Advance Care Planning   39  

Linda Farber Post and Marie Boltz

OVERVIEW

As discussed in Chapter 4, one of the most important yet difficult situations health care professionals face is decision making about care for those who can no longer communicate their health goals, values, and treatment preferences. Surrogate decision making has particular relevance in the geriatric setting because the decisional capacity of older adults may be diminished, fluctuating, or lapsed. Precisely because individuals may lack the capacity to participate in discussions when decisions about treatment are required, advance care planning (ACP) has become an increasingly important priority. ACP enables individuals with decisional capacity to prospectively articulate their health goals, values, and treatment preferences so that they can be communicated and honored when the ability to make and communicate decisions has lapsed. It must be emphasized, however, that ACP is not about death, dying, or aging. It is how responsible adults control their future and should be an integral part of routine health care for every age at every stage of health.

One indispensable ACP tool is the advance directive, a simple and effective mechanism for the clear and legally enforceable documentation of these important decisions; all capable adults are empowered to complete such a document. Although health care professionals agree that all decisionally capacitated individuals should be encouraged to execute advance directives, the right not to do so must also be respected. When patients and residents are engaged in discussion about ACP, they should be informed and reassured that neither their providers nor the facilities in which they receive treatment will condition care or make assumptions about their care preferences if they do not have an advance directive.

BACKGROUND

Advance directives are legal instruments intended to secure an individual’s ability to set out prospective instructions regarding health care. Conceived during the 1970s, they responded to the concern that patients who had lost the ability to make health care decisions might be subjected to medical interventions they would not have chosen, especially at the end of life. The 1990 federal Patient Self-Determination Act (PSDA) codified the right to conduct ACP by requiring all health care facilities that receive federal funds to offer patients or residents the opportunity to execute advance directives and assistance in doing so.

Although all 50 states and the District of Columbia have statutory and/or case law governing advance directives and all states honor them, their standards and restrictions differ (Olick, 2012; see also advance directives by state link in the Resources section). Although advance directives are useful whenever substitute decision making is required, they are most often invoked in the geriatric and critical care settings, as disease trajectory declines and the end-of-life approaches.

TYPES OF ADVANCE DIRECTIVES

Advance directives commonly come in two varieties—instruction directives, also known as living wills, and appointment directives, also known as health care proxies or durable powers of attorney for health care. In different ways, they provide direct access to patient preferences, enabling caregivers and families to rely on the most immediate and authentic of the decision-making standards. The first advance directive was the instruction directive or living will, a written set of value-neutral instructions about specified medical, surgical, or diagnostic interventions the individual would or would not want under particular circumstances, usually at the end of life. The structure of the document typically has a trigger phrase, such as, “If I am ever in an irreversible coma … ” or “If I am ever terminally ill …,” followed by instructions related to treatment in the specified circumstances.

Because the living will presents explicit articulation of the patient’s previously expressed preferences, it is assumed to provide helpful guidance to family and caregivers about what she or he would choose in current circumstances. As became apparent, however, this type of directive is significantly limited by the fact that it is a static document that requires an individual to anticipate, often years in advance, some future medical condition(s) and determine the preferred treatment(s). Quality-of-life assessments and care preferences evolve over time, however, and it is not unusual for patients to change their minds about medical interventions that they thought they would or would never be able to tolerate.

Moreover, these documents do not always mean what they say. A living will that states, “I don’t ever want to be on dialysis” probably does not mean, “I don’t want three dialysis treatments if they will return me to baseline kidney function.” What the individual probably means is, “I don’t want to be on dialysis for the rest of my life.” But living wills typically do not provide that kind of nuanced interpretation. Finally, this type of directive usually refers only to end-of-life care. The result is a set of instructions that reflect what the patient believed and tried to communicate at a particular time about what she thought she would want under different circumstances at a later time. Because of their significant limitations, living wills are most appropriate for someone without trusted friends or family to make surrogate decisions in the event of her or his incapacity.

The preferred advance directive is the appointment directive, also known as a health care proxy or a durable power of attorney for health care (DPOAHC). This document enables a capacitated individual to legally appoint another person to make medical decisions on her or his behalf after capacity has been lost. Depending on the type of appointment directive and the jurisdiction, the designated person may be known as a health care agent, proxy, representative, or power of attorney (POA). For purposes of this discussion, the term health care agent will be used to represent any person legally appointed to make surrogate health care decisions. Appointment of an alternate agent is also recommended as a backup in the event the agent is unavailable or unable to make decisions on the patient’s behalf.

