Bruce Rumbold, 170610 Palliative Care Unit, School of Public Health, La Trobe University, Victoria

1. Public Health Approaches to Advance Care Planning: Bruce Rumbold, 170610 Palliative Care Unit, School of Public Health, La Trobe University, Victoria

2. Seminar Outline • Introduction to ‘the series’: then to this seminar • Why a public health approach? • Recent phases in end of life care • A model for end of life decision making • Strategies for decision making • Research and evaluation tasks • Conclusion & Discussion

3. LTU Palliative Care Unit Profile Staff trained in social and spiritual care disciplines Service: Partnerships/joint programs with all but one Victorian health region Training/consultation with all Victorian services part of DH health service agreement Teaching: Undergraduate electives in death, dying, grief and illness & spirituality Graduate entry program Bachelor of Pastoral Care Graduate Certificate/Postgraduate Diploma HPPC by DE Research: Higher degrees by research Social and spiritual care models Community capacity building strategies

4. Health Promoting Palliative CareKellehear, A. (1999) Health Promoting Palliative Care. Melbourne, Oxford University Press. Ottawa Charter HPPC Provide education and information for health, dying and death; Provide social support, both personal & communal Encourage interpersonal reorientation; Encourage reorientation of palliative care services; Create policies that do not separate dying from living 1. Enable, mediate, advocate in pursuit of healthy public policies and practices; 2. Create supportive environments; 3. Strengthen community action; 4. Develop personal skills; 5. Reorient health services.

5. Why public health approach? • The epidemiology of dying shows that palliative care addresses only a proportion of end of life needs. • Population health models typically used to locate palliative care within end of life care frameworks • Public health: two streams – individual and structural

6. Thequestions we’re asking.. • How can we develop and support flexible ideas of “a good death” and minimise the negative impact? • How can the wealth of knowledge that has been accumulated by palliative care programs become more available to the community? • How can end-of life issues become more a part of life (than just the end)?

7. Phases in EoL Care • Revival: the hospice movement • Mainstreaming: hospice becomes palliative care (and increasingly palliative medicine) • Recognition of limitations to palliative care practice models: the emergence of needs-based population models for end of life care • Advance Care Planning as a government-preferred strategy for organizing end of life care

8. What is Advance Care Planning • ACP is a process of on-going communication. It enables individuals to : • maintain a sense of control over their future • express wishes about their future health care in consultation with: • health care providers, • family members and • other important people in their lives. Page 8

9. What does ACP involve? • Self-determination • Respect for people’s wishes if unable to make these decisions for themselves in the future • Consultation with individuals, their family, friends and the healthcare team • Appointment of a Substitute Decision Maker (Surrogate decision maker; agent; proxy; person responsible) • Involves (discussion leading to) Statement Of Choices • Revision of plan as appropriate Page 9

10. Although advance care planning is generally seen as a health care issue, it goes beyond healthcare to encompass the legal sector, social services and perspectives of citizens both as individualsand as members of voluntary sector organizations. Ideally, the broader societal dialogue aboutACP would include all of these sectors. Implementation Guide to Advance Care Planning in Canada: a case study of two health authorities [Internet]. 2008. Available from: http://www.hc-sc.gc.ca/hcs-sss/pubs/palliat/2008-acp-guide-pps/index-eng.php.

11. Ist International Conference on Advance Care Planning, Melbourne, May 2010 • Focus on ACP programs; not on processes that make programs credible or effective. • Focus on end of life decisions; not on contexts that make it possible (or impossible) to decide. • Focus on medical needs whilst dying; little about what’s needed to live constructively to the end. • Focus on professional support to make end of life decisions; little attention to mobilising the support of the people who really know you.

13. How can we make this work? • Cannot keep adding professional services: Need • Community development approach • Build and strengthen partnerships • Create more supportive settings

14. Street AF & Ottman, G, ACP The State of the Science review www.careserach.com.au/ Page 14

15. Change processes

16. Developing ACP decisions

17. Café conversationshttp://www.theworldcafe.com/

18. DECISION ENVIRONMENT: Four Funerals in One Day Play • A short play about the importance and value of stories in Palliative Care and the value of talking to loved ones about your preferences for end of life care. • Presented at community venues with facilitated discussion by cancer & palliative care staff

19. Changing attitudes and knowledge

20. DECISION SUPPORT:How to Care, What to Say • Skills for caregivers: professionals, family members, friends, ‘unintentional hearers’

21. DECISION STRATEGIES: Evaluative Life reviews combined with ACP discussion • Combining ACP discussion in an evaluative life review can assist people to consider their life in focus and identify key values, trusted decision makers and express future care wishes.

22. DECISION MAKING: GP letters Letters to GPs with the wishes expressed as part of the ELR/ACP process Volunteers organise for the person and their trusted decision maker to meet with a health professional or lawyer to complete a legal document.

23. Research & Evaluation • Community capacity can be measured: but the link between interventions carried out and capacity produced are not simple. • Network analysis to identify pathways by which interventions contribute to capacity. • Comparative case studies to identify key enabler of and barriers to systemic change. • Action research to lead decision making through the layers that link general awareness with specific formalised end of life plans, policy change, etc.

24. Network studies • What are the effects of interventions? • Changed behaviours • Changed understanding • Changed relationships • Changed services • Changed governance

25. Case study comparisons • What capacities are being developed? • Appropriate and timely use of services • Effective informal care • Partnerships with services and community organizations in end of life care • Comparisons: • Between health regions • Across states (Australia), regions (UK) • Internationally

26. Dilemmas in public health • Access to health care does not necessarily result in health • Social distance, resulting from social inequality, is a key (negative) health determinant • Declining public ownership of public services • Risk discourse further individualising structural/material determinants of health • Policy, planning and research address today’s, not tomorrow’s, populations

27. Governance issues • Major health issues and major health determinants (are deliberated) in fora to which the public health community has little or no access, and is not prepared for - such as foreign policy, security policy, economic policy, and trade policy. • Kickbusch, I. (2006) ‘Mapping the future of public health: action on global health’ Canadian Journal of Public Health 97 (1), 6-8.