Too often nurses in the United States (U.S.) find themselves caring for patients who, assuming the end of life to be far in the future, have made no indication of their wishes regarding treatment options, resuscitation, or the preservation of life through artificial means. Although conversations with patients and families about end-of-life decision-making are usually initiated by physicians, nurses are often left to discuss these topics in more depth, and during less than ideal circumstances (Giovanni, 2012).

Trying to educate patients and help them complete an advance healthcare directive in the midst of a crisis is inappropriate... Trying to educate patients and help them complete an advance healthcare directive in the midst of a crisis is inappropriate because they are not in an ideal state of mind to make competent decisions. In these circumstances, it is no longer an advance directive, but a crisis directive. Advance directives may seem a concern primarily for gerontological nurses. However, the unpredictability of crises means that all nurses need to understand the history and nature of advance directives to help patients and families make informed decisions about the end of life and advocate for themselves prior to an emergency situation.

Nurses who do feel comfortable helping patients fill out basic forms say their confidence decreases as they try to help patients face more complex issues. The American Nurses Association (ANA) expects nurses to encourage advance care planning among patients. The ANA Code of Ethics with Interpretive Statements requires nurses to provide patient education about advance care planning and be knowledgeable enough to discuss different types of advance directive forms (ANA, 2015). Yet nursing education typically includes little content about these highly sensitive and emotional matters, and many nurses feel unprepared for the responsibility of answering questions and helping patients understand their options. In several studies, nurses attributed their low levels of confidence in helping patients and families understand advance directives to their own inadequate knowledge of, preparation for, or experience with advance directives (Attia et al, 2012; Casdorph et al, 2009; Reinke et al, 2010; Samara, Larkin, Chan, & Lopez, 2013). Nurses who do feel comfortable helping patients fill out basic forms say their confidence decreases as they try to help patients face more complex issues (Ryan & Jezewski, 2012). Since nurses attribute their lack of confidence to inadequate preparation, increasing their understanding will hopefully lead them to feel more comfortable and confident addressing these issues; more willing to advocate for their patients; and more likely to succeed in encouraging patients to discuss and plan for end-of-life care

Nurses’ Important Role

Individuals enter into care alone more often now than in the past. The need for nurses to promote advance directives is becoming increasingly relevant to the current healthcare system. Our aging population is increasing and advancing technology has transformed chronic, terminal illnesses to conditions that cause slow debilitation (Gardner, 2012). Individuals enter into care alone (i.e. without support from significant others) more often now than in the past. With no advance directive in place, families and/or healthcare providers are forced to make difficult healthcare decisions, potentially adding stress to complex patient and family situations (Lowey, Norton, Quinn, & Quill, 2013). Projections indicate that by 2030, over half of the 8.5 million Americans over 85 years of age will suffer from dementia and have no spouse or children to care for them. Healthcare professionals will be increasingly confronted with concerns regarding individual autonomy and end of life decisions (Gardner, 2012; Jacoby, 2012).

Although federal law requires healthcare providers and institutions to give patients advance directive forms, most patients do not complete them. Although federal law requires healthcare providers and institutions to give patients advance directive forms, most patients do not complete them. Completion rates currently range from 18% to 31% (Cohen & Nirenberg, 2011; Rao, Anderson, Lin, & Laux, 2014; Wenger, Fink, Asakura, & Oman, 2012), and many factors contribute to these low completion rates. Patients may not understand the purpose of the form or the available healthcare options. Low healthcare literacy or first languages other than English may hinder understanding of advance directives. Healthcare providers may assume that family members know what care an individual prefers during a serious illness. Healthy people may assume that they have no need for an advance directive. Some families may feel discomfort, sadness, and/or suffer from superstition that if they discuss end-of-life scenarios with loved ones or their physician, they will bring on the negative outcome they fear (Rao et al., 2014; Schickedanz et al., 2009).

