Improving End of Life Decision Making: What Evidence Will Bring Care for the Dying a Step Further? A Delphi Study

Raijmakers N.J.H.1,2, van Zuylen L.2, Caraceni A.3, Costantini M.4, Clark J.5, Lundquist G.6, De Simone G.7, Ellershaw J.E.8, van der Heide A.1, OPCARE9

(1)Erasmus MC, University Medical Center Rotterdam, Department of Public Health, Rotterdam, Netherlands, (2) Erasmus MC, University Medical Center Rotterdam, Department of Medical Oncology, Rotterdam, Netherlands, (3) National Cancer Institute, Department of Palliative Care Pain, Therapy and Rehabilitation, Milan, Italy, (4) National Cancer Research Institute, Regional Palliative Care Network, Genova, Italy, (5)Arohanui Hospice, Education and Research Unit, Palmerston North, New Zealand, (6) Palliative Home Care, Ludvika, Sweden, (7) Pallium Latinoamérica, Buenos Aires, Argentina, (8) Marie Curie Palliative Care Institute, Liverpool, United Kingdom

Introduction: End of life decision making is an important aspect of end of life care which can have a significant impact on the quality of life of dying patients. Such decision making may involve withdrawing medical treatment, providing intensive treatment to alleviate suffering and other interventions. Evidence based guidance for these practices is limited.

Aim: The aim of our study was to identify difficult issues in end-of-life decision making for which more evidence-based guidance might be useful.

Methods: Experts in palliative care participated in a 2-round Delphi survey. They identified important issues in end of life decision making and rated the usefulness of scientific evidence. Artificial hydration, artificial nutrition and the use of sedatives were used as examples for end of life decision making. Ninety experts were consulted from the OPCARE9 countries: Argentina, Germany, Italy, the Netherlands, New Zealand, Slovenia, Sweden, Switzerland and the UK.

Results: In the first and second round, the response rate was 76% and 60%, respectively. According to the experts difficult topics in end of life decision making

were medical issues, such as effects of (de)hydration or indications for sedatives, and communication issues, such as addressing patients’ and relatives’ wishes and informing them. According to the experts, evidence based guidance is most helpful in the following areas: optimal strategies for communication with dying patients and their relatives, indications for using sedatives and the effect of (refraining from) artificial hydration on quality of life.

Conclusions: Communication with terminally ill patients and relatives is a challenging issue that would benefit from future research. Additionally, more evidence on indications for and effects of artificial hydration at the end of life is needed. These results serve well to prioritize future research for optimizing the care of the dying.

Pallium Latinoamérica. Ciencia, alivio y esperanza en el final de la vida.