Caring for people at the end of their life in the 21 st century

Transcription

1 Caring for people at the end of their life in the 21 st century context, culture and clinical skills Dr Will Cairns Statewide Clinical Lead for Care at the End of Life

2 Statewide Strategy for EoL Care Goal is to change the culture of both the community and the healthcare system Bipartisan political support Executive engagement Promotion, education and support in all HHSs Community education and engagement e.g. media campaign for ACP

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

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5 Context

6 History of human health For 10-20,000 generations ( ,000 yrs) median human life-expectancy was about 40 yrs 30-40% of deaths in childhood - < 10 Before 200 years ago You got sick and you got better, or you died How had cultures around the world evolved to deal with these realities?

7 From: Cairns, Will Death Rules: how death shapes life on earth and what it means for us 2015, an ebook available on Kindle, ibook, etc.

8 From: Cairns, Will Death Rules: how death shapes life on earth and what it means for us 2015, an ebook available on Kindle, ibook, etc.

9 From: Cairns, Will Death Rules: how death shapes life on earth and what it means for us 2015, an ebook available on Kindle, ibook, etc.

10 Maximum, maximum lifeexpectancy about 115 years

11 Distribution of maximum life-expectancies? 65 years ~115 years

12 History of human health 2 Over 6-7 generations median life-expectancy has doubled to 80 years Over that time and until the 21 st century Early death progressively and dramatically reduced, initially by public health measures, and latterly by health technology Now ~90% of deaths >65 years of age Paradigm that dramatically reduced death in childhood does not work for the elderly Approaching our individual maximum lifeexpectancy law of diminishing returns

13 Culture

14 Culture - echoes from the past 1 st world healthcare is driven by values that evolved for another context and are embedded at the core of our being They evolved when we could wish that those we love did not die, and yet could do nothing about it New paradigm - we can delay death, but find we have not escaped distress Life prolongation is (often) applied with little thought Individual and community interests are not always the same

15 From: Cairns, Will Death Rules: how death shapes life on earth and what it means for us 2015, an ebook available on Kindle, ibook, etc.

16 History of human health 3 How might our new circumstances impact on our communities and culture? What cultural downsides might there be? What adaptations might appear? What challenges does this pose for us? How might we adapt to this circumstance? Can we predict our culture of the future?

17 Culture What is culture and where does it come from? What does it do? How can we understand it? How does it change?

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19 Culture What is culture and where does it come from? What does it do? How can we understand it? How does it change? Consideration of cultural change as an evolutionary process but over what time frame

20 Can we work out where we want to be and how to get there? Do we understand which values and beliefs (as culture) we should be promoting to so as to meet the needs and realities of our future? Can we plan and implement cultural change? How can we persuade people to change their beliefs? Culture resists change.

21 Understanding culture in context Based on the need to adapt to a new paradigm of a finite life Death in old age (mostly) with a maximum life expectancy of ~115 Set aside values and behaviours that evolved for a different time From now on (unless we go backwards) To persist with those measures that prolong life with quality To explicitly integrate death as a normal part of life, mostly, but not always, in old age

22 Clinical skills for the future viability of healthcare

23 Skills for care at the end of life Personal insight and acceptance of mortality Communication skills Symptom management Empathy and support and the ability to help people to feel safe Understanding of balance between lifeprolongation and the relief of suffering that is at the core of healthcare whole-person care

24 Personal reflection Consideration of our own mortality Reflection of how our belief systems can influence the care that we provide to others Preparation for our own health care choices Preparation or our own death, and/or that of family members Nurturing the capacity to listen as others talk about their death, or that of a family member

25 Humanity and personality Projection of personality Warmth Compassion Sincerity Engagement Empathy and support Ability to help people to feel safe That we will look after them whatever happens and that this will continue until they die, and for their family

26 It is much more important to know what sort of patient has a disease than what sort of disease a patient has. - Sir William Osler ( ) Regius Professor of Medicine, Oxford University

27 Osler One remembers a young brother with whooping cough and bronchitis, unable to eat and wholly unresponsive to the blandishments of parents and devoted nurses alike. Clinically it was not an abstruse case, but weapons were few and recovery seemed unlikely.

