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Monday, January 22, 2024

Deciding for Patients Who Have Lost Decision-Making Capacity — Finding Common Ground in Medical Ethics

Bernard Lo
The New England Journal of Medicine
Originally published 16 Dec 23

Here is an excerpt:

Empirical studies...show that advance directives do not work as was hoped.2 Only a minority of patients complete them. Directives commonly are not well informed, because patients have serious misconceptions about life-sustaining interventions and about their own prognoses. Designated surrogates are often inaccurate in stating patients’ preferences in specific scenarios. Patient preferences commonly change over time. Patients often want surrogates to have leeway to override their prior statements. And when making decisions, surrogates frequently consider aspects of patient well-being to be more important than the patient’s previously stated preferences.

Conceptually, relying completely on an incompetent patient’s prior directives may be unsound. Often surrogates must extrapolate from the patient’s previous directives and statements to a situation that the patient did not foresee. Patients generally underestimate how well they can cope with and adapt to new situations.

So the standard approach shifted to advance care planning, a process for helping adults understand and communicate their values, goals, and preferences regarding future care. Advance care planning improves satisfaction with communication and reduces the risk of post-traumatic stress disorder, depression, or anxiety among surrogate decision makers.3 However, its use neither increases the likelihood that decisions are concordant with patients’ values and goals nor improves patients’ quality of life.3

Studies show that patients are less concerned about specific medical interventions than about clinical outcomes, burdens, and quality of life. Such evidence led advocates of advance care planning to begin focusing on preparing for in-the-moment decisions rather than documenting directives for medical interventions.

Many state legislatures rejected the strict requirements for surrogate decision making that Cruzan allowed. By 2004, 10 states allowed patients to appoint a health care proxy in a conversation with a physician as well as in formal documents. By 2016, 41 states — both conservative and liberal — had enacted laws allowing family members to act as health care surrogates for patients who lacked decision-making capacity and had not designated a health care proxy. Seven states included domestic partners or close friends on the list of acceptable surrogates.

Here is a quick summary:

Following the 1990 Supreme Court's Cruzan ruling, which emphasized clear evidence for life-sustaining treatment withdrawal, practices shifted. Advance directives like living wills gained popularity, but studies revealed their limitations. Advance care planning, focusing on communication and values, took hold. POLST forms were introduced for specific interventions, but studies show inconsistency with actual situations.

The emphasis is now on family decision-making and flexible guidelines. Rigid legal formalities have decreased, and surrogates consider not just past directives but also current situations and evolving values. Discussions involving patients, surrogates, and physicians are crucial. Different approaches like past commitments, current well-being, and "life story continuation" may be appropriate depending on the context.

The Cruzan framework is no longer the basis for medical ethics and law. Family decisions, flexible standards, and evolving values now guide care. This shift showcases how medical ethics can adapt through discussions, research, and legal changes. Finding common ground on critical issues in today's divided society remains a challenge, but it's more important than ever.