In the thirty years since Cassell’s article, nursing researchers, medical ethicists, and those in hospice and palliative care have brought suffering out of the closet, especially for patients at the end of life. Still, it is remarkable how infrequently physicians ask about suffering. “How are we feeling today?” just doesn’t get there. Too often, doctors assume that they understand what is making a particular patient suffer most. The reality is that we usually do not.
In fact, physicians are cautioned not to use the word suffering for fear that it casts patients as victims, denying them agency and personhood. However, this can go too far. I once prepared a monograph for the National Cancer Institute on enhancing patient-physician communication. The subtitle was “Promoting Healing and Reducing Suffering.” Though many of the scientists and clinicians around the table who were reviewing the monograph were supportive of the title and the approach, others were puzzled. They knew how to measure physical and mental health: physical, emotional, social, and existential quality of life; pain and other symptoms; and stress and coping. Nonetheless, healing and suffering were unfamiliar locations on their cancer map, even though most intuitively realized that suffering is not merely the presence of measurable pain or distress, just as health is not merely the absence of disease.
I recently reviewed the mission statements of thirty health care institutions around the country, many of which were impressively long and detailed. Not one mentioned suffering. Instead, they contained phrases such as “exceeding customer expectations,” “eliminating cancer,” “the highest order,” “the best provider,” and “trusted partner.” One hospital’s mission statement even suggested that physicians “treat the body,” leaving the care of the hearts and minds of patients to others.
Next, I checked to see if the word suffering appeared in any of the 170,000 International Classification of Diseases (ICD-10) diagnosis codes that are used as the basis for billing, quality metrics, and health statistics. Not even once. Over the past months, I’ve systematically searched the medical literature for articles that explore how physicians can and should respond to suffering. I found a mere six research studies. Quite a number of thoughtful reflective essays provided compelling descriptions of suffering as well as physicians’ and nurses’ attitudes toward suffering; most addressed suffering in end-of-life care only; few touched on other contexts in which suffering occurs, and even fewer proposed ways of responding to it. Perhaps this is because suffering, being a holistic experience, doesn’t neatly fit into the way that doctors and researchers tend to think. It is difficult to see—and address—that which we cannot name.6
SUFFERING BY ANY OTHER NAME
Karen Volk was in her late thirties when I first met her; she is now fifty-three. Karen was trained as a social worker and has two children. She had left an abusive relationship and was recently remarried. For years, she had been chronically fatigued, yet all her blood tests, including those for Lyme disease, anemia, lupus, thyroid disease, and a host of others, were normal. She complained of migrating joint pains and swelling, but a physical exam showed little of note. She had multiple tender points in her shoulders and back and did not sleep well, all characteristic of fibromyalgia—a poorly understood condition that is a minor annoyance for some and debilitating for others. She had also been diagnosed with interstitial cystitis, a painful bladder condition of unknown cause. For clinicians this is a familiar picture: chronic pain in multiple sites, fatigue, depression, and abuse tend to go together.7 Her mood was like a roller coaster, but her symptoms didn’t necessarily fluctuate with her state of mind or level of stress. A few years before, she had become dependent on narcotics for chronic pain; after having weaned herself off them, she didn’t want to risk dependence in the future.
Every few weeks, Karen would land in my office, in pain. I prescribed medications for pain, depression, inflammation, and insomnia. Some were helpful, yet overall Karen declined, until three years later she could barely walk and could no longer work. The less mobile she became, the more weight she gained, putting on fifty pounds. And the pain persisted. At first, we tried to avoid narcotics, but nonnarcotic pain medications just didn’t work for her. She had a high tolerance for narcotics and, despite the substantial doses that I prescribed, still had severe pain. The only option was to up her doses, which worried us both.
