Physicians respect a patient's autonomy by recognizing that the patient's right to accept or refuse treatment remains even after he or she loses decision-making capacity. Patients who have lost decisional capacity may continue to communicate through their advance directives, or through a power of attorney or surrogate who interprets what the patient would choose in a given situation.
When medical decisions need to be made for a patient who lacks decisional capacity, physicians should first inquire whether the patient has documented any wishes in a written advance directive such as a POLST form or a durable power of attorney for health care. Optimally, the patient will have documented preferences that directly relate to the proposed treatment. However, this rarely happens. More commonly, a third party is necessary to represent the patient's interests and interpret the patient's known wishes and values in light of the current medical situation. If the patient has designated a decision maker in an advance directive such as a power of attorney for health care, the designated agent should be relied upon to make decisions. If the patient does not have a power of attorney or some other document that directs care, such as a POLST form or living will (or those documents exist but do not apply to the situation at hand), a surrogate should be appointed.
Surrogate Decision Making in the Absence of Advance Directives
Many states have established protocols for identifying a legal third-party decision maker in the absence of a documented advance directive. This third-party decision maker may be called a proxy or a surrogate, depending on the state. Most patients have not completed an advance directive and there should be no presumption inferred from the fact that an advance directive has not been executed. The guiding principle in appointing any surrogate is to find the person, or group of persons, who best know the patient's values and health care goals. This person or persons should be able to effectively communicate with the health care team, and be willing to make choices the patient would most likely make if he or she could speak for himself or herself.
Where they exist, state statutes generally indicate the family of the patient should be responsible for making medical decisions. The order of priority for appointing a surrogate is usually listed by degree of legal or blood relationship, with a court-appointed legal guardian of the patient first, then a spouse or domestic partner (in jurisdictions that recognize this status), adult children of the patient, a parent of the patient, an adult sibling, other family members, and finally a close friend of the patient (Table 34-3). While “family” is generally recognized as a biological or legal relationship, most states have not specifically addressed more complicated relational ties such as when the patient has full siblings, half siblings, and step siblings who all consider themselves to be close relatives of the patient on the same level of the surrogate hierarchy. If more than one person has the same level of priority (such as several adult children), consensus is preferred, but many states allow for a majority decision when consensus cannot be reached. The disagreeing party then has the option of turning to the court to assist in resolving the dispute. In states that do not appoint surrogates by statute, case law may offer guidance, or the physician or ethics committee can nominate the decision maker according to the standards of the institution.
Table 34-3 Priority Hierarchy for Appointing a Surrogate ||Download (.pdf)
Table 34-3 Priority Hierarchy for Appointing a Surrogate
|Typical Order of Priority for Appointing a Surrogate in Absence of Applicable Advance Directive (Check Local Jurisdiction)|
Spouse or domestic partner (where legally recognized)
Other family members
A close friend of the patient
Two basic principles should guide treatment decisions for decisionally incapable patients: respecting and promoting the patient's autonomy, and fostering the patient's well-being. All surrogates and care providers have an obligation to follow the informed verbal or written wishes of the patient and to act in the person's best interests. They should also take into account the person's values and goals if those are known. Three legal and ethical standards have been established to guide such decisions: (1) The highest standard is a directly relevant autonomous directive where the patient's wishes in regard to the decision at hand are known, either through documentation or discussion. (2) The most common standard used is substituted judgment where the proxy decision maker is tasked with making the decision he or she believes the patient would have made in this situation based on what is known about the patient's wishes, personal values and preference, and goals. (3) In the best interest standard, the patient's wishes are unknown or have never been known (such as cases involving infants), and the proxy decision maker must weigh the risks and benefits of all of the alternatives and make a decision that achieves the greatest net benefit from the perspective of the patient.
- There are two basic principles that should guide treatment decisions for decisionally incapable patients: respecting and promoting the patient's autonomy, and fostering the patient's well-being.
