The desire to die in palliative care: a sequential mixed methods study to develop a semi-structured clinical approach

Abstract

Background: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´potential desire to die, a training program and a semi-structured clinical approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress. Methods: Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. Results: 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was "proactively addressing desire to die". Conclusions: We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeuticallybased on evidence, patients' views and consensus among professional experts. Trial registration: The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).

How does Medical Assistance in Dying affect end-of-life care planning discussions? Experiences of Canadian multidisciplinary palliative care providers

“… 41 , 42 Early and open discussions may strengthen therapeutic relationships and help PCPs to determine when they may need to refer patients for additional specialist consultations or other supporting services. 48 , 50 …”

“… 5 As people live and experience illnesses and end-of-life journeys in relationships and communities, a clearer understanding of patient motivations in their personal and relational contexts by clinicians can facilitate discussions of available support and resources to meet these goals. Using semi-structured conversational guides to uncover the wider context of the patient’s suffering early on as an upstream measure may help PCPs to build trust and clarify ambiguous statements, 50 explain the palliative care philosophy, and offer targeted treatments and support resources to address symptoms and suffering holistically. As a German study revealed, in strengthening therapeutic relationships with patients who express a desire to hasten death, PCPs can help to ease patients’ suffering by generating hope and new perspectives through refocusing or activating patients’ mental and social resources.…”

“…41,42 Early and open discussions may strengthen therapeutic relationships and help PCPs to determine when they may need to refer patients for additional specialist consulta tions or other supporting services. 48,50 Nonetheless, some participants reported that MAiD legalization may have inadvertently con strained shared decisionmaking in the specialist palliative care setting, as offerings of palliative options that can ease suffering and facilitate peaceful natural death may be misconstrued as being paternalistic by patients who are only inter ested in MAiD. Even though a patient's desire to pursue MAiD does not necessarily mean that the person would lose eligibility for various services, some participants reported that patients' deci sions to have MAiD deterred them from offering or discussing additional services.…”

Understanding why patients request euthanasia when it is illegal: a qualitative study in palliative care units on the personal and practical impact of euthanasia requests

“… 7 , 8 , 20 , 41 – 43 The request for euthanasia can constitute a call for help. 44 , 45 If this is taken properly into consideration, it can decrease the overall suffering or even hinder the move to a suicidal act. 44 Furthermore, euthanasia requests call into question the care and support of PCU teams.…”

“… 47 It is thus important for HCPs to be trained in accompanying these difficult discussions, to become able to proactively initiate them, and to build a trusting relationship with their patient. 45 , 48 …”