Medical Care and Decision Making at the End of Life
"Studies in this area involve various thought-provoking ethical and methodological challenges. Our research projects include quantitative and qualitative studies to better understand current practices and evaluate promising interventions”
Medical care and decision-making in the last phase of life are prominent in both the societal and scientific debate. Contemporary societal issues in end-of-life care include: i) the ageing population with patients suffering from chronic and progressing conditions such as cancer, organ failure or dementia, ii) the medicalization of dying and the fragmentation of care which pose challenges in communication and cooperation, and iii) an increasing emphasis on patient engagement, self-determination and the context in which the patient lives. Studies in this area involve various thought-provoking ethical and methodological challenges. Our research projects include quantitative and qualitative studies to better understand current practices and evaluate promising interventions. In these investigations, we collaborate with partners throughout the Netherlands, Europe and beyond. At the regional level, we participate in a consortium dedicated to improve the quality of palliative and end-of-life care, and in an academic network of hospice facilities.
Highlights
of Medical Care and Decision Making at the End of Life in 2020
Transmural collaboration in palliative care
Inadequate collaboration between healthcare providers from within and outside the hospital (also referred to as ‘transmural’ or ‘integrated’ care) is one of the main bottlenecks in palliative care. In the period 2016-2020, we implemented our learning and improvement program "Transmural collaboration in palliative care", together with seven palliative care networks in the southwestern region of the Netherlands. A large region-wide questionnaire survey conducted at the start, indicated that healthcare providers considered transmural collaboration crucial, but experienced it as suboptimal. During the program, each participating network implemented their own improvement trajectory. All trajectories were accompanied with action research: researchers intensively followed the trajectory and provided solicited and unsolicited feedback. Our study demonstrated many challenges, ranging from conflicting views and care routines among healthcare professionals, to the fragmented organization of care and financial reimbursement systems. Transmural collaboration has nevertheless gradually improved in all participating networks.
A web-based program for Advance Care Planning
Advance care planning (ACP) enables persons to define goals and preferences for treatment and care, to discuss these with family and healthcare providers, and to record and review these if appropriate. Many people consider such a discussion about their preferences important, but also difficult. During the COVID-19 pandemic the recognition of the relevance of ACP has increased further. To support people in taking the first ACP steps we developed an interactive web-based ACP program, called “Explore your preferences for treatment and care”. The program was based on a scoping review, interviews with patients and relatives, and stakeholder group meetings. Qualitative interviews and a questionnaire study showed the program to be user-friendly and understandable. The program is embedded in the platform Thuisarts.nl, which contains information about health and diseases. Between April 2020, when the program was launched, and December 2020 it has been visited >30.000 times.
