How Relatives and Health Care Professionals Experience Palliative Sedation at the End-of-Life in Cancer Patients with Refractory Suffering: A Qualitative Study from the Palliative Sedation Project

Abstract

Background:

Palliative sedation has major clinical, social and ethical implications. Vicariously witnessing suffering in others is known to be distressing. However, little is understood about how palliative sedation is experienced by relatives and health care professionals.

Objectives:

To explore the experiences of relatives and health care professionals with palliative sedation.

Design:

A qualitative design with thematic framework analysis of data collected in semistructured interviews.

Setting/participants:

Research was conducted in seven specialist in-patient palliative care services in Belgium, Germany, Italy, the Netherlands, and Spain. A bereaved relative and health care provider linked to a deceased patient with cancer who had palliative sedation was recruited.

Measurements:

We coded transcripts and characterized factors that arose during the process of palliative sedation.

Results:

We interviewed 66 people (33 relatives and 33 health care professionals) linked to 33 deceased patients. Three main themes were identified: (1) Understanding the aim of palliative sedation among relatives and health care professionals such as to alleviate suffering, dying with dignity, (2) Palliative sedation is a complex process, accompanied by many uncertainties, which can cause distress for both relatives and health care providers such as eligibility of the patient, when to start or the effectiveness of palliative sedation, (3) Sedation involves a period of intense family communication, collaboration, and caregiving with heightened mixed emotions. Opportunities to say goodbye before starting palliative sedation were important.

Conclusion:

Relatives and health care professionals focused on the effectiveness of palliative sedation in alleviating suffering and offering a dignified death. It was described as complex, with mixed experiences of relief and distress.