdl
Statutory laws for ACP
All states & territories have laws:
•
To appoint substitute decision-makers
e.g. Enduring guardians or powers of attorney
All states & territories, except NSW, have laws:
• For advance care plans or directives
e.g. Advance Health Directive (Qld)
Common law:
Hunter and New England Area HS v A 2009
•
•
•
Mr A had previously prepared an ACD- refused life sustaining Rx
– Subsequently admitted and placed dialysis as emergency
– Then discovered the ACD which refused dialysis
Health Service asked NSW Supreme Court for a declaration
The Supreme Court determined:
– “if the ACD is made by a capable adult and is clear and unambiguous and
extends to the situation at hand, then it must be respected.”
– “it would be battery to administer medical treatment to a person of the kind
prohibited by a valid ACD”
– “a refusal of Rx did not need to be an ‘informed refusal’ i.e. not based on
medical information. It is valid whether based on religious, social or moral
grounds or even upon no apparent rational grounds”
– Even in an emergency you cannot Rx contrary to a known ACD
Hunter and New England Area Health Service v A [2009] NSWSC 761
Medical decision making:
Who gives consent?
Does the patient have decision making capacity?
Can he/she
1.
2.
3.
4.
understand the information (informed consent)?
appreciate the relevance of the information to their situation?
reason (by comparing alternatives & weighing up the risks/benefits)?
express a choice (and the rationale for it- optional)?
For non competent patients (i.e. lacking capacity)
• Identify substitute decision-maker (SDM)
• Discuss benefits and burdens, and patient’s wishes, with the person’s SDM
Decision making is guided by
•
•
Advance Care Plan (written or verbal)
Always by consideration of what is in the patient’s best interests
Queensland law
Powers of Attorney Act 1998 (Qld)
• This enables a person to:
– appoint one or more Enduring Powers of Attorney for personal matters,
which includes health matters to make decisions when they have
impaired capacity
– create an Advance Health Directive to give directions about health
matters
Guardianship and Administration Act 2000 (Qld)
• Defines:
– the priority order for making decisions when a person is incapable of
giving consent to medical treatment (‘the guardianship regime’)
– principles under which decisions should be made on behalf of a person
Substitute decision maker:
‘the guardianship regime’
The GAA Act defines the process for obtaining consent for medical treatment for
a person incapable of providing consent in the following priority order:
•
Direction given in an Advance Health Directive
•
A Guardian appointed by the Qld Civil and Administrative Tribunal, or Tribunal order
•
Enduring Power of Attorney (EPOA-personal/health care)
•
The person’s Statutory Health Attorney, defined in the Powers of Attorney Act s63 as
the first person in the following list who is readily available and culturally appropriate:
– The person’s spouse (if the relationship is close and continuing)
– Someone who has the care of the person and is not a paid carer
– A close friend or relation of the person
•
If none of the above applies, the Public Guardian is the person’s Statutory Health
Attorney
SDM: Decision making principles
• SDM must take into account the “general principles” and the
“health care principle” defined in both Acts*
• For consent to medical treatment:
– the principle of substituted judgment must be used
– decisions must take into account the person’s views and wishes
• These views and wishes may be expressed:
– orally
– in writing, or
– in another way, including by conduct. The decision must be made in
the way least restrictive of the person's rights
• Powers must only be exercised to maintain or promote the person's
health or wellbeing, and in the person’s best interests
*POA; GAA
Refusal of Treatment &
Special Health Matters
• A SDM can do anything that the person could lawfully do
• They can refuse medical treatment, as long as they believe, under
substituted judgement, that the decision aligns with the person's views
and wishes
• In common with some States/Territories, Queensland’s legislative
framework recognises that there are some matters that are too
personal for someone to make decisions about for another person
• When related to health care, these are called ‘special health matters’
• These include organ and tissue donation, sterilisation and termination
of pregnancy
• An SDM could not give consent in relation to these special matters
• Only QCAT or the Supreme Court can give consent for these
procedures
QCAT http://www.qcat.qld.gov.au
(Accessed Oct 2015)
Queensland law:
Withholding/withdrawal of life-sustaining treatment
• Life-sustaining medical treatment can only be withheld or
withdrawn where consent is obtained
• Where the patient lacks capacity, consent must be obtained
through ‘the guardianship regime’
• There are exceptions e.g. in emergency situations
• In some cases, consent may not need to be obtained to
provide life-sustaining measures (e.g. under urgent health
care provisions), but consent would be required to withdraw
the measures.
Queensland Health: https://www.health.qld.gov.au/qhpolicy/docs/gdl
Statutory document vs
Common law
vs
•
The POA Act does not affect the common law recognition of instructions about health
care given by a person that are not given in an Advance Health Directive*
•
There is a form for an Advance Health Directive. It can also be a letter or other
document, such as a Statement of Choices.# Provided the signing and witnessing
requirements are followed, it is valid and therefore legal.**
•
If the document is not signed or witnessed, the views and wishes expressed will be
taken into consideration if the person loses capacity. This could also be a common law
health directive**
•
A person does not need to fill out any forms to appoint a Statutory Health Attorney as
the law automatically allows this to occur.**
•
Statutory Health Attorneys (the ‘default’ SDM) are the most common category of SDM in
Queensland**
*Queensland Public Interest Law Clearing House Incorporated (QPILCH). Fact Sheet GAA-Types of substitute decision making
(Accessed Oct 2015)
# Downloadable from the My Care, My Wishes website (Accessed Nov 2015)
**Queensland Health: Advance Care Planning online (Accessed Oct 2015)
What’s the evidence?
