This textbook has addressed a variety of specific topics (such as physician-assisted dying and palliative sedation) and particular contexts (such as the prenatal period and various developmental stages of childhood). There are, however, core concepts that pervade and influence every aspect of the practice of palliative care. Precisely because they influence the choices patients and families make, they should not be overlooked or taken for granted. Quite the contrary, they demand thoughtful analysis in order to best equip patients—as well as the families who love them and the clinicians who care for them—to make the best decisions.
The first core concept is communication, which is inherently a relational process and thus is complex and full of potential pitfalls. The words the physician uses, the concepts she chooses to disclose and emphasize, and the way she responds to patient inquiries all significantly impact the treatment plan. At the same time, what the patient understands is more relevant than what the physician says (or intends to say). Unless the patient has an accurate understanding of the medical situation and the relevant options, he cannot make a decision based on his goals and values.
Why a patient is making a particular decision is just as important as the decision he has made. When it comes to one’s own health, choices generally are not made based on a detached analysis of medical facts. Background, beliefs, and feelings play a crucial role, which is the reason physicians ought to inquire about a patient’s goals and fears (Bernacki & Block, 2014). These often extend beyond the patient to the patient’s family and broader community, who might hold profound beliefs about how much information is shared and what should be done with it. These beliefs might reflect cultural mores or values, as well as spiritual convictions and religious obligations.
One might question whether communication, culture, and spirituality are “ethical” issues. Yet that question would never arise with regard to patient autonomy, the obligation of informed consent, or the right to refuse treatment. The foundation of all of these are the patient’s goals, which are often profoundly influenced by his view of the world and his place in it (i.e., his spirituality), as well as the culture that formed him. Physicians thus have an ethical obligation to understand and respect the patient’s values, which may differ from the physician’s own. Navigating this complex terrain of communication, culture, and spirituality requires significant nuance.
Role of Communication in Palliative Care
The term “palliative” comes from the Latin word pallium—which means “cloak”—and for many years palliative care was more about cloaking the nature of the patient’s condition rather than the symptoms associated with it (Randall & Downie, 2006). Patients were generally not informed of their diagnosis or prognosis, especially if it was serious (Field & Copp, 1999). As Glaser and Strauss wrote in 1965, “[A]merican physicians ordinarily do not tell patients outright that death is probable or inevitable. . . . [F]amilies also tend to guard the secret.”
A combination of court decisions, rights movements, fragmentation within the medical profession, and well-publicized lapses in research ethics all led to a shift from parentalism to autonomy (p. 5). Instead of withholding the truth from patients, physicians began to inform patients of their condition, and rather than independently determining the plan of care, physicians would seek the patient’s consent for recommended treatments.
As the years went on, though, the pendulum may have swung too far: rather than feeling no obligation to disclose a patient’s diagnosis, physicians often viewed any failure to disclose all relevant details (even at the request of the patient or family) as unethical. Out of fear of infringing on the patient’s autonomy, physicians would often provide extensive descriptions of various treatment options that frequently entailed multiple combinations and permutations. Written “consent forms” came to take the place of thoughtful conversations, even though these forms are often written at a college level (Hopper, TenHave, Tully, & Hall, 1998), beyond the capabilities of most patients.
Lost among the details was confirmation that the patient truly understood the situation he was facing (Braddock, Edwards, Hasenberg, Laidley, & Levinson, 1999). This is particularly true for patients with diminished health literacy—which the Institute of Medicine defines as “the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions” (Nielsen-Bohlman & Institute of Medicine Committee on Health Literacy, 2004)—for whom even familiar terms such as “cardiopulmonary resuscitation” may be misunderstood. Such diminished health literacy is a strong predictor for poor health outcomes (Baker, Parker, Williams, Clark, & Nurss, 1997), as patients manifest less understanding of their disease and ability to care for themselves (Gazmararian, Williams, Peel, & Baker, 2003).
This is particularly a problem for patients with limited English proficiency, an increasingly common occurrence in a multicultural society. Language barriers create ethical issues all their own, as it is often more convenient to ask a family member—or an available staff person who happens to speak the patient’s language—to interpret. This can be detrimental, however. Staff who are not trained as interpreters may lack the skills to function as an intermediary between the medical team and the patient, as medical interpretation involves far more than simply shifting words from one language to another without regard for nuance or cultural impact. Relying on a family member to interpret puts that person in an impossible position, balancing the need of the patient to understand with the family member’s own emotions upon hearing information and then having to relay it. (There have been reports of young children being asked to interpret for a physician communicating a serious diagnosis to that child’s parent.) For all these reasons, patients and their families should be offered language services by trained interpreters (Wilson-Stronks & Galvez, 2017).
But even where health literacy and English proficiency are not barriers, communication in palliative care remains a challenge by virtue of its complexity and nuance. The subject matter is literally life and death, involving clinically complex and emotionally wrenching decisions. Physicians often struggle with these topics, especially those who have not received specific training in communication (Ha & Longnecker, 2010). Palliative care teams are therefore frequently consulted to assist in optimizing communication, overcoming relational obstacles, and creating a forum for open dialogue. Some have gone so far as to proclaim the family meeting as the “procedure of palliative care,” as so much of palliative care stems from accurate understanding and appropriate goal-setting (Cahill, Lobb, Sanderson, & Phillips, 2016).
Even once disclosure of relevant information became a standard expectation, there remained exceptions. The one that is universally accepted is patient waiver, whereby “a medical doctor need not make disclosures of risks when the patient requests that he not be so informed” (Cobbs v. Grant, 1972). The physician should, of course, verify that the patient is indeed waiving his right to full information and also sensitively inquire as to the reason for doing so (which might reveal previously unrecognized areas of anxiety or concern). The physician should document in the chart precisely what the patient waived his right to, while continuing to revisit the matter, since the patient always has the right to rescind the waiver and learn whatever he wants to know.
For many years, another exception to the obligation of disclosure was therapeutic privilege. This refers to a situation where the physician believes that “disclosure poses such a serious psychological threat of detriment to the patient as to be medically contraindicated” (Judicial Council of the American Medical Association, 1984). Some state laws interpreted this narrowly as referring to information that would render the patient incompetent, which itself would preclude the possibility of offering informed consent or refusal. Other states took a broader view which encompassed anything considered “counter-therapeutic,” seeming to permit nondisclosure in practically any situation.
While once frequently practiced and initially endorsed by the American Medical Association, as patient autonomy became the cornerstone of American bioethics, the notion of therapeutic privilege fell into disfavor. Justice Byron White famously observed: “Informed consent provisions . . . may produce some anxiety in the patient and influence her in her choice. This is in fact their reason for existence, and . . . it is an entirely salutary reason” (Thornburgh v. American College of Obstetricians, 1986). Recent revisions of the American Medical Association (2010–2011) Code of Ethics have therefore deemed the practice “ethically unacceptable.”