Before I met Karen, her chart had grown thick with consultations from infectious disease specialists, orthopedic surgeons, neurologists, sleep specialists, rheumatologists, dermatologists, urogynecologists, podiatrists, and mental health professionals. Rather than accept and work with uncertainty, some of her specialists created an illusion of knowing and control, proposing “functional” diagnoses—fibromyalgia, migraines, myofascial pain syndrome, somatization, and sleep-onset disorder—all of which only describe symptoms and not their cause. No one could put the picture together into a coherent whole.8 Karen felt she was not being taken seriously and that no one was in control. When doctors would tell her that her symptoms were due to “stress,” she felt even more helpless and felt blamed for her own suffering.9 Meanwhile, doctors groaned when they saw her name on their schedules; some distanced themselves (“Call me in six months”), and others questioned the legitimacy of her complaints.
Then one day an X-ray of Karen’s left ankle looked different from the previous ones. Her ankle joint showed signs of inflammation and destruction of the cartilage, just as one would see in rheumatoid arthritis. Now Karen had a disease that could be seen, with pathological changes. Well, sort of. Her blood tests remained normal; she didn’t have evidence of any of the known rheumatologic conditions that could explain her joint destruction. She was again left in limbo. She tried increasingly potent (and potentially toxic) medications.10 While she improved, she also had severe side effects. Once, she developed an infected ulcer on her right ankle that was resistant to antibiotics and continued to fester. Eventually she had prosthetic joints in her knees and right hip and surgery on her wrists, elbow, and shoulder. Still, she walked with a limp and couldn’t lift anything heavier than ten pounds. Narcotics, physical therapy, acupuncture, herbal medicines and nutritional supplements, meditation, and psychotherapy were all somewhat helpful, but overall, her trajectory was worsening. She became despondent and hopeless. Her marriage crumbled. I once took a biopsy of her ankle ulcer and on her way home she started to bleed from the biopsy site. She returned to my office, in tears, saying, “I can’t take this anymore.” I applied pressure, elevated her leg, put in another stitch, and the bleeding stopped. That was the easy part; fixing the wound didn’t even begin to touch her suffering.
Patients such as Karen are humbling to clinicians. She had no definite diagnosis. For reasons no one understood, she seemed to get every possible complication from her treatments and didn’t heal as well as other patients. No one could untangle the degree to which the causes of her disability and suffering were physical, psychological, or social. The only clear thing was that her suffering was intense. With each downturn, Karen’s illness affected me personally. The more ill and depressed she became, the more helpless I felt. I began to dread our visits.
BEYOND HELPLESSNESS
Then, things changed for me in ways that I am still trying to reconstruct. I realized that it wasn’t Karen herself who made me feel helpless. Rather, my feeling of helplessness was rooted in an expectation I had of myself—that I could somehow fix something that would then make her suffering abate. When I couldn’t fix things, I felt adrift, uncomfortable. The mindful moment was when I simply allowed myself to feel helpless and not push that particularly unpleasant feeling away.
Trying to build a wall between myself and her misery would do no good, nor would blaming myself or anyone else. I realized that feeling helpless was okay as long as it alerted me to the need to take a fresh look, to adopt a beginner’s mind. So I started asking myself questions: Is there something I’m not seeing? Can I take another perspective? Can I be more present with her without being consumed by her desp
air? At times, the thing to “do” was to do nothing, not reassure, not fix. By temporarily setting aside my need to fix, I could witness her suffering and share her uncertainty, her ambivalence, her hope. The physical exams I performed at each visit became gestures of solidarity as well as a search for pathology.
Doctors are most comfortable fixing things, and I am no exception. We are trained to first identify something gone awry—a symptom such as pain, anxiety, or even existential distress, or a symptomless disease such as hypertension—then to try to restore the patient to a prior state of health using medications, surgery, or behavioral means. Some of Karen’s issues were simply unfixable. Surgery would never restore her joints to their pre-arthritis state of twenty years before. Other treatments had backfired, the side effects outweighing any benefit.
