What should a healthcare provider do when family questions the decisions reflected in a patient's living will? When there are disagreements among family members and patients regarding treatment decisions in a presumed end-of-life situation, the lasting impressions of miscommunication and lack of support1 may leave irreparable divisions among those involved.

Background and terminology

The term "living will" is frequently used interchangeably in healthcare with "advance directive," although their definitions differ slightly. A living will is a patient's written expression of his or her wishes regarding the withholding of life-sustaining treatment in the event of a terminal condition or permanent unconsciousness.2

An advance directive is a written document informing others about the patient's wishes regarding end-of-life treatment decisions in the event that the patient becomes unable to communicate his or her own wishes.3

The term "durable power of attorney" for healthcare is a legal designation that empowers an agent or proxy identified by the patient to make healthcare treatment decisions when he or she has lost cognitive capacity.2 This proxy or surrogate is obligated under the legal principle of substituted judgment to make treatment decisions in the manner in which the patient would have if he or she was able to speak for himself or herself.4

Most recently, some states have merged the living will and the durable power of attorney for healthcare into a proxy directive called an "Advance Directive for Healthcare." In the absence of a formal proxy designation through a durable power of attorney for healthcare or an advance directive for healthcare, most states have enacted legislation called default surrogate consent, or family consent laws that list the order or hierarchy of permissible surrogate decision makers. The scope of their respective decision-making authority varies widely among states.2

The issue that has confounded healthcare providers and families is the clear determination of the "terminal condition" or "permanent unconsciousness."5 Advance directives do not rely on decisions regarding terminal status or permanent coma. In some cases, a patient's family members may deny that an advance directive exists or that the discussion of end-of-life treatment has ever occurred.6-9

The healthcare provider's conflict

From the perspective of the healthcare provider, an agent who speaks for the patient who comes prepared with supporting documentation makes the end-of-life decision-making situation more manageable. However, if there is no formal durable power of attorney for healthcare but there is evidence of a living will, then the healthcare provider must know how to properly handle the family's potential disagreement over the patient's documented wishes.

Possible solutions

The best approach to avoid disagreements when a living will or advance directive for healthcare is implemented is to have begun the discussion process regarding end-of-life treatment strategies long before they are necessary. The trajectory of chronic illness is not necessarily predictable, but it is identifiable.

As a patient's routine visits progress, opportunities exist for the healthcare provider to discuss how well the patient understands his or her condition and future options, as well as to suggest the involvement of family members in these discussions. A healthcare provider must be able to listen to the patient's expectations and concerns, as they provide an insight into the patient's goals. Likewise, extensive discussions of a patient's end-of-life care will work only when the patient is ready to discuss these options, frequently after an alteration in prognosis has occurred.10

If the process of ongoing communication is not available to the healthcare provider due to a family's disagreement, it is then necessary to determine when the living will was written. Preferences that were expressed in a document prepared 10 years prior to its disputed implementation when the patient was younger and less near death may no longer be what the patient wishes. It is also worth questioning which of the patient's autonomous wishes should be honored: those of the person who was preonset of disease or injury or the person who is postdisease or injury. Context and time affect everyone's decision making.11 It is unreasonable to expect a patient to make irrevocable decisions without having sufficient information, which may result in a scenario suggesting a lack of informed consent.

The healthcare provider's advice to the family surrogate in this situation should reflect the patient's best interests as the healthcare provider understands them to be based on the provider's relationship with the patient. Similarly, the judgment of family surrogates who may have been unexpectedly thrust into the position of decision maker may be clouded by their own preferences, as opposed to any actual information received from the patient. Despite the legal obligation to represent the patient's preferences, many surrogates are influenced by their own values, beliefs, guilt, or anxiety over the burden of this position.12

When the end-of-life situation occurs abruptly, the impact of the foregoing elements are enhanced by the need to accommodate and protect the family as they grieve the impending loss of their loved one. Furthermore, a living will or advance directive for healthcare written in imprecise or ambivalent language adds very little clarity to an already complex situation. In this case, the family surrogate may question and block the directions portrayed in the document.

Institutional ethics committees are uniquely designed to be involved in these patient-family-provider dilemmas. Their goal is to ensure that all parties' interests are communicated, respected, and balanced.13

Conclusion

The healthcare provider is in the unique position through the ethical and legal obligation, to normalize the discussion of dying with the patient and with a family of potential surrogates as a part of ongoing patient care.1

The advance directive for healthcare which includes the living will and the durable power of attorney for healthcare is merely the document reflecting the true process of promoting patient self-determination.14 The goal of care should be clarification of the patient's expressed wishes by the healthcare provider and surrogate to ensure that the patient's best interests are met.

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