2012 AABHL Conference

1. 2012 AABHL Conference Deciding for dementia patients – the challenges and responsibilities KannyOoi Bioethics Centre University of Otago

2. 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.

3. 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.

4. 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

5. 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.

6. 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.

7. 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).

8. 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.

9. 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.

10. 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.

11. 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. .

12. 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. .

13. 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

14. 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.

15. 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).

16. 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.

17. 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.

18. 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.

19. 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.

20. 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.

21. Questions & Comments