“The test of a system of medicine should be its adequacy in the face of suffering,” writes the physician Eric J Cassell in his book The Nature of Suffering and the Goals of Medicine published in 1991. He continues: “This book starts from the premise that modern medicine fails that test.”
All of those speaking at a meeting on suffering held at the Royal Society of Medicine just before the lockdown began would agree with Cassell. Suffering is “almost a taboo word” in medicine, said Paquita de Zulueta, president of the open section of the Royal Society of Medicine. “Suffering is more taboo than death,” argued palliative care physician Vivian Lucas. Clinicians rarely ask their patients directly about suffering, said Tom Sensky, emeritus professor of psychological medicine at Imperial College London.
I might add that since starting at medical school in 1970 this was the first time that I’d been part of a discussion on suffering.
Persons not bodies suffer
Almost every speaker mentioned Cassell’s “The Nature of Suffering and the Goals of Medicine,” which started life as a paper in the New England Journal of Medicine in 1982. Persons not bodies suffer, argued Cassell, and Western medicine has concentrated on bodies and diseases not persons. This is nothing new: “The distinction between the subjective, personal, and private nature of illness and suffering as opposed to the objective nature of the body and its diseases has existed in Western medicine since its beginnings in the Hippocratic tradition in Greece (450 BCE). The idea that what is objective—in this sense, what can be seen, touched, or measured—is more important than what is subjective—inwardly felt, sensed, or intuited—goes back to the origins of Western scientific medicine in classical Greece.”
Science can cope with bodies and disease, but not with personhood, which cannot be neatly defined and measured and is by definition subjective. “The idea has taken hold that the disease can be discovered, its cause uncovered, treatment accomplished, and predictions about its outcome made apart from the particular sick person. Put another way, many doctors—perhaps most people—still believe that different persons with the same disease will have the same sickness.” Cassel continues: “The dominance and success of science in our time has led to the widely held and crippling prejudice that no knowledge is real unless it is scientific—objective and measurable. From this perspective suffering and its dominion in the sick person are themselves unreal.”
What is suffering?
Cassell defines suffering “as the state of severe distress associated with events that threaten the intactness of person.” It is not simply pain or depression, although both can cause suffering. “Pain is not suffering, however, and pain relief, although vitally important, is not the relief of suffering. All around us in the contemporary world there are persons with long-term chronic illness and disability who are weighed down by their suffering, although they may not have any of the prominent symptoms that alert us to the possibility of suffering.” Cassell wrote his book before the opioid crisis in the US, and I wonder how much of that mass prescribing of opioids may be an inadequate response to suffering.
Suffering is central to most theologies, and there is a Christian tradition that suffering offers the chance to come closer to God and identify with the suffering of Christ on the cross. The message of the 16th century work The Dark Night of the Soul by St John of the Cross is that you have to be broken down—by the dark night, in the dark night—to nothing in order to allow God to enter into your soul. “He weans them from the breasts of these sweetnesses and pleasures, gives them pure aridities and inward darkness, takes from them all these irrelevancies and puerilities, and by very different means causes them to win the virtues.”
Many Eastern religions assert that the way to free yourself from suffering is through denial, fasting, and meditation, cutting yourself away from desire. The Orphic tradition in Ancient Greece believed, in the words of Bertrand Russell, that “Only by purification and renunciation and an ascetic life can we escape from the wheel and attain at last to the ecstasy of union with God.”
Oscar Wilde in his book De Profundis written in prison spoke of the merits of sorrow and suffering, which he saw as one: “Clergymen and people who use phrases without wisdom sometimes talk of suffering as a mystery. It is really a revelation. One discerns things one never discerned before. One approaches the whole of history from a different standpoint. What one had felt dimly, through instinct, about art, is intellectually and emotionally realised with perfect clearness of vision and absolute intensity of apprehension. I now see that sorrow, being the supreme emotion of which man is capable, is at once the type and test of all great art…For the secret of life is suffering. It is what is hidden behind everything.”
