This textbook has examined the trajectories of both clinical ethics and palliative care, as well as the points at which they intersect. It has described a comprehensive approach to ethical dilemmas in palliative care, explored the nuances of prognostication and advance care planning, and explored death and dying in great detail. Far from an afterthought, pediatric-specific issues have been analyzed with respect to various stages of development, ranging from prenatal to adolescent. Other crucial topics—such as nonbeneficial treatment, neuropalliative care, organ donation, and clinical research—have been explored, as well as fundamental aspects of patient care that influence all medical decisions, including communication, culture, and spirituality. The overall approach set forth here will (hopefully) empower clinicians to reach the best—or, in some cases, “least bad” (Powderly, 2003)—resolution to ethical dilemmas.
A basic dictum of ethics is that “ought implies can,” meaning that one cannot say a person ought to do something that he is unable to do (Buckwalter & Turri, 2015). This is highly significant because to apply the lessons of this textbook, three things are required:
1. palliative care team that is
a. well-trained and well-equipped, and
b. highly functioning
2. the power or authority to act on the thoughtful conclusions the team reaches
Absent any of these, it may be impossible formulate a response to a complex ethical dilemma or implement the response even if it can be formulated.
These three prerequisites are often not met, especially in the developing world. But rather than merely acknowledging that sad fact, it is imperative to take active steps to remedy the situation. The fact that one is unable to do what one otherwise ought to do is itself an ethical dilemma, especially when the end result is that patients suffering from life-limiting illness do not receive the care they desperately need and deserve.
As noted in more detail elsewhere (p. 36), American society emphasizes negative rights (i.e., the right to be left alone). Among the very few positive rights are police, fire, and military protection and education through grade twelve. Health care is notably absent from this list, which is quite unique—not to mention tragic—compared with other developed nations (Fisher, 2012).
By its very nature, ethics goes beyond commenting on what is the case to advocating for what should be the case in an ethically ideal situation. The complexities of health care delivery systems and financing are legion and therefore far beyond the scope of this textbook. But it is reasonable to consider—after going into such detail about the momentous and often confounding decisions facing patients in need of palliative care—whether these patients are truly receiving the care that they deserve (and, by extension, the opportunity to make an informed choice from among an appropriate slate of options). In other words, should palliative care be considered a basic human right, which governments therefore have a moral obligation not only to refrain from interfering with but also to actively provide?
To be sure, there are other worthy candidates for the mantle of “guaranteed health care,” childhood immunizations and basic primary care among them. But perhaps the one certainty of life is that it will end, making dying a universal experience. Beyond that—as should be clear from the preceding pages—the potential for suffering at the end of life is profound, as is the possibility of meaning. Is it, therefore, really such a revolutionary claim to assert that “all people have a right to receive high quality care during serious illness and to a dignified death free of overwhelming pain and in line with their spiritual and religious needs” (World Health Organization, 2004)?
The matter of access is not merely a practical or political issue; it is also an ethical issue, because for all the debate about the “right to die”—which at one point meant refusal of life-sustaining medical treatment and now has come to mean active hastening of death, such as through physician-assisted dying (chapter 8)—the most fundamental right related to dying is to do so with comfort, companionship, and dignity. It follows that every patient has the right to basic elements of palliative care in the midst of serious illness and approaching death: respect for personal values, symptom management, psychosocial support, coordination of care, and (of course) ethical decision-making (Brennan, 2007).
This is not to say that every patient requires a highly trained, deeply experienced transdisciplinary care team. While this is the ideal, such an expectation would rapidly outpace resources in most of the world. From a clinical perspective, this is often unnecessary, with generalist palliative care sufficing in most situations (Quill & Abernethy, 2013), especially when specialist-level treatment modalities are not available. It is also impractical to expect universal specialist palliative care, given the workforce challenges noted later in this chapter. For this reason Randall and Downie (1999) rightly assert only a weak moral obligation to provide specialist palliative care to those whose basic needs otherwise could be served by generalists.
By contrast, they assert a strong moral obligation to provide specialist palliative care to meet the needs of the sickest patients. Here it is important to identify precisely what is meant by “need.” The World Health Organization statement noted earlier takes a rather broad view of this term, essentially equating it with “capacity for benefit.” On this understanding, one might consider the majority of elderly patients to be “in need” of palliative care, which presumably would be more nuanced and comprehensive coming from a specialist in the field. This is too broad, however, for in terms of allocation of limited resources, “the perfect is the enemy of the good” (Voltaire, 1923).
A more modest definition is offered by Beauchamp and Childress (2009): “something without which someone will be fundamentally harmed.” This lowers the bar substantially in terms of when generalist palliative care is appropriate and sufficient, while also recognizing the potential for harm when specialist level care is required but not available.
Specialist level care is often required because of the multiplicity of complex options available to patients in the developed world. By contrast, in the developing world even the most basic palliative care interventions may not be available (and could make a huge difference if they were). Patients’ rights should not change depending on where one lives, but the approach to meeting those needs—recognizing that clinical ethics must be practical (p. 42)—is distinct.
In the Developed World
In the developed world,1 people are living longer: between 1900 and 2000 life expectancy in the United States rose from forty-seven to seventy-seven, equivalent to the gain from the Stone Age to that point, a period of 10,000 years (Meier, 2010). Technological discoveries have not only prolonged life but also raised novel and thorny questions, making at least the context and timing—if not the ultimately inevitability—of death in many cases a matter of choice. It is estimated that ninety million Americans are currently living with serious illness, of whom six million could benefit from palliative care (Center to Advance Palliative Care, 2014).
There was not, however, an equivalent growth in palliative care, at least in the first half of the twentieth century. Indeed, the term itself had not yet been coined (p. 3), and the modern hospice movement was still on the horizon. Over the past few decades, however, the field has literally exploded. For a clinical specialty that was only formally recognized in the twenty-first century, the growth of palliative care programs in the developed world (and especially in the United States) has been impressive. Palliative care has gone from an esoteric term that few understood, to being equated with “giving up,”2 to becoming a reasonable expectation with almost 90% of US hospitals of three hundred or more beds now having an identified palliative care program (Center to Advance Palliative Care, 2015). Admittedly, this bar is rather low, as having an “identified” palliative care program is no guarantee of availability, experience, or quality.
