What is the legal document that allows people state their wishes for end of life medical care in case they become unable to communicate their decisions?

Advance Directives

Anadvance directive is a mechanism that allows patients and/or appropriate surrogates to designate the desired medical interventions under applicable circumstances. Discussion and clarification of resuscitation status should be included in advance care planning, and for children attending school despite advanced illness, may need to be addressed in that setting. Decisions regarding resuscitation status in the out-of-hospital setting can be an important component of providing comprehensive care.

The 1991 federal Patient Self-Determination Act requires that healthcare institutions ask adult (>18 yr) patients whether they have completed anadvance directive and, if not, inform them of their right to do so. Few states support creation of broad advance directives for minors because advance directives are traditionally created for persons with legal decision-making capacity. Some have moved in this direction, however, because it is recognized that minors may be capable of participating in decision-making, especially if they have experienced chronic disease. Most states have approved the implementation ofprehospital orportable DNAR orders, through which adults may indicate their desire not to be resuscitated by emergency personnel. On a state-by-state basis, portable orders regarding resuscitation status may also apply to children. If DNAR orders exist for an infant or a child, it is important to communicate effectively about their intent among all potential caregivers, because nonmedical stakeholders such as teachers or sitters may not want to be in the position of interpreting or honoring them. Some institutions have established local policies and procedures by which an appropriately executed, outpatient DNAR order can be honored on a child's arrival in the emergency department. Key features may include a standardized document format, review by an attending physician, ongoing education, and involvement of a pediatric palliative medicine service.

In cases involving prenatal diagnosis of a lethal or significantly burdensome anomaly, parents may choose to carry their fetus/unborn child to term in order to cherish a short time with the infant after birth, but they do not feel that resuscitation or certain other aggressive measures would support their well-considered goals of care. In this setting, a birth plan explaining the reasons for each choice can be developed by the parents and medical staff before delivery and shared with involved medical staff. This approach gives staff a chance to find other caregivers if they are uncomfortable with the approach, without abandoning the care of the child. If, after evaluation at birth, the infant's condition is as had been expected, honoring the requested plan is ethically supportable and should be done in a way that optimizes comfort of the infant and family.

Many states usePhysician Orders for Life-Sustaining Treatment orMedical Orders for Life-Sustaining Treatment approaches to communicating a patient or surrogates wishes regarding advance care planning. Other tools, such asFive Wishes, have been adapted for use by adolescent patients to elicit values and desires. It is important for pediatricians to learn which pathways for communicating goals of care are available in their own states.

Advance Directives

Advance directives are written expressions of medical decisions that are made by the patient while he or she is still capable of making those decisions. A living will is a directive to a physician when the patient is nondecisional and has a terminal condition (including, in some jurisdictions, persistent vegetative state) in which the patient refuses life-sustaining medical treatment. A power of attorney for health care is the appointment of an agent to represent the patient when the patient is no longer decisional. It applies during any incapacity and is often written with directions to the agent about the patient's treatment preferences, including preferences about nutrition and hydration.

Advance directives are appropriate planning tools for end-of-life decision making. However, only a minority of patients actually complete an advance directive, although the proportion is higher for patients facing the end of life. Additionally, studies show that proxy decision makers are often poor predictors of the patient's wishes.8 There is also a current controversy about whether completion of advance directives significantly guides the course of patient care.9 Nonetheless, failure to engage in advanced care planning is worse, and advance directives may be more effective when they are part of a larger advanced care planning regimen in which the patient expresses wishes about end-of-life care to family members.10

Advance directives are even more important in light of recent legal developments. In determining whether the guardian or surrogate may withdraw or withhold life-sustaining medical treatment of a patient who is no longer decisional, some state courts have required clear and convincing evidence of the incapacitated patient's wishes. This requirement results, in part, from legislative concerns about withdrawal of life-sustaining medical treatment without the patient's explicit consent, as well as the courts’ concern that the consequences of decisions to withdraw life-sustaining medical treatment are, for the most part, ultimately irreversible.

Advance directives may satisfy legal requirements for clear and convincing evidence of the patient's wishes for withdrawal of life-sustaining treatment. The use of advance directives will allay legal concerns and may ensure that the patient's wishes are implemented.

Advance Directives

The ethical principal of patient autonomy is the foundation for a range of documents that outline what care a patient wishes to receive if he or she is no longer able or competent to directly communicate those values. The termadvance directive describes several types of legal and quasi-legal documents. Advance directives usually are written to avoid prolongation of an inevitable, often painful or non-sentient dying process. However, they can also be used to instruct surrogates and the patient's medical team to “do everything,” whenever possible. Advance directives include the living will, durable power of attorney for health care, prehospital advance directive (Box e10.3), and mental health advance directive. Do not attempt resuscitation (DNAR), do not hospitalize, and out-of-hospital DNAR orders are not considered to be advance directives but rather are physician orders, because they are not patient or surrogate initiated. All play a role in emergency medicine.

Advance directives, DNAR orders, and other end-of-life considerations are discussed inChapter e9.

