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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

KannyOoi

Bioethics Centre

University of Otago

background
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-of-life care.
acknowledgements
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
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).

.

Guilt

Depression

Anxiety

Family

conflict

Stress

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.

conclusion
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.
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