Humanistic End-of-Life Care
Abstract and Keywords
This chapter examines the humanistic aspects of end-of-life care. The case of the Reverend and Mrs. M. illustrate how overly simplistic notions of humanism and ethics will not easily withstand the realities that patients and their families face. The chapter suggests that putting a humanistic approach into practice in the modern medical environment requires a combination of competencies in multiple medical domains, as well as relationship-centered skills and values.
The Reverend and Mrs. M. both undertook complicated medical journeys with positive outcomes. The Reverend was fortunate to recover fully and return to preaching, enriched by a reaffirming medical and spiritual experience. Mrs. M. had a peaceful death, preceded by a time of healing and coming together for her and her daughters. Both cases, however, illustrate how overly simplistic notions of humanism and ethics will not easily withstand the realities patients and their families face. How could we justify over riding the Reverend's clearly articulated advance directive that under no circumstances should he go to a hospital or undergo medical treatment? On the other hand, how could we not treat the Reverend, since his illness was not only reversible but to a large extent self-imposed by a religious ritual gone awry? Taking the Reverend's advance directive at face value, without trying to understand how it applied to his specific circumstances, could have resulted in a premature death. Yet overriding an advance directive Simply because a patient might survive with our potent medical interventions can undermine an individual's integrity as a person and prolong unwanted suffering, more akin to assault and battery than humane treatment. How, then, do we want the medical profession to proceed in conditions of considerable moral and clinical uncertainty, which is the rule in medicine rather than the exception?
(p. 17 ) I have struggled to come up with a working definition of humanism in medicine. The Oxford English Dictionary defines it as “a doctrine, attitude, or way of life centered on human interests or values; a philosophy … that stresses an individual's dignity and worth and capacity for self-realization through reason.”1 In medicine, humanism becomes manifest through caring relationships between health care providers, patients, and their families. A “patient-centered” approach focuses on the patient as the subject of care, emphasizing the centrality of the patient's values as well as his or her body and soul as the recipient of care.2, 3 Others have preferred conceptualizing a “relationship-centered” approach, underscoring the dynamic reciprocal interplay among doctor, patient, family, and society.4 Though final decisions ultimately must flow from patients and their representatives, this model may better serve human beings struggling with severe illness by keeping them connected with their families and with health care providers.
Putting a humanistic approach into practice in the modem medical environment is no simple matter, for it requires a combination of competencies in multiple medical domains, as well as relationship-centered skills and values. A good distillation of this approach emerged in a conversation I had with a colleague friend. How committed would we be in the care of a patient with whom we had a deep personal bond, or perhaps with a close colleague, friend, or family member? In this circumstance, if a treatment existed that would be helpful in treating disease or relieving suffering, we would go the extra mile or 100 miles to learn about it and gain access to it. If the patient began to experience terrible suffering prior to death, we would assiduously work with him or her until it was relieved. No potentially helpful intervention would be categorically excluded in this search. As Francis Peabody put it, “The secret in the care of the patient5 to care about the patient.” Of course, it is easier to do this when one instinctively feels a strong emotional bond with a patient, and harder to do it with a patient who is not well known or is very different culturally or experientially. Nevertheless, that is the challenge of the humanistic physician.
My bond with Mrs. M. evolved over many years of working together, as she faced and overcame depression, breast cancer, and alcoholism. Partly as a result of this shared experience, we trusted each other to be perfectly frank with respect to how we saw her situation. With the Reverend, there was no prior relationship. What we knew about him led us to believe that when and if he awakened, he would probably reject our efforts. We could easily have relied on a simplistic notion of autonomy, and not treated his ailments aggressively because of his prior statements about not wanting medical intervention of any kind. But if we were to treat him as we would a member of our own family, we had to think carefully about the specifics of his medical situation and his personal values. His dehydration and kidney failure had a good chance of being (p. 18 )
Table 2–1. Critical Dimensions of Humanistic Care
Medical, palliative care
Several elements of humanistic care stand out in these two cases. The aspects of care that I have chosen to cover in this chapter are competence (medical, palliative care, ethical, cultural), communication skills, empathic imagination, self-awareness, and healing. Partnership and nonabandonment, which I see as critical additional elements, will be explored in subsequent chapters.