It’s understandable that doctors pay more attention to health concerns that they feel they can treat effectively. But when the physician’s only tool is a diagnose-and-treat approach, he is at risk of being blind to the full range of a patient’s suffering. Instead of looking at the patient as a whole person, physicians often view a patient as the sum of the problems that they can recognize, diagnose, and fix.
Months later, Karen began to improve. Her skin infections resolved, her ulcers healed, and she lost much of the weight she had gained; she had a relatively uncomplicated left-hip replacement surgery and could walk without a limp for the first time in years. After a two-month hiatus, she came into the office, beaming and radiant, and the dark look of despair was gone. She was dressed with simple elegance, wearing her own handmade jewelry. I was thunderstruck. I had never, in all the years I had cared for her, seen her so energized and hopeful.
She announced that she had stopped nearly all of her medicines for pain, depression, and insomnia. She decided to leave her (second) husband and felt stronger for having done so. She had taken charge of her life and had found meaning in her existence. “What’s changed?” I asked. I was intrigued when she attributed her transition in large part to the support she’d received from me and my colleagues. I was puzzled, so I asked her again, and she said that more important than any particular treatment was that she had felt seen and accompanied—by me and others on her clinical team. She felt that she was never alone. Rather than take this as flattery, I tried to understand why. I pressed her to articulate her experience. In part, her recovery had to do with my recognizing her intentions and goals and supporting her as she tried to refocus her energies and reclaim those parts of her life that were still available to her—even when her symptoms were at their worst. Her words refocusing and reclaiming stayed with me.11 “I also like that you are realistic,” she said. “You tell me the truth about my illness, but still give me a reason to hope.” She appreciated that whenever she voiced opinions about her care, I’d consider them seriously. But perhaps most surprising to me was when she told me how she felt both frightened and reassured when I said, “I don’t know.” “At least,” she said, “I knew you were being honest.”
A SHORT, SLOW WALK
Tony Back is an oncologist and palliative care physician in Seattle.12 Together we’ve been looking at how doctors can better respond to suffering. Recently, Tony has explored what happens when physicians feel helpless. Helplessness is the dark side of the diagnose-and-treat approach—your heart sinks, you feel like a failure.
Tony points out that helplessness is angst provoking, but can also be instructive.13 The feeling of wanting to turn away and ignore that which one cannot fix can also be a warning sign: “Stop. Wait a minute. This situation demands another approach. Turn toward suffering, not away. Listen deeply so that you can know and accompany the patient and help the patient feel understood.”14 The novelist Henry James calls it placing an “empty cup of attention” between yourself and the patient.15 The physician-poet Jack Coulehan calls it “compassionate solidarity.”16 In practice, it means saying, “I want to know how you’re doing.” The point is to check in. The message for physicians is that your negative feelings—despair, confusion, fear, and angst—are an invitation to explore what irks you, to investigate what you’d rather avoid. No one likes feeling helpless. But by turning toward such uncomfortable feelings, rather than shutting them down, I become more effective as a doctor and feel more alive as a human being.
Patients value feeling supported in this way, knowing that I’m willing and able to turn toward them when they are suffering and treat them as whole persons, even under the direst circumstances, whether or not treatments have been effective. This doesn’t always require much on my part. For patients who have trouble walking or who are in pain, for instance, I make a point of walking with them the ten yards from the examination room to the reception desk. I accompany them. Granted, it takes a few extra seconds, time that I could spend doing a physical exam, ordering tests. Tacitly, I am sending a message of understanding, nonabandonment, and patience. People want to know that their doctors will accompany them in this way, even if they are only able to walk slowly. For me, that short, slow walk is a contemplative practice, not unlike the Zen practice of slow-walking meditation that punctuates periods of sitting. I become an empathic witness to patients’ suffering.
Turning toward suffering means seeing each patient as a person. I come to know what is unique about her, what strengths she has, why she goes on fighting the illness, what underlies her tendency to become dependent on narcotics. Turning toward suffering is “looking into the patient’s eyes”17 rather than just at the diseased body part or a computer screen, entering the landscape of her suffering rather than being a detached observer. Practically speaking, I ask patients about their day, what they can and cannot do, and what their kids need to help them with. These questions don’t take long and give me a glimpse of what life is like and what matters most; they often provide clues to the diagnosis and how I can help.
