Example title for notes and handouts 15 April 2017 Public Health Approaches to Advance Care Planning: Bruce Rumbold, 170610 Palliative Care Unit, School of Public Health, La Trobe University, Victoria Example footer for notes and handouts

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

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

Health Promoting Palliative Care Kellehear, A Health Promoting Palliative Care Kellehear, A. (1999) Health Promoting Palliative Care. Melbourne, Oxford University Press. Ottawa Charter HPPC 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. 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

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

The questions 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)? Consortium logo

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

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

Example title for notes and handouts 15 April 2017 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 ACP – A process that recognises an individual’s right to autonomy in making their own health care decisions Aims to ensure an individual’s healthcare wishes will be respected in the event that they become incompetent and unable to make/express their choices for themselves Conducted in consultation with an individuals’ family, friends and the healthcare team Common elements are the completion of a statement of choices specifying types of treatment a person would and would not like to receive ie. Resuscitation orders, artificial nutrition and hydration Also invovles appointment of a surrogate decision maker who is aware of a person’s wishes and can enact these on their behalf should they become incompetent and unable to express their wishes for themselves Page 9 Example footer for notes and handouts

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 individuals and as members of voluntary sector organizations. Ideally, the broader societal dialogue about ACP 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.

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.

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

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

Change processes Regular review Decision making Reflective processes Collaborative discussion Changed knowledge & attitudes

Developing ACP decisions ACP Decision review ACP Decision making ACP Decision strategies ACP Decision support ACP Decision environment

Café conversations http://www.theworldcafe.com/

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

Changing attitudes and knowledge

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

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.

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.

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.

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

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

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

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.