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Abstract

There is general agreement across health care disciplines that advance care planning (ACP) and advanced directives (ADs) can help ensure a patient receives desired end-of-life care. However, ADs and ACP remain signiﬁcantly underused. The evolution of ADs and ACP in the United States has inﬂuenced development of ADs and ACP in other countries. This entry traces the development and history of ADs and ACP in the United States, identiﬁes reasons they are not more widely used, discusses ethical considerations, and concludes with multicultural considerations.

Introduction

Medical Technology, Aging Population, And Ethical Dilemmas

A growing aging population in combination with rapidly advancing medical technology means that complex EOL care choices are faced by an increasing number of individuals, and over an extended span of their lives. Technological developments in medicine that burgeoned during the 1960s and 1970s in industrially advanced societies, as Sabatino (2010) has noted, “thrust medicine into a new world where for the ﬁrst time, it often became difﬁcult to distinguish saving life from prolonging suffering and death” (p. 213). As a result of technological developments in medical care, members of the general public and clinicians regularly face demanding case conceptualization and plan-of-care decisions concerning when advanced technological treatments (such as cardiopulmonary resuscitation, mechanical ventilation, and supplying artiﬁcial nutrition and hydration) should be initiated or withheld, and if initiated, when treatments are no longer beneﬁcial for the patient and should be stopped. Due to the widespread use of life-sustaining medical interventions in industrialized societies, clinicians, patients and their loved ones, and advocates routinely face daunting decisions about what medical treatments to use and when to use them. Concerns about overtreatment and under treatment, along with anxieties about initiating and withdrawing treatment, can engender ethical dilemmas that can cause moral distress for patients, their advocates, and clinicians. Therefore, it is important for members of the general public to document their desires for medical care in advance of when the treatment is needed, while they are competent and capable of doing so.

In an effort to ease anxieties and moral distress from difﬁcult decisions about which care to use and when to initiate or stop advanced medical treatment, documents referred to as advance directives (ADs) and a process of communicating about and documenting desired care known as advance care planning (ACP) have been developed. Use of ADs and ACP has been advocated by private and public organizations, medical ethicists, and clinicians. Research has indicated that planning for medical care in advance can help in managing the emotional conﬂict engendered in these decisions about care near the end of life.

“ACP” is a general term that refers to “a process that involves preparing for future medical decisions in the hypothetical event that individuals are no longer able to speak for themselves when those decisions need to be made” (Levi and Green 2010, p. 4). Levi and Green explained that ACP includes communication among patients, their loved ones and advocates, and clinicians about patients’ values, beliefs, desires, and quality of life, along with care goals. The process of ACP often culminates in the creation of advance directives (ADs).

“Advance directives” (ADs) is a general term that refers to documents that “formally convey an individual’s wishes about medical decisions to be made in the event that he or she loses decision–making capacity” (Levi and Green 2010, p. 4). These documents include the living will and the durable power of attorney for health care (DPOA-HC). Similar to the power of attorney that authorizes another person to handle ﬁnancial and business matters, the DPOA-HC authorizes a person to handle health care matters on another’s behalf. In the event that the person completing the document, also known as the “principal,” should become physically or mentally incapacitated and unable to speak for themselves about their own desires for care, the person designated in the DPOA-HC can speak or advocate on the principal’s (patient’s) behalf.

ADs are legal documents that meet requirements of federal and state laws, statutes, and regulations about delivery and receipt of end-of-life (EOL) care and EOL choices. Different jurisdictions use different words to identify individuals named in the DPOA-HC. Consequently in the literature, an individual named in a DPOA-HC can be referred to as a health care advocate, agent, surrogate and surrogate decision-maker, and proxy.

Living Will And The Beginnings Of Legal Codification Of Advance Directives In The United States

The precursor to ACP was ADs, and the precursor to ADs was the living will. In 1967, Illinois attorney Luis Kutner proposed the ﬁrst living will. He presented his proposed document in a law journal (Kutner 1969). Kutner’s document was modeled after the estate will in order to document an individual’s medical treatment preferences : in case they should lose their capacity to advocate on their own behalf.

