Relatives’ experiences with Advance Care Planning

Anouk Overbeek is a postdoctoral researcher at the Erasmus University Rotterdam, The Netherlands. With, among others, Agnes van der Heide, Judith Rietjens and Ida Korfage, she conducted a randomised controlled trial on the effects of Advance Care Planning in frail older people and their relatives.

Anouk Overbeek

A month ago, my lovely grandmother died at the age of 88. Due to several conversations about her preferences concerning medical treatment and care, we knew that she would prefer comfort care to life-extending treatments in case of serious illness. When she was suffering from bladder cancer and no longer able to make medical decisions on her own, we decided to focus the goals of her medical treatment and care on providing relief from her symptoms as much as possible and improving her quality of life. In this way, we were able to honour and follow her preferences. We experienced her dying process as calm and peaceful.

Because of dementia or loss of consciousness, people can become unable to decide for themselves and increasingly relatives may end up having to make medical decisions on behalf of their loved one. Therefore, it is useful for relatives to know their goals and preferences concerning medical treatment and care.

Advance Care Planning (ACP) is a formalized communication process that

enables individuals to define goals and preferences for future medical treatment and care, to discuss these goals and preferences with family and healthcare providers, and to record and review these preferences if appropriate.”

When relatives engage in ACP conversations, they can become familiar with individuals’ goals and preferences and their own potential role in the decision-making process.

In our randomised controlled trial in The Netherlands among 200 frail older people, we studied experiences with, and outcomes of, ACP in bereaved relatives. Our study findings have recently been published in Age and Ageing.

We found no significant effect of ACP on relatives’ levels of satisfaction, anxiety and depression. However, bereaved relatives felt they had been adequately prepared for decision-making following facilitated ACP conversations. According to relatives, ACP provided clarity concerning the individuals’ preferences for medical treatment and care, and the decision that had to be made on behalf of their loved one:

Yes, a lot of topics emerged during that conversation. My mother indicated clearly what she wanted to happen and what she did not want to happen. Especially what she did not want to happen. That was also documented in that advance directive, so it was really clear to me.

Find out more at the 7thACP-I Conference

These, as well as other research results about the perspectives of relatives towards ACP, will be presented during the 7th ACP-I Conference in Rotterdam, The Netherlands, in the parallel session ‘ACP in Family Caregivers’ on March 15, 2019. The ACP-I Conference is aimed at sharing and discussing new research findings and innovative approaches in the area of ACP. The event is targeted towards researchers, clinicians, policy makers and ethicists.

Links and resources

If you’re coming to Berlin for the 16th EAPC World Congress, please join us at the Advance Care Planning presentations…

Friday 24 May 2019. Parallel Session at 11:15-12:45 in room ‘Paris’. Implementing ACP across the Healthcare System in Europe and the US: the Results of Three ACP Trials chaired by Sheila Payne and Luc Deliens.

11:15-11:45. Improving the Initiation of ACP in General Practice: the Results of a Phase II Pilot Trial, Aline DeVleminck (Belgium)
11:45-12:15. Improving Advance Care Planning with Easy-to-Use, Patient-Facing, Evidence-Based Tools: The PREPARE Program, Rebecca Sudore (United States).
12:15-12:45. Advance Care Planning in Patients with Advanced Cancer, Ida Korfage (Netherlands).

Friday 24 May 2019. Free communications session on Advance Care Planning at 16:45-18:15 in room ‘Estrel A’ chaired by Dr Daniela Mosoiu and Malgorzata Krajnik. With presenters from Austria, Germany, Ireland, Singapore and the US.

View the full congress programme here.
Enter the EAPC Photography Competition: New Images of Palliative Care. Find out more here.


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