Less technical than “invoking therapeutic privilege,” a more human response to disclosure is to withhold information out of concern that candor about a patient’s diagnosis or prognosis will “take away hope.” Families often—as in this section’s case study—want to protect their loved one from something that might sap his fighting spirit or taint his final days.
This approach is also flawed, for studies have shown that frank prognostic disclosure not only provides a patient with a more realistic sense of his life expectancy but does not cause increased sadness or anxiety (Enzinger, Zhang, Schrag, & Prigerson, 2015). This has also been shown in the pediatric population (Mack et al., 2007), reinforcing the concept that patients and their families appreciate compassionate candor (and also often know more than physicians give them credit for). These studies underscore the multifaceted nature of hope which encompasses more than cure and long-term survival (Feudtner, 2009). Indeed, one of the primary tasks of palliative care is “reframing” hope in terms that are achievable, such as mending relationships or experiencing a peaceful death. As Robert Frost once said, “Hope does not lie in a way out, but in a way through.”
Given medicine’s history of withholding information from patients, an obvious remedy would be to strive for full and immediate disclosure in every case, to avoid even the appearance of parentalism. This, however, is frequently short-sighted, because some information—especially regarding treatment options—may clearly be inconsistent with the patient’s stated goals. For instance, if a patient—upon being informed that he has cancer—expresses a desire to do everything possible to “beat it” because life is that precious to him, it may not be necessary at that time to explore what a purely comfort-directed plan of care might look like. By the same token, a seriously ill patient whose quality of life (by his own estimation) is extremely poor and expresses a desire to simply be kept comfortable and live out his remaining days in peace does not require an in-depth discussion of the risks and benefits of CPR. This would be at best a waste of his limited time and at worst counterproductive in terms of the patient’s emotional well-being as well as the physician-patient relationship. Some have described this approach as being “economical with the truth” (Randall & Downie, 2006).
Even when information is relevant to a patient’s condition or treatment options, disclosure need not occur all at once. To present all possible information may ignore the emotional impact of that information. It is often said that when a patient hears the word “cancer” for the first time, he is unable to hear—or, at least, remember—anything else that is said in that particular conversation. For this reason, it may be advisable to use a “staged” model of informed consent, whereby information is parceled out at appropriate times and contexts (Wear, 1998).
So rather than “protecting” the patient from the truth on the one hand and engaging in an “information dump” (Aulisio, 2016) on the other, a more nuanced response to a family’s request for nondisclosure is called for. The patient in this section’s case study clearly is not requesting a waiver, and it would not be practical to inquire whether he would seek one in relation to his terminal diagnosis. (A question along the lines of “If you had cancer, would you like to know?” would itself be revelatory.) The patient has also not communicated clear goals of care which might render certain treatment options irrelevant.
But neither is the physician seeking to withhold information based on a parentalistic sense of therapeutic privilege. It is the patient’s daughters—who know the patient well and clearly care for him—who are seeking to safeguard his sense of hope, introducing a further layer of complexity into the relationship of hope and prognostic disclosure.
So rather than responding with an indignant defense of the primacy of patient autonomy, it is advisable to seek greater understanding of the family’s reason for requesting nondisclosure (Hallenbeck & Arnold, 2007). The medical team should empathize with the family’s desire to protect the patient at a time of extreme vulnerability and express their own views as simply that: opinions and the beginning of a deeper dialogue. This would allow the team to sensitively inquire whether the family’s request stems from a desire to shield the patient from demoralizing information—an understandable if perhaps misguided motive—or from previous requests the patient may have made to not be informed about his health (or family norms to that effect) (Hallenbeck, 2003).
The latter represents the best rationale for nondisclosure. Far from being a violation of patient autonomy, not informing the patient of his diagnosis could rightly be considered an expression of respect for that autonomy (i.e., the patient’s right not to know). To be sure, the clinician needs sufficient evidence to reach that conclusion, and nondisclosure should never stem from the clinician’s human reluctance to share bad news. But previous statements could represent something of an “implicit waiver” of full disclosure, albeit one that still requires thoughtful exploration in order to confirm.
The most reliable source of this information is the patient himself, through sensitive open-ended inquiry. The medical team could thoughtfully inquire as to his understanding of his medical condition, which might reveal a deeper grasp than previously suspected. (This would itself largely resolve the perceived ethical dilemma.) If the patient was unaware of his condition, the team might inquire as to his preferred manner of communication between the medical team and either him or his family. Without divulging information the patient may not welcome, this allows the physician to confirm just how much information the patient wishes to know.
Several possibilities may follow from this approach. The patient may request full disclosure, which the physician may then in good conscience provide. Alternatively, the patient may already understand on some level what is happening to him but prefer not to bring it out into the open. Glaser and Strauss (1965) refer to this as “closed awareness.” And if the patient reiterates the family’s request to provide information to them directly—which they can choose to relay to the patient, or not—then that is the patient’s wish, and honoring it also honors his autonomy.
This, then, represents a third legitimate reason for nondisclosure, in addition to explicit waiver and clear incompatibility with the patient’s expressed treatment goals: inconsistency with the patient’s values. Full disclosure to the patient may be a bedrock principle of American bioethics, but not every patient wants to know everything about his medical condition or treatment options. To be sure, a thoughtful exploration of the situation is required before reaching this conclusion, in order to ensure that failure to disclose is not a reflection of the physician’s own reluctance or external pressures from a family whose values the patient does not share. But for a patient who truly would not wish to know about his prognosis, not directly informing him—after the thoughtful exploration described earlier—better respects his autonomy than foisting unwanted information upon him.
Role of Culture in Palliative Care
Culture—which has been defined as “that set of learned values, beliefs, customs, and behaviors that is shared by a group of interacting individuals” (Ruhnke et al., 2000)—shapes and defines one’s beliefs about and perceptions of the world. Illness and approaching death are two areas where cultural beliefs and customs play an extremely important role. For this reason, “care at the end of life should recognize, assess, and address the psychological, social, spiritual/religious issues, and cultural taboos realizing that different cultures may require significantly different approaches” (American Academy of Family Physicians, 2003). Culture is such an important consideration in palliative care that the National Consensus Project established a distinct domain for it (Colby, Dahlin, Lantos, Carney, & Christopher, 2010).