3 Is an “advance directive” a legal document?

An advance directive is a document one creates while competent to express future wishes regarding medical care in the event that he or she becomes incompetent or otherwise unable to make his or her preferences known. Living wills are a popular form of an advance directive. Such directives indicate what type of care a person wishes to receive and may also appoint an individual or third party (e.g., durable power of attorney, health care proxy) to be responsible for making decisions should the person become incapacitated. Most readily available advance directive documents are very general in nature and lack specificity in terms of conditions for aggressive treatment or withdrawal of care. However, authoring an advance directive should be encouraged by all physicians to their patients because it designates a health care decision maker. Despite the lack of legal statutes, courts tend to uphold an individual's advance directive unless there is a specific reason to doubt its validity. The Patient Self-Determination Act of 1991 (enacted by U.S. Congress in 1990) now requires all hospitals to discuss advance directives and to have forms available to their patients at the time of admission.

Greco PJ, Schulman KA, Lavizzo-Mourey R: The Patient Self-determination Act and the future of advance directives. Ann Intern Med 115:639–643, 1991.

Advance Directives and Surrogate Decision Makers

Critical decisions regarding medical care often arise when patients are too ill to formulate or express decisions regarding medical interventions.Advance directives were developed after several legal decisions affirmed that patients can refuse even lifesaving medical care and that clear and convincing evidence of the patient’s wishes is needed to allow surrogate decision makers to request withdrawal of life-sustaining therapies.76 An advance directive is a document executed by the patient before incapacity to provide the patient’s physicians with guidance when the patient cannot communicate for himself or herself. Such directives include the following: living wills, which detail the therapies a patient would accept or refuse in the case of terminal incapacity; DNAR orders; and any other preferences regarding medical care decisions.

A surrogate decision maker is someone whom the patient has appointed to make healthcare decisions for him or her (a durable power of attorney [durable POA]) or an individual with other legally recognized authority by virtue of his or her relationship with the patient.

A durable POA for healthcare decisions may be given by the patient to a specific person he or she designates to make healthcare decisions for them if they become incapacitated. The authority vested in a POA supersedes most other decision makers, including family members, except a court-appointed guardian.

When the patient has not designated a durable POA, doctors rely on family members to make decisions for the patient. Many states have a legally defined hierarchy of decision makers. Commonly, the surrogate hierarchy is the spouse or legally recognized domestic partner, followed by the children, if all are in agreement, then parents, if both are in agreement, and then siblings, if all are in agreement. The anesthesiologist should familiarize himself or herself with the specific laws of the state in which they practice.

Surrogate decision makers are explicitly trusted to act in “substituted judgment” to provide what the patient would have wanted and theoretically are not asked merely for their own preferences. However, surrogate decision makers at best only approximate the patient’s decisions because their interpretation is subject to their own biases, values, and psychological agendas. Incompetent patients can be emotionally and financially burdensome, and decision makers may have conflicts of interest that distort their beliefs and testimony about what the patient would have wanted.

Studies demonstrate that patients and their proxies only infrequently discuss issues and values involving life-sustaining technologies. Discrepancies between patients and proxies are often significant in the assessment of patients’ emotional health and satisfaction. Neither physicians nor proxies can always accurately predict the patient’s preferences for life-sustaining therapies.77,78 Nevertheless, with all the imperfections, proxy decision making may be the only option if a patient has not left specific directives.

4 What is an advance directive?

An advance directive is a method of delineating a competent patient's wishes for application at a time when he or she is no longer competent. It maximizes the patient's autonomy, assists physicians in decision making, optimizes the use of medical resources, and provides protection from litigation. Medical management or the lack thereof can be based on the patient's wishes rather than a perceived sense of what is best for the patient. Advance directives may be an informal document, such as a living will, or a formal legal document, such as medical durable power of attorney. Advance directive laws vary state to state and are activated when a patient is in a terminal state, state or permanent unconsciousness, or persistent vegetative state. Despite increased awareness of advance directives, only 25% of adults have them.

Advanced Care Planning

Advance directives is a general term that describes legal documents (e.g., living wills and durable power of attorney for health care). These documents allow a person to give instructions about future medical care if an individual is unable to participate in medical decisions because of serious illness or incapacity.63 Clinicians treating cancer patients need to make it clear that discussions of advance directives do not equate to stopping treatment.2 Preferences for how aggressive to be in treating cancer are separate issues. As such, discussions regarding advance directives need to begin early in the course of treatment rather than in the days when incapacity or death is imminent. Clinicians should begin discussions with older patients about preferences for specific treatments while they have the cognitive capacity to make these decisions.63 Patients should be asked to identify a spokesperson to make medical decisions if the patient cannot speak for herself or himself. This information should be conveyed through a durable power of attorney for health care (DPAHC), which also allows patients to specify treatments that they do not want. Many states have allowed the use of Physician Orders for Life-Sustaining Treatment (POLST), a specific advance directive that documents a patient’s end-of-life treatment preferences and serves as an order sheet. The standardized form is signed by both the physician and the patient and must be honored across all settings of care. (See Chapters 28 and 29Chapter 28Chapter 29.)