Physicians and nurses report discomfort discussing end-of-life care with patients of other cultures (Aslakson et al., 2012). A further contributing factor is lack of knowledge among practicing nurses regarding their role in educating patients (Casdorph et al., 2009; Cohen & Nirenberg, 2011; Reinke et al., 2010; Samara et al., 2013). Ultimately, lack of preparation among nurses may negatively affect patient care and outcomes at the end of life.

Defining Advance Directives

Patients gain autonomy via the option of executing a living will and/or durable power of attorney for healthcare. Advance directives are legal documents that allow patients to put their healthcare wishes in writing, or to appoint someone they trust to make decisions for them, if they become incapacitated (Abdelmalek, Goyal, Narula, Paulino, & Thomas-Hemak, 2013; Watson, 2010). The two types of advance directives are the living will, which allows individuals to decide what lifesaving measures they want if they are unable to make decisions, and the durable power of attorney for healthcare, through which individuals appoint someone to make decisions for them if they are unable to do so for themselves. The combination of the living will and durable power of attorney for healthcare includes appointing a decision maker and listing what lifesaving measures would be desired during a healthcare crisis. Patients gain autonomy via the option of executing a living will and/or durable power of attorney for healthcare. Family members and facilities have a guide to follow should incapacitation occur (Breu, 2012; Watson, 2010).

Currently, patients have several options when executing an advance directive. These options are summarized in the table.

Table. Current Options for an Advance Directive
Source: Abdelmalek et al. (2013)

 
Evolution of Patient Self-Determination as a Concept

Major milestones in the history of advance directives have resulted from cases of healthy young people in their twenties... Major milestones in the history of advance directives have resulted from cases of healthy young people in their twenties who, most people would assume, had no need to concern themselves with planning for end-of-life care. Luis Kutner, an Illinois human rights attorney and co-founder of Amnesty International, first suggested in 1969 that individuals write their choices for medical treatment. In 1972 following Kutner’s recommendation, the Euthanasia Society of America created the initial form of the living will. Short and straightforward, the form stated that, if an individual had no chance of a reasonable recovery, he or she should be allowed to die. However, at that time, the living will was simply a way for patients to express their desires for the end of their lives and was not a legal document; physicians had no obligation to follow it (Simon, 2014).

Real interest in patient self-determination began with Karen Ann Quinlan, the first right-to-die case in the United States (In re Quinlan, 1976). In 1975, she collapsed at a party and suffered brain damage that left her, at age 21, in a persistent vegetative state. Her physicians told her parents that she would need ventilator support and tube feedings for the rest of her life. When her parents asked for the ventilator to be discontinued, the hospital and Quinlan’s physicians refused, on the grounds that this was unacceptable by standards of medical practice. The Sussex County, New Jersey, prosecutor was concerned that if the parents’ request was honored, the action would be considered a homicide.

Quinlan’s father sought to be her court-appointed guardian so that he could request the removal of the ventilator support while the tube feedings continued. During the time when he was seeking guardianship and before any court order to discontinue the ventilator could be made, her physicians attempted to wean her from it and eventually succeeded. With tube feedings only, Quinlan lived 10 years in a persistent vegetative state and died in 1985 at the age of 31 (Belling, 2010; Flood, 2005; Mc Fadden, 1985; Morales, 1991).

Currently, all states have some form of living will and advance directive laws... The Quinlan case (In re Quinlan, 1976) and the public disagreement surrounding it led California to pass the Natural Death Act in 1976. Following California’s lead, in the 1970s and 1980s other states passed similar laws (Simon, 2014). Currently, all states have some form of living will and advance directive laws, along with clear definitions of who can serve as a decision maker for an incapacitated patient (Simon, 2014).

Federal intervention resulted from the 1983 right-to-die case of Nancy Cruzan, who at age 23 was left in a persistent vegetative state after a motor vehicle accident. The physicians in charge of Cruzan’s care at the hospital where she was initially taken informed her parents that she would need total care and tube feeding for the rest of her life. Cruzan’s family held out hope that she would make some progress over time. After seven years at a rehabilitation hospital with no improvement, and with physicians saying Cruzan could possibly live up to 30 more years, the Cruzan family sought to have her feeding tube removed. Because Cruzan did not have advance directives, the rehabilitation hospital refused, unless the family could obtain court-ordered approval. Cruzan’s parents had to take their case, Nancy Beth Cruzan v. Director, Missouri Department of Health, to Jasper County, Missouri Court, the Missouri Supreme Court, and finally the United States Supreme Court (Flood, 2005; Morales, 1991).

