Patients with advanced disease will sooner or later be faced with the reality of death, and this is one of the factors that most contributes to the multidimensional suffering they experience at this stage (1). Their suffering tends to intensify as the disease progresses and death approaches (2), and it is in this context that a desire to die (DD) may emerge.
The DD is a reactive phenomenon that may affect any patient with advanced disease. Recently, a group of international experts in the field (3), led by members of this task force proposal, agreed on an operational definition of the wish to hasten death, which can be regarded as a specific manifestation of the DD. The wish to hasten death (WTHD) was defined as follows: “A reaction to suffering, in the context of a life-threatening condition, from which the patient can see no way out other than to accelerate his or her death. This wish may be expressed spontaneously or after being asked about it, but it must be distinguished from the acceptance of impending death or from a wish to die naturally, although preferably soon. This wish may arise in response to one or more factors, including physical symptoms (either present or foreseen), psychological distress (e.g. depression, hopelessness, fears, etc.), existential suffering (e.g. loss of meaning in life), or social aspects (e.g. feeling that one is a burden)”.
A number of studies have been carried out with the aim of understanding the various factors that contribute to the emergence of the WTHD, the conclusion being that a combination of several factors need to be considered (4-7). Thus, when a patient expresses the WTHD it is necessary to explore the nature of his or her suffering (including emotional aspects such as depression, demoralization, etc.), fears, attitudes toward death and dying, and the meaning which the WTHD has for this particular individual.
The WTHD among patients with advanced cancer is not uncommon, the reported frequency being as high as 37.8% (3, 8). A variety of methods have so far been used to assess the WTHD, one problem being that most of them do not share a conceptual framework (9). In addition, the methods themselves have certain limitations, notably with regard to the wording used, which is often too direct given the vulnerable situation in which these patients find themselves. Furthermore, despite the need to assess the WTHD, healthcare professionals (HCPs) are often reluctant to use the available instruments as they are not well suited to application in everyday clinical practice, and it is still a difficult topic for many health-care professionals including those working in Palliative Care to assess and respond to (10). The combination of these factors means that it is difficult to estimate the frequency of the WTHD among advanced patients in Europe.
The expression of a WTHD should alert HCPs to the fact that the patient is suffering, and they should proceed to explore and identify the factors associated with it so as to understand the roots of the wish, the meanings that the patient ascribes to it and allowing the HPC to give the patient the care to address their needs.
Research on the WTHD has helped to understand the meanings and functions that patients attribute to it. In terms of its meanings, the WTHD may not correspond to a genuine wish to die, but rather be closely linked to the patient’s need to express his or her suffering (11,12). Thus, when a patient expresses the WTHD this may be understood as a cry for help, as reflecting a wish for suffering to end, or even as the desire to live but not in this way. In this respect, exploring the DD would be a way of talking about death and suffering, regardless of whether the patient has actually expressed such a desire. To put it another way, asking about the WTHD would open the door to a conversation about the patient’s situation and the end of life.
The European cultural reality has become very varied in the last decades, and the response to the suffering and the WTHD is diverse, on an individual personal and national level. It is essential for HCPs working mainly in palliative care across Europe to gain insight into aspects related with a meaningful, sensible and appropriate assessment and response to the WTHD.
In order to do so, the WTHD Task Force will produce a White Paper which will:
a) inform readers of current knowledge on the clinical aspects of the DD
b) describe the current situation around the WTHD across Europe through multi-professional information regarding its perceived frequency, causes, ways of assessment and response, in cancer as well as non-cancer patients
c) offer evidence-based strategies and actions to address the assessment and respond of the WTHD on a European level.
Aims and Objectives
- To review the evidence on the frequency, causes, assessment and response to the WTHD at clinical level in life-threatening conditions across Europe.
- To survey at European and multi-professional level, the current WTHD phenomenon relevance, frequency, causes, assessment and response in Palliative Care.
- To write a White Paper on WTHD as a clinical issue.
May 2019 Meeting of the co-chairs in the EAPC congress in Berlin
Aug 2019 Identification of partners and members of the steering group
Sep 2019 Submission of Task Force application to EAPC board. Identification of members and sending invitations
Oct 2019 – Oct 2020 Literature review: review the evidence on the frequency, causes, assessment and response to the WTHD at clinical level in life-threatening conditions. Review the international recommendations
Oct 2020 Closed online meeting (2 hours) at EAPC congress within Task Force steering group, Task Force members and invited experts: presentation of first results of literature review.
Objective: to define survey for data collection at European level
Nov 2020 To survey at European and multi-professional level, the current WTHD phenomenon relevance, frequency, causes, assessment and response in Palliative Care
May 2021 Survey results discussion among members Task Force during Helsinki EAPC Congress, closed Task Force meeting
Jan – Dec 2021 To write a White Paper on WTHD as a clinical issue
Jun 2021 Closed online meeting within Task Force steering group, Task Force members and invited experts: presentation of first results of literature review.
Objective: To discuss preliminar draft White Paper on WTHD as a clinical issue
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