Critical care nurses are confronted daily with the challenges that arise when patients have not designated a surrogate decision maker, when patients' preferences are unclear or unknown, and when there are conflicts among various stakeholders about goals of treatment. Over the last 20 years, clinicians, the public, and policymakers have undertaken concerted efforts to address these challenges. Two landmark events shaped the national dialogue in bioethics, clinical practice, and the lives of countless people who have and will be confronted with decisions about how they will live until they die and how decisions will be made on their behalf. The first event was the Patient Self-Determination Act (PSDA),1 a federal law that requires all institutions that receive federal funding to inform adult patients of their right to choose or refuse any medical or surgical treatment, to ask whether they have executed an advance directive (if not offered assistance in making one), and to provide public education about advance care planning (ACP). The second event was Cruzan v The Missouri Department of Public Health,2 the first so-called "right-to-die case" heard by the US Supreme Court.

The PSDA reached its 20th anniversary in 2010. It followed the 1990 Cruzan v The Missouri Department of Public Health decision that codified patients' right to choose or refuse treatment and to name someone to speak for them when they are no longer able to speak for themselves. Specifically, the Court ruled as follows:

* States have the right to establish standards of proof regarding advance directives; for example, Missouri requires "clear and convincing evidence."

* Adults with decision-making capacity have the right to choose and refuse any medical or surgical treatment.

* Adults can make advance directives and name a surrogate to act on their behalf in the event of lost capacity.

* The surrogate can make decisions regarding withholding/withdrawing life support even if that decision hastens death (Cruzan v Director, Missouri Department of Health, 497 US 261 [1990]).

The confluence of these events galvanized public and private dialogue and stimulated many initiatives to promote ACP and to improve care at the end of life.

Twenty years later, it is important to pause and to reflect on what has been accomplished and where the next horizons for action lie. In November 2010, the Center for Practical Bioethics convened a national summit3 with leading experts in palliative care, bioethics, moral theology, nursing, and geriatric medicine.

The Center's overarching goal was to commemorate what is, perhaps, bioethics' most important case, Cruzan v The Missouri Department of Public Health, and the passage of the PSDA and to consider the impact of these 2 events on the care of seriously ill patients and their families today. The specific objectives for the national summit were to:

1. consider the impact of both on social policy, including clinical practice, law/politics, religion, disability advocacy, and health economics;

2. review the use of artificially administered nutrition and fluids and the tensions that surround them;

3. propose policy solutions to mitigate current tensions in a democratic pluralistic society; and

4. publish related articles in peer-reviewed journals.

What Progress Has Been Made?

Since 1990, significant progress has been made in both ACP and care of the seriously ill and dying. Importantly, there has been a conceptual shift away from what some refer to as "legalistic transactional models" of ACP toward a communication model.4 Several resources have emerged to help individuals gain clarity about their goals and values and to communicate their preferences at the end of life. Some examples include the Center for Practical Bioethics' Caring Conversations (http://practicalbioethics.org/about/model-and-methodology/making-your-wishes-kno); Respecting Your Choices developed at Gunderson Lutheran in La Crosse, Wisconsin (http://respectingchoices.org); and Five Wishes provided by Aging with Dignity (http://www.agingwithdignity.org/five-wishes.php). Most important is a shift from personal "declarations," in which a person is expected to imagine situations in the future and express specific treatment choices, to placing importance on conversations among families and intimate others and naming a durable power of attorney for health care. Table 1 includes key examples of the progress that has been made in ACP nationwide.

Table 1: Examples of Progress in Advance Care Planning

What Are the Lingering Issues?