A caring, humanistic physician who is not competent in the biomedical aspects of medicine would not be of great use to a patient facing severe illness. The Reverend and his parishioners needed someone to make an accurate assessment of his medical condition, including his potential for full recovery or survival with significant limitations, and the likelihood of death, Once we decided to move forward with aggressive treatment, he needed skilled medical practitioners to use modern medical treatments to give him the best chance of (p. 19 ) recovery. His recovery depended on careful attention to all of the details of his metabolic state. Had the Reverend been severely chronically ill before the fast, his potential for full recovery would have been considerably less, perhaps leading to a different decision about the proper course of action. Thus, competence is needed both in assessing prognosis and treatment options, and then
When Mrs. M. decided that she did not want aggressive treatment for her stomach cancer, she needed to learn about the efficacy of the medical intervention she was forgoing. If, for example, she had lymphoma, then her chances for long-term survival and even cure with treatment would have been good. Adenocarcinoma of the stomach, however, has a poor prognosis with or without aggressive treatment. Still, in treating her as one would a family member, the clinician should explore whether any promising experimental therapy is on the horizon, and all potentially effective interventions can be considered.
In addition to competence at treating medical diseases, clinicians caring for severely ill patients must have competence in palliative care. This means effectively managing pain and other symptoms,6 as well as talking with patients about their hopes and fears and their possible death. In Mrs. M.'s case, these issues were relevant whether she chose intensive disease-directed treatment or entered a hospice program where the main goal is palliation. Mrs. M.'s initial fear was pain, and I was able to reassure her that we could help her manage almost all kinds of pain, and that we could give her very large doses of opioids if they were needed. Then we began to explore what she still needed to accomplish given her limited life span. She wanted to devote most of her remaining time and energy to reconnecting with her daughters. Mrs. M. hoped that she and her daughters could achieve a deeper understanding of one another, forgiveness for not being there for each other in the past, and deep expressions of love and thanks. Had she not accepted that she was dying, this opportunity for such connection and closure might have been lost.
In addition to medical and palliative care competencies, these cases illustrate the importance of ethical competence. Mrs. M. was within her rights in turning down aggressive medical therapy directed at her gastric cancer, as well as in choosing not to receive cardiopulmonary resuscitation. Offering her as much opioid medication as she needed in the future to control her pain is well within accepted medical practice, even in doses that might be sedating,7 Since death would be foreseen as a potential side effect and not the intention of this intervention, such treatment could be justified according to the rule of double effect, which has become a cornerstone of medical ethics in the United States. As we will see in the next chapter, had Mrs. M. requested medication that could be taken as an overdose should her suffering become overwhelming in the future, she would have asked her physician to enter an ethical and legal gray (p. 20 ) zone. Ideally, humanistic physicians will use the same standards with their patients that they would use with their own family or close friends. Of course, what we would do in exceptional circumstances to help people who come under our care is a question separate from whether legalizing such practices is good public policy.
What about the Reverend's case from an ethical perspective? Unfortunately, the Reverend initially could not speak for himself. Although he had no formal living will or health care proxy, he had made his wishes and values clear to his parishioners. The challenge of substituted judgment is to make the decision as the Reverend would, given his values and his current clinical circumstances. The Quinlan court posed the correct question: If [the Reverend] could wake up for 10 minutes and understand his situation completely, what would [he] tell you to do?8 As is often the case, we could not discern with certainty what the Reverend would tell us under such circumstances. Clearly he would submit to God's will, but did God's will include aggressive medical intervention? It seemed likely that if he could fully recover, he would want our interventions. It was also possible that we would save his body but significantly injure his 85 year-old brain in the process. Given this uncertainty, we were not sure what he would tell us to do, so we erred on the side of fighting for his survival. If the outcome was less than favorable, we would work with the parishioners to pick up the pieces of his life, again guided by the Reverend's values as much as possible.