Because the document was in the form of a will but conveyed instructions relevant to the person’s life while they were still alive, it came to be known as the “living will.” Since the ﬁrst living will (Kutner 1969), the concept of documenting one’s desired medical care preferences : in advance has broadened, primarily through legislative efforts and court decisions.

It took multiple efforts to formalize the use of living wills by law. These efforts began near the time Kutner (1969) introduced the living will. Bills proposed to sanction the living will were brought before the Florida state legislature in 1968 and again in 1973 but defeated both times. Such a bill was ﬁnally passed in 1976 (only after ﬁrst failing in 1974) in California. Thus, California became the ﬁrst state in the United States to authorize the living will for documenting individual treatment preferences : for medical care. Within a year, legislation governing living wills was considered in 43 states; however, only 7 states passed these bills. At the same time, in 1976, the New Jersey Supreme Court, in the matter of Karen Quinlan, handed down a decision that sanctioned ADs at the state level. During the next 16 years, legislation on documenting treatment preferences , now known as ADs, progressed. In the United States, by 1992 all states and Washington, D.C. had legalized various forms of ADs. Today, all 50 states have their own statutes and laws that speak to ADs, with the documents or forms and requirements varying by state. Differences in laws and forms from state to state can create complications, including situations in which an individual moves or travels out of the state in which their documents and forms are completed and ﬁled.

These legislative developments produced standards for what ADs exemplify. ADs came to be understood as instructions for treatment that can be very speciﬁc or very general. Instructions can consist of wishes about pain relief, antibiotics, artiﬁcial nutrition and hydration, use of CPR, and mechanical ventilation. More general instructions provide directives that all life-prolonging care is delivered, or that such care is refused, withheld, or withdrawn. Since Kutner’s (1969) ﬁrst living will along with legislative efforts and court decisions, medical technology continued to advance at a rapid pace and the costs of medical care increased accordingly. These advances along with highly publicized legal cases prompted further evolution and vigorous discourse about ADs and ACP among legal scholars, legislators, ethicists, and clinicians.

The Federal Government Steps In Federal level Legislation To Encourage Completion Of Ads

The conversation about ADs gained national focus once the issue began to be considered at the level of federal legislation. One of the most signiﬁcant events to inﬂuence the evolution of ADs, as noted by Alexander (1991), occurred with the passing by the US Congress of the Omnibus Budget Reconciliation Act of 1990 (Pub. L. No. 101 508 Stat. 1388, 1990). This act contained the Patient Self-Determination Act (PSDA), which required Medicare providers to “take an active role in informing patients about their right to participate in direct health care decisions” and required providers to “encourage and honor health care directives” (Omnibus Budget Reconciliation Act 1990, p. 770). The PSDA required hospitals and nursing homes to ask patients, upon admission, if they had ADs.

This legislative act served as an “information and education mandate” to Medicare and Medicaid laws (Sabatino 2010, p. 217), requiring hospitals to inform patients about the opportunity to provide ADs. The act, however, did not require completion of, communication about, or reimbursement of clinicians for communicating with patients and their loved ones about ADs. The approach to documenting treatment preference: in legal documents and forms was perpetuated by legislation such as the PSDA.

Progressing in parallel with these legislative moves and court decisions, additional documents for documenting treatment preferences were introduced. The DPOA-HC emerged during the 1980s, and the Physician Orders for Life Sustaining Treatment (POLST) appeared in 1991. Also during this period, physicians’ notes in patients’ charts about discussions the physician and patient have had about patient preferences : for EOL care became recognized as a valid component of ADs.

Emergence Of Physician Orders For Life-sustaining Treatment (POLST)

The reliance on legal documents and forms for documenting medical treatment preferences was further cemented upon the emergence of the Physician Orders for Life-Sustaining Treatment (POLST) paradigm in Oregon in 1991. The POLST paradigm was designed in an attempt to improve end-of-life care in the United States. The POLST was intended to do so by helping patients facing chronic or serious illness to document which types of life-sustaining treatment they would or would not want to receive. This document is widely used by hospices and long-term care facilities. The form is intended to help physicians and other health care providers document a patient’s wishes regarding cardiopulmonary resuscitation (CPR) and other life-sustaining treatments. These orders should be completed for any person who wants to either avoid or receive life-sustaining treatments, lives in a long-term care facility or requires long-term care services, or is at risk of dying within the next year. The form is printed on brightly colored card stock and is usually placed in a strategic place in the patient’s home, typically posted on the refrigerator. A copy is also placed in the patient’s chart. This form has become widely used across states and currently sits at the foundation of at least 15 POLST and POLST-like paradigms that exist now, along with others in the pipeline.