Any discussion of culture needs to find a balance between two extremes. One extreme is stereotyping, where it is assumed that one’s cultural or ethnic background determines one’s beliefs. For instance, it would be insensitive and inaccurate to assert that every Latino believes a certain way or every Japanese patient has the same values. To do so would reduce culture to “a series of isolated acontextual beliefs or practices characterized by ethnic origin” (Kagawa-Singer & Blackhall, 2001). Just because it is more likely, for instance, that a patient of Chinese descent might feel a certain way, does not meant that every patient of Chinese descent feels that way. Further, not every patient of Chinese descent is equivalent; the sociocultural forces present in Hong Kong, Taiwan, and mainland China are distinct. Studies have shown, for instance, that patients in Hong Kong value autonomy as highly as those in the United States (Fielding & Hung, 1996), while those from mainland China generally do not. The impact of culture must, therefore, be taken in context.
The other extreme—which is equally misguided—is to completely ignore the role of culture in the name of political correctness. One might be so concerned about stereotyping that culture is overlooked entirely, leading to a disregard for “culture’s fundamental function of giving meaning to life and of providing guidelines for living” (Kagawa-Singer & Blackhall, 2001). To ignore the fact that a patient is a recent immigrant from another part of the world limits one’s ability to optimally respect and care for that patient.
For the purposes of this discussion, assertions about beliefs held by certain cultural groups should be viewed not as blanket stereotypes but rather as empirically based observations about beliefs which have been shown to be common in those groups. Of course, each patient and family should be queried as to the degree to which they adhere to that belief. In that respect, culture represents not a conclusion but rather a jumping-off point for discussion, after which targeted inquiries can be made. As Kagawa-Singer and Blackhall (2001) quote a patient saying:
If you don’t know a person, you got to find out his identity, go where he lives, where he goes, where he was born, who’s in his family. And he’s got to open up, and tell you these things. Because the more you know about this person, his family, then that’ll make you know more about you.
Cultural differences lead to diversity of opinion in many aspects of health care, including the balance of individualism versus collectivism, the definition of “family,” assignment of gender roles, communication patterns, and views of physicians, suffering, and the afterlife (Searight & Gafford, 2005). Three primary areas where culture significantly affects palliative care—with potential resulting ethical dilemmas—involve communication of prognosis, the locus of decision-making, and attitudes toward advance care planning (ACP) and end-of-life (EOL) care.
Communication of Prognosis
The ethical imperative—with some exceptions, as previously noted—to disclose to the patient her diagnosis is a very American notion. In many other countries, it is assumed that the family will definitely be informed of the diagnosis, with some debate about whether the patient should be informed too (Fallowfield, Jenkins, & Beveridge, 2002).
If the patient is informed, the manner of disclosure demands sensitivity, as culture-specific connotations of specific diagnoses can also lead to misunderstandings. Certain terms (like “cancer”) may be taken as death sentences, even if the physician is quick to note that treatments are available. For a patient who holds such cultural beliefs, being informed that she has cancer could therefore be misleading because of the personal and cultural overlays of that term. In such cultures—which tend to prioritize beneficence over individual autonomy—preferred terminology might include “growth,” “mass,” or “blood disease.” Examples of these cultures include African, Japanese, and Native American (Loue & Sajatovic, 2012).
This example highlights the fact that the significance of one’s diagnosis is what it means for that patient going forward in terms of life expectancy, quality of life, and treatment options. The American emphasis on autonomy logically carries over from disclosure of diagnosis to that of prognosis, which necessarily impacts the treatment plan. Indeed, this is the basis of ACP, because in the absence of prognostic awareness a patient and her family cannot plan for the future and make informed treatment decisions.
With regard to prognosis, some cultures emphasize non-maleficence over autonomy. This applies not only to refraining from inflicting physical harm in the context of medical procedures but also psychic or spiritual harm. The mere mention of “death” may be viewed as inherently harmful, perhaps because such discussions burden a patient or are thought to increase the likelihood that negative events will come to pass (Holland, Geary, Marchini, & Tross, 1987). Some patients of Chinese descent, for example, believe that the elderly are vulnerable to being upset by bad news (Carrese & Rhodes, 1995; Yeo & Hikuyeda, 2000). Such patients, it is thought, should not be burdened unnecessarily by discussion of unwanted outcomes, which helps explain why people who hold this view are reluctant to complete advance directives (ADs, p. 99). In these situations, nonverbal communication assumes great importance, both to relate ideas that words are felt inappropriate and also to allow the patient to “save face” by not being confronted with information she would prefer not to discuss, or even be aware of. Other cultures where disclosure might be deemed harmful include Latino, Pakistani, Bosnian, Italian, and Filipino (Searight & Gafford, 2005).
In order to address prognosis in a culturally sensitive way, it is imperative that the team recognize the patient and family’s cultural underpinnings of illness and disease. The most direct way of accomplishing this is to inquire of the patient and family about specific beliefs they may hold which would impact how they process medical information and decisions. So rather than feeling an ethical obligation to clearly state the technical diagnosis (such as “cancer”), the team’s emphasis should be on expressing a concept that accurately reflects—in the patient’s own language and understanding—what the patient’s likely future is. A delicate balance may have to be struck between accommodating the patient and family’s cultural needs on the one hand and the professional’s obligation to provide information that is necessary to make important medical decisions on the other.
Locus of Decision-Making
As stated earlier (p. 4), for most of the history of Western medicine the locus of decision-making was the physician. Over the course of the twentieth century in the United States, that locus shifted to the patient, although recently there has been a renewed quest for balance in the form of “shared decision-making.” In some cultures—such as much of eastern Europe—this shift has not occurred, leaving the physician as the primary decision-maker. Patients and families may look to the physician to make treatment decisions based on beneficence, not expecting to be integrally involved in the process. Indeed, for the physician to expect a patient or family to make a specific treatment decision—especially in the absence of a recommendation—would be viewed as unusual at best and unprofessional at worst.
In other cultures a different locus of decision-making exists: the family. To be sure, family is important to patients in every culture because the web of interrelationships impacts one’s sense of self, as well as the decisions one makes. Mount (1985) describes the family as a “mobile”: removal of any one element (even a small one) impacts everything else. But in some cultures—such as Korean and Mexican-American—the family is not merely involved in decision-making for a patient; they are responsible for it. This might be accomplished as a group or by one family member whom the rest defer to, which is often the patriarch (Blackhall, Murphy, Frank, Michel, & Azen, 1995). In that context, it would be viewed as disrespectful to direct information and queries to anyone other than the culturally appropriate decision-maker. And attempts to speak with the patient alone—often done out of good intentions to safeguard the patient’s “autonomy” from family influence—may be unwelcome.
In still other cultures—such as many in Asia—there is a balance between physician and family. The decision is made jointly, in a more robust version of “shared decision-making” than is often practiced in the United States, despite the frequent use of that term (Moazam, 2000).
Given the diversity in the locus of decision-making, it is important for clinicians to determine how the patient wants decisions to be made. Just as in the case of diagnosis where the appropriate question to the patient might be, “How much do you want to know about your health condition?,” in this case the follow-up question might be, “How would you like decisions about your health care to be made?”