With the Reverend, we were also crossing a substantial cultural and spiritual divide. Although health care practitioners cannot be expert at knowing the nuances of all cultures, races, and religions, they must be aware when cultural differences exist, and then know how to explore them.9, 10, 11 For example, we now know that cultural and racial biases influence access to treatments for lung cancer12 as well as cardiac catheterization rates.13 Any lack of trust between African-American patients and Caucasian physicians is based in part on such presumably unconscious biased behavior, as well as more egregious past incidents.14
Furthermore, physicians as a group tend to be nonreligious by comparison with patients.15, 16, 17, 18 The Reverend had strong Christian fundamentalist beliefs that were highly relevant to his care but likely to be somewhat alien to many on the health care team. The Reverend would be much more likely to look to God for guidance than to his medical providers. Physicians and other health care providers tend to put much more of their faith in the power of medical science to thwart death and disease. Clinicians must be aware of how their own priorities, beliefs, and values may conflict with those of their patients-and perhaps determine the types of care that they offer. They must also try as best they can to explore the cultural and spiritual dimensions of a patient's life so they can enrich the caring process rather than hamper it.
(p. 21 ) We identified the Reverend's church elders as his chief advocates, and met with them on a regular basis. Once we achieved a consensus about trying aggressive treatment, we apprised the elders of the Reverend's medical progress each day. We also inquired about any concerns or observations they might have, keeping in mind that their strong faith would be an especially important resource should his clinical course not turn out well. We were aware that his congregation would help support and sustain him if he emerged in less than optimal shape either physically or mentally. When the Reverend awoke in a strange environment during Professor's Rounds, his parishioners were there to comfort him and help him make sense of what had happened. After he had recovered, the Reverend had no qualms about our having aggressively intervened.
Communication skills are at the core of humane medicine. Good communication permits patients and families to make decisions that reflect the complexity of clinical medicine as well as their personal values and preferences. When Mrs. M. was faced with making a decision about how to approach her newly diagnosed stomach cancer, she needed information about this type of cancer: its natural history, and how it usually responds to medical treatment. After she learned that the prognosis was not favorable with or without medical treatment, it was incumbent on me, as her physician, to learn about her values and priorities in light of this new information. Was she willing to risk increased suffering during her final days, weeks, or months in order to fight her disease with experimental therapy? Or would she rather avoid additional iatrogenic suffering and spend as much time as possible at home with her family? By listening carefully to her preferences and the personal experiences that underlay her values and priorities, I learned that Mrs. M. wanted to minimize suffering and maximize her quality of life for the time that remained.
Had she wanted to fight for life with anything that might work, even if it involved additional suffering, then we would have had to more fully explore experimental medical therapy. These treatments could work (they had not been shown not to work), though the chances for prolonged survival in this particular disease were probably less than 1%. Why not try it at least? To be fully informed, a patient and family would have to learn what happens to the other 99%. Chemotherapy, radiation, and surgery were combined in the experimental protocol-interventions associated with considerable added suffering. Such added hardship might be worth it if one were in the 1% that survived, but it would seem a harsh way to treat a person if she were in the 99% who don't. Some patients would find such a fight against disease and death critical to them (p. 22 ) as persons. For example, some patients who have been prisoners of war and survived against all odds simply cannot imagine giving in to illness and death no matter how poor the odds. Others might draw the opposite conclusion from the same experience: that they have already suffered so much that it would be meaningless to submit to the added futile suffering that would come from medical intervention.
Some patients will make different decisions depending on how the information is framed. “There is a 1% chance the treatment could work!” and “There is a 99% chance that the treatment won't work” are opposite sides of the same coin. To be fully informed, the patient needs to learn about what happens to both the 1% and the 99%, ideally spending time exploring such information in depth.19
The physician should not be a passive agent whose job is to simply provide “options” from which the patient must choose.20 Informing the patient about the range of possibilities is an important starting point, but then the physician must use his or her knowledge and experience to help the patient make the best decision given the patient's values and clinical situation. With Mrs. M., the decision-making process was relatively easy, since we both understood that experimental treatments were toxic and invasive (chemotherapy, radiation, and surgery), and the odds of their working were remote. Had she wanted to pursue aggressive experimental therapy, we would have had to have serious discussions wherein I would become informed about how she saw the choices and she would become informed about how I saw them. I would support her choice once I fully understood it, as long as I believed that she was fully informed, but neither of us would be well served by being passive or neutral in these discussions.
