Marit Karlsson

Dying cancer patients’ own opinions on euthanasia: An expression of autonomy? A qualitative study

Introduction: Deliberations on euthanasia are mostly theoretical, and often lack first-hand perspectives of the affected persons. Method: Sixty-six patients suffering from cancer in a palliative phase were interviewed about their perspectives of euthanasia in relation to autonomy. The interviews were transcribed verbatim and analysed using qualitative content analysis with no predetermined categories. Results: The informants expressed different positions on euthanasia, ranging from support to opposition, but the majority were undecided due to the complexity of the problem. The informants’ perspectives on euthanasia in relation to autonomy focused on decision making, being affected by (1) power and (2) trust. Legalization of euthanasia was perceived as either (a) increasing patient autonomy by patient empowerment, or (b) decreasing patient autonomy by increasing the medical power of the health care staff, which could be frightening. The informants experienced dependence on others, and expressed various levels of trust in others’ intentions, ranging from full trust to complete mistrust. Conclusions: Dying cancer patients perceive that they cannot feel completely independent, which affects true autonomous decision making. Further, when considering legalization of euthanasia, the perspectives of patients fearing the effects of legalization should also be taken into account, not only those of patients opting for it.

Dying with dignity according to Swedish medical students

Goal of workTo die with dignity is an important but ambiguous concept, and it is used in contradictory contexts, both for the promotion of palliative care and as an argument for euthanasia. Our goal was to explore medical students’ definition of a dignified death.Patients and methodsA questionnaire containing open-ended questions was answered anonymously by 165 first- and fifth-year medical students. The data were analysed using qualitative content analysis with no predetermined categories.Main resultsThe students’ descriptions of a dignified death resulted in five categories of death: (1) without suffering, (2) with limited medical interventions, (3) with a sense of security, which implied a safe environment nursed by professional staff, (4) with autonomy, respect for the individual and empowerment to the patient and (5) with acceptance. These findings show similarity to the established concepts of a good death, as well as the view of a dignified death by terminally ill patients.ConclusionsThe data suggest that the students perceive that the medical system is over-treating patients and sometimes causing harm to dying patients. The results reveal a potential misunderstanding and contradiction relating to death without suffering and the use of necessary palliative interventions. These findings are important when planning education as regards palliative care and dignified death.

Suffering and euthanasia: a qualitative study of dying cancer patients' perspectives.

PurposeAlthough intolerable suffering is a core concept used to justify euthanasia, little is known about dying cancer patients’ own interpretations and conclusions of suffering in relation to euthanasia.MethodsSixty-six patients with cancer in a palliative phase were selected through maximum-variation sampling, and in-depth interviews were conducted on suffering and euthanasia. The interviews were analyzed using qualitative content analysis with no predetermined categories.ResultsThe analysis demonstrated patients’ different perspectives on suffering in connection to their attitude to euthanasia. Those advocating euthanasia, though not for themselves at the time of the study, did so due to (1) perceptions of suffering as meaningless, (2) anticipatory fears of losses and multi-dimensional suffering, or (3) doubts over the possibility of receiving help to alleviate suffering. Those opposing euthanasia did so due to (1) perceptions of life, despite suffering, as being meaningful, (2) trust in bodily or psychological adaptation to reduce suffering, a phenomenon personally experienced by informants, and (3) by placing trust in the provision of help and support by healthcare services to reduce future suffering.ConclusionsDying cancer patients draw varying conclusions from suffering: suffering can, but does not necessarily, lead to advocations of euthanasia. Patients experiencing meaning and trust, and who find strategies to handle suffering, oppose euthanasia. In contrast, patients with anticipatory fears of multi-dimensional meaningless suffering and with lack of belief in the continuing availability of help, advocate euthanasia. This indicates a need for healthcare staff to address issues of trust, meaning, and anticipatory fears.

A good death from the perspective of palliative cancer patients

PurposeAlthough previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden.MethodsInterviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis.ResultsParticipants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants’ views of a good death.ConclusionsHealthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients’ personal experience of death and dying can help address their fears as death approaches.