What’s suffering got to do with it? A qualitative study of suffering in the context of Medical Assistance in Dying (MAID)

Abstract

Background Intolerable suffering is a common eligibility requirement for persons requesting assisted death, and although suffering has received philosophic attention for millennia, only recently has it been the focus of empirical inquiry. Robust theoretical knowledge about suffering is critically important as modern healthcare provides persons with different options at end-of-life to relieve suffering. The purpose of this paper is to present findings specific to the understanding and application of suffering in the context of MAID from nurses’ perspectives. Methods A longitudinal qualitative descriptive study using semi-structured telephone interviews. Inductive analysis was used to construct a thematic account. The study received ethical approval and all participants provided written consent. Results Fifty nurses and nurse practitioners from across Canada were interviewed. Participants described the suffering of dying and provided insights into the difficulties of treating existential suffering and the iatrogenic suffering patients experienced from long contact with the healthcare system. They shared perceptions of the suffering that leads to a request for MAID that included the unknown of dying, a desire for predictability, and the loss of dignity. Eliciting the suffering story was an essential part of nursing practice. Knowledge of the story allowed participants to find the balance between believing that suffering is whatever the persons says it is, while making sure that the MAID procedure was for the right person, for the right reason, at the right time. Participants perceived that the MAID process itself caused suffering that resulted from the complexity of decision-making, the chances of being deemed ineligible, and the heighted work of the tasks of dying. Conclusions Healthcare providers involved in MAID must be critically reflective about the suffering histories they bring to the clinical encounter, particularly iatrogenic suffering. Further, eliciting the suffering stories of persons requesting MAID requires a high degree of skill; those involved in the assessment process must have the time and competency to do this important role well. The nature of suffering that patients and family encounter as they enter the contemplation, assessment, and provision of MAID requires further research to understand it better and develop best practices.

Learning about psychiatric aspects of medical assistance in dying: a pilot survey of self-perceived educational needs among assessors in a Canadian academic hospital

“…It is unclear whether these participants meant they were comfortable trying to explore suffering, or whether they were able to simply confirm its existence as subjectively reported by the patient accordingly to the Canadian legal requirements. Evaluating suffering can be a complex task for experienced clinicians, as it requires a high degree of skills and sufficient time (46). In fact, suffering is by definition global, non-quantifiable, multidimensional, and influenced by many factors, including an existential dimension (47)(48)(49)(50).…”

Concept of unbearable suffering needs to be better understood by nurses

“…Suffering is deeply connected with human existence, and its relief is a pivotal outcome for nurses and other healthcare providers. However, the assessment of a patient’s suffering (and whether it is unbearable) is one of the most difficult requirements to form a judgement on 2. The lack of clarity may represent a difficulty in nurses’ clinical reasoning while providing care.…”

“…Other studies highlighted that U-suffering can be caused by intrapersonal, interpersonal, medically related, societal and/or existential determinants,4 but most patients experience a combination of physical and spiritual determinants 2 4 5. Yet, as U-suffering is not unidimensional, the underlying determinants are not always clear and easy to identify or ‘measure’.…”

“…Due to their close relationship with patients, nurses play a central role in the assessment and mitigation of this suffering. In fact, the desire to improve comfort and dignity and to relieve suffering is the primary motivation of those providing healthcare 2…”

Evolving strategies to relieve suffering at end-of-life

“…As nurses learned to have those delicate and nuanced conversations with their patients, many came to realize how complex and difficult discussions about suffering can be. 4 Suffering takes many forms—physical suffering, psychological suffering, social suffering, including the full range of anticipatory grief and dealing with all that has been lost. These feelings are often deeply experienced and rarely fully articulable.…”