The second section of this book is devoted to critical communication issues, including the delivery of bad news, how to discuss palliative care with patients who can communicate for themselves and those who cannot, and how to respond to those who express a wish to die. The exploration of these domains will illustrate humane end-of-life care, including joint decision making and maintaining relationships that are both caring and informative among health care providers, patients, and families. Communication about complex end-of life issues is one of the weakest links in our efforts to improve care and choices at this phase of life, yet it remains pivotal in allowing patients and families to make the most of the end of their lives. Treating patients and their families as you would like your own family members and friends to be treated is a tough standard, for it requires genuinely caring about the outcome and using both medical and palliative care systems in an intensely personal and individualized way. Given the inherent limits imposed by one's illness, why not treat our patients exactly as we would want to be treated ourselves, and communicate with them as clearly, personally, and humanely as possible?
(p. 23 ) Empathic Imagination
Empathy is defined as the ability to place oneself within the lived experience of another-in simple terms, to walk in another's shoes.21 To experience empathy, one must have a combination of excellent interviewing skills and a vivid ability to imagine both the emotional and cognitive experiences of another. As one hears about an individual's particular story of illness, and listens to it with an open mind and an open heart, one begins to “get a feel” for the patient's inner experience. This feel may be vague and imprecise initially, but it can be clarified by encouraging the patient to give a detailed account of the experience. The next step is to try to identify with the experience, using one's own human experience and imagination as well as what is known about the patient. Sometimes the patient's experience can be acknowledged (“That must have been terrifying for you”) or validated (“Anyone who had experienced such a shock would have been frightened”). The deeper understanding of the patient's experience that emanates from the patient's responses to these statements helps a physician or other care provider build empathy.22, 23
Opponents of more open access to physician-assisted death as a last resort have criticized advocates as having a “failure of imagination” about the opportunity for meaning and growth at the end of life.24 Many practitioners, patients, and family members do indeed lack a vision about the opportunity for self-fulfillment and human connection that is sometimes possible at the end of life. However, many patients and families criticize opponents of physician-assisted death for a lack of imagination in a different realm. Practitioners must also try to understand and explore the suffering. that might drive a seriously ill patient to contemplate ending his or her life.25 Only after fully exploring and empathically imagining the patient's circumstances can one begin to treat the patient as a loved one and to imagine options or approaches that are congruent with the patient's values and respectful of him or her as a person.
Whereas empathy involves feeling with or feeling as the patient, sympathy involves a feeling of sorrow for the patient. Sympathy occurs when the physician acknowledges the patient's loss, but it is marked by the expresser staying on a different (and usually superior) plane than the patient. I might “feel sorry for you” (about your condition, illness, or loss), but I don't necessarily understand or appreciate your feelings or experience. Empathy, on the other hand, is having a strong identification with what the patient is feeling, which allows for much greater emotional and existential proximity. This vantage point may allow the physician to contemplate decisions more as the patient would make them. It reintroduces the subjective into medicine, and stops the practice of pretending that decisions can be based exclusively on an “objective” probabilistic analysis.
(p. 24 ) When a physician begins to truly enter the patient's world, including its more difficult aspects, both physician and patient experience a sense of connection.26 There may be physiologic correlates, such as tearing when a patient is crying or experiencing goose bumps when the patient is frightened, allowing the clinician to understand that his or her emotions and cognition are in sync with the patient's. Even if there is no simple way to address or resolve the patient's dilemma, at least the patient is no longer alone with his or her thoughts and feelings. Frequently, the feeling of connection enhances the clinician's commitment to work with the patient in a way that is based squarely on the patient's experience and values rather than those of the physician.
