Advance care planning for patients with chronic respiratory diseases

Continuing a series of posts from members of the ACTION Consortium about their European study that aims to investigate how to support people with advanced cancer to have a conversation about preferences and wishes.

Lea Jabbarian describes the systematic review about advance care planning for patients with chronic respiratory diseases that she conducted with, among others, Judith Rietjens and Ida Korfage, and which was published in ‘Thorax’.


Lea Jabbarian

Background and aim of the study

Patients with chronic respiratory illnesses experience a complex and often unpredictable disease course. As the disease progresses, a variety of symptoms may occur. Proactive consideration of future goals of care may support adequate medical decision-making in a situation of acute deterioration. A range of professional bodies, such as the British Thoracic Society, acknowledge advance care planning (ACP) as an integral part of cardiopulmonary medicine and encourage timely discussions about goals of care. 

Advance care planning is a means to support patients in identifying their preferences of care, discussing these preferences at a timely and appropriate moment with their relatives and healthcare professionals, and, if desired, documenting them in an advance directive.

In this blog, we focus on our findings on the experiences with and attitudes towards ACP of patients and healthcare professionals (HCPs), and the barriers and facilitators related to engagement in ACP, which is based on our systematic review that has recently been published in Thorax.

Main findings

ACP is surprisingly uncommon in chronic respiratory disease: 12-32 per cent of patients and 20-33 per cent of HCPs report engagement in ACP discussions, while both patients and healthcare professionals express willingness to discuss end-of-life goals of care.

We identified nine barriers preventing engagement in ACP on three different levels:

  • One patient-related barrier was the unpredictable disease course, which makes it difficult to identify the right moment to engage in ACP discussions.
  • A barrier related to HCPswas the self-perceived fear of taking away patients’ hope. This made HCPs hesitant in bringing up discussions about goals of care.
  • Lack of continuity and coordination of care was identified as a system-related barrier. This makes it difficult to identify the person responsible for initiating and following up on ACP discussions.

We identified nine facilitators, which may increase engagement in ACP:

  • On the patient level, increased patient knowledge and understanding of the severity and prospects of their disease can make it easier to introduce ACP discussions.
  • Experience in caring for patients at the end of life and end-of-life discussions reduced the barrier for HCPs to engage in ACP discussions.
  • A system-related facilitator was continuity of care. Ensuring that patients receive care from the same clinician can enhance a good HCP-patient relationship and thus ACP discussions.



ACP seems to be accepted and welcomed by both patients with chronic respiratory diseases and their HCPs. Reducing the described barriers on a patient-, HCP-, and system-level and increasing and investing in the mentioned facilitators can support ACP conversations with patients with chronic respiratory diseases.

Read the full article

This post relates to the article, ‘Advance care planning for patients with chronic respiratory diseases: a systematic review of preferences and practices’ by Lea J Jabbarian, Marieke Zwakman, Agnes van der Heide, Marijke C Kars, Daisy J A Janssen, Johannes J van Delden, Judith A C Rietjens, and Ida J Korfage, Thorax 2017.

Links and resources

Please note that the below event has now concluded.

Members of the ACTION Consortium will be presenting at the 10TH EAPC World Research Congress …

  • Ida Korfage: Involvement in Medical Decision-making by a Cohort of Patients with Advanced Cancer across Six European Countries, the ACTION study, Friday, May 25, 14.45-15.00.
  • Lea Jabbarian: Relative Validity of an Emotional Functioning Short Form based on the EORTC Computerized Adaptive Testing Item bank in the international ACTION study, on Saturday, May 26 at 11.00-11.15.
  • Glenys Caswell: Qualitative Exploration of Advance Care Planning Conversations: Experiences from the ACTION Study, Saturday, May 26 at 09.30-9.45.

Visit the 10th EAPC World Research Congress website for the latest programme and updates . . .

This entry was posted in ACTION, Advance care planning, EAPC COLLABORATIVE PROJECTS and tagged . Bookmark the permalink.

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