Recognizing the importance of the decisions to be made, the patient may request that someone from her family be present, which could raise concerns for potential coercion. If so, the team might reassure the patient that the conversation is not so much about what medical decisions need to be made but rather how to make those decisions. The patient may then be willing to meet in private, but if this is not possible, the team will need to thoughtfully evaluate the degree—if any—to which the patient may be making decisions for the benefit of others rather than based on her own value system.
Ultimately, the patient may request that she make her own decisions or defer to another person (with varying degrees of continued involvement). The latter would represent a form a waiver of informed consent for future treatment and is already a component of many AD forms which allow a patient to defer decisional authority to her agent immediately upon signing, without requiring a loss of decision-making capacity (DMC, Vermont Ethics Network, 2017).
Potentially more problematic would be a patient’s request that the physician make subsequent medical decisions, as this runs contrary to the predominant American model of patient autonomy. Even waiver of informed consent—which may also be unsettling—still establishes a “check-and-balance” between the physician’s primary focus on the patient’s best interests and the surrogate’s sense of the patient’s goals (stemming as they might from cultural values). But when the patient completely defers the decision itself to the physician, the physician may feel that he holds undue power, especially as the classic check-and-balance of beneficence and autonomy is no longer in place.
Faced with such a request, the physician should specifically confirm with the patient that she wants the physician to make decisions for her and that this is not merely polite deference or a feeling of her voice not being heard. (This should be clearly documented in the chart as well.) Alternatives—such as naming a surrogate decision-maker or deferring to one’s family—should be explored.
But if the patient is resolute in her wish that the physician decide, this is not necessarily wrong. Just because the societal pendulum in the United States has swung all the way to the side of “radical autonomy” does not mean that this is every patient’s preference. Rather than doing simply what he feels is best, however, the physician could take time to explore the patient’s overall goals (unrelated to the medical procedure). Just as one would with a patient who does want to make her own decisions, identifying the patient’s hopes and fears—as well as what she’s willing to go through to achieve her goals and the level of family involvement she wants (Bernacki & Block, 2014)—can lead to a thoughtful recommendation. Although in this case the recommendation will automatically become the treatment plan, the fact remains that it is patient-centered and reflective of the patient’s values.
It would actually be inconsistent with patient- and family-centered care to require the patient (or family) to explicitly consent to the proposed plan if she does not wish to. One might sensitively note that the patient is free to disagree with the recommendation, essentially seeking informed assent (p. 382) although in a much less clear-cut situation than this approach is typically used. The patient, though, may be unwilling to do even that. At that point the physician should feel confident that he has involved the patient in the decision-making progress to the fullest extent that the patient wishes, and then proceed with the treatment plan, while also assuring the patient that she can always become more involved in decision-making at a later time, should she wish to.
Attitudes toward End-of-Life Care and Advance Care Planning
There is significant variation across cultures regarding ADs and EOL care. One of the best-documented pertains to African-Americans, who in multiple studies have been shown to be significantly less likely to have an AD—and significantly more likely to opt for CPR—than white Americans (Bullock, 2011; Degenholtz, Thomas, & Miller, 2003; Johnstone & Kanitsaki, 2009; Kwak & Haley, 2005). African-Americans are also less likely to enroll in hospice, representing 13% of the American population but only 8% of hospice patients.
Several reasons have been posited for this difference. The first is the history of prejudice and oppression, ranging from the era of slavery well into the twentieth century, as exemplified by the Tuskegee syphilis experiments (p. 7). Second, African-Americans are more likely than white Americans to espouse religious views, which often lead patients and families to see life as a gift from God that is inherently valuable. Death should be on God’s terms, it is argued, not as a result of limitation of treatment, leading conservative Christians to request more aggressive treatment at the end of life (Phelps et al., 2009). Third, depictions of medical care in the media—such as the unrealistically high percentage of positive outcomes resulting from CPR (Diem, Lantos, & Tulsky, 1996)—may contribute to opting for maximal treatment. Finally, there continue to exist significant discrepancies and access to care, thus engendering a sense of mistrust among populations that have historically been denied adequate medical care, especially when the treating clinicians are predominantly of a different race (Cabral & Smith, 2011).
Other cultures also have beliefs that impact EOL care. Specifically, the understanding of what constitutes a “good death” often determines treatment decisions. Many people in Spain for instance, recognize the concept of agonía, “the gradual slipping away of the senses when life is extinguishing gradually and somnolence is acceptable, even preferable” (Nunez-Olarte & Gracia, 2001). By contrast, in northern Europe there is greater emphasis on awareness and the need to resolve psychological “business” (Wilkinson, 1999). And while in some cultures medically administered nutrition and hydration (p. 481) is viewed as obligatory because of the sacred nature of feeding, in others it is not so. “Many cultures see stopping eating as a sign of dying and not its cause. They never even consider the use of a feeding tube” (Dunn, 2009).
While some cultural beliefs inform ACP, others may impede it. The very concept of an AD composed and signed by a patient is, obviously, a very individualistic notion. While this comports well with the American emphasis on autonomy, cultures where the locus of decision-making is shared or deferred may not appreciate the importance (or even applicability) of an AD. Put simply, if the patient was never the primary decision-maker, her losing DMC does not create any added complexity in ongoing decision-making activities.
Examples of cultures where ACP may not be as great an emphasis include some Latino cultures which have a strong notion of collective responsibility that may preclude the completion of an AD by an individual patient (Blackhall et al., 1995). Similarly, many Asian cultures emphasize filial piety (hsiao) to the degree that broaching EOL decisions with an elder could be seen as disrespectful (Yeo & Hikuyeda, 2000).
This variation concerning ACP is illustrated on an international scale by the wide variation in the use of ADs. In many countries, ADs either have no legal basis, require court approval, or are simply seldomly used based on the inherent values of the culture. This variation can be explained not only by the opinions of patients but also by those of physicians. Even within Europe, the range of physicians who are willing to write a Do Not Resuscitate order ranges from less than 10% in Italy to over 90% in the Netherlands (Blank, 2011).
It is crucial that the palliative care physician recognize the impact of culture on EOL care and ACP. One size does not fit all, though. The reasons that one cultural group may be reluctant to engage in ACP may be much different than those of another group. In the case of African-Americans—who are disproportionately deprived of the benefits of hospice care—this might lead to focused initiatives to address specific reservations. Concerns about discrimination require reassurance of the universal application of ACP, which can be framed in terms of the right of self-determination. Establishing a trusting relationship with patients, clarifying potential misconceptions about the benefits and burdens of certain procedures, and thoughtfully engaging the spiritual beliefs that underlie treatment decisions may also be helpful.