How might empathy and imagination be realized with Mrs. M. or the Reverend? Let us begin with Mrs. M., whose inner life began to take on depth and shape for me when I heard about her struggles to raise two children as a single mother, and about how she finally found the courage to take on and eventually overcome her alcohol addiction. After initially being diagnosed with stomach cancer, Mrs. M. stated that she had “suffered enough.” One could not respond empathically to this statement without having some understanding of her past suffering. Had I not known her life story, I might have asked her to tell me more about how she had suffered in the past. As her story unfolds, and the interviewer begins to get a more complete picture of her as a person, it is much easier to join with her in making decisions consistent with her values. For Mrs. M., who was quite isolated at first, there were no other friends or family who understood enough about her to appreciate what she was going through.
Having heard that she had deep regret about her relationship with her daughters, and knowing her desire for some kind of forgiveness and restitution, I was able to help Mrs. M. ask her daughters to participate in her terminal care. This approach was so much more meaningful than experimental therapy would have been for Mrs. M., yet for another patient, with a different life experience, the opposite may have been true. As Mrs. M. gradually stopped eating and drinking, and slipped into a coma, I understood enough about her goals and wishes to be clearly communicate to her daughters that she would not want artificial feeding or hydration. I was then able to reassure them that they had already given her the most precious gift possible—their loving presence and forgiveness.
How might empathy and imagination have worked with the Reverend? Here the task was more formidable, for not only were there substantial cultural differences, but the Reverend could not speak for himself. To make matters more complex, we were initially told that the Reverend had never wanted to be taken to the hospital in the first place. Yet as we began to understand the Reverend's story, we learned that the goal of his fast was to become closer to God, and to use the fruits of that experience to enrich his ministry in this life. We heard (p. 25 ) nothing about his being prepared for death, or even considering that such a ritual might make death a possibility. His profound dehydration was completely unanticipated. Therefore, our task was to take what we could learn, join with those parishioners who knew him best, and try to empathically imagine what he would want us to do. Although we might have been wrong, our collective imagination suggested that aggressive treatment would have been his wish under these circumstances.
When patients cannot speak for themselves, they depend on us to use what is known about their values and clinical condition, and to make decisions as we believe they would under the circumstances. The skills needed here are a combination of good detective work about the person's values and experience, and a skilled clinical assessment of the disease process, including its prognosis with and without treatment, followed finally by using one's empathic imagination to make a decision as the patient would. The Reverend confirmed that we made the right decision; he was glad that God gave us the wisdom to intervene on his behalf.
This is not to say we should always err on the side of aggressive treatment when there is any uncertainty, for there is never 100 percent certainty about a person's wishes when it comes to substituted judgment. Nevertheless, we must use what is known about the patient to make the best decision possible, using his or her values rather than our own. A combination of empathic imagination and consensus building by those who care about the patient is the best possible guide during these difficult times.27
If one is to engage with patients and their families in this intensely personal way, considerable self-awareness is required. At the Simplest level, one may confuse one's own feelings and values with those of the patient. The question of what we ourselves would do in the patient's circumstances is an important one, but it speaks to our own values and experience, not the patient's. Similarly, the sadness or anger that a clinician may feel when interacting with a patient may be a clue to how the patient is feeling, but it may also reflect the physician's own emotional state or personal reaction to the patient rather than any true empathic understanding.
Sorting out feelings and values takes considerable practice, and improves with training and repetition.28 Unfortunately, most physicians are given little encouragement or training in looking inside themselves and exploring potential sources of strong reactions and identifications. In fact, there may frequently be a conspiracy to suppress such reactions, in the belief that they should not exist in a “professional” physician—patient relationship. Yet (p. 26 ) these explorations are an important part of the training and evolution of a humanistic physician.
Many clinicians recognize the feelings and reactions of others with much greater clarity than they do in themselves.29 They have frequently been caretakers within their own families from an early age, suppressing their own emotional growth and self-awareness in the interest of serving others. At first blush, this may seem to enhance clinicians' capacities for understanding of and empathy for their patients. On the other hand, more complex feelings of resentment and anger may emerge, and these physicians may be able to look only to the patient and not to themselves for explanations about what they are experiencing.28, 30 A truly self-aware clinician will be able to determine if the source of a strong reaction is the clinician him- or herself, the patient, or the interaction of the two.