Beyond palliative care simply being “the right thing to do,” there are many reasons for its growth. It fits perfectly with the “triple aim” of modern health care: improved patient experience, better population health, and reduced costs (Institute for Healthcare Improvement, 2017). Palliative care has been shown to improve family experience with serious illness (Casarett et al., 2010). Studies have documented increased survival with palliative care in certain conditions (p. 15). And in an era of exploding health care costs, palliative care consultation has been shown to save money: $4,000 in direct hospital costs for patients discharged alive and over $7,500 for those who die in the hospital (Morrison et al., 2011).
The need for improved palliative care is highlighted by the deficiencies of previous initiatives. The seminal SUPPORT study, for instance, found that advance directives were often not honored—or even identified—and patients frequently suffered at the end of life, even when focused education and institutional initiatives were implemented (SUPPORT Principal Investigators, 1995). Regulatory structures have attempted to recognize and promote the practice of palliative care, as evidenced by the introduction in 2011 of palliative care certification by the Joint Commission (2012).
From a legal standpoint, there have been several seminal developments in palliative care. Supreme Court decisions in Vacco v. Quill and Washington v. Glucksberg in 1997 not only examined physician-assisted dying (PAD); they also touched on the Rule of Double Effect, palliative sedation, and palliative care in general. Some have gone so far as to argue that these decisions essentially established a constitutional right to aggressive palliative care, by declaring that any state law deeming intensive symptom management as homicide is unconstitutional (Burt, 1997). At the same time, lower courts have found physicians liable for inadequate pain management, which has been interpreted as negligent care (Bergman v. Chin, 2001).
Lest one view the situation through rose-colored lenses, there is still a long way to go. The ratio of patients with serious illness to palliative care physicians (1,200:1) dwarfs that of newly diagnosed cancer patients to oncologists (141:1) or patients with cardiac disease to cardiologists (71:1) (Block, 2014). The United States has less than 15% of the hospice/palliative medicine specialists necessary to meet the needs of patients (Lupu & American Academy of Hospice & Palliative Medicine Workforce Task Force, 2010), and that deficit is likely to worsen now that completion of a fellowship is a requirement for board certification. Fewer than 250 physicians graduate from fellowship each year, vastly insufficient to make up for the estimated shortage of 18,000 palliative care physicians in the United States (Kamal et al., 2016).
Training is also a challenge in the provision of generalist palliative care. For while palliative care is receiving increasing attention in medical school, it is still not a required component in the curriculum, as are standard specialties such as obstetrics and gynecology (despite the fact that only half the population is female, yet 100% of the population will die one day). Several states have established requirements for continuing education in palliative care or pain management as a precondition for medical licensure (Federation of State Medical Boards, 2017), but the degree to which this impacts care has not been proven. And despite the significant cost savings associated with palliative care (at least on an inpatient basis), hospitals are often reluctant to invest in palliative care programs because they tend not to be “revenue generators” (Cassel, Kerr, Kalman, & Smith, 2015).
Regulatory issues also stand in the way of patients receiving optimal hospice or palliative care. The Medicare Hospice benefit is essentially unchanged since its introduction in 1982, requiring a prognosis of six months or less if the disease runs its normal course (Centers for Medicare and Medicaid Services, 2015). Despite data showing that expanding access to hospice actually lowers costs by as much as 22% (Krakauer, Spettell, Reisman, & Wade, 2009), governmental restrictions remain in place. This is one of the reasons why the median hospice admission is only eighteen days, and one-third of patients are referred to hospice in the last week of life (National Hospice and Palliative Care Organization, 2015).3
Political grandstanding also stands in the way of meaningful reform. A well-known example involved the 2009 debate about the bill that would eventually become the Affordable Care Act, or “Obamacare.” The Advance Care Planning Consultation section of the bill authorized Medicare reimbursement for physicians who provided voluntary counseling regarding advance directives and treatment wishes. Given the time required to do this well, not reimbursing physicians for this service created a significant disincentive to providing it.
Given that advance care planning shows respect for patient autonomy, this section would not seem controversial. But its proximity in the written bill to a section that noted potential cost savings prompted sharp criticism. Betsy McCaughey, former Lt. Governor of New York, falsely asserted that this section would “absolutely require that every five years people in Medicare have a required counseling session that will tell them how to end their life sooner” (Politifact, 2009). Most (in)famously, former Alaska governor and vice presidential candidate Sarah Palin asserted that
the America I know and love is not one in which my parents or my baby with Down Syndrome will have to stand in front of Obama’s “death panel” so his bureaucrats can decide, based on a subjective judgment of their “level of productivity in society,” whether they are worthy of health care. Such a system is downright evil. (Corn, 2009)
Despite being named the “Lie of the Year” by Politifact, the resulting media storm led Congress to remove the Advance Care Planning Consultation section of the bill, delaying Medicare reimbursement for this crucial service until it was finally passed in 2016 (Dresser, 2016).
Cultural mores are another barrier. Some have described American culture as “death-denying,” in that it treats death “as a kind of accident, a contingent event that greater prevention, proven technology, and further research could do away with” (Callahan, 1995). Slogans for major hospitals—such as one proclaiming that it is “making cancer history” (MD Anderson Cancer Center, 2016)—feed into this perception. In evolutionary terms, it is not really that long ago that some hospital administrators expressed reluctance to participate in Elizabeth Kübler-Ross’s (1969) groundbreaking research because supposedly no patients were dying in their facilities. Perhaps not as much has changed since then as one would have hoped.
A variety of remedies have been proposed. One is so-called “open access” to hospice, thereby allowing patients whose life expectancy is greater than six months to qualify for the Medicare hospice benefit. While some have shied away from such a proposal for fear of uncontrolled expenditures—which, it should be noted, was the reason the original hospice benefit began as a “demonstration project” and was proven unfounded (Davis, 1988)—preliminary studies should allay these concerns. For instance, when Aetna allowed patients with up to one year to live to receive hospice care as well as some types of antineoplastic treatment, hospice use increased, but acute (i.e., emergency department) and critical care use decreased (Spettell et al., 2009). The end result was both cost savings and higher quality care.