Advance Care Planning

Since the passage of the PSDA, the question has been how to have confidence in how decisions are made and who makes them when people can no longer speak for themselves. The intent of the PSDA was to provide people with the opportunity to designate a surrogate decision maker or health care agent and to communicate their preferences for various types of end-of-life care to them. Ideally, the litmus test for quality ACP is a process that reflects patient goals, values, and preferences, with patients designating their desired surrogate decision maker. Although some progress has been made in both areas, the number of adults with advance directives in the United States is still inadequate. One of the challenges of executing advance directives has been conflation of 2 common types of advance directives: living wills and durable power of attorney for health care or designation of health care agents. Although the designation of a person to speak on behalf of another when the person loses capacity is straightforward, its coupling with a living will has created unexpected concerns related to decisions about the scope and type of end-of-life care the person desires when faced with serious illness or death that the surrogate may have to make. For many people, executing a living will requires prognostic information in addition to an understanding of the types of treatments that might be necessary when facing serious illness or death and to imagine what one would choose under such uncertain circumstances. Fears about a disregard for life, unjust access to life-sustaining therapies, and inappropriate limitations on choices led to widespread public and private resistance fueled by what some described as creating "death panels." Despite the hope that having people write down their preferences in an advance directive would avert conflict at the end of life, many critical care nurses have witnessed the difficulties in applying them in conditions that were never anticipated or when interpretation is unclear or uncertain on the basis of the prognosis or diagnosis of the patient.12 The concerns have resulted in people not executing either an advance directive designating a health care agent or a living will/directive regarding preferences for end-of-life care and surrogates being ignored by health care professionals.

Boundaries of Consciousness

Since the Cruzan decision, the boundaries between the persistent vegetative state (PVS) and the minimally conscious state (MCS) have become more defined.13,14 Although progress has been made in the diagnosis of the MCS, confusion remains about its impact on the care of patients who do not meet the criteria for diagnosis of PVS, but who may have variable states of consciousness.15,16 Given these new understandings, how should clinicians, families, and patients think about what is ethically permissible in cases involving both PVS and MCS? Some argue that advances in neurology make ACP more important than ever.

Medically Provided Hydration and Nutrition

Given the somewhat tenuous consensus regarding the permissibility of forgoing medically provided hydration and nutrition (MPH&N) following the Cruzan case, the Terry Schiavo case fueled renewed debate about the ethical permissibility of forgoing MPH&N in cases of PVS.17 Today, wide variability in opinion persists about the ethical permissibility of forgoing MPH&N under any circumstances, and cases involving infants and children are particularly contentious.18 These controversies will likely persist as political and religious groups polarize, and the boundaries of ethical permissibility remain debated. Similarly, questions remain about who is authorized, legally and ethically, to make decisions for people who are permanently unconscious or have never attained consciousness. In both the Cruzan and Schiavo cases, the decision of the legal and ethical surrogate was challenged; however, ultimately the rule of law was upheld, and surrogate decisions were accepted. Some ethicists and palliative care specialists are proposing new models aimed at upholding core ethical values by avoiding the use of MPH&N in favor of offering comfort feeding only to patients who are dying or have advanced dementia.19 The question of appropriate use of MPH&N in the critical care setting deserves further dialogue in light of this conceptual model.20

Transitions Across Settings of Care

Concurrent with the implementation of the PSDA, challenges emerged regarding decision making for patients with life-limiting or terminal conditions and the subsequent documentation of goals of care, including decisions about preferences for the use of life-sustaining therapies. The burgeoning number of patients cared for at the end of life in nursing homes, long-term care facilities, and home settings combined with discontinuities in health systems has created new challenges for care across the continuum.21 Frequent transfers to acute care settings for patients whose goals and preferences were unknown or undocumented led to the provision of unwanted or ineffective treatments that prolonged dying or caused disproportionate and undesirable burdens.22 Such transfers are of supreme importance in the critical care setting, especially when beds remain a scarce resource, and decisions are made urgently. Models such as Physician Orders for Life-Sustaining Therapies can create systematic processes aimed at clarifying goals and preferences in anticipation of such events.9,10

ACP Applies Across the Life Span

Although the PSDA strictly applies to adults, the spirit of the law suggests that it also creates opportunities for adolescent patients to consider who they would trust to speak for them and to indicate preferences for certain types of therapies and end-of-life care.23,24 Despite the challenges of empowering adolescents and young adults to take on these tasks,25 some states have formalized a process for adolescents to make these choices and to empower them to discuss their preferences with their families or other surrogates.26 Similarly, the implementation of the PSDA created unique challenges in considering advance directives for pregnant women.27

Opportunities for Critical Care Nurses

Critical care nurses have an obligation to become involved in addressing the myriad issues that accompany critical illness, loss of capacity, and impending death.28Table 2 lists 10 things critical care nurses can do to participate in this important aspect of their role. In addition, critical care nurses are ideally positioned to provide needed leadership to advocate for organizational and system changes to uphold the intent and spirit of the PSDA.