Let us see how self-awareness might affect the care of the Reverend and Mrs. M. I encountered the Reverend early in my training, when I was just beginning to come to grips with the dark side of medicine's ability to simultaneously prolong life and prolong dying. As members of the hospital healthcare team, we were repeatedly encountering frail patients who were extremely ill and appeared to be dying, and we were blindly fighting against death using all available medical technology. Being a medical intern, I was a foot soldier in this monolithic and sometimes futile battle. At its most extreme, we would electrically shock the heart repeatedly, crush the chest, and invade all parts of the bodies of frail, elderly, dying patients. The senior physicians who were ordering this invasion were nowhere to be found as these interventions were implemented. At an emotional level, it felt at times as if we were torturing dying people up to and including the moment of their death.
There were a few victories, as with the Reverend, but the failures and added suffering seemed disproportionately high. The lack of clarity surrounding the goals of treatment was usually not part of the medical dialogue. In fact, one's devotion to the practice of medicine might be called into question if one raised doubts about the preferred approach. Perhaps my hesitance meant that I was not a dedicated enough professional. Perhaps others who had more clarity of purpose would be more able to help patients and their families. Yet some patients and their families were very reluctant about what they were going through, did not know how to stop the process, and mainly wanted relief from their suffering. For them, we were clearly doing more harm than good.
In the midst of this confusion, and in a world in which such conflict was almost never openly explored, how were we to address the Reverend's dilemma? The dominant medical ethos of the day was unequivocally to treat an underlying illness that had a substantial chance of being reversible. Although his age and his profound degree of dehydration and kidney failure made the odds of his recovery around 50%, this would be more than enough to warrant (p. 27 ) our proceeding. Conversely, the principle of substituted judgment suggested that we respect the patient's autonomy by avoiding any medical intervention-seven those that would likely be effective.
My initial personal reaction was one of ambivalence. The Reverend had a better chance than most of recovery, but what if he only partially recovered? What if his body recovered but his mind did not? If we started this process, did it mean that he was consenting to any and all medical interventions no matter how invasive-and even if his condition deteriorated? On the other side of the coin, I was not at all sure what the Reverend would want us to do under these circumstances. The information we had about his wishes was too superficial to warrant nontreatment under these unique circumstances. Furthermore, his parishioners were supporting the idea of a treatment trial to see if his condition could be reversed. If he deteriorated, we could rethink our strategy. The challenge for the self-aware physician was to think through all of the potential conflicting forces and try to make the decision the Reverend would if he could speak for himself.
In the Reverend's case, we made the right decision. This was not simply because he survived and walked out of the hospital (we had resuscitated some severely ill patients against their will who were very distressed to have survived), but rather that he appreciated our efforts and believed that we had done the right thing. I want to believe that we struggled to represent the Reverend's will in making these decisions, but I also remember the pressure to aggressively treat all patients in those days. Therefore, we may have done the right thing for the wrong reasons. Nevertheless, we took joy in this success, and in the experience of helping to bring the Reverend back from the dead.
The Reverend's experience of “the other side” was also food for thought and reflection, though it was a topic that was considered “nonmedical.” To be considered self-aware, a physician must grapple with the meaning of life and death, including the possibility of life after death, and therefore should become a student of such subjective experiences.
What about Mrs. M.? When she was struggling with alcoholism and depression early on in our relationship, I had to contemplate my own impatience and irritation with her. This did not stem from anything she said or did, but rather from the ravages that alcoholism has Inflicted on my own family. I have learned more about my own family background in this regard, and I understand that my anger when confronting an alcoholic patient usually has less to do with that person than with my own personal issues. These reactions had to be put in perspective before I could begin to see Mrs. M.'s strengths and unique characteristics as a person. By the time she was diagnosed with stomach cancer, I had moved well beyond seeing her as an “alcoholic,” and instead knew her as a single mother of two grown children, as a person who loved reading and knitting, as someone who had taken to drink in the past to self-medicate (p. 28 ) for depression and loneliness, and as an employee who had worked extremely diligently at her job as an executive secretary for more than 30 years. From this vantage point, I saw her as someone whose medical outcome was extremely important to me. Had we faced these decisions as strangers, particularly if she were still drinking heavily at the time, I would have had to work much harder to see her clearly as a person, and to personally care about what happened to her. Yet that would have been my challenge.