Lucas had no sympathy with this view, arguing at the meeting that suffering does not ennoble. She quoted a patient saying “suffering is a bitch.” Cassell is more subtle, arguing that the “function” of suffering in bringing people closer to God is “at once its glorification and its relief.” If what seems to the observer (the doctor) great pain or deprivation, but is helping the person achieve a “cherished goal” like coming closer to God then the person experiences not suffering, but triumph.
The importance of understanding personhood
Understanding suffering necessitates understanding personhood, what constitutes a person. Personhood, argues Cassell, is neither mind nor self, and he makes a statement with which most will agree: “No one believes that persons can be known with such certainty. We accept that there is always a degree of unpredictability, that the individual is unknowable.”
Personhood cannot be broken down into constitute parts, but Cassel does identify some aspects of personhood: “All the aspects of personhood—the lived past, the family’s lived past, culture and society, roles, the instrumental dimension, associations and relationships, the body, the unconscious mind, the political being, the secret life, the perceived future, and the transcendent-being dimension— dimension—are susceptible to damage and loss… Injuries may be expressed by sadness, anger, loneliness, depression, grief, unhappiness, melancholy, rage, withdrawal, or yearning.”
Why do doctors not ask patients about suffering?
Health professionals are more comfortable with disease than with personhood. Cassell identifies two causes for medicine’s failing to identify and respond to suffering: “The first is a continuing failure to accord subjective knowledge and subjectivity the same status as objective knowledge and objectivity. The second is an increasing denial of the inevitable uncertainties in medicine and a quest for certainty.”
Sensky in his talk proposed reasons why clinicians do not ask patients about suffering. Firstly, they are unsure how to conceptualise suffering. Secondly, they think that patients have highly individual (even idiosyncratic) interpretations of suffering. Cassell would surely argue that they will have different interpretations as they are different persons. Thirdly, clinicians worry that they are unlikely to elicit a simple response and may be opening a Pandora’s box and unable to respond adequately. The consequence, Sensky believes, is that patients are discouraged from giving voice to their suffering.
The American physician Thomas H Lee, in an article entitled “The word that shall not be spoken,” also observed that clinicians don’t use the word suffering and don’t ask patients if they are suffering. He asked colleagues why and was told that “suffering was not actionable,” “suffering is too complicated, too heterogenous,” and ironically that “too much talk about patients’ suffering might distract clinicians from doing what they could to relieve it.”
Measuring suffering
Another problem is the measurement of suffering. I worry after reading Cassell that an attempt to measure suffering may be an attempt to objectify suffering and bring it within the realm of reductionist science, but Sensky has thought much more deeply than me about suffering and has identified a means of measuring it. Together with Stefan Büchi of the University of Zürich he aimed to devise a simple measure of coping with illness, but the measure, PRISM (Pictorial Representation of Illness and Self Measure), serendipitously performs exactly as a measure of suffering as defined by Cassell.
The patient is presented with a white sheet of paper and told that it represents his or her life at the moment. Towards one corner is a yellow circle that the patient is told represents self. The patient is then given a red circle and asked to place it on the sheet in relation to self. The shorter the distance between the two circles the greater the “suffering.” PRISM is, said Sensky, a visual metaphor that provides a visual summary of complex personal experiences and beliefs. A systematic review of 52 studies using PRISM shows strong correlations between the score and pain, depression, and illness intrusiveness.
Responding to suffering
Responding to suffering is not a technical, but a human action, and relates to the idea of the psychoanalyst Michael Balint of the “doctor as drug.” Balint argued that a doctor’s most powerful therapeutic tool is him or herself. By actively listening to patients and “being there” for the patients, doctors can often heal without the need for drugs or tests; and even when drugs, surgery, and tests are needed, the doctor has the power to enhance their therapeutic power.
Cassel agrees: “recovery from suffering often involves borrowing the strength of others as though persons who have lost parts of themselves can be sustained by the personhood of others until their own recovers. This is one of the latent functions of physicians: lending strength.”
Suffering can be relieved by identifying the source of the suffering, changing its meaning, showing that it can be controlled and that there is an end in sight. And personhood can, Cassell points out, be enlarged in a way that organs cannot. Athletes who lose their capacity to compete through illness can discover other sources of meaning. The heartbroken can eventually find new partners. A new faith may be helpful.
