2012 AABHL Conference
Deciding for dementia patients –
the challenges and responsibilities
Kanny Ooi
Bioethics Centre
University of Otago
Background
• Master of Bioethics & Health Law (MBHL) student at the
Bioethics Centre, University of Otago.
• Research essay was first submitted as an MBHL assessment
in 2011.
• Interest in ethical issues concerning the elderly and end-oflife care.
Acknowledgements
Committee of the AABHL
John McPhee
• Long-time member of the Clinical Unit in Ethics & Health Law
and Lecturer in the Faculty of Law, University of Newcastle.
• Taught law to a wide variety of health professionals and
students.
• Provided inspiration to many students in health law.
John McPhee award
• Created to mark the late John McPhee’s significant contribution
and to encourage scholarship in health law and ethics.
A road map …
 Challenges of caring for elderly dementia patients
 Framework for proxy decision-making
 Issues in proxy-decision making
 Suggestions for improving proxy decision-making
 Advance Directives
 Conclusion
The challenges of caring for the elderly
• Caring for the elderly raises some of the most challenging
ethical, medical and legal issues in healthcare:
– Higher incidence of chronic illness
– Advances in medicine
prolong life + postpone death
(despite severe and debilitating illness)
– Need to balance various factors:
patient’s quality of life, cost of healthcare, next-of-kin’s
views.
• Challenges are compounded with dementia patients.
About Dementia
• Condition that impairs and reduces mental capacity.
• Results in disorientation, confusion, memory loss.
• In the early stages: symptoms are mild …
• Over time … symptoms increase coupled with cognitive
decline and poor health.
Enduring Power of Attorney
• Protection of Personal and Property Rights Act 1988
(PPPRA) provides the framework for proxy decision-making
in New Zealand.
• Donor authorises attorney to make decisions on donor’s
behalf.
• Attorney shall not act unless donor is mentally incapable
(section 98A PPPRA).
Enduring Power of Attorney (cont’d)
Underlying assumption:
Attorney is able to reflect the donor’s wishes accurately and
consistently.
In reality: This is not necessarily the case.
Issues in proxy decision-making
1.
•
Inaccurate judgement
Most patients believe their designated family member(s)
and clinician(s) will make accurate end-of-life decision on
their behalf.
•
But proxy decision makers were inaccurate in
approximately one-third of all cases (Shalowitz, D.I., GarrettMeyer, E., & Wendler, D. (2006). Archives of Internal Medicine, 166(5):
493-497)
… despite
patient choosing their proxy;
prior discussions between the proxy and
patient.
Issues in proxy decision-making
1.
Inaccurate judgement
People are “simply not very good at making
substituted judgements for others, not even close
relatives”.
Wrigley, A. (2007). Journal of Medical Ethics, 33(9): 527-531.
Issues in proxy decision-making
2.
•
Difficulty in simulating thought processes
Views, beliefs and experience may differ markedly between
two people (even when one knows the other well).
•
Placing oneself in another’s mental and physical situation
to simulate that person’s decision-making process is “close
to unachievable” (Wrigley, 2007).
Assumes one’s mental processes behave the same way
as the other person’s.
In reality, that may not be the case.
.
Issues in proxy decision-making
3.
•
Emotional burden on proxy decision-maker
Caring for very ill or dying family members and deciding on
their behalf is stressful …
and can strain personal well-being and familial ties.
•
Responsibility of proxy decision-making can impact proxies
adversely for a considerable period
ranging from several months to a few years.
.
Issues in proxy decision-making
3.
•
Emotional burden on proxy decision-maker
Typically, proxies experience:
Stress
Anxiety
Guilt
Depression
Family
conflict
Which …
•
may undermine proxy’s judgement and accuracy.
•
is at odds with the patient’s preference not to burden their
loved ones (Wendler, D., & Rid, A. (2011). Annals of Internal
Medicine, 154(5):336-346).
Improving proxy decision-making
1.
•
Better proxy-clinician communication
Advantageous for proxies if clinicians were available to
answer questions and extend emotional support before
proxy makes decisions.
•
Important for proxies to receive accurate information about
their loved one’s condition and prognosis in lay terms.
•
Better understanding of illness facilitates better decisionmaking.
Improving proxy decision-making
2.
•
Identify and address stress factors for proxy
Clinicians who develop an awareness of ethical issues from
proxy’s perspective
go some way in helping proxy avoid making unwise
(treatment) decisions.
•
Give proxy extra time to make a decision proxy is
comfortable with
beneficial but invariably challenging (especially in a public
hospital setting where there is a high demand for beds).
Improving proxy decision-making
3.
•
•
Earlier execution of Enduring Power of Attorney
(EPOA)
At the onset of dementia, many patients are still capable of
making decisions and expressing their preferences about
future care and treatment.
Problems can arise when the execution of the EPOA is left
until the late stages of dementia.
Improving proxy decision-making
4.
•
Treat the dementia patient with respect
How a person is viewed impacts on the care given to that
person.
•
Common family concern: Whether their loved ones will be
treated with respect.
•
Dementia patient does not lose their personhood
regardless of the severity of their illness.
What about Advance Directives?
•
There are benefits in thinking ahead about possible
issues that might arise as one’s mental capacity
diminishes.
•
But documenting patients’ preferences do not
automatically facilitate accurate decisions by the proxy.
•
On the contrary, once something is encoded in a form,
that may provide a pretext not to discuss / communicate
about end of life decisions.
What about Advance Directives?
Key issue: Planning for care and treatment in the event
of future incapacity.
Advance Care Planning
• Where patients, their families and healthcare professionals
engage in discussion about the patient’s end-of-life
treatment preferences.
• Discussions should focus on aspects of ageing and dying
that matter to the patient
Rather than specific medical treatments alone.
Conclusion
 Proxy is unlikely to reflect the patient’s wishes accurately
and consistently.
 Clinicians and healthcare institutions have a role in
supporting through the decision-making process.
 Dementia patients do not lose their personhood
regardless of the severity of their dementia.
 Treating dementia patients with respect is amongst the
most important aspect of caring for them.
Questions & Comments