Training barriers also have to be addressed. The number of government-funded training slots has remained level since the Balanced Budget Act of 1997, even in the face of increasing numbers of medical school graduates. This has forced fellowship programs to rely on philanthropy for funding, which may or may not be forthcoming. Because of the dearth of board-certified palliative care clinicians, the bulk of palliative care is provided by nonspecialists. Working within the current system, innovative programs have been developed to nurture basic palliative care skills (Hauser, Preodor, Roman, Jarvis, & Emanuel, 2015), but systems-level change is still required.
Several steps could be taken to improve the situation. One is lifting the cap on Graduate Medical Education funding and positions, prioritizing in-demand specialties such as hospice and palliative medicine. Innovative fellowship models could be developed, which might include mid-career and part-time tracks (American Academy of Hospice and Palliative Medicine, 2015). Political and social activism are clearly necessary in order to correct present—and prevent future—misconceptions about hospice and palliative medicine.
Many of these initiatives are components of the Palliative Care and Hospice Education and Training Act (2015), which was first introduced in Congress in 2012 and has broad bipartisan support. This bill would provide educational grants and career development awards, expand fellowship options, boost retention of current clinicians, and provide career incentive awards for non-physicians who agree to teach or practice palliative medicine in their respective specialties. It would also expand public awareness of hospice and palliative care, and increase research funding in this area (p. 453).
This cultural shift is critically important and already in evidence. Greater attention by the media (Moyers, 2000) and the lay press (Gawande, 2014) has heightened awareness of the need for—and benefit of—palliative care. Grassroots efforts—such as “death cafés” (Nelson, 2017) and the “Before I Die” art project (Chang, 2013)—are making it easier for people to discuss their health and mortality. Perhaps, then, the pendulum is beginning to swing back from “death denied” to death as a legitimate topic of conversation.
In the Developing World
In the technological world of the United States, it is easy to lose perspective. Caught up in ethical debates about PAD—which affects a tiny fraction of the population—one can easily forget that the majority of the world’s population has limited access to morphine for pain and dyspnea at the end of life. North America and Europe consume 90% of the world’s opioids, with lower- and middle-income countries using only 6%. Morphine is not even available in over 150 countries, and 80% of the world’s population does not have access to basic pain treatment (Lamas & Rosenbaum, 2012).
This is in large part due to onerous prescribing regulations which are often based on the 1961 United Nations Single Convention on Narcotic Drugs (United Nations, 1972) which disproportionately focused on use of illicit drugs like heroin. The unintended consequence is that opioids are not a therapeutic option in many countries (Rajagopal & Joranson, 2007). For instance, a recent documentary noted that in India, regulatory restrictions are so draconian that physicians in all but one of the country’s twenty-eight states simply avoid prescribing opioids altogether (Rajagopal, 2014).
Even if opioids were available, delivering them to patients in need can be challenging, especially in large countries with large rural (and underserved) areas. Many such countries are quite poor, limiting the ability of those in greatest need to advocate in the halls of power. Cultural acceptability is also an issue: in many countries, opioids are associated with drugs of abuse, and appropriate use of opioids at the end of life is not well-known (Manjiani, Paul, Kunnumpurath, Kaye, & Vadivelu, 2014).
Beyond the availability of medications, there also exists a deficit in clinician education. Forty-two percent of countries have little or no access to hospice and palliative care services, and only twenty countries have palliative care well integrated into the health system (Worldwide Palliative Care Alliance, 2014). Understandably, clinicians tending to seriously ill patients may be more focused on keeping them from dying from preventable diseases such as malaria or gastrointestinal illness. The end result, however, is that patients who cannot be saved are allowed to die painful deaths.
Recognizing the systems-level barriers to providing even basic palliative care, the European Association for Palliative Care issued the “Lisbon Challenge” in 2011. This challenge appeals to governments to modify health policies to meet the needs of patients with life-limiting illness, ensure access to essential medications, provide training in palliative care, and integrate palliative care into the health care delivery system (Radbruch, Payne, de Lima, & Lohmann, 2013). Various professional organizations have assisted in implementing these noble objectives (American Academy of Hospice and Palliative Medicine, 2017), and targeted philanthropy has also been of assistance (Cairdeas International Palliative Care Trust, 2017).
The purpose of this discussion is not to attempt to provide the “answer” to palliative care needs in the developing world. That is a vastly complex question which must take into account global politics, economic disparities, deficiencies in training, and deeply ingrained cultural beliefs. Rather, the purpose is to highlight the ethical imperative to provide at least primary palliative care to all patients in need, regardless of what country or context they may live in. For all the (hopefully) insightful and nuanced discussion in the preceding pages about fascinating ethical issues such as PAD and palliative sedation, these impact relatively few patients, while millions suffer needlessly for wont of basic palliative care interventions (such as morphine). Just as ethics consultation is merely the tip of the iceberg of clinical ethics—highly visible yet proportionally small compared to the entire enterprise—so also “first-world problems” may attract a great deal of attention, but this should not distract from global issues that present a greater threat (in terms of suffering) to humanity in general.
Maintaining Highly Functioning Teams
Even if a palliative care team is accessible at some point—which, as noted, is a big if—this is no guarantee that the palliative care team will remain highly functioning over a prolonged period of time. Precisely because palliative care addresses very complex and emotionally charged issues, burnout and compassion fatigue are important concerns. Once again, the task here is not so much to attempt to solve those problems—which have proven very challenging—but to identify them and highlight their ethical importance. For if there exists an ethical obligation to provide high-quality palliative care to patients in need, then there must also exist a parallel ethical obligation to safeguard the well-being of those tasked with providing that care, so as to maintain provision of that care over time.
Personal challenges begin early in medicine. Between 21% and 43% of residents (Mata et al., 2015)—and one out of four medical students (Rotenstein et al., 2016)—show signs of depression. Once in practice, the pressure only increases. While varying to degrees, every medical specialty is seeing increasing rates of burnout (Shanafelt et al., 2015), which refers to “a form of mental distress manifested in normal individuals who experience decreased work performance resulting from negative attitudes and behaviors” (Kearney, Weininger, Vachon, Harrison, & Mount, 2009). Physicians are significantly more likely to commit suicide (Council on Scientific Affairs, 1987) and experience divorce (Sotile & Sotile, 1996) than other professions.