Challenges And Limits Of The Legal Approach To ACP

The living will set in motion an approach for modeling health care documents after legal documents. The PSDA legislation and the DPOA-HC and POLST documents further established an approach to documenting desired care by completing legal forms. Legal scholars have, in retrospect, referred to this as the legal approach or the forms approach to planning in advance for EOL care, a paradigm we have lived with for decades in the United States. Some experts have criticized the form-focused legal approach of documenting desired medical care in advance on several grounds. A multitude of laws, policies, and forms can make completing and implementing advance directive documents difﬁcult, as some states prescribe speciﬁc language, require certain diagnoses, restrict care choices, or require witnesses and notarization, all of which can make it difﬁcult to complete compliant documents. Furthermore, ensuring that all requirements are met for each document can result in conﬂicting documents, making matters confusing for the surrogate and care providers (Sabatino 2010). Many of the forms have been written above a 12th-grade reading level, making them difﬁcult to understand for many people. There has been much confusion among the general public and among clinicians about which forms to use, when to use them, and how to complete and properly document or ﬁle the forms. In addition to the formal challenges in completing the documents, the fact that nonmedically trained individuals must imagine hypothetical future circumstances and treatments in order to produce the documents provides an added layer of difﬁculty.

Critics of the legal forms approach have advocated for reconceptualization of ADs. In one reconceptualization, individuals do not try to hypothetically predict their desires for treatment and instead name a proxy in a DPOA-HC to act on their behalf. In the other conceptualization, the focus is on an ongoing process of communication about EOL care that has come to be known as ACP.

During the 40 years that have passed since the ﬁrst living will (Kutner 1969), scholars, researchers, and practitioners have recognized that a focus on a one-time process of completing forms is not enough. It has now become clear that taken together, the legal, medical, and cultural problems of planning in advance for end-of-life care previously existed, in no small part, because the forms emphasize delineating reception or denial of care, obscuring the need for ongoing communication about ACP. The need for ongoing communication, however, is now being recognized and championed. As Rogne and McCune (2014), drawing on the work of others, have concluded, “conversations about EOL planning have shifted from product to process” (p. 4). We have moved from viewing planning in advance for medical care from a forms approach to a communications approach. This shift is reﬂected in the move from conceptualizing planning in advance for medical care as simply a one-time completion of ADs to engaging in an ongoing process of communication about ACP.

Today, the focus is no longer on completing legal forms. Instead, the focus is on using ADs as a tool to help facilitate ongoing conversations as a comprehensive approach that is now known as advance care planning (ACP). Now, the momentum is toward “educating ourselves and our communities about dying and death and to provide knowledge that can help us prepare ourselves, our families, and our society for a better way to die” (Rogne and McCune 2014, p. 4).

Several authors, including Halpern and Emanuel (2012) and Wenger et al. (2008), have noted that ADs can be effective tools for guiding communication about ACP between clinicians and professional caregivers (e.g., nurses, physicians, social workers, psychologists, and spiritual caregivers), patients and their loved ones, and advocates about which medical interventions a patient wishes to pursue or avoid. In so doing, ADs can focus conversations by eliciting key factors including values, beliefs, and goals of care that can guide the advance care planning process. These include psychological, social, cultural, spiritual, and ﬁnancial domains, in addition to medical concerns.

Numerous scholars and clinicians have noted that ADs hold much promise for ensuring self-determination and quality of life near the end of life. ADs and ACP can reduce unwanted overtreatment and ensure that patients get the care they desire when honored. Therefore, the underuse of ADs and ACP has real consequences for patients, their loved ones, and the clinicians who provide care.

In addition to other beneﬁts, using ADs to facilitate communication about ACP can protect patients’ loved ones, their advocates, and clinicians from “the burdens of surrogate decision making” (Halpern and Emanuel 2012, p. 226). As Halpern and Emanuel observed, documenting care preferences : can “assuage guilt, doubt, or lingering uncertainty” over care decisions made on behalf of another (p. 267).