Confidentiality and HIPAA
Although medical care has always included the need to keep patients' medical information confidential, the Health Insurance Portability and Accountability Act (HIPAA) has further specified and codified the responsibility of health care providers. In order to make effective decisions, proxy decision makers need information about the patient's medical history and care. HIPAA regulations recognize this and entitle duly documented proxy decision makers to the same medical information as the patient in regard to the decision at hand. However, physicians should disclose only that information needed by the proxy to make an informed choice regarding the decision at hand. If possible and/or when directed by the patient, physicians should avoid discussing highly personal information such as sexually transmitted diseases, HIV status, chemical dependency, mental illness, or any history of sexual or physical abuse, unless such information is absolutely necessary in order for the proxy to make appropriate and informed decisions.
The exact scope of a surrogate's decision-making authority varies by state. Patients may also document certain limits on the kinds of decisions that may be made by their surrogate. For example, some living wills state the surrogate decision maker cannot override specific instructions such as a request not to receive CPR. Some state laws also suggest the patient must assent to, or minimally not refuse, decisions made by the surrogate. This offers a layer of protection to those patients who may not reach the threshold for decisional capacity with respect to the decision at hand, but who are still aware of and engaged with what is happening to them. When there is disagreement between the patient and surrogate, and a clinically appropriate compromise that is acceptable to both parties cannot be found, it is advisable to contact the hospital's ethics committee.
Because the surrogate is often an individual whom the patient has not explicitly appointed to the role of decision maker, many states place restrictions on the types of end-of-life decisions that can be made by the surrogate. Broadly speaking, these restrictions may require the attending physician and one additional physician to document that the patient has a “qualifying condition,” such as a terminal illness or permanent unconsciousness, before honoring a request by the surrogate to withhold or withdraw life-sustaining treatment.
Generally, a proxy decision maker for a decisionally incapable patient may conduct routine medical affairs for the patient including consulting with the patient's health care providers, providing verbal or written consent for medical procedures, applying for public benefits such as Medicare or Medicaid, authorizing the release of information and clinical records needed for continued care, and authorizing the transfer of the patient to or from health care facilities. Care should be taken that such activities are warranted by the patient's clinical condition, do not conflict with the patient's known wishes, and that they are undertaken by the proxy only when it is not expected that the patient will be returned to a decisionally capable state in the time necessary to assure continuity of care.
Occasionally, situations arise in which a surrogate makes a decision or requests an intervention that conflicts with either the patient's advance directive or other instructions the patient provided to the care team while the patient was still decisionally capable. For instance, it is not uncommon for a patient's child to request CPR be provided even when the patient has specifically requested a DNR order. Plans and treatment goals previously established between the patient and the physician should not be changed without concrete evidence that those decisions were made due to factual, conceptual, or clinical error. The primary responsibility of the physician is to the patient, and decisions made after the patient loses decisional capacity should further the continued interests of the patient. Additionally, surrogates are morally and legally required to make decisions that conform as closely as possible to those the patient would choose for himself or herself. Physicians thus are not obligated to follow requests by surrogates that do not comply with the patient's known wishes. If the physician is unable to resolve the conflict, it may be helpful to involve a third party to help mediate the situation such as an ethics consultant or committee, or hospital legal counsel. If an ethically, legally, and clinically sound agreement cannot be reached, court review may be necessary.
- Occasionally, a surrogate may request an intervention that conflicts with the patient's previous instructions (such as rescinding a DNR put in place by the patient). Physicians are not obligated to follow requests by surrogates that do not comply with the patient's known wishes. Assistance from the ethics committee or legal counsel may be necessary in order to resolve the conflict.
