Negotiating decisions on aggressive cancer care at end-of-life between patients, family members, and physicians – A qualitative interview study

Abstract

BackgroundPatients with advanced cancer do receive increasingly aggressive end-of-life care, despite it does often not prolong survival time but entails decreased quality of life for patients. This qualitative study explores the unfolding of aggressive end-of-life care in clinical practice focusing on the decision-making process and the quality of end-of-life care from family members’ perspective.Materials and methodsWe conducted semi-structured interviews with 16 family members (six of cancer patients with and ten without aggressive end-of-life care) at the National Center for Tumor Diseases Heidelberg, Germany. We conducted a content analysis applying a theoretical framework to differentiate between ‘decision-making’ (process of deciding for one choice among many options) and ‘decision-taking’ (acting upon this choice).ResultsWhile patients of the aggressive care group tended to make and take decisions with their family members and physicians, patients of the other group took the decision against more aggressive treatment alone. Main reason for the decision in favor of aggressive care was the wish to spend more time with loved ones. Patients took decisions against aggressive care given the rapid decline in physical health and to spare relatives difficult decisions and arising feelings of guilt and self-reproach.ConclusionTreatment decisions at end-of-life are always individual. Nevertheless, treatment courses with aggressive end-of-life care and those without differ markedly. To account for a longitudinal perspective on the interplay between patients, family members, and physicians, cohort studies are needed. Meanwhile, clinicians should validate patients and family members considering refraining from aggressive end-of-life care and explore their motives.Clinical trial registrationhttps://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00022837, identifier DRKS00022837.

Shared decision-making in palliative cancer care: A systematic review and metasynthesis

“…Patients, informal carers and healthcare professionals all often shared the perception of treatment decision-making in advanced cancer as a ‘no choice’-situation. 38 – 41 , 43 – 51 In many studies, patient and informal carer participants remarked that the only available option was following the treatment plan offered by the physician. 38 , 39 , 46 , 47 , 50 Participants seldom perceived no treatment as equivalent to treatment, and any choice between broadly equivalent options was perceived as limited, as an oncologist in De Snoo-Trimp et al 44 commented (p. 1184): The concept of “no best option” is, in my opinion, somewhat theoretical because, in practice, there is often a best option based on the tumour and the status of patients.…”

“…Included studies showed examples of patients’ experiences of being involved at their preferred level, and that decisions could be a process of reaching a mutual agreement between the physician, patient and informal carers. 37 , 48 , 50 , 51 , 53 , 55 , 56 …”

“…Included studies showed examples of patients' experiences of being involved at their preferred level, and that decisions could be a process of reaching a mutual agreement between the physician, patient and informal carers. 37,48,50,51,53,55,56 While informal carers could be an important source of information, advice and emotional support for the patient, their role in shared decision-making was experienced as mainly participating in meetings with the medical specialist and supporting the patient. 38,39,50 Some studies showed that difficulties could be experienced, like family members not being involved because patients wanted to protect them, or that healthcare professionals perceived family members influencing patients to continue treatment they might not want.…”

“…38,39,50 Some studies showed that difficulties could be experienced, like family members not being involved because patients wanted to protect them, or that healthcare professionals perceived family members influencing patients to continue treatment they might not want. 43,51 The patient-physician dyad is central, and people with cancer, nurses and other healthcare professionals perceive that other health care professionals generally have limited roles in shared decision-making. 43,45,46,48,50,[59][60][61] However, other healthcare professionals facilitate and support shared decision-making in several ways.…”

The suffering is expensive: comparison of therapeutic costs between palliative care and dysthanasia patient

“…It is at this moment that the healthcare team may commonly adopt a stance of therapeutic obstinacy through dysthanasia, choosing to implement aggressive and futile procedures and interventions aimed at prolonging the patient's life at any cost, even though they are incapable of reversing the course of the dying process. In dysthanasia, this process becomes more prolonged, and the patient is subjected to intense and unnecessary suffering (8)(9) . It is, therefore, a therapeutic approach that subjects the patient to an undignified, difficult, and excessively painful death, reducing their quality of life in the dying process.…”