Advance Directives

Advance directives are written legal documents that give a patient the ability to influence future treatment decisions should the patient lose the ability to make decisions. Advance directives are the focus of the Patient Self-Determination Act (PSDA), a law that went into effect on December 1, 1991.32 The intent of the PSDA is to promote the knowledge and use of advance directives. The law, which applies to all health care institutions that receive Medicare or Medicaid funds (hospitals, nursing facilities, hospices, home care programs, and health maintenance organizations), requires institutions to give all individuals receiving medical care written information about their rights under state law to make decisions about their care, including the right to accept or refuse medical or surgical care. Individuals also must be given information about their rights to formulate advance directives. Institutions must prepare policies consistent with state law, document in each individual’s medical record whether the individual has executed an advance directive, and develop public education programs.

The two main types of advance directive are living wills33 (Box 10-15) and durable powers of attorney34 (Box 10-16); some hybrid documents combine elements of each. A living will provides direction regarding specific medical treatments the person does or does not want at the end of life and can serve as a general reference for decision making. The advantage of living wills is that individuals can identify specific interventions, such as surgery, dialysis, chest compression, and intubation and mechanical ventilation, that they do not want. Living wills are especially useful for patients with chronic illnesses. However, living wills require that individuals predict future acceptable and unacceptable medical interventions, often without an accurate or complete understanding of all available options or the implications of each option. Living wills do not appoint an alternate decision maker and often must be interpreted when difficult decisions must be made regarding end-of-life treatment.

Written durable powers of attorney appoint an alternate decision maker (the proxy) who is legally empowered to make decisions regarding the care of the patient. A durable power of attorney is activated whenever the patient is incapacitated. The advantage of the durable power of attorney is that an individual can identify a person to engage in future discussions regarding specific clinical situations. However, the durable power of attorney does not by itself tell the proxy what decisions to make on the patient’s behalf. The scope of proxy responsibilities varies by state statue, but the proxy is generally empowered to admit the person to an acute or chronic care facility and to arrange for and consent to medical and surgical treatment.

One of the most common problems associated with advance directives is that the document may not be available when decisions have to be made. The document may be locked in a safe deposit box, filed in a lawyer’s office, or held by distant offspring. Another problem is that the document may be out of date and may not accurately reflect the patient’s desires as the patient faces the realities of end-of-life illnesses and gains experience with available technology and other interventions. Pharmacists should be aware of the presence of advance directives and ensure that therapeutic decisions are made in accordance with the patient’s wishes.

Medical Ethics

The Patient Self-Determination Act took effect on December 1, 1991. The act established guidelines to allow patients to participate fully in decisions regarding their healthcare, particularly decisions made in circumstances of severe or terminal illness. The act strives to establish a patient–physician interaction that allows both parties to balance individual morals and values against the known risks and benefits of proposed medical care. For example, patients might want to decide under which circumstances they would want to be resuscitated or whether they would want to be nourished by a feeding tube to sustain life. Counseling patients, families, and caregivers on the risks and benefits of tube feeding may involve the expertise of the dysphagia specialist.1 One study found that speech-language pathologists (SLPs) who manage patients with dementia are involved in the decision making in 65% of cases when the recommendation is made for some type of alternative nutrition.2

Medical ethics is a subspecialty of medical care that brings together patients, caregivers, and nonmedical and medical professionals in an effort to make the best decision regarding a healthcare issue. The decision rests on the understanding that it is finalized by balancing data from individual and societal morals and values, evidence-based medical knowledge, and legal precedent. Ethical dilemmas result when balance is not achieved—when one party is not in agreement with the plan of care. For example, a patient may not agree to the short-term use of a nasogastric tube (NGT) for feeding because of religious objections, although the medical team is convinced that it may save or prolong the patient’s life. These dilemmas need to be resolved and may be referred to the medical center’s ethics committee. Solutions generally are possible with a rational analysis of (1) how the patient came to establish his or her healthcare preferences; (2) the medical risks and benefits of a proposed intervention; (3) the burdens that medical intervention might bear on the patient and family; (4) the effect on the patient’s and family’s quality of life; and (5) any legal constraints, such as the patient being incapable of making an informed decision.

3 What is an advance directive?

An advance directive is a set of instructions delineated by a competent patient to determine their wishes for treatment at a time when he or she is no longer competent. It respects the patient’s autonomy by allowing self-determination of their future care. It assists families and physicians in decision making based on the patient’s wishes rather than a perceived sense of what is best for the patient.

Advance directives may include:

An informal document, such as a living will, which is a list of instructions made by a competent person about future medical treatment. It produces a preillness guideline for future caregivers in accordance with the patient’s wishes.

Formal legal appointment of a decision maker, such as a medical durable power of attorney (DPOA). A DPOA is a patient-appointed proxy decision maker. This decision maker becomes active as soon as the patient is no longer able to make competent medical decisions. The durable power of attorney must be established prior to the person becoming incapacitated.

Advance directives are activated when a patient is incapacitated by illness. Laws surrounding advance directives vary by state.