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Advance Care Planning

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 Key messages

  • Advance care planning is a right of all people, and is an ongoing, values-directed discussion involving health professionals, patients, and their family or other agent.
  • Patients expect and are happy for their doctors to initiate conversations about advance care planning however the conversations may often be performed by other health professionals.
  • Advance care planning requires that patients are given accurate and sensitively provided information about their illness and health care options and prognosis; opportunities to discuss their wishes with their doctors and their chosen decision-maker/s; and that their wishes are accurately documented, regularly updated, and can be accessed as needed.
  • Encouraging patients to choose a surrogate decision-maker, and discuss their values and preferences with them, is an important component of advance care planning. The surrogate decision-maker also requires support and information to fulfill this role.
  • Advance care planning should begin early in a patient's illness, and be a part of routine clinical care, sometimes completely healthy individuals want to do advance care planning.
  • Health system processes are crucial for effective advance care planning, and health system-wide changes are likely to be needed for advance care planning to become an integral part of routine clinical care.
  • Statutory processes that formalise the role of written advance directives and of surrogate decision-makers vary in different states.

Background

Advance care planning is the process by which patients make decisions that can guide their future health care, if they become unable to speak for themselves. It is based on the ethical principle of respect for patient autonomy. Advance care plans reflect patients’ own values and concerns, and require patients to understand their medical condition, and also the benefits and burdens of possible treatments. They are important in guiding decision-making at the time when a patient is too unwell to make their own decisions, or is unable to communicate.

Advance care planning requires conversations between patients, their doctors, and their surrogate decision-makers about how they would like to be cared for, and so the communication skills of health care providers are a very important factor in their success. Advance care planning can include the use of formal advance directives – which are written documents that may be legally binding to varying degrees in different states (e.g. a Refusal of Treatment Certificate in Victoria, an Advance Health Directive in Queensland, and the Natural Death Certificate in the Northern Territory). Nonetheless, advance care planning – documentation of a patient's wishes - can also occur without using these legal processes.
 
Some of the major factors that are important for advance care planning will be covered here:

Communication issues in advance care planning
Surrogate decision-makers
Health system factors in advance care planning 
Medico-legal context

Active research areas / controversies

  • Advance care planning is an extremely complex health system activity. There are many barriers in the way of developing good processes - patient preferences change, and are difficult to document accurately; end of life care may unfold without obvious decision points but rather as an outcome of protocols and usual care; seriously ill patients and their families, and also their treating doctors, often do not want to have difficult conversations; and, in a crisis, decision-making by families may be driven by emotion rather than being rational or values-based. [1]
  • A large research project in the US, the SUPPORT study, demonstrated that even when patients do actively participate in advance care planning, major changes in health services are needed to ensure that their wishes will be respected. [1]
  • An advance care planning program used in Australia, called Respecting Patient Choices has completed a randomised controlled trial of its approach and shown that advance care planning improves end of life care and patient and family satisfaction and reduces stress, anxiety and depression in surviving relatives. [2]
  • Relying on written advance directives as the dominant approach to advance care planning is not adequate. Advance directives alone do not stimulate conversations between clinicians and their patients, they are frequently non-specific, and they have little impact on resuscitation decisions. [3] The rate of completion of formal written advance directives in the Australian general population is low. Evaluating the effectiveness of advance care planning by looking only at rates of completion of written advance directives is inadequate, and a range of outcomes must be studied.
  • There is a significant program of research looking at unmet needs and communication challenges for cancer patients of non-English speaking backgrounds in Australia. This research looks at specific cultural differences in health attitudes, describing concerns about how prognosis is communicated, and issues related to the role of interpreters in health communication and decision-making.
  • There are some populations where there exist specific concerns related to ability to participate in health care decision-making. These include patients with dementia or mental health problems that affect their ability to consent.
  • Life-limiting health conditions may have very different illness trajectories, requiring specific triggers for, and approaches to, advance care planning. [3] Research is needed to improve current practices, which fail to include many who could benefit from advance care planning.

References

  1. Lynn J, Arkes HR, Stevens M, Cohn F, Koenig B, Fox E, et at. Rethinking fundamental assumptions: SUPPORT's implications for future reform. Study to Understand Prognoses and Preferences and Risks of Treatment. J Am Geriatr Soc. 2000 May;48(5 Suppl):S214-21.
  2. Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised controlled trial. BMJ. 2010 Mar 23;340:c1345.
  3. Street A, Ottmann G. State of the science review of advance care planning models. Bundoora, VIC: La Trobe University; 2006.

This page was reviewed and rewritten on 28 March 2011