The appointment directive is preferred over the instruction directive because it authorizes decision making in the event of temporary or permanent incapacity and enables greater flexibility in responding to unanticipated or rapidly changing medical conditions. Although the agent is generally required to honor the patient’s previously expressed care preferences, if those instructions do not apply to or are inconsistent with the patient’s current health needs, the agent is empowered to exercise judgment and use his knowledge of the patient’s health goals, values, preferences, and decision history to make choices that promote the patient’s best interest. Because the agent and alternate agent have the same decisional authority as the patient once the powers are activated, he or she may make any and all care decisions the patient could make if capable. Moreover, the authority of the agent and alternate supersedes that of anyone else (except a court-appointed guardian), including next of kin. This scope of authority presupposes a patient–agent relationship characterized by trust; familiarity with the patient’s goals, values, and preferences; and the agent’s willingness to exercise judgment and make often difficult decisions in the patient’s interest.

As noted in Chapter 4, appointing a health care agent requires a lower level of capacity than that needed to make the often complex decisions the agent will make. All the individual must be able to do is understand that, at some future time, another person will be needed to make care decisions on her or his behalf and consistently designate the same person. Assessing this level of capacity can be as simple as asking, “If you couldn’t make decisions about your care, who would you trust to do it?” Return in 30 minutes, ask the same question and, if the same person is named, that is sufficient. The importance of this provision, especially in the geriatric setting, is that even patients with diminished or fluctuating capacity who are unable to make complex medical decisions may still be able to appoint an agent and an alternate to assume this responsibility.

As noted previously, one type of appointment directive is the DPOAHC, but the term POA, when applied to advance health care planning, can cause confusion. Powers of attorney are delegations of legal authority for specified tasks. Often, a well-meaning person will show up in the clinical setting, clutching a document, and saying, “I’m the POA so I’m responsible for making decisions.” Encourage staff to read the document. Very often, it will be a POA for banking or real estate or some other nonmedical responsibilities. Unless the document includes “health care decisions” or similar language, the document should be returned to the person with the explanation that the delegated powers do not include health care decision making (Post & Blustein, 2015).

A key presumption of the appointment directive is that the individual and the appointed agent(s) have engaged in candid and comprehensive discussions about the individual’s goals, values, and treatment preferences (Span, 2015). The literature reveals that older adults with a DPOAHC or other advance directive are less likely to die in a hospital or receive unwanted or nonbeneficial care in comparison with those without an advance directive that provides insight into treatment preferences and guidance in making decisions about care (Silveira, Kim, & Langa, 2010). Some states require the agent’s signature on the advance directive as confirmation that he is aware of the appointment and has accepted the decision-making responsibilities that are entailed. In states without that requirement, however, health care agents may first learn of their appointment when they are called from an emergency department.

Although an instruction directive, such as a living will, typically addresses treatment decisions at the end of life, the appointment directive becomes activated any time the individual has a temporary or permanent loss of decisional capacity, such as might be associated with trauma, illness, states of diminished awareness or impaired cognition (e.g., dementia, stroke, and delirium), alcohol or other substance use or abuse, elective or emergency surgery, or any other condition that impairs decisional capacity. In these situations, a health care agent has the legal authority to infer or interpret the patient’s treatment preferences in real time, based on current medical circumstances and likely prognosis, as well as knowledge of the patient’s goals, values, and preferences. These decisions address a wide range of clinical issues and are not restricted to decisions about forgoing life-sustaining measures as death nears. In essence, the agent is able to say, “If Mama had known then what we know now about her condition and prognosis, this is what she would have decided.”

As discussed in Chapter 4, in the absence of an advance directive, the care team typically turns to informal surrogates, usually family, for guidance and consent in care planning. Family consent laws are state-specific statutes that set out the state-approved decision-making hierarchy—the order in which persons are authorized to make decisions on behalf of a patient who lacks decisional capacity and has not appointed a health care agent by means of an advance directive or DPOAHC.

