Chapter 16 – Advance Directives


Advance directives (ADs) are legal documents that provide information on a patient’s preferences for care when seriously ill. ADs include two separate documents: a health-care power of attorney and/or a living will. This Chapter provides a practical guide to questions that may arise in the use of ADs as a part of shared decision-making in the intensive care unit (ICU).

Chapter 16 Advance Directives Law, Policy, and Use in Shared Decision-Making

Joshua Rolnick

Advance directives (ADs) are legal documents that provide information on a patient’s preferences for care when seriously ill. ADs include two separate documents: a health-care power of attorney and/or a living will. This Chapter provides a practical guide to questions that may arise in the use of ADs as a part of shared decision-making in the intensive care unit (ICU).

A living will documents a patient’s wishes for health-care at the end of life. For all its limitations, the living will may be the ICU practitioner’s only direct record of a patient’s wishes. Documentation in the medical record, although important, is indirect, created by a clinician as a record of conversations with a patient and their family.

A durable health-care power of attorney is a legal document that designates an individual or individuals to make health care decisions when a patient lacks capacity for decision-making. It is called “durable” because it remains in effect even when the patient lacks capacity, in contrast to a standard financial power of attorney. Usually, a health care agent has the authority to make all or nearly all decisions that a patient would be able to make. The agent’s authority supersedes that of closer family members. Even when the agent is not related to the patient, or does not speak the ICU practitioner’s language, it is the agent, not closer family members, who have legal decision-making authority.

16.1 Legal Questions

What law governs ADs? In the United States, ADs are usually governed by state law, with some exceptions for the Veterans Health Administration and the Department of Defense.1 Rules for legal formalities, when ADs take legal effect, and other important issues will vary. When ICU practitioners move from one state to another, they should be aware that these legal factors may change.2, 3

What does it mean that an AD is “legally binding?” When a living will or health-care power of attorney takes effect, it means that clinicians are obligated to follow the wishes of the document in designating a decision-maker or specifying wishes for care. In return, most jurisdictions establish a legal safe harbor, immunizing clinicians from criminal, civil, or administrative (e.g., medical board) action for good faith efforts to follow an AD. In reality, for living wills, clinicians have an “out” if they disagree with the wishes for care, usually by transferring the patient, leading some commentators to describe living wills as “legally recognized” rather than “legally binding.”4

When do these documents take effect legally? Although living wills and health-care power of attorney documents are bundled together as ADs, they take effect in different circumstances. A durable health-care power of attorney takes effect when the patient lacks capacity to make medical decisions – a legal status known as incompetence – regardless of the patient’s medical prognosis. For example, in Pennsylvania, the law states that a health-care power of attorney takes effect when (1) a copy is provided to the attending physician and (2) the attending physician determines that the patient lacks capacity.5 However, the health-care power of attorney documentation can specify different circumstances.

In contrast, a living will does not take effect whenever the patient is incompetent. In most states, the patient must also be near the end of life. Pennsylvania, for example, requires that the patient have an end-stage medical condition or be permanently unconscious. An end-stage medical condition is an “incurable and irreversible medical condition” that would “result in death” despite full treatment measures.6 Conditions that may, to an ICU practitioner, be reasonable circumstances in which some patients and families may wish to avoid aggressive treatment measures – an older, frail patient with mild dementia requiring intubation to treat pneumonia – may not meet the requirements for a living will to take effect, even though the health-care power of attorney is in effect. That agent, however, is still required under the law of most states to exercise substituted judgment whenever possible, meaning to make the decisions they believe the patient would have wanted. An “inoperative” living will may still clinically be a useful tool in understanding patient wishes and facilitating conversations with family members.

Are ADs from one state valid to use in another state? The validity of an AD from a different state, or country, will depend on local law. U.S. states follow two models: (1) some recognize an out-of-state AD as valid only if it meets legal formalities in the local jurisdiction where the patient is hospitalized, whereas (2) other states recognize an out-of-state AD, even if not adherent to local standards, provided it meets the requirements of the jurisdiction in which it was created.4

Who makes decisions if a patient has no health-care power of attorney? Nearly every jurisdiction has rules for default surrogate status. The most common order of priority is spouse, adult child, parent, adult sibling, adult grandchild, and close friend, with the specifics varying by jurisdiction. The default rules are often indeterminate – if the patient has more than one adult child, those children will have equal decision-making status. Laws may specify that if health-care representatives do not agree, the attending physician may rely on a consensus view of a majority of the surrogates who have communicated their perspectives.

Clinicians often treat nonagent decision-makers the same as agents, assuming they have equal authority to make decisions. In fact, such is not the case in all jurisdictions – at least as a matter of technical legal fact – and nonagents may lack the same decision-making authority as agents. In Pennsylvania, for example, nonagents cannot withdraw life-prolonging measures unless the patient has an end-stage medical condition, leaving a gray zone of medical circumstances in which aggressive interventions such as mechanical ventilation may not be consistent with patient wishes, yet not technically permissible to withhold from incompetent patients under the law.7

What should happen if a family disagrees with the wishes in a living will? Under the law, if a living will is operative and speaks clearly to the clinical issue, it will almost always supersede the wishes of the family, even a family member appointed as an agent. In practice, such conflicts are challenging to navigate. Clinicians may feel ethically obligated to respect patient wishes. They may also worry about worsening bereavement on the part of families, who may dispute that the living will accurately reflect patient wishes. In the ideal scenario, such disputes would be prevented in advance, through clear communication between patient and family about the wishes a patient plans to document. The living will’s communication function may be useful in these situations; clinicians should engage fully with families and try to understand if legal documentation and family wishes can be reconciled.

What happens if family members disagree with the health-care agent? Under the law, the health-care agent – even if not physically present, not related to the patient, or unable to communicate with clinicians without an interpreter – has legal authority to make decisions. But a health-care agent may wish to engage other family members in the decision-making process, or, at a minimum, allow them to remain informed about the patient’s medical status.

Health-care agents have duties in both statutes and common law (judge-made law) to use certain principles to make decisions. Generally, they are expected to exercise substituted judgment, meaning to make the decisions they believe the patient would have made in similar circumstances, even though understanding what a patient would want may be challenging in many circumstances. When patient wishes cannot be known, then they revert to a best interest standard, one that makes the decision that relies on community norms.

Are pregnant patients treated differently? In some states, they are treated differently, and may be limited in withdrawing care, even through a living will or the decisions of a duly appointed health-care agent.8

Are digital ADs legally binding? Websites such “mydirectives” offer the ability to create electronic ADs. The legal status of digitally signing an AD is still unclear, except in specific jurisdictions (e.g., Maryland and California). Whether legally binding or not, however, digital living wills may still serve the communication function of living wills.

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May 29, 2021 | Posted by in CRITICAL CARE | Comments Off on Chapter 16 – Advance Directives
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