Burnout is quite common among physicians caring for patients at the end of life, with up to 60% of oncologists showing signs of it. Its characteristic symptoms—such as numbness, detachment, and avoidance of emotionally charged situations—have a direct impact on the care provided (Kearney et al., 2009). It is also a stronger predictor of poor job satisfaction than is depression and can lead to a variety of health complications, including increased risk of heart attack, stroke, and sleep disturbance (Melamed, Shirom, Toker, Berliner, & Shapira, 2006). This has led some to expand the “triple aim” of health care to a quadruple aim, adding improving the work lives of clinicians and those who provide care (Bodenheimer & Sinsky, 2014).
A related concept is compassion fatigue, which has been defined as “a formal caregiver’s reduced capacity or interest in being empathetic or bearing witness to the suffering of patients and is the emotional state that results from knowing about the traumatizing events that another human being experienced” (Figley, 1983). Whereas burnout arises out of the work environment, compassion fatigue is the result of the physician-patient relationship. Described by some as the “cost of caring” for people in distress, it can be quite pronounced in palliative care (O’Mahony et al., 2017). Frequently it is the result of secondary or vicarious traumatization, as the clinician—out of a noble attempt to actively engage with the patient’s own suffering—suffers himself, as well. This can lead to symptoms of posttraumatic stress disorder including hyperarousal, avoidance, and re-experiencing.
A variety of solutions to burnout and compassion fatigue have been proposed, often focusing on self-care outside of the work place. By itself, though, this is not enough, as it overlooks the institutional and structural factors which led to these conditions in the first place. As Kearney et al. (2009) write, “Physicians with burnout who use self-care without self-awareness may feel as though they are drowning and barely able to come up for air, whereas self-care with self-awareness is like learning to breathe underwater.”
Institutional factors also need to be taken into account. Studies have shown that it is not so much the amount of work that contributes to burnout and compassion fatigue but rather the proportion of time spent on meaningful activities. In an increasingly automated and technological medical environment (Hill, Sears, & Melanson, 2013), physicians are spending more and more time on administrative and regulatory tasks, rather than on the human elements of patient care that brought them to the profession in the first place. Institutions would do well, therefore, to establish an acceptable balance between these competing obligations.
On a personal level, the way to treat—and, ideally, prevent—burnout and compassion fatigue involves both self-care and self-awareness. Clinicians must recognize the stressors that are inherent in the practice of palliative care and seek to engage with the patient’s suffering, while also recognizing that it is something other than one’s own. Steps shown to build self-awareness include Balint groups (Rabinowitz, Kushnir, & Ribak, 1996), reflective writing (Frisina, Borod, & Lepore, 2004), and mindfulness meditation (Shanafelt et al., 2005).
Such self-awareness allows the clinician to simultaneously take into consideration the patient, the work environment, and himself. Rather than withdrawing from emotionally charged patient encounters, the clinician leans into the encounter, daring to engage in what the trauma literature calls “exquisite empathy” through full engagement with the patient. This enables the development of “compassionate satisfaction”—rather than fatigue—through a measure of “bi-directionality.” Instead of weighing the clinician down with vicarious suffering, exquisite empathy enlivens the clinician through witnessing the meaning the patient and family may ultimately derive from the care they receive. This, then, leaves clinicians “invigorated rather than depleted by their intimate professional connections with traumatized clients” (Harrison & Westwood, 2009).
It is not enough to merely acknowledge the need for palliative care in a certain population and then initially train a team to address that need. That team requires ongoing support to do the noble and challenging work of palliative care, which includes permission to engage in self-care. Beyond that, though, the team needs to be equipped with the tools of self-awareness in order to avoid burnout and compassion fatigue. To attend to one’s own needs as a palliative care clinician is not selfish; rather, as a necessary component of continuing to care for people in need over a prolonged period of time, it is an ethical obligation.
This textbook has attempted to describe a thoughtful approach to various ethical dilemmas, ideally leading to the optimal resolution. But the mere fact of arriving at an insightful conclusion is no guarantee of being able to implement it. The inability to do so may lead to “moral distress,” which has been defined as “one or more negative self-directed emotions or attitudes that arise in response to one’s perceived involvement in a situation that [one] perceives to be morally undesirable” (Campbell, Ulrich, & Grady, 2016).4
The most common reasons for experiencing moral distress are acceding to a family’s request for treatment that is felt to be contrary to the patient’s best interest and continuing treatment that seems to merely be prolonging death (Austin, Saylor, & Finley, 2017). These are specifically cited by nurses as the cause of their moral distress (Ferrell, 2006; Solomon et al., 2005), and also affect resident trainees (Dzeng et al., 2016).
The concept of moral distress was first formulated by Jameton (1984) in the nursing literature of the 1980s. Both the timing and context are understandable. Medical technologies were rapidly expanding, as was the patients’ rights movement. In the not so distant past, there was relatively little one could do to sustain critically ill patients. Now, though, not only is there a wide range of therapeutic options, but patients are also given the choice of whether to accept them or not. The complexity of decision-making has markedly increased, as has the likelihood that a clinician might be called upon to execute a treatment plan that he fundamentally disagrees with.
That the concept of moral distress grew out of the nursing literature is also not surprising. Physicians are logically less susceptible to suffering moral distress because they generally formulate the treatment plans that the team is then tasked with carrying out. For all the talk of interdisciplinary team care, physician instructions are still called “orders.” To be sure, external forces may compromise a physician’s ability to do what he feels he should, but other members of the team may feel even more powerless.
In addition, while physicians—in the intensive care unit (ICU), for instance—check on their patients regularly, they are often caring for a great many patients, and thus individual encounters tend to be relatively brief and extremely focused. An ICU nurse, on the other hand, is generally assigned only one or two patients to care for throughout an entire eight-to twelve-hour shift. This offers a much more intimate vantage point on the patient experience, thus heightening distress if the patient seems to be suffering unduly or unnecessarily. It also creates additional opportunities for deeper and less directed conversation, over the course of which patient hopes and doubts might arise that were not identified in the more focused “rounding” of physicians. This may help explain the limited concordance between physicians’ and nurses’ perception of “futility” in specific clinical cases, leading to different conclusions as to what should be done for a particular patient (Neville et al., 2015).