As physicians, we expect patients to tell us when they are suffering and what it’s like. But many don’t. Instead, patients assume that if something is important, the doctor will ask, or that we don’t want to hear, or that we’ll think they’re complaining or being too demanding. Mindful of patients’ reticence, my Rochester colleague and mentor Tim Quill teaches clinicians to ask patients routinely, “What’s the worst part of all this?” Rather than presumptuously assuming that he understands, he might say, “I can only begin to imagine . . . ,” then he’ll ask for more details. Sometimes, at the right moment, he stays silent, letting the patient know that some things cannot be spoken but can nevertheless be shared.18 Tim is matter-of-fact, open, curious. His willingness to ask indicates that he has something to learn about the patient’s suffering from the patient herself, and that he will be able to tolerate what he hears.
Clinicians get little training in how to step out of the comfortable role of diagnostician and accompany patients in this way. Accompanying is particularly important with the patients I don’t understand and those who, on the surface, I don’t particularly like—those who yell at me, don’t tell the truth, or complain then reject the help I offer. Like anyone else, I can feel angry and frustrated, but trying to understand patients in a deeper way—truly seeing them—usually makes caring for them less difficult. When being mindful, I recognize that my irritation is, in part, a signal that I don’t understand them—or myself—well enough. My capacity to respond to the suffering of any patient depends on how well I can recognize that my imaginative projection of what the patient is experiencing is just that and no more.
I first learned about this kind of projection during my residency when I was caring for a nineteen-year-old who was on a ventilator in the ICU. He had been diagnosed with meningitis and had complications that included pneumonia and respiratory failure, a scenario with about a 50 percent mortality rate. Gradually, he recovered. He became more alert well before he could be taken off the ventilator and began writing notes. He seemed to tolerate frequent blood draws, suctioning, and invasions of his privacy. He was engaging and had a sweet smile that won the heart
s of the medical and nursing staff. He won my heart too. Every day that he was doing well, I felt energized; with each setback, disheartened. I would dream about him at night—anxiety dreams (Oh, no, I forgot to check his potassium. . . .) as well as redemption dreams (imagining him playing soccer, free from any signs of disease).
When the tube came out, he could talk again. He still had that same sweet smile, but he was not the person I had imagined. He was immature, demanding, and ungrateful, treating his parents and the staff poorly. He demanded more and more narcotics, perhaps enjoying the brief high they produced. He complained incessantly about the food (here, I did have some sympathy). I was disillusioned. He didn’t seem to be following the script—he wasn’t the kind, grateful, thoughtful kid I had imagined him to be.
Then I realized to my dismay that I had fabricated an identity for him, an image that hardly any nineteen-year-old could live up to. I was overinvolved. I began to wonder why, then realized that my fabrication obscured a deep fear I had. He was not that far from my own age, and his near-death experience reminded me of the tenuousness of life, the fragility of health. I created a story so that I didn’t need to see his vulnerability, or my own.
REFOCUSING AND RECLAIMING
People who are ill seek to make sense of their experience. At the end of life, people who have been disconnected from family often wish to reconnect. Pride, money, and achievements often matter less. People often construct illness stories that give value and honor to the experience of having been ill.19
With illnesses that are chronic, debilitating, or difficult to explain, some—but not all—patients seek meaning and coherence. Amid the terror of decline, these patients are uninterested in merely coping; they seek to thrive despite the brutality and unpredictability of their disease. While I believe that few people truly feel grateful for having contracted a serious illness, some feel grateful for the lessons and courage that illness has given them. They feel that they’ve grown. Witnessing these realizations brings tears to my eyes; I feel a sense of privilege when I see patients refocusing and reclaiming their lives.
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