Future Care Planning From Policy to Practice. A/Prof Natasha Michael MBChB FAChPM MRCPI MRCGP MSc Director of Palliative Medicine Cabrini Health

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1 Future Care Planning From Policy to Practice A/Prof Natasha Michael MBChB FAChPM MRCPI MRCGP MSc Director of Palliative Medicine Cabrini Health

2 Department of Health Victoria Peter MacCallum Foundation Grant

3 A Novel Idea? the principle is laid down that from the time of diagnosis of eventually fatal illness, three things should be in place (the principles of palliative care): 1. Personal and family support 2. symptom relief 3. advance care planning. Approaching Death Improving Care at the End of Life. Committee on Care at the End of Life. Marilyn J. Field and Christine K. Cassel, Eds.Division of Health Care Services. INSTITUTE OF MEDICINE

4 The National Standards There are 2 key standards that relate to the development and implementation of advance care plans with consumers (I call mine patients): 1. Governance for Safety and Quality in Health Service Organisations which describes the quality framework required for health service organisations to implement safe systems 9. Recognising and Responding to Clinical Deterioration in Acute Health Care which describes the systems and processes to be implemented by health service organisations to respond effectively to patients when their clinical condition deteriorates

5 Three Types of Death: Traditional, Modern and Neo- Modern Death

6 Some current conundrums

7 Paucity of Australian Research

8 Disease Specific ACP Generic Intended for the general public? Hypothetical, irrelevant choices Inadequate prognostic information for patients Decision making in a vacuum Disease Specific more homogenous group (or are they?) Already experiencing illness, scenarios / treatments that they are likely to confront - less hypothetical Can present patients with a narrow range of choices that they are likely to confront More specific prognostic information available Recognises effects of common symptoms such as delirium, pain etc. Singer PA. Disease-specific advanced directives. The lancet 1994;34:

9 Oversimplifying a complex phenomenon Complicating a simple phenomenon

10 Is Advance Care Planning a Complex Intervention? Complex interventions in health care, whether therapeutic or preventative, comprise a number of separate elements which seem essential to the proper functioning of the interventions although the 'active ingredient' of the intervention that is effective is difficult to specify. May et al. BMC Family Prac. 2007

11 Is Advance Care Planning a Complex Intervention? three levels for defining a complex intervention the evidence and theory which inform the intervention the tasks and processes involved in applying the theoretical principles the people with whom, and context within which, the intervention is operationalised. Bradley F, Wiles R et al. BMJ 1999

12 Doctor Family Disease Patient ORGANISATION COMMUNITY Patients do not select or reject diagnostic or therapeutic interventions in a vacuum; they choose interventions according to the clinical context in which they find themselves Brett AS. Limitations of Listing Specific Medical Interventions in Advanced Directives. JAMA Aug 1991;226(6)

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14 The Vignette Technique case vignettes: short stories about hypothetical characters in specified circumstances, to whose situation the interviewee is invited to respond (Finch) Cancer patients at 4 different stages of cancer journey and scenarios of varying degrees of ill health, symptoms and performance status Agreement by expert panel

15 To me the main thing is to stay positive with it like I ve never wanted to think about it but now that you have got me thinking about it its time that maybe I did do something about it (male, 61 yo)

16 Not at the very beginning, (think about ACP) it s not something you d want to dwell on while you re enjoying the day to not think about cancer, cancer, cancer all the time (female, 49 yo) I might change my mind (about ACP decisions) because we hang onto life because I think as long as I can feel I can have emotions I may decide to live, even if I suffered (female, 60 yo) I haven t thought about (ACP) because I think it s pretty normal. naturally they (children) can do it we take care of the parents it s quite natural by Chinese that s what they are bringed up with (male, 58)

17 INTRODUCTION OF ADVANCE CARE PLANNING REJECTION (RE) CONSIDER CONTINUED REJECTION (RE) CONCEPTUALISE RELINQUISH COMMUNICATE CONVERSE (RE) PLAN

18 What is this thing called hope multidimensional dynamic life force characterised by a confident yet uncertain expectation of achieving a future good which, to the hoping person, is realistically possible and personally significant

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20 Caregiver hierarchy Relational identity Caregivers subsidiary care planning / overriding decision making

21 Promoting a Patient- and family-centred approach to ACP Shared decision making relational elements Schuerman, J. Shared decision making. Available from: Accessed: May 6, 2013.

22 Re-examining the principal of autonomy in ACP National Health and Medical Research Council. An ethical principle for integrating palliative care principles into the management of advanced chronic or terminal conditions. September Canberra, Australia.

23 Suggestions for Introducing ACP Timing of introduction variable. Important not to scare Normalised part of care Opportunities to address different ACP components at different illness points & with different people Scenarios can be helpful : It depersonalises it gives you the ability to be the person making the decisions rather than being yourself making decisions. (female, 53 yo)

24 Caregiver information pack Resources access to tick sheets, websites etc. Information on related issues financial, burial Clear prognostic information Support for vulnerable caregivers

25 Time and support to conceptualise ACP Poor overall general public awareness clinical implications Tailored advice in completing ACP Respect the choice to chose not to chose Recognise patients need to significance, belonging and connection with others Dynamic, individualise nature of ACP Routine discussion individual negotiation

26 The How Where When

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28 The Goldilocks Phenomenon

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30 The Oncologist The double bind working simultaneously to extend life while also planning for death you go to an oncologist to be cured, not to be buried

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33 Billings JA. The need for safeguards in advance care planning. Journal of General Internal Medicine 2012;27: What Can Go Wrong with ACP s? Poor patient understanding and recall of their ACP s Hypothetical situations vs. real choices Patients do not appreciate their prognosis Poor concordance of ACP and proxy/md understanding Physicians unduly influence patients ACP s are unavailable, unclear or ignored Preferences change As pts get sicker > likely to accept aggressive care over time. (Fried, J Am Geriatr Soc, 2007)

34 The following are shown with consent from patients

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36 A Friday afternoon presentation

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40 Further Questions What does completing an ACP mean when it is an evolving process? Can a patient s ACP conversation be enough? Appropriate ACP endpoints for many patients may be contemplation or discussions with family, friends, or clinicians. (Sudore et al, JAGS, 2008: 1011) Non-fulfilment of patients wishes due to caregivers developing subsidiary plans and overriding patient desires Need for sensitivity to broader influences on ACP discussions Does ACP reflect and respect some CALD communities cultural practices?

41 Err on the side of preserving life, allowing for clinician judgment in interpreting ACP s failing to respect an ACP harms the patient, but failing to preserve life can cause irreversible harm (Billings, 2012)