Given that a major task of palliative care is identifying the patient’s goals and formulating a treatment plan that is consonant with them, staff moral distress may reflect inadequate palliative care participation in patient care. Admittedly, the palliative care team may have been involved but was unable to forge consensus, or the family did not heed their recommendations (Cavinder, 2014). But in many cases palliative care is not consulted until death is imminent (Von Roenn, Voltz, & Serrie, 2013), which may reflect clinicians’ misunderstanding of what palliative care really is. It also depends on the clinician’s sense of when death is actually approaching, which has been shown to often be unreliable (p. 84).
Moral distress not only prevents the patient or family from getting what they need; it also threatens the personal integrity of the professional (Carse, 2013) by undermining integrity and authenticity (McCue, 2010). To know—or at least believe one knows—what the right thing to do is and not be able to do it is disempowering and demoralizing. Not surprisingly, moral distress plays a major role in job dissatisfaction (Cavaliere, Daly, Dowling, & Montgomery, 2010), burnout (Sundin-Huard & Fahy, 1999), and attrition (Corley, 2002). Its effects are long-lasting, creating what some have called “moral residue” (Epstein & Hamric, 2009).
A comprehensive review of steps that can be taken to prevent or alleviate moral distress is outside the scope of this textbook and can be found elsewhere (Rushton, Kaszniak, & Halifax, 2013). From a purely ethical standpoint, though, several points are in order. An important potential cause of moral distress is a lack of complete information about the rationale behind a specific clinical decision and the thoughtfulness of the steps taken in reaching it. Especially in the case of burdensome treatment without likelihood of benefit, staff who did not participate in—or may not even be aware of—the discussions between the clinical team and the family may assume that the burdens were not explained or the minimal likelihood of benefit was not appreciated. Updating staff on the conversations that took place and the rationale for the decision—as well as welcoming dissenting views and eliciting suggestions for moving forward—can help staff feel empowered and thus minimize moral distress. Steps should also be taken to involve staff in those conversations on an ongoing basis, in order to prevent moral distress from developing in the first place.
Another proactive step is the involvement of a palliative care team. This is by no means a panacea, but it does reflect the primary team’s intention of using every tool at their disposal to establish an appropriate treatment plan and to mediate conflict. It can also serve as reassurance to other staff, who may interpret a lack of palliative care involvement as a failure to acknowledge the patient’s true condition or likely prognosis.
Despite such thoughtful steps, moral distress is inevitable in the world of modern medicine, replete as it is with strong opinions and profound needs. Constructive approaches to dealing with moral distress are therefore necessary, which acknowledge its importance, inevitability, and preventive interventions. This includes self-regulation which empowers a clinician to maintain his boundaries and distinguish problems that he is responsible for from those that he is not. Ethical competence is also crucial, which empowers the clinician to thoughtfully analyze dilemmas and constructively work through them (Rushton, 2017). Nurturing such skills fosters the development of “moral resilience,” which refers to “the capacity of an individual to sustain or restore their integrity in response to moral complexity, confusion, distress, or setbacks” (Rushton, 2016).
The last important quality in relationship to moral distress is self-awareness. As noted, one of the primary reasons cited for moral distress is a perception that a certain treatment plan conflicts with the patient’s best interests. But this is clearly a value judgment, which should prompt the person experiencing moral distress to reflect on what values have led him to the conclusion that the patient’s best interests are not being served.
On some very deep level, the problem may not be so much with the team making the “wrong choice” as much as the fact that no good choice exists. This is precisely the dilemma that constitutes much of modern medical ethics: the search for the “least bad option.” There may not, therefore, be any acceptable treatment plan. This is difficult to acknowledge, as it confronts the clinician experiencing moral distress with the inevitability—and some would say universality—of suffering. Framed in the context of palliative care, the specialty tasked with ameliorating suffering in certain cases seems powerless to do so. What the patient endures directly, the staff—particularly the empathic and passionate advocates that people would most want caring for them at critical moments of their lives—experiences vicariously.
Ultimately, clinicians may need to become more comfortable with “sitting with suffering” (Rattner & Berzoff, 2016) and acknowledging their relative powerlessness to ameliorate—let alone eradicate—it. This does not mean one should take suffering lightly or stand idly by when there are available means of minimizing it. But sometimes patients and families make choices that are very difficult for others to accept, yet nevertheless represent very heartfelt values (Macauley, 2011). An example might be refusal of optimal analgesia, in order to achieve some greater goal (p. 214).
In such situations, a clinician would do well to reflect on precisely whose suffering is causing his moral distress: the patient’s, the family’s, or perhaps his own. If the last of these, it is not the patient’s understanding or the team’s process that requires attention but rather the clinician’s own internal state (and preconceptions). By fostering self-awareness as well as self-regulation, clinicians can minimize and navigate moral distress, ideally preventing the burnout and compassion fatigue that often accompanies it.
This represents a fitting conclusion to a textbook that has examined complex situations from a wide variety of viewpoints, striving to offer a coherent and consistent—though certainly not universally shared—perspective throughout. In the ethics of palliative care, precious few clinical dilemmas yield “obvious” answers. In all the others, the clinician is tasked with bringing all of his knowledge, experience, and insight to bear on a fearfully complex situation, ideally engaging with—and risking being changed by—team members in the transdisciplinary model that palliative care strives for. Ultimately, in some situations what may be asked of that clinician is not certainty and success, but rather humility and relinquishment of control, acknowledging that the patient does not wish to do what the clinician believes is “right” for him.
But that in no way minimizes the clinician’s obligation to care for that patient. Quite the contrary, it asks more of the clinician: to bear witness to the patient’s suffering, to enter into it with empathy and self-awareness, and to find healthy ways to cope with his own pain so as to ensure that the patient and family are never abandoned.
