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White paper on advance care planning


Timely and efficient communication is an important prerequisite for appropriate care that adequately addresses patients’ needs and preferences. However, research findings consistently demonstrate that communication between physicians, patients, and their relatives is complex. Physicians are often uncertain about their patients’ values and preferences, and relatives may feel stressed, uncertain, and reluctant to relinquish treatment aimed at sustaining life, even if cure is no longer possible.

Advance care planning (ACP) is a formalized process of communication between patients, relatives and professional caregivers. It is a voluntary process of discussion and review enabling individuals to express, and, if they wish, record views, values and specific treatment choices to inform their future care. ACP promotes the documentation of patients’ preferences in their medical file, the communication of these preferences to family and friends, and the periodic review of preferences as circumstances change. It has the potential to empower patients, to foster autonomy, to improve the quality of decision making for patients and relatives, to increase the extent to which care is addressing patients’ needs and preferences, and to reduce patients’ symptom burden.

There has been a growing attention for advance care planning since the 1990’s. In the United States, the Patient Self Determination Act in 1991 embodied the use of advance directives to promote adequate communication. From the mid-nineties, ACP evolved from advance directives to a more comprehensive approach where filling in an advance directive is only one part of a process of communication. Modern ACP programs aim at informing and empowering patients to express their preferences about their current and future treatment.

Objectives of the white paper

1. To summarize the existing evidence for the following 5 key issues:

  • Conceptualizing (led by Jane Seymour)
  • ACP content (led by Daisy Janssen)
  • ACP system (led by Ralf Jox)
  • Measurements (led by Rebecca Sudore)
  • Challenges and concerns of ACP (led by Margaret Drickamer)

2. To present/provide a set of recommendations considering the implementation of evidence based policy making for each of these 5 issues; 

3. To provide guidance for future research about ACP by presenting a research agenda.


Healthcare workers, researchers, policy makers, patients, relatives


Literature reviews followed by Delphi study.



Time Method

June 2014

Delphi round 1: Invited expert meeting at NIAS (Netherlands Institute for Advanced Study) in Wassenaar, the Netherlands. Participants have defined the 5 key aspects of ACP that will be discussed in the white paper. 
Sept - Dec 2014

Listing experts Delphi panel.

Nov 2014 - Jan 2015 

Gathering evidence for each of the themes according to agreed approach. Drafting a set of recommendations for each key aspect.
Spring 2015

Agreement on recommendations among taskforce and project group.

Summer 2015

Delphi round 2 among expert panel. 

Following steps:


Winter 2015 / 2016

Delphi round 3 among expert panel. 

Spring 2016

Analysis and drafting paper, comments of EAPC board.

Summer 2016

Submission of white paper.


Linking to other activities


Bud Hammes, Luciano Orsi, Judith Rietjens, Ralf Jox, Margaret Drickamer, Daisy Janssen, Rebecca Sudore, Dirk Houttekier, Agnes van der Heide, Ida Korfage



Judith Rietjens
Department of Public Health
to contact by email please click here

Ida Korfage
to contact by email please click here


Jane Seymour (UK)
Sheila Payne (UK)
Luciano Orsi (IT)
Ralf Jox (DE)
Rebecca Sudore (USA)
Daisy Janssens (NL)
Bud Hammes (USA)
Michael Connolly (IR)

Extended project group

Agnes van der Heide (NL)
Dirk Houttekier (BE)
Hans van Delden (NL)
Margaret Drickamer (USA)
Daren Heyland (CA)

Expert panel

The panel will exist of about 50-75 international experts in several domains deemed important for this white paper (like advance care planning, palliative care, elderly care, oncology) representing different relevant disciplines (like physicians, nurses, psychologists, researchers).  The panel will be comprised through the networks of the task force, project group and the EAPC.

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