The benefits of ACP
ACP improves:
•
•
•
•
end-of-life care & quality of death
knowledge of, and respect for, a person’s wishes
likelihood of a person dying in their preferred place
family understanding of what to expect during the dying
process
• patient & family satisfaction with care
Detering et al 2010 BMJ; Elpern et al 2005; Molloy et al 2000; Teno et al 2007; Wright et al 2008
The benefits of ACP
ACP reduces:
• likelihood of unwanted treatment at end-of-life
• hospital admissions not wanted by patients
• stress, anxiety and depression in the surviving
relatives
• moral distress amongst healthcare providers
Detering et al 2010 BMJ; Wright et al 2008; GSF UK
Identifying patients for whom
ACP is indicated
• Doctors should ask themselves:
– “would I be surprised if this patient was to die in the next 12 months?”
• If the answer is “no” then is an opportunity to start planning with
the patient.
• Also consider
–
–
–
–
–
When there is a change of condition or a perception of change in the patient
When treatment decisions need to be made
At already scheduled medical consultation/review
If there are requests or expectations that are inconsistent with clinical judgement
If the patient raises it
• Health professionals should lead by example that older people
dying is natural and not a medical failure.
The trajectories of decline
Rapid Decline
Slow Decline
Prolonged Decline
Mostly Cancer
Mostly heart and lung failure
Mostly frailty and dementia
Lynn, J. 2001 JAMA
Choose your words carefully
Positive rather than negative
– Ask “would you prefer to Allow a Natural Death (AND)?”
instead of asking
– “Do you want to be resuscitated?
or saying
– “Not For Resuscitation (NFR)”
Venneman, S., et al. 2008 J Med Ethics
ACP: cultural safety
• Consider a patient’s culture - what are their views on:





illness, suffering, dying and death?
the role of doctors and nurses?
accepted healthcare practices and remedies?
cultural, religious & spiritual beliefs and practices?
the role of family & family-based decision-making?
• Also:




be culturally aware, sensitive and competent (skills)
? influence of your beliefs & values re illness, Rx and death
ask respectful, open-ended questions
avoid stereotyping people because of their culture
Don’t assume, inquire!
Clark, K. & Phillips, J. AFP 2010
Remember to:
• Check their understanding of what you’ve said
• Check your understanding of what they’ve said
• Document person’s preferences (or family/SDM if the
person is not competent)
• Review/update the person’s ACD if their condition
and/or wishes change
Resources for ACP
Decision Assist
Telephone Advisory Service
Advance Care Planning
8am-8pm 7 days
Specialist Palliative Care
24hrs a day 7 days
1300 668 908
www.decisionassist.org.au
References
Australian Health Ministers’ Advisory Council (AHMAC) National Advance Care Directives Working Group,
(2011) A national framework for advance care directives. Canberra
Beauchamp, T. L. & J. F. Childress (2001). Principles of biomedical ethics. Oxford University Press
Breen, K. J., et al. (2010). Good medical practice: professionalism, ethics and law. New York: Cambridge
University Press
Clark, D., (2014) Imminence of death among hospital inpatients: Prevalent cohort study. Palliative medicine,
28(6), 474-479
Clark, K., & Phillips, J. (2010). End of life care: the importance of culture and ethnicity. Australian family
physician, 39(4), 210
Detering, K. M., et al. (2010). The impact of advance care planning on end of life care in elderly patients:
randomised controlled trial. BMJ 340: c1345
Elpern, E.H., et al. (2005) Moral distress of staff nurses in a medical intensive care unit. American Journal of
Critical Care. 14(6); 523-30
The Gold Standards Framework. http://www.goldstandardsframework.org.uk/advance-care-planning (Accessed
July 2015)
Guardianship and Administration Act 2000 (Qld)
References
Hunter and New England Area Health Service v A [2009] NSWSC 761 (accessed July 2015)
Lynn, J. (2001). Serving patients who may die soon and their families: the role of hospice and other services. JAMA, 285(7); 925-932
Metro South Health. Statement of Choices forms. My Care, My Wishes http://metrosouth.health.qld.gov.au/acp/statement-of-choicesform (Accessed Nov 2015)
Molloy, D.W., et al., (2000) Implementation of advance directives among community-dwelling veterans. Gerontologist. 40(2); 213-217
Powers of Attorney Act 1998 (Qld)
QCAT http://www.qcat.qld.gov.au (Accessed Oct 2015)
Queensland Health: Advance Care Planning online http://apps.health.qld.gov.au/acp/HOME.aspx (Accessed Oct 2015)
Queensland Health. End-of-life care: Decision-making for withholding and withdrawing life-sustaining measures from adult patients
Implementation guidelines Parts 1 and 2 https://www.health.qld.gov.au/qhpolicy/docs/gdl/qh-gdl-005-1-1.pdf (Accessed Nov 2015)
Queensland Public Interest Law Clearing House Incorporated (QPILCH). Fact Sheet GAA-Types of substitute decision making
http://www.qpilch.org.au/resources/factsheets/GAA_-_Types_of_substituted_decision_making.htm (Accessed Oct 2015)
Skene, Loane (2008). Law and medical practice: rights, duties, claims and defences (3rd ed). LexisNexis Butterworths, Chatswood,
N.S.W
Teno, J.M., et al., (2007) Association between advance directives and quality of end-of-life care: a national study. J Am Geriatr Soc,
55(2); 189-194
Venneman, S., et al. (2008). “Allow natural death” versus “do not resuscitate”: three words that can change a life. Journal of Medical
Ethics 34(1); 2-6
Wright, A.A., et al., (2008). Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver
bereavement adjustment. JAMA 300(14); 1665-1673