28 The Regius, about to present for degrees and hard pressed for time, arrived already wearing his doctor s robes (gowns). To a small child this was the advent of a doctor, if doctor it was, from quite a different planet. It was more probably Father Christmas.

29 After a very brief examination this unusual visitor sat down, peeled a peach, sugared it and cut it in pieces. He then presented it bit by bit with a fork to the entranced patient, telling him to eat it up, and that he would not be sick but would find it did him good as it was a most special fruit. Such proved to be the case.

30 As he hurried off Osler, most uncharacteristically, patted my father on the back and said with deep concern I m sorry Ernest but I don t think I shall see the boy again, there s very little chance when they re as bad as that.

31 Happily events turned out otherwise, and for the next forty days this constantly busy man came to see the child, and for each of those forty days he put on his doctor s robes in the the hall before going into the sick room.

32 Communication The art of open communication How do you start a conversation about death? Setting the scene Physical environment Privacy Positioning and posture Words Time Opening the door Follow-up

33 Symptom management Pathophysiology of fatal diseases Clinical assessment History Examination Wisdom in investigation Therapeutics Non-drug therapies Drug therapies Wisdom in therapy non-beneficial treatment Doctrine of double effect

34 NEJM 363;8 August 19 th 2010 Early Palliative Care for Patients with Metastatic Non Small-Cell Lung Cancer Jennifer S. Temel, M.D., Joseph A. Greer, Ph.D., Alona Muzikansky,M.A., Emily R. Gallagher, R.N., Sonal Admane, M.B., B.S., M.P.H., Vicki A. Jackson, M.D., M.P.H., Constance M. Dahlin, A.P.N., Craig D. Blinderman, M.D., Juliet Jacobsen, M.D., William F. Pirl, M.D., M.P.H., J. Andrew Billings, M.D., and Thomas J. Lynch, M.D.

35 Patients with advanced non-small cell lung cancer were treated with either conventional therapy or conventional therapy plus referral and involvement from palliative care

36 Specific attention was paid to assessing physical and psychosocial symptoms, establishing goals of care, assisting with decision making regarding treatment, and coordinating care on the basis of the individual needs of the patient.

37 Temel JS et al. N Engl J Med 2010;363: Twelve-Week Outcomes of Assessments of Mood.

38 Rates of depression also differed significantly between the groups, with approximately half as many patients in the palliative care group as in the standard care group reporting clinically significant depressive symptoms on the HADS,

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

40 Despite receiving less aggressive end-of-life care, patients in the palliative care group had significantly longer survival than those in the standard care group (median survival, 11.6 vs. 8.9 months; P = 0.02) A 30% increase

41 ..., early palliative care led to significant improvements in both quality of life and mood. As compared with patients receiving standard care, patients receiving early palliative care had less aggressive care at the end of life but longer survival.

42 Conclusion Results Better symptom control Symptoms were addressed Less depression Patients felt that they were being listened to and that their issues were being addressed Fewer interventions/less expenditure Patients and their doctors made wiser choices Longer life Perhaps ongoing treatment contributes to dying, or maybe comfortable, contented people live longer ACP in the broad sense

43 Creating balance in healthcare Considering the balance between lifeprolongation and the relief of suffering that is at the core of healthcare whole-person care Maximising the benefits of medical technology Understanding the limits of medical technology to prolong life with quality Integrating the dialogue into day-to-day clinical practice in the care of individual patients It is as important to know when not to do things to people as it is to know how to do them Two weeks in ICU will save you an hour of conversation

44 Our community is changing The spoken words of a computer in the movie Passengers Various treatments are possible, none will meaningfully extend the patient s life.

45 Summary Health systems must adapt to modern realities Modern technology demands whole-person care Dealing with death is everyone s business But when it comes down to it, care at the end of life is simply good practice Communication Clinical skills history and examination Making wise choices Compassion and basic humanity Integrating the inevitability of eventual death as a normal consideration in wise decision-making

46 What I have found working in palliative care is that I have to use all parts of myself in my work, not just the technical. The challenge is to use everything you have, but not to use yourself up. - Junior Doctor

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