Variations in Advance Directives

Some states have a combined directive that provides for the appointment of a health care agent and an alternate agent, as well as optional instructions regarding treatment specifics. A section on organ donation (“anatomical gift”) has been added to the advance directives in some states, enabling the expression of preferences about organ donation. Some states limit the authority of the appointed agent or alternate to activate these preferences, unless this person is also the identified decision maker(s) for organ donation, a distinct statutory authority that is separate from the agent’s rights and responsibilities to make decisions about the patient’s treatment.

Instructional/medical directives have been suggested to address specific clinical situations and interventions. Individuals must decide prospectively which interventions they would want in the context of four scenarios: coma with virtually no chance of recovery; coma with a small chance of recovery but restored to an impaired physical and mental state; advanced dementia and a terminal illness; and advanced dementia. Among the interventions are cardiopulmonary resuscitation (CPR), artificial nutrition and hydration (ANH), dialysis, invasive diagnostic tests, antibiotics, and blood transfusion. This type of directive shares and even exacerbates the problems with living wills by requiring individuals to anticipate hypothetical clinical conditions and make choices about interventions she or he may or may not understand. In addition, the instructional/medical directive does not address the patient’s desired goals of care, willingness to allow a short-term intervention, or treatment choices associated with stage of chronic illness or exacerbation.

Five Wishes is a hybrid directive that provides the opportunity to communicate decisions about (a) the person I want to make care decisions for me when I can’t, (b) the kind of medical treatment I do or don’t want, (c) how comfortable I want to be, (d) how I want people to treat me, and (e) what I want my loved ones to know. For many people, this is an accessible and nonthreatening way to frame the issues. Five Wishes is currently recognized in 42 states and is available in 26 languages (Five Wishes, Aging with Dignity, www.aginwithdignity.org/catalog/productsinfo.php?productsid=28). The “values statements” embedded in the Five Wishes document generally does not explore or express the patient’s understanding of the benefits and burdens of various treatments, sometimes making it difficult to act on the patient’s wishes and preferences (Lo & Steinbrook, 2004).

ADVANCE DIRECTIVES AND DECISION MAKING

The literature reveals that quality-of-life concerns, family influence, and pragmatism inform most adults’ decisions to create an advance directive (Crisp, 2007). Older adults who execute advance directives tend to believe that their physicians know their wishes and do not feel that the directive would constrain their care. Those who do not create an advance directive tend to prefer that their families make decisions for them and may not appreciate the decision-making flexibility provided by an advance directive (Beck, Brown, Boles, & Barrett, 2002). Among participants of the original Framingham Heart Study, almost 70% discussed their end-of-life care preferences and advance directives with someone, but not necessarily a physician or other health care provider. More than half had a health care proxy or living will; slightly less than half had both types of directive. Most respondents wanted a comfort care plan at the end of life, but few agreed to forgo life-sustaining treatment interventions (e.g., ventilator and feeding tube) and said they would endure a burdensome health status (e.g., intense pain, confusion, and forgetfulness) in order to prolong life (McCarthy et al., 2008).

The literature also reveals the relationship between ACP and the degree to which individuals’ care preferences are known, understood, and followed. Surrogate decision makers for hospice patients who talked with their surrogates about their end-of-life treatment wishes demonstrated greater understanding of the patients’ preferences than the surrogates of patients who did not have these discussions (Engelberg, Patrick, & Curtis, 2005). Although surrogate decision making by families demonstrated greater accuracy than primary physicians in predicting older patients’ preferences for life-sustaining treatments in hypothetical scenarios, having an advance directive did not necessarily improve congruence between patients’ wishes and decisions made for them by others (Coppola, Ditto, Danks, & Smucker, 2001).

Studies have revealed that surrogate decision makers do not necessarily make treatment choices that reflect patients’ preferences (Ditto et al., 2001; Mitchell, Berkowitz, Lawson, & Lipsitz, 2000). Although a small study found that communication between patients and their agents improved the accuracy of agent representations of patient preferences (Barrio-Cantalejo et al., 2009), a meta-analysis of surrogate decision making did not find that prior discussion between patient and agent improved agent accuracy in representing patient preferences (Shalowitz, Garrett-Mayer, & Wendler, 2006). Lack of concordance between patients’ stated wishes and physicians’ orders, however, was not shown to be simply a denial of patient rights; rather, physicians may have been relying on additional information to guide their treatment decisions (HardinHardin & Yusufaly, 2004).