But for patients from other backgrounds, respect for their culture may require a modification of the standard approach. Rather than encouraging them to engage in traditional ACP, available tools could be utilized to help them achieve their individual goals. If the locus of decision-making is not the patient, this could be documented in a proxy directive. If the patient wishes the physician to be the decision-maker, this should be clearly documented in the chart, as well as the conversation about the patient’s goals and the reasons for the physician’s decision regarding treatment. Respect for the patient’s cultural beliefs may, therefore, require the physician to modify his own culturally determined expectations, in order to empower the patient to receive the appropriate care on whatever terms are most acceptable to her.
Role of Spirituality in Palliative Care
For most of the history of Western medicine, spirituality and health were closely linked. The Hippocratic Oath, after all, is explicitly directed to the gods: “I swear by Apollo the physician, by Aesculapius, Hygeia, and Panacea, and I take to witness all the gods, all the goddesses, to keep according to my ability and my judgment the following oath.” It was widely believed that many physical symptoms had a spiritual cause and thus were treated with religious rituals. Until the relatively recent past, religious orders provided the bulk of medical care. The first hospices were explicitly religious ventures, and the roles of physician and priest were often combined (Koenig, 2000).
This connection had profound implications for EOL care. Conceptions of death frequently involved religious symbols and rituals, with specific prayers to be said and even particular postures to be assumed in the last moments of life (p. 12). A sudden, unexpected death (mors improvisa) was the worst kind, as it did not permit adequate contrition for sins committed in this life or preparation for the next (Rawcliffe, 1995).
In the post-Enlightenment era, things changed. Descartes’ famous dictum—“I think, therefore I am”—ushered in a dualistic philosophy where the body was viewed as distinct from the mind or the spirit. Greater understanding of the pathophysiology of disease explained phenomena that previously were attributed to supernatural causes. Decreasing religiosity in Western societies reduced the importance of sacred observance. At the same time, death became “medicalized,” more frequently occurring in hospitals or other health care facilities, rather than at home (Ariès, 1974).
With increased diversity and secularization, death rituals—which used to involve prayer and contrition—are now comprised of CPR (Timmermans, 2017) and a physician’s proclamation of the “time of death,” as seen on television. And rather than dreading mors improvisa, many people in the modern world—and a disproportionate number of physicians—prefer a sudden, unexpected death, at least in comparison to a protracted battle with terminal illness (Gallo et al., 2003).
With fewer people espousing explicitly religious faith (Pew Research Center, 2015), spirituality has taken a more prominent role in people’s lives and also in their health care decisions. Defined as “the personal quest for understanding answers to ultimate questions about life, about meaning, and about relationship to the sacred or transcendent, which may (or may not) lead to or arise from the development of religious rituals and the formation of community” (King & Koenig, 2009), spirituality is more difficult to quantify and also less standardized compared to codified religious faiths with specific expectations of adherents. While it would be unwise to make extensive assumptions about a patient’s values simply because he self-describes, for instance, as Buddhist or Roman Catholic, it is impossible to do so when a person simply describes himself as “spiritual.”
Even though it is difficult to define, spirituality inevitably comes into play when a patient is facing serious illness, which Sulmasy (1999) has rightly termed “a spiritual event.” He goes on to observe that “illness grasps persons by the soul and by the body and disturbs them both. Illness ineluctably raises troubling questions of a transcendent nature—questions about meaning, value, and relationship. These are spiritual questions.” A great many patients view their illness through the lens of spirituality—Why did this happen to me?—as they also view their future: How does my spiritual well-being affect my physical health? What will happen to me when I die? Understandably, patients and families want health care professionals to inquire about their spiritual questions and concerns (Ehman, Ott, Short, Ciampa, & Hansen-Flaschen, 1999; McCord et al., 2004). Despite this, the majority of patients report that their spiritual needs are at best minimally met by the medical system (Balboni et al., 2010).
This is precisely the reason that spiritual, religious, and existential aspects of care is one of the domains of palliative care, according to the National Consensus Project (Colby et al., 2010). Consistent with the notion of “transdisciplinary care,” all members of the palliative care team should have at least a basic understanding of spiritual distress and frequently reported spiritual issues. Physicians are expected to be able to perform a spiritual assessment in order to understand core components of a patient’s or family’s religious or spiritual outlook, with multiple tools available (Anandarajah & Hight, 2001; Borneman, Ferrell, & Puchalski, 2010). More complex issues are the domain of the chaplain on the palliative care team, who should be familiar with the patient’s particular tradition and able to speak to it (or, at least, engage the patient in it).
Given the pervasiveness of spiritual beliefs and the impact they have on medical decision-making (especially at the end of life), it is important for clinicians to understand the impact of faith on a patient’s goals, and the appropriate response when the patient’s spiritual beliefs seem to conflict with the medical model of illness. This is particularly true in relationship to a belief in miracles, religious “mandates” for life-sustaining medical treatment, and specific concepts of suffering.
One of the most challenging areas related to religion (arguably more than spirituality) in palliative care has to do with an expectation of a miracle. While it may be difficult for physicians to accurately estimate a patient’s prognosis (p. 84), there are definitely situations when it appears clear either that a patient will not survive, or that he will not achieve his clearly stated goals. In situations like this, standard procedure is to communicate this to the appropriate surrogate decision-maker and explore a shift in goals to comfort.
For understandable emotional reasons, patients and families often have a difficult time assimilating this information. Especially when the disease represents an acute change in the patient’s condition, it can be very difficult to accept the news that he does not have long to live. And even when to external observers it may appear that the patient has experienced a steady decline over a significant period of time, it is not unusual for the patient or family to express surprise (or even dismay) at the limited prognosis.
These well-known emotional phenomena are appropriately addressed through empathy, reflective listening, and ongoing emotional support. Patients and families are usually able to achieve more accurate prognostic awareness, although this can take some time. Meanwhile, maintaining hope for cure (even in the face of evidence to the contrary) is a recognized coping mechanism. As the old adage in spiritual care goes, even if denial is a crutch, it should not be taken away from the patient until he finds something else to prop himself up with, or else he will fall down.
Sometimes when faced with a dire prognosis families will say they are “hoping for a miracle.” In this context, the word “miracle”—which comes from the Latin miraculum meaning a wonder, marvel, or wonderful thing—can refer to many different things. It may be the family’s way of expressing their incomplete acceptance of the patient’s stated prognosis. It may also reflect a hope that their loved one could be among the rare known survivors with the aid of medical treatment (Back, Arnold, & Quill, 2003). Reference to miracles may also reflect anger or frustration over some aspect of the patient’s medical care, as the family seeks a proportional response to the dire prognostication of the medical team (Delisser, 2009).
