Dying in the 21 st Century

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2 Dying in the 21 st Century ensuring appropriate care at the end of life is everyone s business Dr Will Cairns Statewide Clinical Lead for Care at the End of Life

3 Qld Statewide Strategy for E-o-L Care State parliamentary committee report Strategy created in response Qhealth, Qld Clinical Senate, HCQ Apolitical with executive buy-in Long-term goal of cultural change Not just Qld health RACF, 1 0 care, private hospitals, community generally. Aim is to improve the ways that we deal with death both as patients and clinicians In some ways the community is ahead of us

4 1. Improve death awareness and encourage open discussion and ACP in the community generally 2. Identify patients for whom ACP and goals of care should be considered early 3. Improve skills of all clinicians in communication about death dying, and the provision of care at the end of life 4. Ensure appropriate palliative care is available across the state

5 Anpalahan M. and, S. J. Gibson S.J. Geriatric syndromes as predictors of adverse outcomes of hospitalization Internal Medicine Journal (1), death in hospital or during 3 months post discharge - an adverse outcome of hospital admission for a geriatric population over the age of 75.

6 Context and history

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15 Another perspective For 10-20,000 generations ( ,000 yrs) median human life-expectancy was about 40 yrs 30-40% of deaths in childhood - < 10 Over 6-7 generations life-expectancy has doubled to 80 years Now 90% of deaths >65 years of age The paradigm that reduced death in childhood does not work for the elderly

16 Maximum life-expectancy steady at around 115

17 Three phases of mortality Before 200 years ago You got sick and you got better, or you died From then until the 21 st century Early death progressively eliminated, initially by public health measures, and latterly by health technology Death now predominantly due to degeneration in our old age and by us approaching our individual maximum life-expectancy From now on (until it all falls apart) Persist with those measures that prolong life with quality, but integrate appropriate care for those who have come to the end of their life Death will come to be explicitly re-recognised as a normal part of life this is what we are doing

18 Dennis Campbell Knowing our patients and establishing relationships Developing the skills to talk about death and dying Opening the door for our patient and/or family Allowing our patient to step through when they open the door Knowing our community Helping our patient to feel safe

19 Why is it important to be able to talk about bad stuff? To help patients to better understand their hopes, goals and preferences To help patients make better choices To help patients and their families to feel safe To help us to gain greater satisfaction from our work To make our lives easier and less stressful

20 Remember Generally and at some level our patients already knows what is going on They may be relieved that at last someone is talking to them Uncertainty is lessened Imagination may generate more fear than reality Knowledge is power and the patient can regain some sense of control It is not our information, it is theirs

21 If we don t know what people want we may well not do the right thing by them. An acute situation is best helped by prior planning but that is not always available Still important to find out what our patient wants if at all possible May seem like speed-dating but when that is all the time we have it is a necessity

22 Making quality end of life care available to all Encourage our patients to plan early We should all contemplate our mortality and our goals and wishes Find our what they hope for Set achievable goals and only offer realistic treatments Discuss what to do with the patient Discuss what can be done for them if their preferred option is not possible

23 Advance Care Planning Preparing for death can (?should) be a lifelong and progressive process Contemplating our mortality and choices A - appointing an EPoA C - communicating our wishes D - documenting our choices C - circulating our documents What you do depends on your age/health

24 Questions for patients What preparations have you made? Do you have a Will? Have you appointed an EPOA and who is your decision maker? Have you engaged in Advance Care Planning considered you goals, values and preferences, and how you wish to be cared for at the end of your life, and told your family Statement of Choices Do you have an Advance Health Directive? Have we written an Acute Resuscitation Plan?

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27 Kaplan Meier Estimates of Survival According to Study Group. Temel JS et al. N Engl J Med 2010;363:

28 Good Medical Practice: a code of conduct for doctors in Australia In caring for patients towards the end of their life, good medical practice involves: Understanding the limits of medicine in prolonging life and recognising when efforts to prolong life may not benefit the patient. Understanding that you do not have a duty to try to prolong life at all cost. However, you do have a duty to know when not to initiate and when to cease attempts at prolonging life, while ensuring that your patients receive appropriate relief from distress.

29 Good Medical Practice Accepting that patients have the right to refuse medical treatment or to request the withdrawal of treatment already started. Respecting different cultural practices related to death and dying. Facilitating advance care planning. Providing or arranging appropriate palliative care.

30 The value of approaching death as normal is that it allows us to focus greater attention on the goal of quality of life rather than life prolongation, and to embrace palliative care earlier when it reflects the reality of a patient s medical conditions. This can lift a great burden of unfulfillable expectations from the shoulders of patients, families and, perhaps most significantly in the context of this article, from health workers.

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