Healing is defined in a traditional biomedical setting in terms of curing patients of their diseases. Because of the prevalence of chronic diseases that cannot be cured, the definition has been expanded to include helping patients adjust to chronic disease and disability. Inevitably, this requires that patients be considered as persons with their own families and their own social and cultural contexts. Still, a central element of the healer's job is to fight alongside a patient for prolongation of life, to help the patient and family adjust to the consequences of chronic illness and of the medical treatment process. Death is usually considered to be a medical failure in this model—something to be fought off using all of medicine's resources, even if the treatment engenders additional suffering.
Patients who are dying need a broader model of healing—one that includes death as a natural and inevitable part of the life cycle. Modem medicine has been remarkably successful in prolonging life by developing treatments for many of the potentially fatal diseases that afflict human beings. But each success has created a new set of challenges. The last chapter of our lives is now likely to be filled with a progressive loss of independence and an increase in suffering and medical dependence.31, 32 We are far more likely to die in a hospital or nursing home than in our own home.31 Instead of being surrounded by loved ones for our last hours or days, we may be tied to machines in a vain attempt to rescue us from inevitable death. It is as rare to find a “natural life” among those of advanced age as it is to find a “natural death.” Life prolongation is usually desirable, but if life becomes dominated by suffering that can end only in death, then what is being prolonged is suffering and dying, and that is frequently not good.
Paradoxically, because of medicine's successes in extending life almost indefinitely, patients, families, and clinicians are today frequently faced with vexing questions about when to stop treatment, or whether to treat the next complication. Thus, we in medicine make life-and-death decisions on a daily basis; this is frequently done with family members rather than the patient, because so many patients eventually lose the capacity to participate in (p. 29 ) decision making due to the ravages of terminal illnesses. Here the healing task shifts from prolonging life at all costs to relieving suffering. One of the most terrifying aspects of dying in the modern era is the possibility of personal disintegration—existentially and personally falling apart before death.33
Dying can be a time of personal growth to find new meaning and connection in life, especially if the dying person is aware that death is near.24, 34 For the person who defined him- or herself in terms of physical abilities or job productivity, there is inevitable psychic pain as one gives up these abilities. There may also be an opportunity to spend time and energy on activities that perhaps had been shortchanged in the past, such as being with family and friends, exploring the meaning of one's life, writing, or reading. Many have come to believe that being diagnosed with a severe, terminal illness allowed for some of the best moments in their lives, because they gave themselves permission to experience vulnerability and personal connection with friends, family, or a higher power that had not been possible before.
Although we should promote and encourage such growth, not everyone can experience it. Some may experience it for a time, but then become challenged by their disease in ways that are personally threatening.35 Sometimes the meaning that is unearthed in the dying process is subsequently undermined as death approaches, especially when the last phase of life is accompanied by severe suffering or personal disintegration. This brings up two additional essential elements of a healing relationship: partnership and nonabandonment. These concepts will be explored in depth in subsequent chapters. They reflect a commitment by a clinician to face the unknown together with his or her patient and family. A healing relationship entails both a caring commitment and a willingness to continue to problem-solve as the patient's clinical course unfolds. Let us review how this commitment worked with the Reverend and Mrs. M., and how it might have been challenged if their clinical course took different turns. In the next chapter, we will further illustrate these concepts by presenting the story of Diane.
We initially took a risk in treating the Reverend's illness despite his prior statements that suggested he did not want such medical intervention. Two underlying clinical elements were critical. First, the illness he had was reasonably likely to be reversible. Second, his illness was unintentionally self-inflicted, and therefore not part of any natural disease process. Both of these elements were important to the parish elders who were speaking on behalf of the Reverend. The biggest risk in all of our eyes was that this man's body would survive but his mind, which had been so clear prior to this illness, would not. The church elders believed that the Reverend would not want to be kept alive if he could not preach or counsel, activities that had been central to him for all of his adult life.
