The beginnings of advance directives

Although the concept of living wills began in the 1960s, the legal beginnings of what we now call “advance directives” arose from a grassroots response to In Re Quinlan, decided by the New Jersey Supreme Court in 1976.[2] Ms. Quinlan, a 21-year-old woman, suffered two prolonged anoxic episodes of unknown origin, was resuscitated by a rescue team, hospitalized, and subsequently was in a persistent vegetative state (PVS). Her father petitioned the court for guardianship of her person for the purpose of requesting that respirator support be discontinued, with the understanding that the higher probability was that his daughter would die. His request was eventually granted by the court.

The Quinlan case established the legal basis to (a) allow patients to make written or oral advance declarations regarding their own end-of-life treatment (i.e., the living will); (b) allow patients to appoint proxy decision makers (i.e., the durable power of attorney for health care); and (c) encourage a meaningful discourse on values and the role of family and loved ones in future end-of-life treatment decisions (relevant later in the concepts of the values history and the family covenant). Today, advance directives are used by health-care providers as evidence of a patient’s preferences to help guide medical care for those incompetent to make their own medical decisions.[3] In this way, advance directives are an extension of the well-recognized ability of individuals to exercise self-determination through informed consent or refusal.

The living will

An individual exercises self-determination with advance directives that make, and then project into the future, decisions regarding medical interventions. These health-care decisions to accept or refuse treatment are binding on physicians and institutions. The living will, then, is an expression of informed choice in advance of the time in which the patient is terminally ill (or persistently vegetative depending on the relevant statute) and has lost decision-making capacity. The latter is a clinical judgment, to be made according to prevailing standards of reasonable clinical judgment. States vary according to whether the patient’s declaration or living will must be written, or whether a written or oral declaration must take a particular form. Living will laws also provide for criminal and civil immunity for physicians and institutions that carry out a valid living will in which no malpractice occurs.

Readers should familiarize themselves with the details in relevant statutes for each reader’s jurisdiction. Many states allow surrogate decision making for patients who have not named a surrogate decision maker, which allows treatment refusal for those patients without living wills. States usually delineate who has legal standing as a surrogate in a hierarchy of guardians, family members, and so on, in a rank ordering determined state by state.

Regardless of where a patient’s advance directive is written, an advance directive is a tool for patients to continue to exercise self-determination after their capacity to make their wishes known has ceased. Even if a directive does not comply with the state’s statutory requirements (as may be the case when a document has been created in a different state than the one in which patient now resides) it may still serve as evidence of a patient’s preferences to assist in guiding medical treatment.[4]

Many advance directives are aimed at refusing unwanted types of treatments when prognosis is poor, but some persons who wish to continue treatments have also executed advance directives to that effect, sometimes known as an “affirmation of life.” Such directives may be valid in guiding care, depending upon the state; however, if a therapy is not beneficial or palliative in nature (i.e., per evidence-based medicine criteria or credible physiologic reasoning), it may still be morally acceptable for a physician or health-care facility to refuse to provide it and seek to transfer the patient’s care to another physician or facility.

The durable power of attorney for health care

As experience was gained with living wills, a concern arose that the scope of advance informed refusal in living wills was not broad enough. Living wills often refer only to circumstances where patients are terminally ill or persistently vegetative; often, these conditions are not met even though a patient may not have decision-making capacity. The preferences indicated in an advance directive that applies to one diagnosis and prognosis likely do not apply to different circumstances. In such cases, patients’ preferences would best be represented by family members or other loved ones.

For many years, common and statutory law have allowed individuals to appoint an agent through a durable power of attorney. A power of attorney is the assignment of certain legal powers to others, for example, to dispose of property in the physical absence of the owner. A simple power of attorney may not be durable; that is, it may not persist beyond that individual’s loss of decision-making capacity. The durable power of attorney was developed to permit the conveyance of one’s legal powers to another upon one’s loss of decisional capacity. The durable power of attorney for health care (DPAHC), also called a health-care proxy, permits a named individual to make one’s health-care decisions upon one’s loss of decision-making capacity of any type. An important distinction between the DPAHC and the living will is that the DPAHC takes effect with any form of a loss of decision-making capacity, while living wills often apply directly only in cases of terminal illness or persistent vegetative states. Also, proxy decision makers can generally request or refuse any intervention, while living wills typically discuss only life-prolonging interventions.