Advance directives and high-quality end-of-life care have been associated with patients dying in their preferred location (e.g., at home or in hospice rather than in an acute care hospital), less likelihood of being burdened with an unwanted respirator or feeding tube, fewer concerns about family/significant others being informed about what to expect, and good physician communication (Bakitas et al., 2008; Detering, Hancock, Reade, & Silvester, 2010; Teno, Gruneir, Schwartz, Nanda, & Wetle, 2007). Patients with advanced illness requiring end-of-life care who were randomized to an Advanced Illness Coordinated Care Program reported increased satisfaction with care and communication, completed more advance directives, and their surrogates reported fewer support problems than patients receiving standard care (Engelhardt et al., 2006). As reported in a similar study (Teno et al., 2007), no difference was found in survival rates between the experimental and control groups. Unmet needs were reported, however, for adequate pain management and emotional support for patient and family (Teno et al., 2007).

Factors considered important by older patients with regard to their medical decision making and ACP included their religious beliefs, dignity, physical comfort, dependency, and finances (Hawkins, Ditto, Danks, & Smucker, 2005). Few patients indicated a desire to document their specific medical treatment preferences, but they highly valued verbal communication about these matters. Spouse surrogates were less likely than child surrogates to believe that prospective documentation of treatment preferences was necessary and more likely than child surrogates to consider financial issues important. Most patients accorded their surrogate considerable leeway in decision making. Patients indicated greater confidence in their child surrogates’ understanding of their wishes than in the understanding of their spouse surrogates. An association between recent hospitalization and reduced desire to receive life-sustaining interventions (e.g., CPR, artificial nutrition, and hydration) was noted during an interview conducted just after recovery, but returned to baseline several months after hospitalization. These results challenge assumptions about the stability of treatment preferences and the temporal context during which treatment decisions are made (Ditto, Jacobson, Smucker, Danks, & Fagerlin, 2006; Hawkins et al., 2005).

Surrogate decision making has traditionally been grounded in the notion that an individual’s characteristic preferences, long-held values, and cherished convictions provide the touchstone for decisions made on her or his behalf when capacity has lapsed. ACP in general, and advance directives in particular, have been held to be reliable guides for surrogate decision making because they authentically reflect the choices and principles that have given the individual’s life meaning.

Mrs. B is an 82-year-old nursing home resident. Except for increasing dementia and an irregular heartbeat that requires a pacemaker, she is in good health and appears to have a very pleasant and comfortable life. She enjoys music, walking in the garden, and visits from her grandchildren, even though she is not entirely sure who they are. She has been admitted to the hospital to have her pacemaker changed, an intervention her two devoted daughters have refused. When asked their reason for refusing, they replied, “Our mother was an elegant, fastidious woman who always said that, if she were ever in diapers, she wouldn’t want to live. If she could see herself now, she would be humiliated” (Post & Blustein, 2015).

A thought-provoking debate within the bioethics community challenges the justification for adhering to previously articulated preferences that may not adequately meet the markedly different needs of a now-incapacitated individual. Commentators have argued that persons with advanced dementia are, in effect, different people in terms of their health status and interests, for whom care decisions should be based on their current needs and preferences rather than their prior instructions (Blustein, 1999; Dresser, 1995; Post & Blustein, 2015). Ultimately, the ethical analysis would seem to rest on the imperative to preserve the dignity of the individual before us, as well as that of the individual she was.

Research Advance Directives

The notion of a research advance directive has been suggested because of the ethical implications of including in research studies participants with dementia who cannot provide informed consent (National Bioethics Advisory Commission, 1998). A research advance directive must be executed while the individual still has decisional capacity and must contain a detailed description and confirmation that the individual understands the purpose of research, including the concepts of risk, benefit, and burden. At the time of recruitment for a research study, the appointed surrogate decision maker must determine whether the individual’s previously articulated intention to participate in research is congruent with the proposed research.

A study involving individuals with moderate dementia and their family surrogate sought to learn whether the patients wanted to retain decision-making control of their participation in future research or allow their surrogates to make the decision at the time of recruitment. Although many but not all individuals authorized their surrogates to make future decisions about research participation, surrogates did not always want to make these decisions (Stocking et al., 2006).