American Academy of Hospice and Palliative Medicine. (2015). Aligning graduate medical education with the changing health care landscape. Retrieved from http://aahpm.org/uploads/advocacy/AAHPM_GME_Policy_Statement_and_Recommendations_06_2015.pdf
American Academy of Hospice and Palliative Medicine. (2017). International physician scholarship. Retrieved from http://aahpm.org/scholarships/developing-countries
Beauchamp, T. L., & Childress, J. F. (2009). Principles of biomedical ethics (6th ed.). Ncare and eew York: Oxford University Press.Find this resource:
Bergman v. Chin, No. H205732-1 (Alameda County Ct 2001).Find this resource:
Block, S. D. (2014). Palliative care. In T. Quill & F. G. Miller (Eds.), Palliative care and ethics (pp. 34–46). New York: Oxford.Find this resource:
Bodenheimer, T., & Sinsky, C. (2014). From triple to quadruple aim: Care of the patient requires care of the provider. Ann Fam Med, 12(6), 573–576. doi:10.1370/afm.1713Find this resource:
Brennan, F. (2007). Palliative care as an international human right. J Pain Symptom Manage, 33(5), 494–499. doi:10.1016/j.jpainsymman.2007.02.022Find this resource:
Buckwalter, W., & Turri, J. (2015). Inability and obligation in moral judgment. PLoS One, 10(8), e0136589. doi:10.1371/journal.pone.0136589Find this resource:
Burt, R. A. (1997). The Supreme Court speaks—not assisted suicide but a constitutional right to palliative care. N Engl J Med, 337(17), 1234–1236. doi:10.1056/NEJM199710233371712Find this resource:
Cairdeas International Palliative Care Trust. (2017). Global palliative care. Retrieved from https://cairdeas.org.uk/global-palliative-care
Callahan, D. (1995). Frustrated mastery: The cultural context of death in America. West J Med, 163(3), 226–230.Find this resource:
Campbell, S. M., Ulrich, C. M., & Grady, C. (2016). A broader understanding of moral distress. Am J Bioeth, 16(12), 2–9. doi:10.1080/15265161.2016.1239782Find this resource:
Carse, A. (2013). Moral distress and moral disempowerment. Narrat Inq Bioeth, 3(2), 147–151. doi:10.1353/nib.2013.0028Find this resource:
Casarett, D., Shreve, S., Luhrs, C., Lorenz, K., Smith, D., De Sousa, M., & Richardson, D. (2010). Measuring families’ perceptions of care across a health care system: Preliminary experience with the Family Assessment of Treatment at End of Life Short form (FATE-S). J Pain Symptom Manage, 40(6), 801–809. doi:10.1016/j.jpainsymman.2010.03.019Find this resource:
Cassel, J. B., Kerr, K. M., Kalman, N. S., & Smith, T. J. (2015). The business case for palliative care: Translating research into program development in the U.S. J Pain Symptom Manage, 50(6), 741–749. doi:10.1016/j.jpainsymman.2015.06.013Find this resource:
Cavaliere, T. A., Daly, B., Dowling, D., & Montgomery, K. (2010). Moral distress in neonatal intensive care unit RNs. Adv Neonatal Care, 10(3), 145–156. doi:10.1097/ANC.0b013e3181dd6c48Find this resource:
Cavinder, C. (2014). The relationship between providing neonatal palliative care and nurses’ moral distress: An integrative review. Adv Neonatal Care, 14(5), 322–328. doi:10.1097/ANC.0000000000000100Find this resource:
Center to Advance Palliative Care. (2014). Palliative care facts and stats. Retrieved from https://media.capc.org/filer_public/68/bc/68bc93c7-14ad-4741-9830-8691729618d0/capc_press-kit.pdf
Center to Advance Palliative Care. (2015). America’s care of serious illness. Retrieved from https://reportcard.capc.org/wp-content/uploads/2015/08/CAPC-Report-Card-2015.pdf
Centers for Medicare and Medicaid Services. (2015). Medicare benefit policy manual. Retrieved from https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/bp102c09.pdf
Chang, C. (2013). Before I die. New York: St. Martin’s Griffin.Find this resource:
Corley, M. C. (2002). Nurse moral distress: A proposed theory and research agenda. Nurs Ethics, 9(6), 636–650. doi:10.1191/0969733002ne557oaFind this resource:
Corn, B. W. (2009). Ending end-of-life phobia—a prescription for enlightened health care reform. N Engl J Med, 361(27), e63. doi:10.1056/NEJMp0909740Find this resource:
Council on Scientific Affairs. (1987). Results and implications of the AMA-APA Physician Mortality Project: Stage II. JAMA, 257(21), 2949–2953.Find this resource:
Davis, F. A. (1988). Medicare hospice benefit: Early program experiences. Health Care Financ Rev, 9(4), 99–111.Find this resource:
Dresser, R. (2016). Medicare and advance planning: The importance of context. Hastings Cent Rep, 46(3), 5–6. doi:10.1002/hast.583Find this resource:
Dzeng, E., Colaianni, A., Roland, M., Levine, D., Kelly, M. P., Barclay, S., & Smith, T. J. (2016). Moral distress amongst american physician trainees regarding futile treatments at the end of life: A qualitative study. J Gen Intern Med, 31(1), 93–99. doi:10.1007/s11606-015-3505-1Find this resource:
Federation of State Medical Boards. (2017). Continuing medical education. Retrieved from https://www.fsmb.org/Media/Default/PDF/FSMB/Advocacy/GRPOL_CME_Overview_by_State.pdf
Ferrell, B. R. (2006). Understanding the moral distress of nurses witnessing medically futile care. Oncol Nurs Forum, 33(5), 922–930. doi:10.1188/06.ONF.922-930Find this resource:
Figley, C. (1983). Catastrophes: An overview of family reaction. In C. Figley & A. McCubbin (Eds.), Stress and the family (vol. 11, pp. 3–20). New York: Brunner/Mazel.Find this resource:
Fisher, M. (2012, June 28). Here’s a map of the countries that provide universal health care (America’s still not on it). The Atlantic.Find this resource:
Frisina, P. G., Borod, J. C., & Lepore, S. J. (2004). A meta-analysis of the effects of written emotional disclosure on the health outcomes of clinical populations. J Nerv Ment Dis, 192(9), 629–634.Find this resource:
Gawande, A. (2014). Being mortal: Medicine and what matters in the end (1st ed.). Toronto: Doubleday.Find this resource:
Harrison, R. L., & Westwood, M. J. (2009). Preventing vicarious traumatization of mental health therapists: Identifying protective practices. Psychotherapy (Chic), 46(2), 203–219. doi:10.1037/a0016081Find this resource:
Hauser, J. M., Preodor, M., Roman, E., Jarvis, D. M., & Emanuel, L. (2015). The evolution and dissemination of the education in palliative and end-of-life care program. J Palliat Med, 18(9), 765–770. doi:10.1089/jpm.2014.0396Find this resource:
Hill, R. G. Jr., Sears, L. M., & Melanson, S. W. (2013). 4000 clicks: A productivity analysis of electronic medical records in a community hospital ED. Am J Emerg Med, 31(11), 1591–1594. doi:10.1016/j.ajem.2013.06.028Find this resource:
Institute for Healthcare Improvement. (2017). Triple aim for health care. Retrieved from http://www.ihi.org/Topics/TripleAim/Pages/default.aspx
Jameton, A. (1984). Nursing practice: The ethical issues. Englewood Cliffs, NJ: Prentice Hall.Find this resource:
Joint Commission. (2012). Clarification: Eligibility for advanced certification for palliative care. Jt Comm Perspect, 32(2), 4.Find this resource:
Kamal, A. H., Bull, J., Wolf, S., Samsa, G. P., Swetz, K. M., Myers, E. R., . . . Abernethy, A. P. (2016). Characterizing the hospice and palliative care workforce in the U.S.: Clinician demographics and professional responsibilities. J Pain Symptom Manage, 51(3), 597–603. doi:10.1016/j.jpainsymman.2015.10.016Find this resource:
Kearney, M. K., Weininger, R. B., Vachon, M. L., Harrison, R. L., & Mount, B. M. (2009). Self-care of physicians caring for patients at the end of life: “Being connected . . . a key to my survival.” JAMA, 301(11), 1155–1164. doi:10.1001/jama.2009.352Find this resource:
Krakauer, R., Spettell, C. M., Reisman, L., & Wade, M. J. (2009). Opportunities to improve the quality of care for advanced illness. Health Aff (Millwood), 28(5), 1357–1359. doi:10.1377/hlthaff.28.5.1357Find this resource:
Kübler-Ross, E. (1969). On death and dying. New York: Macmillan.Find this resource:
Lamas, D., & Rosenbaum, L. (2012). Painful inequities—palliative care in developing countries. N Engl J Med, 366(3), 199–201. doi:10.1056/NEJMp1113622Find this resource:
Lupu, D., & American Academy of Hospice & Palliative Medicine Workforce Task Force. (2010). Estimate of current hospice and palliative medicine physician workforce shortage. J Pain Symptom Manage, 40(6), 899–911. doi:10.1016/j.jpainsymman.2010.07.004Find this resource:
MD Anderson Cancer Center. (2016). Making cancer history. Retrieved from http://makingcancerhistory.com/home.html
Macauley, R. (2011). Patients who make “wrong” choices. J Palliat Med, 14(1), 13–16. doi:10.1089/jpm.2010.0318Find this resource:
Manjiani, D., Paul, D. B., Kunnumpurath, S., Kaye, A. D., & Vadivelu, N. (2014). Availability and utilization of opioids for pain management: Global issues. Ochsner J, 14(2), 208–215.Find this resource:
Mata, D. A., Ramos, M. A., Bansal, N., Khan, R., Guille, C., Di Angelantonio, E., & Sen, S. (2015). Prevalence of depression and depressive symptoms among resident physicians: A systematic review and meta-analysis. JAMA, 314(22), 2373–2383. doi:10.1001/jama.2015.15845Find this resource:
McCue, C. (2010). Using the AACN framework to alleviate moral distress. Online J Issues Nurs, 16(1), 9. doi:10.3912/OJIN.Vol16No01PPT02Find this resource:
Meier, D. E. (2010). The development, status, and future palliative care. In D. E. Meier, S. L. Isaacs, & R. G. Hughes (Eds.), Palliative care: Transforming the care of serious illness (1st ed., pp. 3–75). San Francisco: Jossey-Bass.Find this resource:
Melamed, S., Shirom, A., Toker, S., Berliner, S., & Shapira, I. (2006). Burnout and risk of cardiovascular disease: Evidence, possible causal paths, and promising research directions. Psychol Bull, 132(3), 327–353. doi:10.1037/0033-2909.132.3.327Find this resource:
Morrison, R. S., Dietrich, J., Ladwig, S., Quill, T., Sacco, J., Tangeman, J., & Meier, D. E. (2011). Palliative care consultation teams cut hospital costs for Medicaid beneficiaries. Health Aff (Millwood), 30(3), 454–463. doi:10.1377/hlthaff.2010.0929Find this resource:
Moyers, B. (2000). On our own terms: Moyers on dying [DVD]. Athena.Find this resource:
National Hospice and Palliative Care Organization. (2015). NHPCO’s facts and figures. Retrieved from https://www.nhpco.org/sites/default/files/public/Statistics_Research/2014_Facts_Figures.pdf
Nelson, R. (2017). Discussing death over coffee and cake: The emergence of the death cafe. Am J Nurs, 117(2), 18–19. doi:10.1097/01.NAJ.0000512293.80522.67Find this resource:
Neville, T. H., Wiley, J. F., Yamamoto, M. C., Flitcraft, M., Anderson, B., Curtis, J. R., & Wenger, N. S. (2015). Concordance of nurses and physicians on whether critical care patients are receiving futile treatment. Am J Crit Care, 24(5), 403–410. doi:10.4037/ajcc2015476Find this resource:
O’Mahony, S., Ziadni, M., Hoerger, M., Levine, S., Baron, A., & Gerhart, J. (2017). Compassion fatigue among palliative care clinicians. Am J Hosp Palliat Care, 1049909117701695. doi:10.1177/1049909117701695Find this resource:
Palliative Care and Hospice Education and Training Act. (2015). Retrieved from https://www.congress.gov/bill/114th-congress/house-bill/3119
Politifact. (2009). Retrieved from http://www.politifact.com/truth-o-meter/statements/2009/jul/23/betsy-mccaughey/mccaughey-claims-end-life-counseling-will-be-requi/