Regardless of the form of advance directive, either living will or DPAHC, the use of the “substituted judgment” standard is preferable to that of the “best interest” standard. Substituted judgment requires a knowledge of the patient’s values and preferences of what they would or would not want done using values- or scenario-based constructs that the patient has articulated in the past to their agent and other loved ones. A best interest standard is a weaker inference of what would be best for the patient who may not have had the opportunity to vocalize her or his values or preferences for life-sustaining treatments.

The learning point for clinicians is to illustrate the need for their patient to articulate (a) what treatments they would or would not want done in the future and (b) why. These preferences should be made clear both to their doctors and to their trusted loved ones, who may be placed in the position of making future decisions. By extension, patients should also be actively encouraged to appoint a proxy under a DPAHC and asked to consider a living will (if that is their wish) so that their future incapacitated selves will be protected from ambiguity due to insufficient information regarding end-of-life care treatment. These conversations should be revisited over time as patient goals and wishes can change as diseases progress.

The Patient Self-Determination Act

A major legal development in advance care planning was the Patient Self-Determination Act (PSDA) of 1990, which took effect in December of 1991.[5] The PSDA aims to reduce the number of situations in which patients do not have written advance directives by requiring institutions that receive federal funds and HMOs to notify their patients on admission (or enrollment in the case of HMOs) about their relevant rights under relevant state law to execute an advance directive. In addition, patients are to be notified about their rights of informed consent generally. Finally, among other provisions, the law also requires hospitals to have policies on these matters, to notify patients that there are such policies, and to provide information to patients about these policies.

Although the PSDA has increased patient awareness of advance health-care planning, it has not solved the problem of patients not having advance directives.[6, 7] Regrettably, the PSDA often does not get carried out by health-care professionals, but instead is usually a single query to the patient or family by admissions personnel or is in a raft of documents mailed to a new patient joining an HMO. It takes time, discussion, and patient education to effect an increased usage of advance directives.[8, 9] The clinician should assume that she or he bears significant responsibility for discussing advance directives with patients in the outpatient setting and for anticipating and seeking to prevent ethical conflicts that can arise in association with advance directives.

Ethical challenges with advance directives

Living wills, MOLST forms, and DPAHCs have a number of structural challenges that can limit their utility in guiding a patient’s health care, especially if they are not addressed before a crisis arises.

A response to these ethical challenges: the values history

These ethical challenges of advance directives led investigators to develop an explicitly value-based advance directive instrument called the values history to address prospectively the above challenges.[14–17] The term “value history” was first used by Dr. Edmund Pellegrino in the 1980s to describe the interactive discussion and narrative of values that should take place between patient and physician.[18] The values history is an attempt to catalyze this conversation about the patient’s values and beliefs regarding advance directives, thereby promoting patient autonomy through a value-based discourse. These collected values, and the narrative of their discussion, can then be utilized in future medical scenarios in ways that cannot readily be addressed by means of a standard advance directive.

Documenting the patient’s values helps to contextualize these preferences for future use (in the absence of a known illness). The values contained in the values history can indicate the medical therapies that patients would wish to forgo if they were terminally ill. Specifically, there is a high degree of correlation between financial, emotional, and physical burden avoidance and the desire to forego end-of-life treatment.[19–21] Patient values can help the patient and the patient’s family and physician better understand how to invoke the patient’s specific directive preferences in future, unforeseen medical circumstances. This approach allows for greater flexibility in the physician’s response to the patient’s future incapacity by heightening awareness of why patients would prefer or not prefer treatment modalities, which then assist the family and physician in writing orders when the need for them later arises. Almost all jurisdictions and the Department of Veterans Affairs policy allow specific directive statements to be added to a living will as well as the DPAHC, when their intent is in concordance with the advance directive.

