Judith Rietjens and Ida Korfage are both Assistant Professors in the department of Public Health of Erasmus MC in Rotterdam, the Netherlands. Together, they chair the European Association for Palliative Care (EAPC) taskforce on advance care planning. In this blog post, they tell about the background and the content of their white paper published in the September issue of The Lancet Oncology.
After several years of hard work, the EAPC taskforce on advance care planning is proud to have published its white paper in The Lancet Oncology – read the summary here.
A lack of consensus regarding the definition of advance care planning (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. In our white paper, we have developed two consensus definitions: an extended definition to be used in, for instance, research and education of healthcare staff, and a brief definition for practical use. We also present 41 recommendations for ACP that can be used across a broad spectrum of patient populations, disease categories, and cultures.
To develop the definitions and the recommendations carefully, we conducted a formal consensus procedure. With our dedicated taskforce, we conducted a five-round Delphi study. Our multidisciplinary Delphi panel consisted of more than 100 experts from Europe, North America, and Australia.
The Box presents the extended version of our consensus definition of ACP. A central element 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: the scope of ACP is broader than the physical domain alone and ACP is not limited to specific patient groups.
Box: Consensus definition of advance care planning (extended version)
To give a few 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.
Developing our white paper has been an exciting journey. Navigating the complex topic of advance care planning was inspiring, and sometimes a Sisyphean task. We hope our work is useful in clinical practice, ACP policy and research, and encourage its translation and further dissemination and implementation.
Links and Resources
- Download the full text of the article from The Lancet Oncology. (You will need to purchase a subscription to download the full-text article).
- Download a free copy of the Draft white paper on Advance Care Planning Rietjens et al.
- Contact the authors by email: Judith Rietjens and Ida Korfage.
- The EAPC taskforce on advance care planning. (You can download the draft white paper from this webpage).
- Read more posts about advance care planning on the EAPC Blog.