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The Humanistic Clinician: Traversing the Science and Art of Health Care

2010; Elsevier BV; Volume: 39; Issue: 5 Linguagem: Inglês

10.1016/j.jpainsymman.2010.03.001

1873-6513

Charles G. Sasser, Christina M. Puchalski,

Palliative Care and End-of-Life Issues

The most beautiful experience in the Universe is the experience of the mysterious. It is the source of all art and science.Albert Einstein Palliative care is grounded in the biopsychosocial-spiritual model of care. Dame Cecily Saunders noted that the care of the whole person included the treatment of “total pain:” physical, emotional, social, and spiritual.1Saunders C.M. The management of terminal disease. Arnold, London1978Google Scholar Patients with chronic, life-threatening, or terminal illness often experience pain that is multidimensional. Clinically, it is difficult to separate physical pain from psychosocial, spiritual, and existential suffering. Although patients are often asked to rate their pain on a scale of 1–10, what does an 8/10 mean? Does the scale assess deep suffering and angst? How can we assess for meaninglessness or hopelessness? And more importantly, can suffering be “treated,” that is, reduced to a DSM code to better lend it to biomedical intervention (and risk subsequent medicalization of a universal human experience)? The humanities offer a framework for addressing the nonphysical aspects of chronic illness. Humanities have helped differentiate disease, as the physical entity, from the larger illness experience. Humanities honor the place of healing even in the midst of an incurable disease process. Humanities provide a means by which the patient's story of suffering, meaning, lived life, relationships, the sacred or significant may be heard and valued in the clinical setting. Humanities encompass the totality of the human experience: the spiritual or inner life; the expression of the experience in art, literature, story, and song; and the support of the patient in the context of healing, compassionate relationships with the clinicians. The humanities may be defined as “academic disciplines that study the human condition.”2Wikipedia Definition of “the humanities”.http://en.wikipedia.org/wiki/The_humanitiesGoogle Scholar To better characterize this area of understanding as it applies to palliative care, and without reducing it to a list of categories, it might be more helpful to envision the “humanistic clinician” as one who incorporates optimal traits through which a humanities perspective may be expressed in daily palliative endeavors, whether it be teaching, research, or clinical care. Six such traits are suggested for purposes of discussion, with much obvious overlap. The ability to daily bear witness to the intense suffering of another without being engulfed by it requires well-developed interiority skills. Albert Keller3Keller A. Autobiography: Finding a voice in medical education. Society for Health and Human Values, Philadelphia, PA1989Google Scholar speaks of acquiring a healthy tension between distance and intimacy: not too close, nor too far away. And yet, the word means “to suffer with,” so the relationship that develops comes at a price. Self-awareness—specifically, a gentle acceptance of our human limits—helps keep a “running tab” on the costs of vicarious suffering. The mystery of suffering—and its shared experience—is a central theme in humanities. In contrast to the flurry of quantitative studies that attempt validation of various instruments of measure in regard to suffering, humanities inserts a strong cautionary note, as stated by David Morris:4Morris D. Voice, genre, and moral community.in: Kleinman A. Das V. Lock M. Social suffering. University of California Press, Berkeley, CA1997: 27Google Scholar “Suffering is voiceless in the metaphorical sense that silence becomes a sign of something ultimately unknowable … Paradoxically, the scream (Fig.1) might serve as a potent image for the metaphorical silence at the heart of suffering. A scream is not speech but the most intense possible negation of language … Like the ceremonial wailing of grief, it seems to come from a region where words fail …” (p. 27). Compassion provides the unspoken language to address unspeakable suffering. Arthur Frank5Frank A. The wounded storyteller: Body, illness, and ethics. University of Chicago Press, Chicago, IL1995Crossref Google Scholar distinguishes between “service,” the technological skills normally used in palliative interventions, and “care,” behaviors of the witnessing professional that honor and affirm the experience of illness. Herein lies the mutuality of compassion, for “in healing the other, we