Actual “faith in miracles” is fundamentally different. This reflects an explicit recognition of the medical prognosis, without undue reliance on exceptional cases at the optimistic end of the bell-shaped curve (if any even exist). True faith in miracles involves a trust that divine intervention will lead to cure (Widera, Rosenfeld, Fromme, Sulmasy, & Arnold, 2011). While some argue that this involves a “violation of the law of nature” (Hume, 1985), from a faith perspective a miracle is more properly viewed as contrary to the order of nature (Thomas, 1975). In other words, if God is truly omnipotent, then “nature” is really just a human observation of the normal workings of the world around us, which God can choose to intervene in in exceptional ways, should God so choose (Sulmasy, 2007).
To be sure, many religious traditions have a history of miraculous cures. Conservative Christians and some Orthodox Jews, for instance, acknowledge—and hope for—their existence (Pawlikowski, 2007; Rushton & Russell, 1996; Sulmasy, 2007). Non-orthodox Jews, Muslims, and mainline Christians tend not to (Khan, 2007; Mackler, 2007; Pinches, 2007). Within—or even outside—these religious groups, patients or families who have had previous experiences with purported miracles or view this as a test of faith may be more likely to hope that a miracle will occur (Orr, 2007).
Such hope is remarkably common, even in an increasingly secular society. While younger people espouse fewer explicitly religious beliefs than older people, nearly eight out of ten Americans—irrespective of age—believe that miracles still occur (Pew Research Center, 2010). With specific reference to medical care, the majority of lay people believe that miracles can occur in specific clinical situations—such as for patients in a persistent vegetative state—whereas only 20% of medical professionals do. This discrepancy highlights the potential communication and relational difficulties involved in establishing an appropriate treatment plan (Jacobs, Burns, & Bennett Jacobs, 2008).
Because of the focus on divine rather than medical intervention, a belief in miracles may impact patient and family requests for treatment. Since a miracle is, by definition, a violation of the natural order, worsening physiologic (i.e., measurable) indicators are not likely to dissuade patients and families from believing that a miracle may still occur. Such a deterioration may instead be viewed as either irrelevant—because an omnipotent God can heal anyone, no matter how ill—or as a test of faith, further solidifying the family’s expectation of an impending miracle. This is especially true in situations where the patient or family believes not only that God could perform a miracle but actually has promised to perform one in that particular case. If such a patient were to die, then the family would not only grieve his loss but possibly also the loss of their own faith, as well.
Studies have confirmed that faith in miracles impacts clinical decision-making, including an increased likelihood of requesting “full code” status (True et al., 2005). Such faith may also lead to less confidence in clinicians’ predictions of futility, based (as they are) on medical rather than spiritual criteria (Zier et al., 2009). In one out of five cases, a patient or family’s faith plays a greater role in their understanding of prognosis than their personal observations or even medical predictions (Boyd et al., 2010).
This can create deep angst within the medical team, especially if the decision is made by a surrogate rather than the patient himself. This indicates that the patient lacks DMC and may also suggest that he is suffering as a result of his underlying disease (or even the ineffective treatment he is receiving). Attempts to forge consensus may be unsuccessful because two conversations are occurring in parallel. One is the medical/scientific dialogue which recognizes his worsening clinical condition and poor prognosis. The other is a more spiritual conversation focusing on faith and the possibility of miracle. When a patient/family fails to respond as expected to news of clinical deterioration—such as by refusing to redirect care toward comfort—it may feel to the clinical team that the patient/family is in denial or is simply incapable of assimilating the necessary information. Quite the contrary, the patient or family is generally able to grasp the medical facts, but these are not the ultimate factors in reaching their decision.
In addressing the situation, a structured approach may help. One example is the “AMEN Protocol,” which outlines a step-by-step approach (Cooper, Ferguson, Bodurtha, & Smith, 2014). The first step is for the medical team to Affirm the patient and family’s belief in miracles, because what physician would not also hope for a miraculous recovery? This shows respect for the patient or family’s spiritual beliefs, while also acknowledging in a very humble way that miracles are God’s domain and it is entirely up to God to decide whether to perform one. Rather than establishing an antagonistic position, this may help align both “sides” behind a common hope, even if they have radically different senses of the likelihood (or even possibility) of it coming to pass.
The second step is to Meet the patient and family where they are, seeking greater understanding of what their beliefs are and precisely why they believe a miracle will occur in this case. The team should then also ask the patient and family to meet them where they are, by Educating the patient and family about the team’s professional role. Even if the family believes a miracle may occur, this does not negate the team’s obligation to offer only medically indicated interventions and to relieve suffering (Truog et al., 2008).
The last step is to reaffirm that No matter what happens, the team is committed to supporting the family. This promise—even in the midst of profound disagreement—is crucial, as abandonment is one of the things that families in these situations fear the most (Steinhauser, Clipp, et al., 2000).
It may be necessary to afford the family additional time to assimilate information and place it into a faith context. In the meantime, it is important to explore what “miracle” means to a family, given its many potential references (Rushton & Russell, 1996). Depending on their perspective, it may be helpful—rather than denying the possibility of a miracle—to reframe what a miracle might look like. For instance, a miracle might have already occurred, in the form of family reconciliation related to the patient’s illness. Alternatively, a miracle could occur in a different way, such as in the relief of suffering rather than healing of the physical body (Brett & Jersild, 2003; Connors & Smith, 1996).
One might also consider exploring the precise relationship between medical treatment and divine intervention. This may take the form of accepting the inherently supernatural basis of miracles, and observing that if God were to perform a miracle, God would not require human interventions such as mechanical ventilators to do it. Viewed in this light, withdrawing the ventilator—as the team may recommend—is not a sign of unbelief. Quite the contrary, it could actually reflect ongoing faith that a miracle might still occur, without the assistance of a human invention (Delisser, 2009).
Another alternative is to invert the standard interpretation of what is God’s will, based on the presumption—held by many religious people who are anticipating a miracle for their loved one—that life does not end with bodily death but rather continues for eternity in a state of perpetual bliss (i.e., heaven). Given that context, it is interesting that conservative Christians—who recognize the finitude of earthly life and live in anticipation of something better—are more likely to request aggressive treatment (Phelps et al., 2009). Likely this is due to a profound belief in life as a gift from God, such that a person should value its sacredness and not relinquish it lightly.
Given this context, it may be possible to reorient the discussion from one viewing continued treatment as respect for the sacredness of life to viewing it instead as clinging to something ephemeral, and possibly a sign of a lack of trust in the afterlife. In this vein, a chaplain colleague sometimes refers to CPR as “swatting God’s hand away” as God tries to “bring the patient home.”
Whichever approach is chosen, a conversation about miracles is explicitly a spiritual conversation. As such, it demands the expertise of a spiritual care professional and should not question the patient or family’s understanding. They likely comprehend the medical facts and recognize the clinical team’s views, but in their worldview, a spiritual reality takes precedence.