Powderly, K. E. (2003). Ethical issues for risk managers. In F. Kavaler & A. D. Spiegel (Eds.), Risk management in health care institutions (2nd ed.). Sudbury, MA: Jones and Bartlett.Find this resource:
Quill, T. E., & Abernethy, A. P. (2013). Generalist plus specialist palliative care—creating a more sustainable model. N Engl J Med, 368(13), 1173–1175. doi:10.1056/NEJMp1215620Find this resource:
Rabinowitz, S., Kushnir, T., & Ribak, J. (1996). Preventing burnout: Increasing professional self efficacy in primary care nurses in a Balint Group. AAOHN J, 44(1), 28–32.Find this resource:
Radbruch, L., Payne, S., de Lima, L., & Lohmann, D. (2013). The Lisbon challenge: Acknowledging palliative care as a human right. J Palliat Med, 16(3), 301–304. doi:10.1089/jpm.2012.0394Find this resource:
Rajagopal, M. R. (2014). The pain project.Find this resource:
Rajagopal, M. R., & Joranson, D. E. (2007). India: opioid availability: An update. J Pain Symptom Manage, 33(5), 615–622. doi:10.1016/j.jpainsymman.2007.02.028Find this resource:
Randall, F., & Downie, R. S. (1999). Palliative care ethics: A companion for all specialties (2nd ed.). New York: Oxford University Press.Find this resource:
Rattner, M., & Berzoff, J. (2016). Rethinking suffering: Allowing for suffering that is intrinsic at end of life. J Soc Work End Life Palliat Care, 12(3), 240–258. doi:10.1080/15524256.2016.1200520Find this resource:
Rotenstein, L. S., Ramos, M. A., Torre, M., Segal, J. B., Peluso, M. J., Guille, C., . . . Mata, D. A. (2016). Prevalence of depression, depressive symptoms, and suicidal ideation among medical students: A systematic review and meta-analysis. JAMA, 316(21), 2214–2236. doi:10.1001/jama.2016.17324Find this resource:
Rushton, C. H. (2016). Moral resilience: A capacity for navigating moral distress in critical care. AACN Adv Crit Care, 27(1), 111–119. doi:10.4037/aacnacc2016275Find this resource:
Rushton, C. H. (2017). Cultivating moral resilience. Am J Nurs, 117(2 Suppl. 1), S11–S15. doi:10.1097/01.NAJ.0000512205.93596.00Find this resource:
Rushton, C. H., Kaszniak, A. W., & Halifax, J. S. (2013). Addressing moral distress: Application of a framework to palliative care practice. J Palliat Med, 16(9), 1080–1088. doi:10.1089/jpm.2013.0105Find this resource:
Shanafelt, T. D., Hasan, O., Dyrbye, L. N., Sinsky, C., Satele, D., Sloan, J., & West, C. P. (2015). Changes in burnout and satisfaction with work-life balance in physicians and the general US working population between 2011 and 2014. Mayo Clin Proc, 90(12), 1600–1613. doi:10.1016/j.mayocp.2015.08.023Find this resource:
Shanafelt, T. D., West, C., Zhao, X., Novotny, P., Kolars, J., Habermann, T., & Sloan, J. (2005). Relationship between increased personal well-being and enhanced empathy among internal medicine residents. J Gen Intern Med, 20(7), 559–564. doi:10.1111/j.1525-1497.2005.0108.xFind this resource:
Solomon, M. Z., Sellers, D. E., Heller, K. S., Dokken, D. L., Levetown, M., Rushton, C., . . . Fleischman, A. R. (2005). New and lingering controversies in pediatric end-of-life care. Pediatrics, 116(4), 872–883. doi:10.1542/peds.2004-0905Find this resource:
Sotile, W. M., & Sotile, M. O. (1996). The medical marriage: A couple’s survival guide. Secaucus, NJ: Carol Publishing Group.Find this resource:
Spettell, C. M., Rawlins, W. S., Krakauer, R., Fernandes, J., Breton, M. E., Gowdy, W., . . . Brennan, T. A. (2009). A comprehensive case management program to improve palliative care. J Palliat Med, 12(9), 827–832. doi:10.1089/jpm.2009.0089Find this resource:
Sundin-Huard, D., & Fahy, K. (1999). Moral distress, advocacy and burnout: Theorizing the relationships. Int J Nurs Pract, 5(1), 8–13.Find this resource:
SUPPORT Principal Investigators. (1995). A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA, 274(20), 1591–1598.Find this resource:
United Nations. (1972). Single convention on narcotic drugs. Retrieved from https://www.unodc.org/pdf/convention_1961_en.pdf
Voltaire. (1923). L’œuvre de Voltaire. Paris: Bibliothèque des curieux.Find this resource:
Von Roenn, J. H., Voltz, R., & Serrie, A. (2013). Barriers and approaches to the successful integration of palliative care and oncology practice. J Natl Compr Canc Netw, 11(Suppl. 1), S11–S16.Find this resource:
World Health Organization. (2004). Palliative care: The solid facts. Retrieved from http://www.euro.who.int/__data/assets/pdf_file/0003/98418/E82931.pdfFind this resource:
Worldwide Palliative Care Alliance. (2014). Global atlas of palliative care at the end of life. Retrieved from http://www.who.int/nmh/Global_Atlas_of_Palliative_Care.pdf
1. This section uses the United States as the primary example of palliative care in the developed world, given the emphasis on American law and culture throughout the text. Some areas where the American context does not extend to other developed nations are noted.
2. A misperception that, sadly, persists in some quarters.
3. The situation is fundamentally different for children, as the Affordable Care Act explicitly permits children with a prognosis of less than six months to receive disease-directed treatment (Lindley, 2011). Several states have also applied for Medicaid waivers to permit use of hospice funds for pediatric patients who may not be in the last six months of life (Dabbs, Butterworth, & Hall, 2007).
4. It is important to note that while “moral distress” is often used to refer to moral uncertainty (i.e., lack of clarity as to what is the best course of action), this is not what the term actually means.