Yet, research shows that ADs and ACP remain underused. As Sabatino (2010) observed, despite years of enthusiastic advocacy by major health care organizations, ADs have not been as widely used as hoped. Due to lack of understanding, anxiety, confusion, and uncertainty, members of the general public fail to engage in communication about ADs and ACP and fail to name a health care advocate.

Consequently, many patients transition into physical and mental incapacity and enter end-of-life (EOL) care without a health care advocate and without having ADs in place. Without ADs and an advocate, patients can receive unwanted aggressive medical care. Such care may be burdensome and costly and may prolong suffering in a degraded quality of life. Furthermore, clinicians and the patient’s loved ones are then faced with difﬁcult decisions, made on behalf of another without guidance about which medical care to initiate and withdraw and the timing of providing or withholding these interventions.

Underuse Of Ads And ACP

In the Advance Directives and Advance Care Planning Report to Congress (Wenger et al. 2008), the authors noted that in the United States fewer than half of severely or terminally ill patients had ADs in their medical record and “among individuals with chronic illnesses, only one in three completed an advance directive” (p. 13). Additionally, the authors observed, studies have suggested, “two thirds of physicians whose patients had advance directives were unaware of the existence of those documents” (Wenger et al. 2008, p. 13). Research shows that a number of closely related phenomena, conditions, and practices underlie the underuse of ACP, ADs, and naming of health care advocates (McCune 2014). These factors fall into nine categories: (1) legal and ethicolegal issues circumscribe and at times are barriers to ACP; (2) the standard practice of administering advanced medical care; (3) lack of awareness of how ACP can best be used; (4) the failure of previous models of care to support communication about EOL care, ADs, ACP, dying, and death; (5) inadequate communications training for clinicians; (6) clinicians’ avoidance of discussions about ACP; (7) difﬁculty in handling questions about ADs and ACP; (8) the nearly universal anxiety and fear of death inhibiting patient-clinician communication; (9) clinicians are not reimbursed for discussing ADs and ACP with their patients.

First, legal and ethicolegal issues can be complex and confusing. When ACP does take place, its historically legalistic structure has circumscribed communication throughout the process in particular ways, presenting a challenge to the efﬁcacy of the process. The legal, form-based approach to ACP often still guides, and at times is a barrier to, communicating about ADs and ACP. Cooper and Buckner (2013) described ethicolegal issues as those issues that involve ethical and legal considerations when settling on a course of action regarding meeting basic human needs and health care decision-making including completing ADs.

Second, as Chapple (2010) pointed out, there is a prominent ideology of rescue in the US health care system. That is, providers apply advanced medical care during advanced stages of disease as well as in emergency situations as an unconscious reﬂex. This rescue trajectory is compelling for clinicians, patients, and their loved ones. Our current medical culture and health care system appear driven by heroic use of all available medical care to rescue all patients and prevent, or at least delay, deaths in all situations and at all costs. As a result, “death seems distant from everyday life, bolstered by the ‘mythology’ of CPR” (Chapple 2010, p. 3). Accompanying this rescue paradigm is the pervasive view that a patient’s death is the clinician’s defeat, leaving little room for asserting the necessity of ACP.

Third, among members of the general public and, even more alarming, among clinicians, there is a lack of awareness of how the advance care planning process can best be conceived, documented, and used. Ahluwalia, Levin, Lorenz, and Gordon (2013) pointed out that providing practical guidance for conducting discussions about ACP, which, as the authors note, can be “difﬁcult and time-intensive discussions,” might increase use of ACP. However, they continue, “little guidance regarding the structure and process of an ACP discussion exists” (p. 200).

Fourth, previous models of care have devalued the relational aspect of care and compassionate human engagement between clinician and patient in favor of proceduralized technical care. These conceptualizations have emphasized a natural sciences model that valorizes procedures and technology as models of caring for human beings.

Fifth, clinicians are frequently not trained to facilitate communication with patients and their loved ones about ADs, ACP, EOL care, and death. This lack of training is due, in part, to reliance on previous models used by clinicians to conceptualize the patient-clinician relationship based on beneﬁcence, paternalism, autonomy, rights, and objectivity (see, e.g., Smith and Newton 1984).

