Bruce Rumbold, 170610

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

Public Health Approaches to Advance Care Planning:

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 ProfileStaff trained in social and spiritual care disciplinesService:Partnerships/joint programs with all but one Victorian health regionTraining/consultation with all Victorian services part of DH health service agreement

Teaching:Undergraduate electives in death, dying, grief and illness & spiritualityGraduate entry program Bachelor of Pastoral CareGraduate Certificate/Postgraduate Diploma HPPC by DE

Research:Higher degrees by researchSocial and spiritual care modelsCommunity capacity building strategies

Health Promoting Palliative CareKellehear, A. (1999) Health Promoting Palliative Care. Melbourne, Oxford University Press.

Ottawa Charter1. 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.

HPPC1. Provide education and

information for health, dying and death;

2. Provide social support, both personal & communal

3. Encourage interpersonal reorientation;

4. Encourage reorientation of palliative care services;

5. 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

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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)?

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

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What is Advance Care PlanningACP 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.

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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

• 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.

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How can we make this work?Cannot keep adding professional services: Need

Community development approach Build and strengthen partnerships Create more supportive settings

Health Care Policies

Referral

AdmissionAssessment

Client care plan

EducationalProcesses

Orientation program

* Flexible learning* Mentorship program*Competancies

Continuing education

QualityProcesses

Position description

Audit* Education * Documentation * Family follow-up

Performanceappraisal

Incorporating Advance Care Planninginto Community Palliative Care Services

Discharge plan

DocumentationSystems

Advanced Communication Skills

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

Change processes

Developing ACP decisions

Café conversationshttp://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.