Although the United States Supreme Court acknowledged that individuals have the right to die, it also acknowledged that every state has the right to set standards to help guide the right to die. Therefore, the case was sent back to the Jasper County, Missouri Court, which required Cruzan’s family to present clear evidence that she would not want to be kept alive in this condition. Family members and friends shared information with the court about conversations they had with Cruzan regarding her wishes about quality and end-of-life care. After hearing the testimony, the Jasper County Court ruled in the family’s favor to remove the feeding tube. In 1990, the feeding tube was removed, and Cruzan died (Flood, 2005; Morales, 1991).

Evolution of the Patient Self-Determination Act

In response to the case of Nancy Cruzan, Congress passed the 1990 Patient Self-Determination Act (PSDA) to ensure that patients are provided information about advance directives and can accept or refuse treatment (Flood, 2005; Martyn & Bourguignon, 1991; Morales, 1991; Pope, 2013; Zelaya, 2004). First introduced in October 1989 by Missouri Senator John C. Danforth and co-sponsored by New York Senator Patrick Moynihan, the PSDA was drafted by legislative aides Elizabeth McCloskey and her predecessor Anne Heller. Both sought advice from experts in theology, ethics, law, and medicine specifically concerned with terminal illness and the right to refuse life-sustaining treatment (Guilfoyle, 1991; Larson & Eaton, 1997).

The initial PSDA bill...consisted of three mandates. The initial PSDA bill, which would later be revised, consisted of three mandates. The first mandate applied to facilities receiving Medicare or Medicaid funding as follows: they must tell patients about their rights to be informed about their medical care and to accept or refuse medical treatment; they must ask patients if they already have an advance directive, and if so, they must honor it to the degree permitted by state law; if they cannot honor the advance directive, they must transfer patients to a facility that can; they must have an ethics committee to educate staff and the community about advance directives and ethical issues regarding terminal illness. The second mandate required states to pass unspecific laws about advance directives. At the time the PSDA bill was introduced, 40 states had living will laws, and 25 states had statutes approving the durable power of attorney for healthcare. The third mandate required the Federal Department of Health and Human Services (HHS) to conduct a study on what the PSDA’s impact could be toward patients and to educate the public about advance directives (Larson & Eaton, 1997).

The bill was revised twice by U.S. Representative Sander M. Levin of Michigan, with input from the Health Care Financing Administration and providers of healthcare, and with an eye toward his own state of Michigan, which did not then have an advance directive law. The revised bill, introduced to the House for the first time as H.R. 4449 (1990) on April 3, 1990, followed the Senate bill except that it removed the two provisions requiring hospitals to have an ethics committee and states to have an advance directive law (Larson & Eaton, 1997).

In May 1990, the PSDA bill, renamed H.R. 5067 (1990), was introduced for the second time. The bill removed the requirement of making healthcare facilities inform each patient verbally about advance directives and document patient wishes regarding health care treatment. Instead, the revised bill required healthcare facilities to give information about advance directives in writing to patients upon admission. This satisfied the Health Care Financing Administration’s concerns regarding the tracking and monitoring of verbally telling each patient about advance directives. The new bill also required healthcare facilities to inform patients of their right to execute an advance directive and document whether a patient had or had not executed one. States were required to create written information and state laws about advance directives. The U.S. Supreme Court’s acknowledgement that individuals have the right to die, and the Jasper County Court’s ruling that the feeding tube be removed from Nancy Cruzan increased public support for the Patient Self-Determination H.R. 5067 bill. Because of the Cruzan case, the PSDA H.R. 5067 was included as part of the Omnibus Budget Reconciliation Act by Congress and was signed into law on November 5, 1990 by President George W. Bush (Guilfoyle, 1991; Larson & Eaton, 1997).