Sixth, clinicians frequently avoid end-of-life discussions, even though research has documented that patients and their loved ones are more satisﬁed when they have an opportunity to have conversations about end-of-life care, ADs, and ACPs with their health care providers.

Seventh, research reveals that people have difﬁculty both asking and answering important questions about end-of-life care planning for themselves and for their loved ones (e.g., Levi and Green 2010). This is due in part to the difﬁculty of imagining a hypothetical future including disease symptoms and conjecturing which treatments one would desire to receive or decline.

Eighth, humans possess an innate knowledge of the inexorability of death. The struggle with this innate knowledge is in dissonance with the human biological drive toward staying alive. These conﬂicting dynamics can create paralysis from fear evoked by thinking about, discussing, facing, reckoning with, and planning for death.

Ninth, despite sanctioning of ADs by the federal government, with legislation such as the PSDA, clinicians are not reimbursed for communicating with patients and their loved ones and advocates about ADs and ACP. This limits patient-clinician communication about these important subjects.

These phenomena and conditions reﬂect, produce, and perpetuate practices that lead the general public, patients, and clinicians to circumvent the existence of mortality and avoid communicating about ADs and ACP. As a result of these factors, a majority of Americans face life-threatening illness without having engaged in ACP and completed ADs.

Diversity, Culture, Religion, And Age In Advance Care Planning

Ethnic minorities in the United States are estimated to make up about 25 % of the US population, and engaging in ACP and ACP among minorities presents particular challenges. Disenfranchised patients continue to be underserved in their medical care. Due to these gaps in care, vulnerable individuals’ needs for hospice and palliative care and support for communicating about ACP have continued to go unmet. Difference in literacy rates has been identiﬁed as a signiﬁcant factor in accessing palliative and hospice care during EOL. Research has also shown that literacy inﬂuences completion of ADs. Studies have also established the need to explore cultural and religious concerns about death and dying, and the need to sensitively address the beneﬁts of ACP within cultural and religious contexts.

Older people and diminished mental capacity. According to World Health Organization (2012) estimates, worldwide there were 35.6 million people with dementia in 2012. This number is expected to double during the next 20 years. It has been estimated that a quarter of older people experience limited decision-making capacity (DMC) for more than a month before death, with two-thirds of older people experiencing varying degrees of DMC during the last week of life. Reduced DMC can affect older individuals’ abilities to communicate about ACP and EOL care decisions. Therefore, it is crucial that ADs and ACP are completed while decision-making capacity is still intact.

Conclusion

In advanced societies today, medical technologies can extend life almost indeﬁnitely. Sulmasy (2002) commented that “Today’s health professions seem to have become superb at addressing the physical ﬁnitude of the human body. Previously lethal diseases have either become curable or have been transformed into the chronic” (p. 24). While medicine has advanced to the point of being able to cure many lethal diseases, one effect of such advances is the current high prevalence of chronic diseases. This means that while more people are living longer, experiences of disease and frailty that lead to physical and mental incapacity over an extended duration of the life span are now common patient experiences that require long-term planning. Even though advanced medical technology has been able to cure deadly diseases and postpone death, the prominence of chronic diseases and new choices about which technologies to use and when to use them requires longer-term attention. This requires all of us, including clinicians, to give more attention to the prospect of extended medical care over a longer period of life. This in turn requires that clinicians be able to address the needs of whole human persons, and not just give attention to producing physiological effects on parts of the ﬁnite body that are most visibly affected by disease. However, contemporary medicine, as Sulmasy stated, “still stands justly accused of having failed to address itself to the needs of whole human persons and of preferring to limit its attention to the ﬁnitude of human bodies” (Sulmasy 2002, p. 24).

ACP can help patients ensure self-determination and quality of life near the end of life. ACP can do so by making sure that individuals receive the care they desire, thereby bringing peace of mind, comfort, and certainty to patients, their loved ones, and clinicians. Further research is needed. Such research would result in increased understanding and knowledge of communication about ADs and ACP, better training for clinicians, and improved provision of care. The current practice of denying the inevitability of death forecloses opportunities for communicating about death, ADs, and ACP that can inform and lead to better-quality living through the last phase of life and help patients receive care that allows them to live and to die according to their wishes (Rogne and McCune 2014).

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