find healing for ourselves.” Lawrence Schneiderman6Schneiderman L. Empathy and the moral imagination.Ann Intern Med. 2002; 137: 627-629Crossref PubMed Scopus (16) Google Scholar asks his medical students to “imagine what it is like to be anything but a doctor. Imagine what it is like to be a patient, a close friend, a lover, a family member—for that is the world you must understand.” He calls it imagination and draws from literature the teaching tools for understanding the experience of the other, elements of which are likely to resonate with his own. Faith Fitzgerald7Fitzgerald F. Curiosity.Ann Intern Med. 1999; 130: 70-72Crossref PubMed Scopus (61) Google Scholar opines that it might be curiosity, that drive to get to the bottom of things, that requires both intelligence and imagination to explore, investigate, and understand, that is generally perceived as caring and may be the same thing. Yet empathy asks us as clinicians to move beyond this to the deeper experience of another person on both an intellectual and emotional level. Empathy is the first step toward the full expression of compassion, which is the spiritual underpinning of healing relationships. The mystery of this strange, interdependent, and mutually healing dynamic is best revealed in metaphor, literature, and art. The most challenging task here is the development of a narrative epistemology, that is, a “story way of knowing” (as opposed to logico-scientific knowing). This is the ability to visualize a person with illness as a story they are writing with their lives. The story has a plot and characters and conflict. The patient is both author and hero of that story “flawed though they may be”8Mohrmann M. Theological ethics. Presentation at Medicine and Ministry, Kanuga Conference Center, Hendersonville, NC, 1991.Google Scholar (in sharp distinction to the health care professional at the bedside, who is not the hero of this story, but rather a participant-observer who may be invited to help edit the final chapters. She also has a story to tell, but that's another story.). The inherent therapeutic potential is succinctly offered by Robert Coles:9Coles R. The call of stories: Teaching and the moral imagination. Houghton Mifflin Co., New York1989Google Scholar “Let each patient be a teacher. Hearing themselves teach you, through their narration, the patients will learn the lessons a good instructor learns only when he becomes a willing student, eager to be taught.” What patients learn is how to place their illness in the context of their larger life story, as described by a patient struggling to come to terms with multiple amputations resulting from Type I diabetes: “[I came to understand] that I am more than my body and more than my emotions. I am more than my mind. I am a center of self-conscious awareness, a spirit, a soul, not transient or temporary. The essence of me cannot be surgically removed piece by piece.”10Lackey R, Lackey M, Sasser C, prod. Mystery of the dance: Healers and wounded in dialogue. Video, 1997.Google Scholar What the humanistic clinician receives is not only a strikingly intimate glance into the patient's world, but also practical information that helps tailor realistic options of care to patient and family goals and values. Narrative competence serves to help us recognize our individual limits to visualize the whole person and the value, in Rita Charon's opinion, of a narrative frame of reference that “allows the literary critic, the historian, the philosopher, and the anthropologist to work alongside the physician for the good of the patient.”11Charon R. Banks J.T. Connelly J.E. et al.Literature and medicine: contributions to clinical practice.Ann Intern Med. 1995; 122: 599-606Crossref PubMed Scopus (225) Google Scholar Indeed, such a frame of reference transforms the humanistic clinician into a “mini-ethnographer with an ‘N’ of one.”12Kleinman A. The illness narratives: Suffering, healing, and the human condition. Basic Books, Inc., New York1988Google Scholar This frame of reference is particularly supportive of the collaborative efforts of the interdisciplinary team. Each team member brings to the discussion a slightly different version of the patient's story, filtered through the particular discipline and life experiences of each. The resulting mosaic—which is never complete—provides layers of meaning to the patient's illness experience that anthropologists call a “thick description.” The resulting discussions have a leveling effect, as each contribution is equally valued, facilitating the transformation of team dynamics from hierarchical to truly collaborative. With the dramatic recounting of his personal experience of life in Auschwitz, Jewish