Bioethics in Faith and Practice, Volume 1, Number 1

18 Lones ⦁ An Ethical Framework for End-of-Life Decisions Communication If the family is to participate with the patient and physician in the decision-making process, roles and expectations should be clearly defined. The decision-making authority in end-of-life treatment decision should be based on each respective area of expertise. Physicians should be given authority based on their technical expertise in prognostication and treatment, and patients/families based on their primary concern for the patient’s well-being, values and priorities. The physician and family members would then collaborate, blending the expertise of all those involved. Rosenfeld writes: “Informants felt that the physician’s skill in treating serious illness and prognosticating outcomes is critical to his or her decision- making authority. However, when functional recovery is not possible, the family’s decision-making authority assumes precedence, aided by the doctor’s support and technical guidance”. xii Many of the efforts to improve end-of-life decision-making have focused on promoting patient autonomy (i.e. advance directives) to control treatment decisions. In recent years, patients, bioethicists, and clinicians have questioned using autonomy (advance directives) as the central decision-making priority. xiii Advance directives should be viewed as a tool in preparing patients and health care power of attorney agents (HCPOA) for end-of-life decision making. Advance directives are simply one part of the decision- making process because it can be difficult for patients and HCPOAs to consider all the implications of “in-the-moment” treatment decisions. Sudore suggests three key steps to address patients’ and HCPOAs’ needs for preparation for in-the- moment decisions making: “(1) choosing an appropriate surrogate decision maker, (2) clarifying and articulating patients’ values over time, and (3) establishing leeway in surrogate decision making”. xiv The main objective of advance care planning is not advance treatment decisions. The goal of advance care planning should be to prepare patients and families to work with their physician to make the best possible “in-the-moment” medical decisions focusing on outcomes, not treatments, which respects the personhood of the patient, their values and priorities. End-of-Life Medical Care Finally, end-of-life discussions should include concerns about the appropriateness of care provided at the end of life. These “concerns of conscience” are threefold: (1) Inappropriate, overly burdensome care. (2) Reluctance to forgo artificial nutrition and hydration believing medically supplied food and water should always be provided. (3) The need for better pain relief. These family concerns about inappropriate end-of-care center on three ethical distinctions. The first distinction is between withholding verses withdrawing treatment. Most care-givers are psychologically more comfortable withholding treatments than withdrawing them. This may be related to the fact that withholding is passive, while withdrawing is active and associated with a greater sense of moral responsibility. Discussions should focus on an assessment of the relative benefits and burdens to the patient, not the timing of the decision. Treatments should be instituted with a plan for stopping the “trial of treatment” with specific points to evaluate and revise the care plan. Psychologically, families need to be encouraged that they are not abandoning their “loved one”. Rather, the type of care is changing to one of comfort.