Psychiatric Advance Directives

Psychiatric advance directives are written by decisionally capable individuals who want to articulate their preferences about psychiatric treatment so that these preferences may be communicated and honored during periods when decisional capacity has lapsed. Research has shown that, given the opportunity to meet with a trained facilitator, adults with psychiatric disorders demonstrated sufficient capacity to make and document treatment decisions (Elbogen et al., 2007). Psychiatric outpatients have demonstrated a desire for assistance in creating an advance directive. This population tends to be female; non-White; with limited autonomy; a history of self-harm, arrest, and perceived pressure to take psychiatric medications (Swanson, Swartz, Ferron, Elbogen, & Van Dorn, 2006). Patients who complete a psychiatric advance directive typically exhibit good insight and reliably keep their outpatient mental health treatment appointments (Swanson et al., 2006).

Psychiatric advance directives in which patients identified their preferred psychiatric medications predicted not only that the medications were likely to be prescribed but also that medication adherence persisted over time (Wilder, Elbogen, Moser, Swanson, & Swartz, 2010). Most psychiatrists, psychologists, and social workers agreed that psychiatric advance directives would be helpful for patients with severe mental illness who are capable of creating them. The positive attitude of these mental health professionals is also supported by their knowledge that their respective state laws do not require them to follow a directive that contains a patient’s refusal of appropriate mental health treatment or a request for treatment that is not clinically indicated (Elbogen et al., 2006).

Verbal Advance Directives

Although courts tend to prefer written advance directives, oral directives are typically respected, especially in emergency situations, and can be persuasive in a judicial decision about withholding life-sustaining treatment. Some states permit patients to verbally designate a health care agent in discussion with their physicians, rather than executing a written directive (Lo & Steinbrook, 2004). In determining the validity of a verbal advance directive, courts seek information about whether the statement was made by a mature person who understood the underlying issues, in a deliberate rather than casual or emergency context, was consistent with characteristic values and statements exhibited in other aspects of the individual’s life, including religious or philosophical convictions, and addressed the specific medical condition necessitating a decision (Lo & Steinbrook, 2004). What might seem like an off-hand comment made by a patient in a practitioner’s office or at the bedside should be recorded for just such an occasion, when clear and convincing evidence of the individual’s wishes may be required.

OTHER TYPES OF ACP

In addition to advance directives, other mechanisms enable prospective medical decision making in specific circumstances.

Do-Not-Resuscitate Orders

Almost all diagnostic and therapeutic interventions require the informed consent of a decisionally capable patient or an authorized surrogate on behalf of a patient lacking decisional capacity. The few exceptions include emergency treatment that, if delayed, would result in significant harm or death, interventions to manage pain and other symptoms, and CPR. In the event of cardiopulmonary arrest, consent to resuscitation is presumed unless a physician enters a do-not-resuscitate (DNR) order, which is a specific order to refrain from performing CPR. Because of their life-and-death implications, most jurisdictions require DNR orders to have explicit informed consent, with few carved-out exceptions. Absent a DNR order, the patient’s code status is presumed to be “full code” and, in the event of cardiopulmonary arrest, CPR must be performed.

Determining, communicating, and honoring a patient’s code status often causes moral distress for caregivers, especially nurses. Care professionals are often conflicted and believe that CPR should not be instituted when it is considered medically futile, will not provide clinical benefit to the patient, or when death is inevitable and impending. Even in these situations, however, patients or surrogates often insist on CPR because of the misperception, fueled by television and film dramas, that it is always effective in restarting cardiac function. In the interest of clarity and accuracy, an increasing number of states have changed the name of the order from DNR to DNAR—do not attempt resuscitation.

Decisionally capable individuals or surrogates on behalf of incapacitated individuals have the right to consent to or refuse any proposed medical intervention. State-specific Natural Death Acts codify the right of capable patients to decline unwanted life-sustaining interventions, a right supported by the U.S. Supreme Court (Cruzan v. Director, 1990). Accordingly, capable patients and surrogates have the right to refuse CPR by consenting to a DNR order after they have been informed and demonstrate their understanding of the implications, including the relevant benefits, burdens, and risks. Because these are medical orders written by physicians, they are not considered advance directives, which are patient-generated statements of care preference.

