Decision Making in the Shadow of Death

Abstract

IntroductionIt is often assumed that decision-making is a completely rational process. In reality, of course, numerous heuristics and biases influence the way we think and the decisions we make in clinical, research and policy contexts. While Blumenthal-Barby elegantly describes various types of heuristics and biases, and the effect that they may have on one's autonomy, i we suggest that there is insufficient attention given to the heuristics that may be most determinative in medical contexts -hope, and its attendant emotion, fear. Our insights are drawn from an empirical study of the legal and ethical 'limits' of consent in the setting of decision-making around a high risk medical interventions (bone marrow transplantation -BMT) which revealed that every formal element of consent is shaped or transmogrified by a patient's 'hope for a future'.ii In this qualitative study we examined the accounts of patients with haematological malignancies, their loved ones and the health care professionals caring for them regarding the decision to offer, and go through with, BMT -where BMT provided the possibility of 'cure' but carried a high risk of death (particularly in the first year post-BMT) and long-term morbidity. While the heuristics described by Blumenthal-Barby were evident in the narratives of all of the participants in this study and undoubtedly impacted upon understanding, intentionality and effective autonomy,

Consent in the face of death

“…Patients, in particular those facing a high risk of death, are often highly cognizant of both the degree to which they are reliant on the expertise of healthcare professionals and institutions on which their survival depends, and of the ways in which their choices are determined by, and impact on, their families and friends. 4 This account of decision-making in high-risk situations is more consistent with feminist accounts of autonomy, which note the degree to which autonomy is 'relational' located socially and not simply within the individual. 5 While relational autonomy does not 'dull' the immediacy or the starkness of the choices faced by patients in high-risk situations, locating autonomy socially, rather than individually, and describing it in terms of the specific medical context in which it is actualised, better accounts for the ways in which every element of consent is compromised or challenged by illness.…”

“…While philosophical accounts of autonomy have traditionally focused on sovereignty and rationality, when faced with death patients are intensely vulnerable and they may become more concerned with their care and their future than their ‘power’ or independence. Patients, in particular those facing a high risk of death, are often highly cognizant of both the degree to which they are reliant on the expertise of healthcare professionals and institutions on which their survival depends, and of the ways in which their choices are determined by, and impact on, their families and friends . This account of decision‐making in high‐risk situations is more consistent with feminist accounts of autonomy, which note the degree to which autonomy is ‘relational’ – located socially and not simply within the individual…”

Investigating and Supporting Patient and Caregiver Sensemaking in Complex Medical Decisions Using Participatory Design

“…The authors suggest that instead of informed consent, clinicians offer their commitment to providing the support that patients and caregivers need during throughout the transplant process. Similarly, Scanlan et al 37 proposed that informed consent for BMT is more about building a trusting relationship than about education. As the participants’ solutions in this study emphasized, there is potential for ongoing interaction with the clinical team, particularly in the pre-BMT period, to have an impact on patient and caregiver experiences later in transplant.…”

Trust, not education, is the key to consent in hematopoietic cell transplant: in response to D’Souza, Pasquini and Spellecy

“…In a qualitative study of HCT recipients, their significant others and healthcare professionals caring for them, 3 we found that, almost without exception, patients had decided to proceed to HCT before they had met with the transplant team, or received any information about the transplant; that patients' decisions were deeply shaped by, and enmeshed in, their existing relationships and social roles; and that the process of information transfer served principally to establish trust and to reassure the patient, their family and the transplant team that HCT was appropriate and that it has a chance of success.…”