(p. 30 ) The Reverend was very lucky. His body fully recovered, as did his mind and spirit. In fact, his religious beliefs were only reinforced by his vision while he was near death, and his antagonism toward organized medicine was tempered to some degree by his reconceptualizing it as an agent of God.
Imagine for a moment that the Reverend had only partially survived. His kidneys returned to normal, but he had a stroke while he was severely ill, leaving him unable to walk, talk, or swallow. Here we would have had even tougher issues to face, including second-guessing the wisdom of initially overriding his wishes not to be brought to the hospital. His parishioners would definitely not have abandoned him, but could they have provided the 24 hour care and supervision that he would have needed? If we determined that he could not swallow food without risking getting it into his lungs, should we put in a feeding tube to provide artificial hydration and nutrition? What if he was alert but could not speak or consistently communicate? If he could have understood his situation, what would he have told us to do? If we believed that he would not want a feeding tube, could his parishioners and health care providers have tolerated sitting at his bedside as he gradually again became dehydrated and went back into kidney failure? Would the Reverend rather have died peacefully of the complications of his stroke at that time, or should we have provided artificial hydration and nutrition for a few months to see how he adjusted to his disability? Easy answers to these questions would have been unavailable. Yet the Reverend and his parishioners would have had to face these decisions had his illness gone another way, and they would have been better prepared to do so with a medical partner who was unequivocally committed to his well-being. Healing under such adverse circumstances would mean keeping the Reverend's personhood and values, as interpreted by his church elders, in mind at all times.
When Mrs. M. was diagnosed with stomach cancer, she was willing to let nature take its course, even though that course inevitably ended in her death. She wanted her pain and symptoms to be relieved, but she also hoped to have the opportunity to settle personal affairs with her daughters before she died. Dying presented an opportunity for a different kind of healing for Mrs. M., for she was able to come together with her daughters to give and receive forgiveness, and to redefine their relationship. This time together was a blessing in the midst of tragedy. Mrs. M. felt more whole and integrated as a person during those last months than she had ever before in her life. As she peacefully went into a deep sleep, we all knew we had witnessed something special.
Her curve in the road was relatively easily managed. Unlike the Reverend, she did not have a near-death experience, but she remained intact mentally, spiritually, and emotionally. Her family Simply had to adjust to an unpredictable turn of events that added a few more days to their time together. On the surface, there was no unfinished business or final revelation to explain her brief (p. 31 ) return to consciousness, but the few additional days they spent together were peaceful and easily tolerated.
Imagine a somewhat different scenario. Suppose the family had come together as described and Mrs. M. had gone into the deep sleep, but this time she awoke severely agitated, fearful, and confused. Medical understanding would attribute these symptoms to the metabolic changes associated with dehydration and her bodily systems shutting down. Mrs. M. and her family, however, would run the risk of having their wonderful coming together destroyed just before her death. How we respond to such crises says volumes about what it means to be a committed healer.
The personal disintegration that sometimes comes with such agitated delirium is profoundly disturbing, and requires a decisive response.36 Because Mrs. M. was so close to death, doing blood tests to discern the cause(s) of the delirium would have been inappropriate. Our medical job here was primarily to relieve suffering, and to recapture the meaning and connectedness, if possible, the family had experienced over the past few months. This could probably be achieved only by sedating Mrs. M. to unconsciousness.37 Her daughters would have to consent to the sedation on Mrs. M.'s behalf; they would also have to understand the importance of helping her escape this kind of terror, and accept the risk of hastening her inevitable death by a small amount of time. This risk would be more than counterbalanced by the inhumanity of continuing to let her suffer in this profound and dehumanizing way.
Physicians who commit to working with patients and families through the dying process must face unforeseeable turns in the patient's course. A commitment to face the unknown together, and to do everything in one's power to preserve and even enhance a patient's integrity and meaning, makes this one of medicine's richest, most rewarding, and at times most demanding endeavors. As these and other stories illustrate, the opportunities for growth and meaning are unsurpassed, yet the potential for disintegration is always lurking. To do this work, one must be both a romantic and a realist, both a guide and a student, and most of all, a committed partner.
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