In some situations, consensus will not be reached. The team is then faced with the decision of whether to unilaterally withhold treatment or continue interventions which could lead to significant moral distress (p. 514) on the part of the staff. The extent of the patient’s suffering is particularly relevant, as the team may be willing to continue treatment if they feel the patient is not suffering (either by virtue of the extent of his disease or their ability to treat any symptoms). If the institution has a relevant policy, this may be utilized to help distinguish between truly futile treatment and that which is “potentially nonbeneficial” (chapter 14). Throughout the process, in addition to attending to the complex emotional needs of both family and staff (Widera et al., 2011), consultation with the hospital ethics committee can be extremely helpful.
Religious “Mandates” for Continuing Life Sustaining Medical Treatment
From a purely religious point of view, there are specific situations where a patient or family may feel that continued potentially curative treatment is “mandated” by their faith. A general example pertains to conservative Christians who may feel obligated to pursue maximal treatment out of respect for the “sanctity of life” (Phelps et al., 2009). Even if the patient or family does not specifically espouse a belief that a miracle will occur, they may view medical technology as itself a gift from God which should be utilized to its fullest extent.
This is more of a spiritual dilemma than an ethical one, because patients make decisions for all sorts of reasons: emotional, psychological, social, as well as spiritual. As long as a patient has sufficient DMC, his requests must be taken seriously and his refusals respected. From a purely spiritual point of view, however, many of the same approaches that can be helpful in addressing a trust in miracles are also relevant here. Acknowledging the impact of one’s faith on medical decisions brings faith into the discussion, rather than minimizing its importance. Engaging the patient on a spiritual level—especially out of his own particular faith tradition—can be very helpful, such as by sensitively pointing out that placing ultimate value on the ability of medical technology to extend life as long as possible might constitute idolatry, rather than faith (Drane, 2006).
A specific example of possibly mandated medical intervention is the use of medically administered nutrition and hydration (MANH) for patients of the Roman Catholic tradition. Traditionally, the Church has distinguished between ordinary treatments (which are obligatory) and extraordinary ones (which are optional), with an emphasis on avoiding excessive burdens on the patient. As Pope Pius XII (1958) stated, “Life, health and all temporal activities are subordinate to spiritual ends.”
According to the Ethical and Religious Directives (ERDs) of the Catholic Church, there is a moral obligation to accept proportionate (the newer term for “ordinary”) treatments, which refers to interventions “that in the judgment of the patient offer a reasonable hope of benefit and do not entail an excessive burden or impose excessive expense on the family or the community.” By contrast, there is no obligation to accept treatments that are disproportionate, which do not offer a reasonable hope or represent excessive burden (United States Conference of Catholic Bishops, 2009).
The next directive (number 58) directly addresses MANH. In earlier editions of the ERDs, this directive declared that there was a “presumption in favor of providing nutrition and hydration to all patients.” However, in 2004 Pope John Paul II asserted in an allocution that MANH was “normal care” and thus obligatory without reference to the balance of benefits and burdens. He even went so far as to say that withholding MANH constituted “euthanasia by omission.”
As a result, ERD 58 was modified to read: “In principle, there is an obligation to provide patients with food and water, including medically assisted nutrition and hydration for those who cannot take food orally” (emphasis added). The directive specifically applies to patients “in chronically and presumably irreversible conditions (e.g., the ‘persistent vegetative state’)” but could reasonably be applied to patients in analogous circumstances. Exceptions to this requirement include situations where MANH would not prolong life and where it would be excessively burdensome (United States Conference of Catholic Bishops, 2009). As a result of this perceived shift in Church doctrine, some Roman Catholic patients—under the guidance of their local clergy or broader declarations—might feel morally obligated to receive MANH, even when they would otherwise wish not to.
There are several ways of responding to this sense of moral obligation. The first is to address the applicability of Pope John Paul’s statement and the resulting revision of the ERDs. It is important to note that not every word spoken by a pope is viewed as infallible. Encyclicals and infallible pronouncements carry the greatest weight, with “allocutions” among the least authoritative papal statements. In fact, a pope claimed infallibility only once in twentieth century (Bradley, 2009).
Statements that carry greater weight than an allocution—such as the Congregation for the Doctrine of the Faith’s Declaration on Euthanasia—continue to affirm the historic proportionate/disproportionate distinction. Commentators have reasonably questioned whether Pope John Paul II was really trying to overturn five hundred years of tradition. For if he was, an allocution would seem an unusual—and ineffective—way of doing so (Hamel, 2007).
Another approach is to take the pope’s statement at face value, noting that ERD 58 begins with the words “in principle.” This could reasonably be understood not as proclaiming a rule that must be applied in every case but rather a general guideline that needs to be interpreted in light of other factors such as the degree of burden that would ensue (Repenshek & Slosar, 2004).
It is also relevant to note that Pope John Paul II refused a permanent feeding tube even as his own health declined as a result of advanced Parkinson’s disease. A nasogastric tube was finally inserted three days before his death, long past the point where supplemental nutrition and hydration would have had a substantial impact on life expectancy. His condition certainly met the criteria of “chronic” and “irreversible” that ERD 58 addresses, and thus the pope’s choice to forgo MANH over nearly the entire course of his illness suggests a level of contextuality to his earlier comments. A reasonable inference would be that he did not intend to modify Catholic moral teaching on this topic, or else he would have applied the same standards to his own care.
The medical team could, therefore, explore with a Roman Catholic patient whether the Church is really requiring him to accept a treatment that he would not otherwise want. This obviously requires significant theological nuance, highlighting the need for a chaplain or local clergyperson who is able to thoughtfully explore the complexities of the tradition. This could be pivotal for a patient who is truly inquisitive about the specifics of church teaching, which he feels obligated to follow. Some patients, however, may be so concerned about violating a requirement that they opt to “err on the side of safety”—or, in this case, burden—by accepting additional treatments to avoid any risk of falling short of ecclesiastical expectations. In both cases, a thoughtful exploration may empower the patient to wrestle with his own tradition in a way that helps him make peace with it—and his own goals—from within that tradition.
Concepts of Suffering
A basic tenet of palliative care is the amelioration of suffering. While many of the seminal discoveries in the field involved ways to treat physical pain (Saunders, 1960, 1963), palliative care has always focused on other forms of suffering as well, such as social, psychological, and spiritual. These forms are not entirely distinct, as each type can impact the other(s). For instance, a patient in great physical pain is not able to participate in as many pleasurable activities, may feel more isolated as a result, and may wonder why he is suffering so intensely. By the same token, studies have shown that feelings of isolation, abandonment, and depression may increase perception of physical pain (Bar et al., 2005).