In health care, the principle of implied consent is sometimes colloquially referred to as “emergency consent” since it is most commonly invoked when the following conditions are met: (1) there is an emergency circumstance where the patient is unable to participate in the informed consent process (usually because the patient is unconscious), and there is no available evidence of the patient's wishes not to receive the therapy; (2) no other proxy decision maker is available to make decisions for the patient; and (3) the physician is compelled to immediately provide necessary treatment without which serious or irreversible harm to the patient's life or health may result. Thus, implied consent is presumed when a person needs help and cannot explicitly provide consent. Implied consent also refers to situations where the patient does not expressly state, either verbally or in writing that a procedure may be done, but his or her actions imply consent. A common example is when the patient extends an arm after being told that the physician wants to draw blood for laboratory analysis. Implied consent is legally accepted and provides a defense against claims of battery, but not against claims of negligence. Physicians should follow their institutions' documentation standards when relying on implied consent in the context of a medical emergency, and clearly identify why emergency treatment was necessary as well as the nature and immediacy of the threat.
The rights of minors to make decisions about their medical care have expanded over the past decade. While in general, a parent or legal guardian of a minor has to provide consent for treatment, some jurisdictions are granting older minors, especially those over the age of 16, broad leeway to make decisions about their medical treatment. Nearly all jurisdictions allow legally emancipated minors and minors who are pregnant or parents themselves to make medical decisions for their care and their own minor children. However, some states now have statutes or case law that allow mature minors to provide consent to procedures if they can demonstrate that they are mature enough to understand and appreciate the nature and consequences of a proposed medical procedure or treatment. Rather than reliance on an “all-or-none” phenomenon, the mature minor doctrine allows for individual assessment of the stability of the minor patient's value system along with their emotional and intellectual development. This approach recognizes that decisional capacity in a minor is a gradual process affected by personal characteristics and environment. The laws concerning the extent minors are allowed to make medical decisions for themselves vary from jurisdiction to jurisdiction, and most jurisdictions are reluctant to allow minors to refuse potentially life-sustaining treatment without involvement of the court. It is therefore advisable that each physician be familiar with the local statutes.
Artificial Nutrition and Hydration
Medical and legal issues abound when it comes to the use of artificial nutrition and hydration (ANH), particularly in the dying or permanently unconscious patient. The U.S. Supreme Court made it clear in its 1990 Cruzan decision that ANH is a medical treatment and a decisionally capable patient may refuse any and all types of medical treatment, including ANH and other types of life-sustaining treatment. Patients may also execute a specific instructional directive that references ANH and clearly communicates the patient's refusal of ANH. However, state laws are highly variable in regard to proxy decision-maker requests to withhold or withdraw ANH, and many living will laws expressly forbid the withholding or withdrawal of ANH as a means to shorten the dying process. Some states require “clear and convincing” evidence of the patient's wishes to forgo administration of ANH before a proxy request may be honored. Clear and convincing evidence would require either a written directive or evidence of a serious, reflective discussion with the patient on the subject. Other states have lesser evidentiary standards, and some include ANH within the parameters of life-sustaining treatment that may be terminated upon request of a proxy decision maker whenever the standards are met for withdrawal of life-sustaining treatment. Physicians should refer to the specific statutes in their state for guidance.
The U.S. Supreme Court ruled in 1997 that states may maintain laws that prohibit or allow euthanasia and assisted suicide. A few states now allow terminally ill adult patients, who are decisionally capable and able to communicate their wishes, to end their lives through the voluntary self-administration of a lethal dose of medication prescribed by a licensed physician expressly for that purpose. In Oregon and Washington, the statutes are called the Death with Dignity Act. Patients must fulfill several requirements before receiving the medication, including initiating verbal and written requests, undergoing a second opinion consultation, receiving psychiatric intervention if the patient is perceived to be depressed, and undergoing a 15-day waiting period. This process is sometimes called “physician-assisted suicide” because patients self-administer the medication at a time of their choosing with the intention of ending their life. Because the patient actively takes steps to end his or her life, this is different than withholding or withdrawing medical treatment where barriers to the dying process are removed. This is also different than voluntary active euthanasia where the physician acts upon the voluntary request of a decisionally capable patient and the physician intentionally administers medications or other interventions to cause the patients death. In states that allow it, patients must request and self-administer the lethal medication. No state allows the medications to be administered or requested by a proxy decision maker, even where there is clear evidence of the patient's wishes.