psychotherapist Viktor Frankl astoundingly concluded, “In some way, suffering ceases to be suffering the moment it finds a meaning.”13Frankl V.E. Man's search for meaning. Washington Square Press, New York1963Google Scholar The centrality of meaning in end-of-life experience cannot be overemphasized. David Roy, as quoted by Balfour Mount, said, “We stand at the edge of Eternity, clinched fist raised toward the heavens, shouting questions of meaning at the Universe, without realizing the Universe is shouting those very same questions back at us.”14Mount B. Beyond physical and psychosocial care. Presentation at International Hospice Institute Annual Meeting, Estes Park, CO, 1991.Google Scholar William Breitbart adds, “We are mind, body and spirit, and so sustaining a sense of meaning in a person's life allows for a sense of well-being, peace and contentment and facilitates a self-transcendence and a sense of connectedness with others and that which is greater than oneself.”15Breitbart W. Reframing hope: meaning-centered care for patients near the end of life.J Palliat Med. 2003; 6 (Interview by Karen S. Heller.) (accessed 6/26/09 Available from:): 979-988www.edc.org/lastactsCrossref PubMed Scopus (93) Google Scholar And to further crystallize the place of meaning in the suffering so common to palliative care, Balfour Mount says, “After control of physical pain and symptoms, the most important role for [the humanistic clinician] is to facilitate the discovery of meaning. Our purpose is not to impose our own definition of meaning on others, but to serve as vessels, drawing theirs out.”14Mount B. Beyond physical and psychosocial care. Presentation at International Hospice Institute Annual Meeting, Estes Park, CO, 1991.Google Scholar “Meaning” in this context is much more than rational explanation; it plumbs the depths of human experience and most often finds expression in image and poem. The way of love is not a subtle argument. The door there is devastation. Birds make great sky-circles of their freedom. How do they learn it? They fall, and falling, they're given wings. Rumi16Rumi J. The essential Rumi. HarperCollins, New York1995Google Scholar The nature of palliative care, confronting the health care professional with gut-wrenching stories of human tragedy that evolve over the course of the illness trajectory, evokes a certain amount of “accompaniphobia.” As patients' stories spill out, we not infrequently experience some personal anxiety, and quickly change the subject, exemplified by a taped conversation dealing with sexual violence.Provider: Have you ever been threatened or hurt by (…) or someone close to you?Patient: Yeah. (19 second pause)Provider: Are you allergic to any medicine?17Rhodes K.V. Frankel R.M. Levinthal N. et al.“You're not a victim of domestic violence, are you?” Provider-patient communication about domestic violence.Ann Intern Med. 2007; 147: 620-627Crossref PubMed Scopus (98) Google Scholar That anxiety suggests possible resonance with unhealed wounds deep in our own souls that need further work on our part. Essential to the discipline, however, is the courage to suspend personal agendas, no matter how disquieting, and to go where patients want to go, when they want to go there, whether we want to or not. Samuel Banks18Banks S. Silence and spontaneity. Presentation at the 12th Annual Meeting of the American Association of Hospice and Palliative Medicine, Chicago, IL, June 1996.Google Scholar gave an analogy of a childhood friend who had a cave on adjoining property and would occasionally invite him to explore it. The cave was dark and scary, with many tunnels, but his friend always made it clear who owned the cave. If his friend wanted to explore a particularly scary looking passage, Sam swallowed his fear and went. If his friend did not want to go there, they did not go. Our patients own the cave and make the decisions about which passages will be explored at any given moment. We must muster the courage and flexibility to accompany them wherever they choose to take us. Michael Kearney has said, “We cannot perform miracles; but what we may be able to do is create and hold the space wherein miracles may occur.” There are two parts to this. The first is expert control of pain and symptoms because uncontrolled, physical issues are so distracting as to make it difficult for any other work to be done. The second is presence, which takes the courage to remain at bedside in the face of much personal helplessness and uncertainty. This includes a willingness “to go deep” because “Deep calls to deep in the roar of waters”19Kearney M. Mortally wounded. Scribner, New York1996Google Scholar (Psalm 42:7). Kearney refers to Dame