Not uncommonly, conflict arises between and among patients, families, and care professionals regarding the necessity and appropriateness of DNR orders. For example, a physician may be unwilling to write a DNR order requested by a patient or surrogate because forgoing CPR would be considered clinically inappropriate. In this situation, the physician is required to notify the requestor that the order will not be entered and offer to transfer the patient’s care to a physician willing to write the order.

The more typical scenario is a patient who has consented to a DNR order suffering a cardiopulmonary arrest and a hysterical family member imploring the care team, “You must save my loved one!” Too often, the patient is resuscitated and the code status is changed to full code with the reasoning, “When the patient can’t make decisions, we always turn to the family.” Reframing this dynamic is essential to the fundamental ethical obligation to respect patient autonomy. A medical order consented to by a capable patient is a compact between the patient and the care team. The patient’s consent implicitly expresses confidence that his or her wishes will be honored and the care team implicitly promises, “When you are at your most vulnerable and cannot advocate for yourself, we will advocate for you.” Accordingly, a DNR order consented to by a family member, health care agent, or other surrogate on behalf of an incapacitated patient may subsequently be modified or rescinded by an authorized surrogate. A DNR order consented to by a decisionally capable patient, however, may be rescinded or modified only by the patient. The rare exception is when a health care agent appointed by the patient determines that, in the context of current changed clinical realities, the patient would have rescinded or modified the DNR order.

Out-of-hospital DNR orders can protect individuals at home, in long-term care, rehab facilities, or other nonacute care settings from unwanted and clinically inappropriate CPR. Like in-hospital DNR orders, these are written by physicians based on clinical assessment and consented to by capable patients or surrogates. In one study, interest in and consent to DNR orders by patients on palliative home care programs were associated with sleep and incontinence problems, acceptance of their clinical condition and impending death, and their wish to die at home (Brink, Smith, & Kitson, 2008).

Artificial Nutrition and Hydration

Artificial nutrition and hydration (ANH) poses ethical, legal, and cultural challenges, primarily because of the traditional association between nourishing and nurturing. Before the PSDA became law, the U.S. Supreme Court ruled that capable patients have a constitutionally protected right to refuse unwanted medical treatment, a category in which the Court included ANH (Cruzan v. Director, 1990). Thus, ethical and legal reasoning that considers ANH the same as any other medical treatment recognizes no distinction between withholding and withdrawing life-sustaining measures, including ANH.

Powerful emotional and cultural influences persist, however, and are reflected in the varying state-specific legal evidentiary rules and procedures required to forgo or discontinue ANH. Some states hold that health care agents may not make decisions about forgoing ANH unless explicitly authorized to do so by the patient’s advance directive. Some DPOAHC documents include a statement that the patient may check to verify that the POA is aware of the patient’s wishes about ANH, without indicating the nature of those wishes. Living will statutes in some states regard ANH as a medical treatment, whereas other states consider it a comfort measure (Gillick, 2006). Given states’ varying legislation, nurses need to be aware of the relevant laws of the state in which they practice and what those laws require, permit, and prohibit. They should also understand the extent to which patients and their surrogates are correctly informed about the clinical benefits and burdens of ANH at the end of life; the palliative alternatives; the cultural, religious, and language influences that may equate forgoing ANH with “starving” the patient to death; and strategies to address those concerns.

Orders for Life-Sustaining Treatment (POLST/MOLST)

An entirely different type of ACP is a consolidated set of medical orders for life-sustaining interventions. Originated in Oregon in 1995, this is a decision-making model that has been adopted by or is in development in approximately 40 states, which accounts for the variety of names (e.g., Physician or Practitioner or Pennsylvania Orders for Life-Sustaining Treatment [POLST], Medical Orders for Life-Sustaining Treatment [MOLST], Louisiana Physician Orders for Life-Sustaining Treatment [LaPOLST]; Span, 2015). In the interest of simplicity, the term POLST is used in this discussion to refer to all documents of this type.

Although POLST is a legal mechanism for ACP, it is fundamentally different from advance directives and, as noted in the following, distinguishing them is crucial to their proper implementation.

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