Federal Law Requirements

The PSDA requires all healthcare facilities and/or providers receiving Medicare and Medicaid to: (a) ask patients if they already have an advance directive; (b) provide written information to patients about the right to accept or refuse medical or surgical treatments/procedures following state law; (c) give patients the right to complete an advance directive; (d) document advance directives in patients’ records; (e) educate staff, caregivers, patients, and communities on advance directives; (f) prevent discrimination of care for or against patients who do have an advance directive; and (g) establish and communicate policies about advance directives to staff, caregivers, and patients (Watson, 2010). While the PSDA has increased advance directive documentation in facilities receiving Medicare and/or Medicaid funding, it has not yet increased the completion of ADs, nor has it ever addressed the needs of English as a second-language or non-English-speaking patients (Pope, 2013).

State Law Variability

Although the PSDA allows patients to voice their right to accept or refuse medical treatment, in the final version of the bill passed in 1990 (H.R. 5067), Congress mandated individual states to decide how to control this right for patients who are incapable of making decisions (Clark, 2004; Larson & Eaton, 1997). Consequently, the definition of incapacitation varies among states, as do statements of treatments which individuals can refuse, protocols in place for ensuring a patient is truly incapacitated, and guidelines for who qualifies to make decisions on the patient’s behalf (Anderson, 2012; Clark, 2004; Olick, 2014). If state advance directive laws are more prescriptive than those of the Centers for Medicare and Medicaid Services (CMS), CMS expects facilities to follow the laws of their state (DeJohn, 2013).

How Laws Are Still Evolving: Death with Dignity

... Maynard chose to move to Oregon because its Death with Dignity Act would allow her to end her life on her own terms to avoid the pain and suffering that occur as this type of cancer progresses. The most recent face of the right-to-die movement is that of 29-year-old Brittany Maynard, who in January 2014 was diagnosed with a terminal, cancerous brain tumor. Living in California at the time of her diagnosis, Maynard chose to move to Oregon because its Death with Dignity Act (1997) would allow her to end her life on her own terms to avoid the pain and suffering that occur as this type of cancer progresses. Maynard released a video in which she said, “I refuse to lose my dignity. I refuse to subject myself and my family to purposeless prolonged pain and suffering at the hands of an incurable disease” (Firger, 2015). When the cancer finally began affecting her quality of life, Maynard felt it was time to die. On November 1, 2014, with her family at her side, Maynard ingested a lethal dose of barbiturates and died (Cohen, 2014; Egan, Fowler, & Keating, 2014).

Advance directive laws are still evolving. As seen in Maynard’s case, Oregon’s Death with Dignity Act (1997) allows patients not only to reject possible life-saving treatments but also to actively accelerate death. Washington and Vermont passed similar laws in 2008 and 2013, respectively, and California passed such a law in 2015. Although Montana does not currently have a statute safeguarding physician-assisted death, its Supreme Court ruled in 2009 that nothing in the state law prohibited a physician from honoring the request of a terminally ill, mentally competent patient by prescribing medication to hasten the patient’s death. Since the ruling, several bills have been introduced either to codify or ban the practice, none of which have passed. Whether more states will follow Oregon’s lead remains to be seen (Death with Dignity, 1997).

Whether more states will follow Oregon’s lead remains to be seen. As the laws evolve, they also face resistance and modification. Fearing that end-of-life care may be curtailed to reduce expenses, or that patients may be pressured into making decisions that violate their personal beliefs, some members of the right-to-life movement object to any measures that may limit care for the purpose of hastening death. A bill supported by the movement and introduced in 2015 by U.S. Senator Chris Coons of Delaware (D), is the Medicare Choices Empowerment and Protection Act (2015). This bill allows for advance directives to stipulate life-saving treatments, such as foods or fluids (National Right to Life Committee, Inc., 2015).

