Advance care planning: definitions and recommendations for its use

By Judith Rietjens and Ida Korfage 

Image credit: Clock by Sonja Langford. CC0 Public Domain via Unsplash.

Advance Care Planning (ACP) (read this freely available chapter) enables individuals to make plans about their future health care. A lack of consensus regarding the definition of ACP, and a lack of practice recommendations that are applicable to a variety of cultural settings and personal values, have hindered the development of ACP programmes and the evaluation of ACP’s effectiveness.

Two consensus definitions were developed following research; an extended definition to be used in, for instance, research and education of healthcare staff, and a brief definition for practical use. The recommendations from the research can be used across a broad spectrum of patient populations, disease categories, and cultures.

With a dedicated taskforce, a five-round Delphi study was conducted. The multidisciplinary Delphi panel consisted of more than 100 experts from Europe, North America, and Australia. A central element of the extended version of the consensus definition (see Box 1) is that ACP is considered to be a process that includes identifying values and defining goals and preferences for future medical treatment and care, and discussing these with family and healthcare providers. It may include the documentation of preferences or the appointment of a proxy decision-maker. These preferences should be regularly reviewed. Other key points are that the scope of ACP is broader than the physical domain alone and ACP is not limited to specific patient groups.

Box 1: Consensus definition of advance care planning (extended version)

Advance care planning enables individuals who have decisional capacity to identify their values, to reflect upon the meanings and consequences of serious illness scenarios, to define goals and preferences for future medical treatment and care, and to discuss these with family and healthcare providers. ACP addresses individuals’ concerns across the physical, psychological, social, and spiritual domains. It encourages individuals to identify a personal representative and to record and regularly review any preferences, so that their preferences can be taken into account should they at some point be unable to make their own decisions.

There were 41 recommendations developed for ACP, pertaining to several domains: elements, roles and tasks, timing, policy and regulation, and evaluation. Panel members indicated to which extent they agreed with each of the two definitions and recommendations (1. Strongly agree to 7. Strongly disagree).

These include the following examples: 

  • Recommendation 2: ACP should be adapted to the individual’s readiness to engage in the ACP process.
  • Recommendation 17: The initiation of ACP (i.e., the exploration of the individual’s experiences, knowledge, personal values, and concerns) can occur in healthcare settings or non-healthcare settings.
  • Recommendation 19: Individuals can engage in ACP at any stage of their life, but its content can be more targeted as their health condition worsens or as they age.
  • Recommendation 23: Healthcare organisations should develop potential triggers for the initiation of ACP including, but not limited to, age, degree of illness, and transitions in care.

It is hopeful the work carried out is useful in clinical practice, ACP policy and research, and its translation and further dissemination and implementation is encouraged.

This article is a report following Judith Rietjens and Ida Korfage’s white paper ‘Definition and recommendations for advance care planning: An international consensus’ published in The Lancet Oncology in September 2017.

Judith Rietjens works as an associate professor at the Department of Public Health of Erasmus MC, the Netherlands. She is health scientist by training. Her work focuses on patient and family engagement in medical care and decision-making, in particular in the last phase of life.

Ida Korfage works as an assistant professor at the Department of Public Health of Erasmus MC, the Netherlands. She is epidemiologist by training. Her work focuses on shared decision-making and quality of life.

Judith and Ida are involved in several local, national and international projects. They are co-PI of a EU FP7 funded international study ACTION about advance care planning in Europe and together chair the EAPC taskforce about advance care planning.

Browse other chapters surrounding advance care planning on Oxford Medicine Online.

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