Recognizing this complex interrelationship, the concept of “total pain” was formulated, later followed by that of “total suffering” which recognizes that pain thresholds differ and the various types of pain interact in such a way that a specific patient could be said to “suffer” with less physical pain than someone with greater (Strang, Strang, Hultborn, & Arner, 2004). This recognition underscores palliative medicine’s focus on ameliorating suffering in all its varied forms.
Treating one source of suffering may, however, worsen another. Sedation, for example, is a common side effect of opioids and is further exacerbated if benzodiazepines are simultaneously used to treat anxiety. Studies have shown that when confronted with a choice of analgesia or lucidity, physicians tend to value the former, especially with recent increased attention on pain as “the fifth vital sign” (Davis & Walsh, 2004). Many patients, however, prioritize lucidity even at the price of physical discomfort. Other areas of divergence between patients and physicians include the former more highly valuing being at peace with God, being able to help others, and not being a burden to their family (Steinhauser, Christakis, et al., 2000).
Certain groups stress the importance of lucidity, particularly at the end of life. In Buddhism, for example, suffering is a core element of life, the recognition of which is the first step on the path to enlightenment. For many Buddhists, pharmacologic amelioration of physical suffering is not as important as the struggle to understand and cope with that suffering. Given the Buddhist notion of reincarnation and karma, there is significant need to be awake and aware at the end of life in order to permit appropriate rituals preceding and following death (Bauer-Wu, Barrett, & Yeager, 2007).
Other religious groups hold what might termed a “redemptive” view of suffering. One example is the Flagellants, who in the thirteenth and fourteenth centuries whipped themselves in repentance for sins which they felt caused the Black Death.1 This concept was revived in the period between the two world wars and was termed “dolorism”—from the Latin word for pain, dolor—by journalist Julian Teppe. Pain was viewed as a defense mechanism that would prompt defensive action, as well as a means of self-discovery and a way to understand basic truth in relation to oneself. As Teppe writes, “Pain . . . does not allow for cheating, or compromise . . . I consider extreme anguish, particularly that of somatic origin, as the perfect incitement for developing pure idealism, created anew in each individual” (Rey, 1995).
Christian theology often forms the basis of these beliefs, focusing on the suffering of Jesus on the Cross which his followers are called to emulate. In the gospel of Matthew, Jesus calls his disciples to “take up [their] cross and follow [him]” (Matthew 16:24), which some have interpreted as an endorsement—or even a command—of suffering. As the first letter to Peter states: “Christ also suffered for [us], leaving [us] an example so that [we] should follow in his steps” (1 Peter 2:21). The author of the Epistle to the Colossians says much the same thing: “Now I rejoice in what was suffered for you, and I fill up in my flesh what is still lacking in regard to Christ’s afflictions, for the sake of his body, which is the church” (Colossians 1:24).
Patients espousing such beliefs may refuse symptomatic relief not so much out of a desire to remain lucid but rather out of a sense that they deserve the pain they are experiencing by virtue of sins they have committed. They may also view suffering as necessary to achieve some greater goal or meaning, either for themselves or others.
There are also many nonspiritual reasons a patient might refuse symptomatic treatment (p. 214). After excluding (or addressing) any medical or psychological reasons for refusal, the next step is to identify the specific spiritual tradition out of which this view arises, so as to appropriately address it from within that tradition. In the case of Christianity, for example, there are many Scriptural and theological references that call into question the redemptive nature of suffering. For every time that Jesus speaks of carrying one’s cross in the gospels, he also speaks of his yoke being easy and his burden light (Matthew 11:30). Granted, Jesus refused a sedative while on the Cross, but this does not necessarily mean that patients need to refuse analgesia. According to Christian belief, Jesus was the savior of the world bearing the sins of all of humankind; hopefully patients do not carry that much weight upon their shoulders. And much of his ministry was dedicated to healing and comforting, not extolling the intrinsic value of suffering.
Often a desire to engage in redemptive suffering is a sign of a lack of self-forgiveness, which can be addressed from both psychological and spiritual angles. This might involve confessing one’s sins to—and being proclaimed absolved by—a member of the clergy or reaching out and expressing contrition to whomever the patient believes he may have wronged. It could also involve discussion of a compromise, whereby the patient would accept some manner of symptomatic relief but still be aware of the suffering.
In the end, if medical professionals truly take the notion of “total suffering” seriously, they may have to respect the patient’s need to endure physical pain in order to experience spiritual meaning. It may be easier to accept in cases where the goal is lucidity in order to fully experience the final transition in life (as in Buddhism), rather than to appease the demands of a seemingly retributive deity (as in certain interpretations of Christianity). When confronted with a patient’s refusal of symptomatic treatment, all steps should be taken to address this issue from medical, psychological, and spiritual perspectives. But if the patient experiences greater meaning and fulfillment through a balance of pain and relief that most other patients would not tolerate, that is his choice. The dilemma here is spiritual, not pharmacological.
• In addition to specific ethical dilemmas that clinicians face, the core concepts of communication, culture, and spirituality pervade and influence every aspect of the practice of palliative care.
• Historically, physicians often concealed serious diagnoses and prognoses from patients in order to minimize harm (“therapeutic privilege”) and avoid damaging hope. The former concern is parentalistic and the latter is misplaced, and neither are ethically acceptable.
• Disclosure of relevant information is an ethical obligation, but this need not occur all at once or include treatment options that are clearly incompatible with the patient’s stated goals.
• In certain cultures, specific disease names may carry unreliable connotations, and speaking about death is thought to make it more likely to occur. The clinician’s obligation is not to use particular terms but rather to communicate the significance of a patient’s condition in a culturally appropriate way.
• In certain cultures, rather than the patient making medical decisions, this responsibility could be shared with—or deferred to—either the family or the physician.
• Patients clearly have the right to delegate authority to someone else, although physicians may be reluctant to assume this burden. Prior to doing so, the physician should identify the patient’s goals and values in order to apply them to a particular situation, reminding the patient that she always has the right to resume participation in treatment decisions.
• Certain groups are less likely to avail themselves of hospice and palliative care. It is therefore crucial to identify existing barriers and present the option of palliative care in a culturally sensitive manner.
• When a patient or family demands continued treatment in the hopes of a “miracle,” this may reflect incomplete clinical understanding, hope for a highly unlikely outcome, or true belief in supernatural intervention. If the latter, the AMEN protocol—affirm the family’s hope, meet the family where they are, explain professional responsibilities, and no matter what happens stand by the family—can be helpful.
• Perceived religious “mandates” for specific treatments are often not quite as clear as they may seem and should be addressed thoughtfully from within that religious tradition.
• Ameliorating “total suffering” includes addressing spiritual sources. Some patients may have spiritual reasons for refusing symptomatic treatment, which should be addressed from within that spiritual tradition and may ultimately need to be respected, in order to prevent greater overall suffering.
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1. Of note, the Flagellants were later condemned by the Catholic Church as heretics.