Table 2: Ten Things Critical Care Nurses Can Do to Improve Advance Care Planning

Uphold Ethical Obligations

Critical care nurses are ideally situated to extend the spirit of the PSDA into the future. As advocates for patients and their families, critical care nurses are in a powerful position to speak on behalf of those who cannot speak for themselves and to advocate for them. Critical care nurses have an obligation to act to benefit patients in ways that are congruent with their goals, values, and preferences, while alleviating suffering and accompanying them throughout their disease trajectory and death.32 A key element for actualizing this obligation is the cultivation of relationships with patients, their families, and other members of the health care team and systems of care that support communication, decision making, and conflict resolution. Success depends on the cultivation of individual capacities in ethical discernment, analysis, and action,33 and a workplace that reflects the elements of the American Association of Critical-Care Nurses' (AACN's) healthy work environment.34

Shift From Advance Directives to ACP

Although the spirit of the PSDA focused on upholding a person's right to make autonomous decisions for himself or herself, the implementation of the law has been reduced to impoverished methods that focus on documents rather than a process of discernment, decision making, and mindful documentation.35 Advance care planning is intended to be an ongoing process whereby patients and families engage in concerted, incremental dialogue with each other and with clinicians to design a plan of care that reflects the goals, preferences, and values of the critically or terminally ill person. Instead of continuing to promulgate event-focused processes and systems, critical care nurses can play a pivotal role in designing systems that support relationships and systems of care that support patient preferences and values. Instead of focusing on the completion of advance directive forms to comply with regulatory or legal requirements, critical care nurses can adopt methods that cultivate relationships and dialogue. "Caring Conversations" is a program that provides workbooks, videos, and other resources to encourage families to have meaningful conversations about their goals, values, and thoughts about treatment with marginal benefit in the face of serious advanced illness.

Identify and Empower Health Care Agents to Make Decisions

Critical care nurses can be instrumental in working with nurse colleagues and other clinicians in inpatient, primary care, emergency department, and community settings to create systems to support patients to identify a surrogate decision maker and to share their preferences with that person. Critical care nurses can lead campaigns to "decouple" the completion of an advance directive to designate a health care agent from the completion of a living will. For example, during the 2011 National Health Care Decisions Day (http://www.nhdd.org/), the Ethics Service at Johns Hopkins Hospital launched a campaign to engage patients, families, and staff in considering "Who will speak for you?" Focusing on the single question of "Who would want to speak for you if you can't speak for yourself?" as part of admission data gathering, clinic visits, and myriad patient encounters across the continuum of care expands the responsibility for documentation of such preferences to all members of the health care team. This single question does not require knowledge of prognosis or even diagnosis-it requires a relationship and a commitment to give patients multiple and repeated opportunities to consider the person they trust most to speak on their behalf. Critical care nurses should no longer defer this responsibility to admitting clerks or others on the health care team. They, along with every other person who comes in contact with patients and families, should exercise their responsibility to ascertain whether the patient has considered this important question, discussed it with the person they choose, and documented it in a DPA. Many states, such as Maryland, have standardized forms that can be easily downloaded for immediate use.36 Such approaches fully embrace the intent of the PSDA to offer people choices that reflect their values and preferences.

Document Conversations

Given their around-the-clock proximity to critically ill patients and families, critical care nurses have repeated and unique opportunities to document conversations they have with both patients and families regarding preferences for decision makers and end-of-life care. Although written advance directives are important, so too are verbal directives and conversations that add to the interdisciplinary team's understanding of the patient's goals and preferences. Documentation of these conversations is an essential advocacy responsibility for critical care nurses. By embracing their unique position to translate the contents of conversations for other members of the team, critical care nurses enhance the likelihood that patients will receive the care they desire.

Help Others Reframe the Decisions About Goals of Care

Critical care nurses often experience moral distress and frustration when others on the clinical team fail to act in accordance with patients' preferences37,38 or when the care they provide is perceived to be "futile."39 Frequently, critical care nurses identify that the goals of patient care are incongruent with medical treatment or patients' preferences. Opportunities for reconsidering and reframing what is possible for patients nearing the end of life offer important avenues for patient advocacy and alignment among the team. Routine processes such as asking "Would you be surprised if this patient died on this admission?" contribute to identifying patients for whom conversations about goals of care, prognosis, and end-of-life care are required. Critical care nurses have an obligation to contribute to ongoing reassessment of patients' goals and preferences and to participate in identifying patients with palliative and end-of-life care needs. Regular opportunities to explore these issues among team members and to address the resistance that arises in accepting that treatments are not working or that lack of success is a failure are needed, alongside patient- and family-focused interventions. Supporting team members to resist offering false reassurance or unrealistic expectations can help to avoid the ultimate devastation that results when patients and family members have not had the opportunity for honest, informed dialogue or decision making.

