Call to action: empowering patients and families to initiate clinical ethics consultations

Clinical ethics consultations exist to support patients, families and clinicians who are facing ethical or moral challenges related to patient care. They provide a forum for open communication, where all stakeholders are encouraged to express their concerns and articulate their viewpoints. Ethics consultations can be requested by patients, caregivers or members of a patient’s clinical or supportive team. Although patients and by extension their families (especially in cases of decisional incapacity) are the common denominators in most ethics consultations, these constituents are the least likely to request them. At many healthcare organisations in the USA, ethics consultations are overwhelmingly requested by physicians and other clinicians. We believe it is vital that healthcare institutions bridge the knowledge gaps and power imbalances over access to ethics consultation services through augmented policies, procedures and infrastructure. With enhanced education and support, patients and families may use ethics consultation to elevate their voices and prioritise their unique characteristics and preferences in the delivery of their healthcare. Empowering patients and families to request ethics consultation can only strengthen the patient/family–clinician relationship, enhance the shared decision-making model of care and ultimately lead to improved patient-centred care.

Beyond Instrumental Value: Respecting The Will of Others and Deciding On Their Behalf

This chapter explores the ethical responsibilities of those who make medical decisions on behalf of individuals with intellectual and/or developmental disabilities that result in lifelong decisional incapacity. Standard accounts argue that because these patients have never had the capacity to make their own decisions, surrogates should make decisions based solely on what best promotes the patients’ welfare. On such accounts, the preferences, values, and decisions of those with impaired consent capacity are still relevant to decision making but only instrumentally: to the extent that soliciting them is conducive to or can provide an indicator of the patients’ general interests. Such accounts fail to ensure that such patients are properly respected. Rather than emphasize the importance of respect for autonomy, this chapter explores the more inclusive question of how decision making can be done in a way that does not insult the existent agential capacities of individuals. Trustees need to recognize that a patient’s unique evaluative perspective possesses intrinsic normative significance, and giving moral weight to their preferences, values, and decisions provides a way to respect that perspective.

Varieties of decisional incapacity: Theory and practice

SummaryEvaluation of decision-making capacity (DMC) for treatment is challenging. Owen et al, in this issue of the Journal, compare the abilities (understanding, appreciation and reasoning) relevant to DMC in medical and psychiatric patients. Here I discuss three key issues their article raises and that are relevant to the direction of future research.

All in the Family: Extended Autonomy and Expectations in Surrogate Health Care Decision-Making1

Examined were elderly persons' preferences and expectations for advance directives and surrogate health care decision-making in the event of decisional incapacity. Exploratory findings are presented from in-depth interviews of a sample of men and women aged 67 to 91 (n = 40). The view that elderly people have a strong expectation for familial decision-making in the event of long term care and perceive this reliance as a means of extended autonomy was supported by the findings.