The values history contains two parts: (a) the values section, which identifies values, and (b) the directives section, which offers specific preference statements based on the patient’s values. The values section elicits from the patient his values regarding end-of-life care. The patient is first asked to evaluate his future life in the context of duration of life versus quality of life. The patient is then asked to identify the end-of-life values that are most important to him. The physician is encouraged to discuss the patient’s values at length to allow for their elaboration or for the addition of other values that more completely reflect the individual’s concerns or beliefs about end-of-life treatment. The directives section invites the patient to select specific treatment directives in light of those values and beliefs. The goal of this two-part approach is to encourage patient–physician discussion on the use of medical treatments at the end of life (particularly when they may be most relevant, or most concerning to them), which may assist the patient to understand better and articulate his values. In turn, the physician can better respect the patient’s autonomy by clarifying misconceptions that could hinder the informed consent process.[22]

The values history’s directives section list of treatment preferences should focus first on those that are most likely to be used for the patient, given their current medical problems. The directives section begins with treatment preferences in acute care situations: consent for or refusal of cardiopulmonary resuscitation, ventilator use, and endotracheal tube use. Preferences regarding treatments in chronic care follow, such as use of intravenous fluids, enteral feeding tubes, and total parenteral nutrition, medication, and dialysis. During this part of the values history process the physician explains the treatment modalities, their beneficial effects, short-term and long-term consequences, and possible harms in the contexts of terminal illness, irreversible coma, and PVS. During conversations on discontinuing treatment, the patient should be reassured that the administration of medications for symptom relief (including treatment for pain, nausea, and shortness of breath) would not be withheld if required for comfort care, even if such therapy may involve an incremental increase of the risk of mortality.

The values history is different from the living will and DPAHC in that “trials of intervention” can be more easily articulated for specific treatments.[23] This concept of trials of intervention is important in critical care, replacing the “all or nothing” approach.[24] The clinical reality is that aggressive management is often undertaken in a trial to see if it will benefit the patient with either (or both) physiological or palliative goals. Trials of intervention also create the possibility of openly discussing the patient’s values and the physician’s values to find common ground.

For all of the preceding directives (except cardiopulmonary resuscitation), the patient may choose wanting an intervention, a trial of intervention (limited by time or medical judgment), or nonintervention. The patient may decide that after a set time trial attempting an intervention, if no benefit of the therapy were apparent, the intervention should be discontinued. The patient can instead decide to have a treatment continued as long as it benefits the patient, in the physician’s best medical judgment (and if possible, in coordination with the proxy). Benefit-based trials require a significant level of trust among the patient, the proxy, and the physician. The task for the physician is to allow adequate time for a therapy to benefit the patient before considering stopping it. The parameters the physician will use should be discussed with the patient. Benefit-based trials more accurately convey how the DPAHC agent may approach intervention in an unforeseen future medical condition. Trials thereby allow for assignment of treatment as a trial with subsequent decisions made on the basis of benefit (or lack of it), time, or a later decision by the patient’s proxy. Identifying common ground of values is the core strategy of preventive ethics.

The values history also offers several unique directives: refusal of intensive care treatment, autopsy, a “proxy negation” directive to exclude a specific potential decision maker (due to differing values) and “do not call 911” for patients in long-term care facilities or home care.[15] In states or institutions without MOLST statues or policies, this may allow persons to guide caregivers about their preferences for emergency treatments in the case of a crisis. However, it does not replace a MOLST, as it is not a medical order, nor does a MOLST replace a values history. The MOLST can translate the values and preferences in a Values History into medical orders that can be followed. The values history can help one glean the values and reasons behind the selection of the preferences in the MOLST.

The end of the directive section allows the patient to add consent, refusal, or trials of intervention to other specific directives not otherwise addressed (e.g., specific types of surgery).