From another vantage point in June 2016, U.S. Representative Earl Blumenauer of Oregon (D) introduced a revised 2013 bill to address concerns that advance directives are sometimes ineffective because patients cannot definitively anticipate care for an unknown illness in the future, and even if they have an advance directive, it does not always get into the hands of healthcare providers when needed. The Personalize Your Care Act (2016) would allow people with Medicare or Medicaid coverage to update their advance directive every five years to reflect their current health and choices; allow advance directives to be honored state to state; and enable electronic health records to show the most current advance directive. Further, it introduces a new advance planning instrument called a Physician’s Orders for Life-Sustaining Treatment (POLST), which broadens the definition of an advance directive to allow a person to request healthcare treatment choices recognized in the state where the advance directive was executed; it requires healthcare organizations to provide information about both advance directives and POLSTs to patients; and it offers grant opportunities to states to start or grow POLST programs (Pope, 2013). Both bills are in congressional committees under review.

Bills to amend the PSDA have thus far been unsuccessful. Other proposed amendments to the PSDA have required education campaigns about advance care, Medicare materials that include information on planning advance care, and conversations about advance directives led by student loan organizations with student borrowers (Pope, 2013). Bills to amend the PSDA have thus far been unsuccessful.

Despite the changing contours of advance directive laws, nurses have a legal and ethical obligation to comply and to understand that, in the two decades since the PSDA was passed, evolving laws continue to give increasing importance to the concept of patient autonomy. The evidence on whether or not advance directives actually lead to patients’ preferred treatments is mixed, but having an advance directives provides patients with an active voice in personal healthcare decisions.

Nurses’ Ethical Obligations for Care

Nurses must be well informed about end-of-life care to ensure that patients understand the decisions they make and their consequences. In addition to federal and state laws, the American Nurses Association Code of Ethics (2015) defines the ethical obligation of nurses to educate patients and advocate for their legal right to self-determination. According to Provision 1.4, the role of the nurse is to advocate for every individual to ensure that the right to self-determination, which includes cultural and spiritual beliefs, is upheld. Nurses must be well informed about end-of-life care to ensure that patients understand the decisions they make and their consequences. To accomplish this, nurses must be knowledgeable about moral and ethical rights and state and federal laws related to end-of-life care. Nurses must be able to answer questions asked by patients and family members and clarify confusing and/or conflicting information. If the patient becomes incapacitated and has appointed a healthcare surrogate to make decisions, nurses must confer and support the healthcare surrogate with decision making. Nurses have a moral obligation to ensure that the healthcare surrogate makes decisions based on the patient’s wishes. If the patient is incapacitated and there is no appointed surrogate, nurses must advocate for decisions representing what is best for the patient and assure that any values are upheld (ANA, 2015).

Conclusion

To help patients receive the benefit of their legal right to self-determination, nurses must understand not only the PSDA but also the laws of the state in which they practice. They must understand policy and procedures about advance directives at healthcare institutions where they work and take advantage of available education about advance directives to increase their knowledge.

Nurses in all fields of practice have an important role to promote patient autonomy and completion of advance directives... The more educated nurses are about advance directives, the more informed their patients will be and the greater likelihood that patients will complete an advance directive. Understanding the origins of advance directives and options available to patients can help nurses confidently and purposefully address patients’ needs, even and especially when patient are unaware of their needs in this area. Nurses in all fields of practice have an important role to promote patient autonomy and completion of advance directives, ensuring quality care for all people, regardless of age or current state of health.

Author

Blanca Miller, PhD, RN
Email: bmiller@ilstu.edu

Blanca Miller is an Assistant Professor at Mennonite College of Nursing at Illinois State University. Dr. Miller’s clinical expertise is in the area of critical care nursing with a special interest in patient outcomes related to advance directives.

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Olick, R. S. (2013). On the scope and limits of advance directives and prospective autonomy. In P. Lack, N. Biller-Andorno, & S. Brauer (Eds.), Advancedirectives (pp. 53–71). doi:10.1007/978-94-007-7377-6.