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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.

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2012 aabhl conference
2012 AABHL Conference

Deciding for dementia patients –

the challenges and responsibilities


Bioethics Centre

University of Otago

  • 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-of-life care.

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
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
The challenges of caring for the elderly
  • Caring for the elderly raises some of the most challenging ethical, medicaland 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
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
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
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
Issues in proxy decision-making
  • 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-thirdof all cases (Shalowitz, D.I., Garrett-Meyer, 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 making1
Issues in proxy decision-making
  • 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 making2
Issues in proxy decision-making
  • 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 making3
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 making4
Issues in proxy decision-making
  • Emotional burden on proxy decision-maker
  • Typically, proxies experience:

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
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 decision-making.
improving proxy decision making1
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 making2
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 making3
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
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 directives1
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.

  • 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.