Prepare Families and Teams for Transitions

Critical care nurses can partner with colleagues in short-term care, long-term care, and primary care settings to anticipate a range of predictable transitions that will occur across the trajectory of various diseases. Using methods such as Physician Orders for Life-Sustaining Therapies, designed to document patient preferences for interventions based on goals of care, can improve continuity and communication across settings of care.40 Because of the increasing numbers of patients who have chronic and life-limiting conditions and have repeated and frequent admissions to the intensive care unit, critical care nurses have unprecedented opportunities to participate in unit and organizational efforts to clarify preferences and to circumvent inappropriate or unwanted interventions. Instead of focusing on interventions such as resuscitation or technologies, critical care nurses are ideally prepared to help patients and families recognize where they are on the disease trajectory and anticipate decisions and the need to consider "What should we do if we can't save your life or restore you to a state of health that is desirable for you?" Critical care nurses can provide needed leadership to collaborate with colleagues across the continuum of care to design systems to proactively discuss, document, and implement patient choices.

Develop Support Systems

The burgeoning number of baby boomers and the rapidly expanding use of technology intensifies the likelihood of ethical conflict and requires that critical care nurses develop and use support systems aimed at cultivating resilience and personal well-being. These systems, coupled with institutional strategies aimed at creating a robust ethics infrastructure and healthy work environment, are crucial for supporting clinicians to provide high-quality care for patients facing critical illness and death. For highly functioning ethics committees and consultation services that include nurse members and unbridled access, implementation of self-care and renewal strategies, along with interprofessional collaboration, systems redesign, and resources for palliative and end-of-life care, will be critical. Unit and institutional educational efforts to explore the boundaries of ethically permissible care and the impact of providing critical care on nurses and members of the interdisciplinary team can be supported by adopting and using resources such as AACN's 4 A's to Rise Above Moral Distress, aimed at building knowledge, skills, and coping strategies.41

Monitor Trends

Critical care nurses are instrumental in documenting the intended and unintended consequences of institutional and public policy initiatives to improve care for people with life-threatening and life-limiting conditions. Critical care unit performance dashboards should routinely include quality indicators related to ACP, end-of-life care including the provision of life-sustaining therapies and resuscitation, documentation of goals of care and treatment preferences, and bereavement. Likewise, critical care nurses can lead efforts to identify patterns and ongoing cases that cause moral distress and to institute routine review mechanisms, similar to root cause analysis for safety, to begin to identify root causes and develop systematic methods for addressing these issues.42

Become Visible Spokespersons

Consistent with the American Nurses Association's Code of Ethics, nurses have a broader advocacy role in bringing patients' and families' voices into the public and policy dialogue. Critical care nurses are ideally suited to convey the day-to-day realities of the implementation of public policies such as the PSDA. AACN's agenda has been to mobilize nurses to be part of the public dialogue. Critical care nurses should participate in groups such as the Coalition to Transform Advanced Care to educate patients, families, policymakers, and leaders about the realities of critical care.

Summary

Together with the US Supreme Court's decision in the Nancy Beth Cruzan case, the PSDA profoundly changed care at the end of life and the way decisions are made for those who can no longer be self-determining. Although much progress in care for those who are seriously ill and dying has been made since 1990, much work remains to ensure that all Americans receive quality end-of-life care that is consistent with their goals and values. Too often patients' wishes are unknown or ignored, and we reflexively default to acute curative care that may prolong suffering.

Critical care nurses are crucial participants in upholding the spirit of the PSDA and advancing the legacy of Nancy Beth Cruzan. Unrealized opportunities to empower patients to make choices that are aligned with their values and preferences uniquely position nurses to provide leadership. The question for nurses is one that anthropologist Franz Boas asked nearly a century ago: "How do we recognize the shackles that tradition has placed on us? If we recognize them, we are then able to break them." Nurses and others devoted to these issues must stand together to create a new and revitalized agenda for change. If not, 20 years from now, another group will meet to reflect on why the motives behind the Cruzan Anniversary Conference were never realized.

REFERENCES