Cassell’s broader point is that doctors are poor at responding to suffering because they have not recognised and studied it and have not been taught how to respond to it as they have been taught to recognise and treat disease. They must learn how to relieve suffering “in a systematic way, which means that it must be taught. Without system and training, being responsive in the face of suffering remains the attribute of individual physicians who have come to this mastery alone or gained it from a few inspirational teachers—which is where we are today.”
Healthcare increasing suffering
Cassell doesn’t doubt that suffering is often caused by the treatment of the sick: “How could it be otherwise, when medicine has concerned itself so little with the nature and causes of suffering?…It is not possible to treat sickness as something that happens solely to the body without risking damage to the person. An anachronistic division of the human condition into what is medical (having to do with the body) and what is nonmedical (the remainder) has given medicine too narrow a notion of its calling. Because of this division, physicians may, in concentrating on the cure of bodily disease, do things that cause the patient as a person to suffer.
At the meeting Jocelyn Cornwell, the founder of the Point of Care Foundation, described how Deidre E Mylod and Lee have divided suffering into unavoidable suffering associated with diagnosis and treatment and avoidable suffering associated with healthcare dysfunction. The unavoidable include pain, loss of function, and fear or anxiety associated with implications of the diagnosis for health and functioning. The avoidable include unnecessary pain associated with diagnosis or failure to treat; fear or anxiety caused by lack of coordination, information, and communication; lack of respect, and loss of dignity; loss of trust in providers, and unnecessary waits.
Unfortunately, avoidable suffering is common. The NHS survey of inpatients in 2018 found that a fifth of patients felt that they were not always treated with dignity and respect and more than a quarter did not find someone to talk to about worries and fears.
Cornwell quoted an opinion piece by Tessa Richards, a BMJ editor: “Two months ago I underwent tumour ablation. The experience was harrowing although the outcome good. I felt ‘processed’ rather than cared for. Pain relief was poor and personal care patchy. At one point I was crying in pain and very scared. I was told to pipe down. I guess I was disturbing fellow patients. But I was beyond thinking about them. My dominant, but unsolicited, concern was ‘My God, I don’t want to die now, not like this, not here.‘”
Importantly healthcare can lead to staff as well as patients suffering, and again some of the suffering is avoidable. Unavoidable suffering include exposure to others’ emotional and physical distress, bearing bad news, dealing with others’ frustration, anger, and rage, and pain associated with causing harm. But avoidable suffering includes lack of training and support to deal with emotions and psychological issues; isolation and loneliness; moral distress at not being able to do the right thing; lack of respect from colleagues; loss of trust in colleagues and the employer; and lack of information, communication and coordination due to poor process.
Cornwell founded the Point of Care Foundation (of which I’m the unpaid chair) to try and address this avoidable suffering and to lessen the suffering associated with unavoidable causes. The Foundation has introduced Schwartz Rounds, an evidence-based means to reduce distress among health workers, into some 200 organisations and developed other responses to humanising healthcare. But I think it fair to say that the NHS—like other health systems—has invested little in reducing the suffering of both patients and staff.
In her talk Cornwell quoted W H Auden’s poem Musée des Beaux Arts. It begins:
“About suffering they were never wrong,
The old Masters: how well they understood
Its human position: how it takes place
While someone else is eating or opening a window or just walking dully along,”
We are not good at perceiving or responding to the suffering of others, which may be a necessary protective mechanism. But could medicine do better? The mood of the meeting was that things were worse not better than when Cassell wrote his article in 1982, perhaps because of the relentless (and expensive) increase in technology in medicine. But, perhaps unusually for me, I’m optimistic: I sense an increasing mood that modern medicine has lost its way, and the first step to improvement is recognising failure. And it should be possible to tackle avoidable suffering caused by health system dysfunction even if it remains a challenge to respond to unavoidable suffering.
Richard Smith was the editor of The BMJ until 2004.
Competing interest: RS is the unpaid chair of the Point of Care Foundation.