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Improving advance care planning for late-stage cancer patients

An EU-funded project carried out an 'advance care planning' trial on patients with late-stage cancer in a bid to improve their welfare and boost their involvement in care-giving decision-making.

© ipopba #341152297, 2020

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Advanced cancer affects a patient’s physical and mental condition, while also having a significant impact on the patient’s quality of life, with depression and anxiety being common problems . Planning a patient’s care strategy, with the patient’s participation, is expected to improve their well-being. However, the effect of such advance care planning (ACP) had not previously been widely studied.

The EU-funded project ACTION has helped bridge this knowledge gap by exploring the impact of formalised ACP on the quality of life of patients with advanced cancer through an international, multi-centre patient-based clinical trial.

‘Open communication can be a serious challenge for healthcare professionals, patients and relatives. We adapted the US-based Respecting Choices approach into a European advance care planning programme to facilitate communication between the different groups concerned with patients’ care preferences. We then compared this approach with care as the normal scenario through our trial,’ explains Agnes van der Heide, Professor of Care and decision-making at the end of life, at the Erasmus Universitair Medisch Centrum, Rotterdam and ACTION project coordinator.

Improving well-being

ACTION carried out a clinical trial with 1 117 patients in 23 hospitals across six EU countries with the aim of comparing the quality of life among patients who followed ACP and those who followed ‘care as usual’ strategies.

The patients, diagnosed with advanced lung or stage-four colorectal cancer, were asked to fill in questionnaires at 2.5 months and then 4.5 months into the trial. A relative filled in a questionnaire if the patient died during the trial. The 60-question surveys were used to judge whether or not the care provided matched each patient’s preferences, how the patient evaluated the decision-making process, the quality of dying and the cost-effectiveness of care.

‘ACTION found that proper planning for care during advanced-stage cancer is challenging. However, analyses of the completed forms show that being independent, maintaining a normal life, having meaningful relations and being free from pain are important topics for patients with advanced cancer in Europe,’ says Van der Heide.

Patient preferences

Advanced care planning conversations may result in patients filling out a medically, ethically and legally acceptable form, called ‘My preferences’. This form helps describe the patient’s goals for medical treatment and care, their worries and fears, their beliefs and hopes. It also covers their preferences on questions about the use, or not, of potentially life-prolonging treatments, about resuscitation and about whether focusing on treating the condition or maximising comfort was more important to the patient. Patients can also use the form to state where their preferred final place of care would be.

Elements of ACP are being integrated into the treatment of advanced cancer in some European countries – for example, patients can express their care preferences. However, ACP goes deeper into their needs and preferences and gives them greater authority to refuse or request treatments and practices.

‘Our project has raised awareness of the need to fully anticipate the future deterioration of the patient’s health and the importance to plan for it in an inclusive way,’ Van der Heide adds.

The tools and procedures developed by ACTION are now available for researchers, healthcare professionals, policymakers and others to use.

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Project details

Project acronym
Project number
Project coordinator: Netherlands
Project participants:
United Kingdom
Total cost
€ 6 122 871
EU Contribution
€ 4 784 656
Project duration

See also

More information about project ACTION

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