Cecily's observation that “it matters very much to the patient who it is at the bedside” because of an intuitive awareness of who will remain there “in the darkest of moments.” Humanistic clinicians may be most revealed in their degree of comfort with uncertainty, for whom it requires, according to Daniel Sulmasy, “coming to terms with one's humanity;” for indeed, “to be forced to make decisions, to act, and to refrain from action in spite of one's ignorance is part of the human condition.”20Sulmasy D. The healer's calling: A spirituality for physicians and other health care professionals. Paulist Press, Mahwah, NJ1997Google Scholar According to Oliver Sacks, the humanistic clinician moves freely between the two narrative worlds of health care: the classical world, with its “objective description of disorders, mechanisms, syndromes,” and the “romantic” world—“an empathic entering into patients' experiences” of illness. This “trajective discourse” is “neither subjective nor objective,” and neither sees the patient “as an impersonal object nor as projections of himself,” but rather as a fellow traveler through the course of the illness, all the while developing a perception of the patient “not as a problem [to be solved] but as a complex phenomenal whole—a multiplicity of configurations”—that requires imagination, empathy, and understanding.21Hawkins A.H. Oliver Sack's Awakenings: reshaping clinical discourse.Configurations. 1993; 1: 229-245Crossref Google Scholar Anatole Broyard's more sanguine description goes like this: “Now that I know I have cancer of the prostate, the lymph nodes, and part of my skeleton, what do I want in a doctor? I would say that I want one who is a close reader of illness and a good critic of medicine. I cling to my belief in criticism, which is the chief discipline of my own life. I secretly believe that criticism can wither cancer. Also, I would like a doctor who is not only a talented physician, but a bit of a metaphysician, too. Someone who can treat body and soul. There's a physical self who's ill, and there's a metaphysical self who's ill. When you die, your philosophy dies along with you. So I want a metaphysical man to keep me company. To get to my body, my doctor has to get to my character. He has to go through my soul. He doesn't only have to go through my anus. That's the back door to my personality.”22Broyard A. Intoxicated by my illness. Clarkson Potter, New York1992Google Scholar The humanistic clinician enters the world of the patient and expertly surveys the terrain for all possible sources of suffering, poised to tap skills biomedical and beyond, to facilitate healing and serve as empathic witness to the illness experience. The humanistic clinician is one who can fully integrate the biopsychosocial-spiritual model of care with his/her patients. A key element of this integration is the ability to form profound healing relationships with our patients in whom we honor the mysteries of living and dying. We offer six traits of the humanistic clinician as a way to guide our journey into whole person care. True compassion is the intrinsic gift of our own suffering. Empathy, the ability to appreciate the experience of another, is a learned discipline requiring daily practice accompanied by great humility. Narrative competence is at the heart of literature: to see life as an unfolding story; to read the patient as a story being told and the incredible gift of being invited to facilitate, if needed, any “re-storying;”23Hunter K.M. Doctors stories: The narrative structure of medical knowledge. Princeton University Press, Princeton, NJ1991Google Scholar and also to see ourselves as evolving stories that have the potential to be transformed by our relationships with our patients. Life stories can be described by both science and humanities; both of these disciplines allow us to find ultimate meaning and purpose in life. And whether meaning is created or discovered, it is surely the essence of life's most exuberant celebration. But incredible courage is required when in reaching out to the dying other, we realize “we are not there as altruistic heroes helping the victim other. We and the other are both there as wounded ones, each searching for healing, and in this reaching out and reaching in we become wounded healers to self as we are wounded healers to other.”19Kearney M. Mortally wounded. Scribner, New York1996Google Scholar And finally, we must learn the skills necessary to live in two worlds: the world of classical science with its algorithms, rules, and technologies; and the world of romantic science, filled with stories, mysteries, and meaning. Only then can we earn the title of humanistic clinician.