{"id":47619,"date":"2020-05-26T11:03:29","date_gmt":"2020-05-26T10:03:29","guid":{"rendered":"https:\/\/blogs.bmj.com\/bmj\/?p=47619"},"modified":"2020-05-26T14:35:48","modified_gmt":"2020-05-26T13:35:48","slug":"richard-smith-healthcare-not-only-fails-to-respond-to-suffering-but-often-makes-it-worse","status":"publish","type":"post","link":"https:\/\/blogs.bmj.com\/bmj\/2020\/05\/26\/richard-smith-healthcare-not-only-fails-to-respond-to-suffering-but-often-makes-it-worse\/","title":{"rendered":"Richard Smith: Healthcare not only fails to respond to suffering but often makes it worse"},"content":{"rendered":"

\u201cThe test of a system of medicine should be its adequacy in the face of suffering,\u201d writes the physician Eric J Cassell in his book <\/span>The Nature of Suffering and the Goals of Medicine<\/span><\/i><\/a> published in 1991.\u00a0<\/span>He continues: \u201cThis book starts from the premise that modern medicine fails that test.\u201d<\/span><\/p>\n

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 \u201calmost a taboo word\u201d in medicine, said Paquita de Zulueta, president of the open section of the Royal Society of Medicine.<\/span> \u201c<\/span>Suffering is more taboo than death,\u201d 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.<\/span><\/p>\n

I might add that since starting at medical school in 1970 this was the first time that I\u2019d been part of a discussion on suffering.<\/span><\/p>\n

Persons not bodies suffer<\/b><\/p>\n

Almost every speaker mentioned Cassell\u2019s \u201cThe Nature of Suffering and the Goals of Medicine,\u201d which started life as a paper in the <\/span>New England Journal of Medicine<\/span><\/i><\/a> in 1982.<\/span> Persons not bodies suffer, argued Cassell, and Western medicine has concentrated on bodies and diseases not persons. This is nothing new: \u201cThe 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\u2014in this sense, what can be seen, touched, or measured\u2014is more important than what is subjective\u2014inwardly felt, sensed, or intuited\u2014goes back to the origins of Western scientific medicine in classical Greece.\u201d<\/span><\/p>\n

Science can cope with bodies and disease, but not with personhood, which cannot be neatly defined and measured and is by definition subjective. \u201cThe 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\u2014perhaps most people\u2014still believe that different persons with the same disease will have the same sickness.\u201d Cassel continues: \u201cThe 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\u2014objective and measurable. From this perspective suffering and its dominion in the sick person are themselves unreal.\u201d<\/span><\/p>\n

What is suffering?<\/b><\/p>\n

Cassell defines suffering \u201cas the state of severe distress associated with events that threaten the intactness of person.\u201d It is not simply pain or depression, although both can cause suffering.\u00a0 \u201cPain 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.\u201d 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.<\/span><\/p>\n

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.<\/span> The message of the 16th century work <\/span>The Dark Night of the Soul<\/span><\/i> by St John of the Cross is that you have to be broken down\u2014by the dark night, in the dark night\u2014to nothing in order to allow God to enter into your soul. \u201cHe 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.\u201d\u00a0<\/span><\/p>\n

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 \u201cOnly 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.\u201d<\/span><\/p>\n

Oscar Wilde in his book <\/span>De Profundis<\/span><\/i> written in prison spoke of the merits of sorrow and suffering, which he saw as one: \u201cClergymen 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\u2026For the secret of life is suffering. It is what is hidden behind everything.\u201d<\/span><\/p>\n

Lucas had no sympathy with this view, arguing at the meeting that suffering does not ennoble. She quoted a patient saying \u201csuffering is a bitch.\u201d Cassell is more subtle, arguing that the \u201cfunction\u201d of suffering in bringing people closer to God is \u201cat once its glorification and its relief.\u201d If what seems to the observer (the doctor) great pain or deprivation, but is helping the person achieve a \u201ccherished goal\u201d like coming closer to God then the person experiences not suffering, but triumph.<\/span><\/p>\n

The importance of understanding personhood<\/b><\/p>\n

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: \u201cNo 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.\u201d<\/span><\/p>\n

Personhood cannot be broken down into constitute parts, but Cassel does identify some aspects of personhood: \u201cAll the aspects of personhood\u2014the lived past, the family\u2019s 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\u2014 dimension\u2014are susceptible to damage and loss\u2026<\/span> Injuries may be expressed by sadness, anger, loneliness, depression, grief, unhappiness, melancholy, rage, withdrawal, or yearning.\u201d<\/span><\/p>\n

Why do doctors not ask patients about suffering?<\/b><\/p>\n

Health professionals are more comfortable with disease than with personhood. Cassell identifies two causes for medicine\u2019s failing to identify and respond to suffering: \u201cThe 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.\u201d<\/span><\/p>\n

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\u2019s box and unable to respond adequately. The consequence, Sensky believes, is that patients are discouraged from giving voice to their suffering.<\/span><\/p>\n

The American physician Thomas H Lee, in an article entitled<\/a> \u201cThe word that shall not be spoken,\u201d also observed that clinicians don\u2019t use the word suffering and don\u2019t ask patients if they are suffering.\u00a0<\/span>He asked colleagues why and was told that \u201csuffering was not actionable,\u201d \u201csuffering is too complicated, too heterogenous,\u201d and ironically that \u201ctoo much talk about patients\u2019 suffering might distract clinicians from doing what they could to relieve it.\u201d<\/span><\/p>\n

Measuring suffering<\/b><\/p>\n

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 B\u00fcchi of the University of Z\u00fcrich he aimed to devise a simple measure of coping with illness, but the measure, PRISM (Pictorial Representation of Illness and Self Measure)<\/a>, serendipitously performs exactly as a measure of suffering as defined by Cassell.<\/span><\/p>\n

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 \u201csuffering.\u201d 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<\/a>.<\/span><\/p>\n

Responding to suffering\u00a0<\/b><\/p>\n

Responding to suffering is not a technical, but a human action, and relates to the idea of the psychoanalyst Michael Balint of the \u201cdoctor as drug.<\/a>\u201d<\/span>\u00a0Balint argued that a doctor\u2019s most powerful therapeutic tool is him or herself. By actively listening to patients and \u201cbeing there\u201d 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.<\/span><\/p>\n

Cassel agrees: \u201crecovery 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.\u201d<\/span><\/p>\n

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.<\/span><\/p>\n

Cassell\u2019s 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 \u201cin 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\u2014which is where we are today.\u201d<\/span><\/p>\n

Healthcare increasing suffering<\/b><\/p>\n

Cassell doesn\u2019t doubt that suffering is often caused by the treatment of the sick: \u201cHow 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.<\/span><\/p>\n

At the meeting Jocelyn Cornwell, the founder of the Point of Care Foundation<\/a>,<\/span> 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<\/a>. <\/span>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.\u00a0<\/span><\/p>\n

Unfortunately, avoidable suffering is common. The NHS survey of inpatients in 2018<\/a> 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.\u00a0<\/span><\/p>\n

Cornwell quoted an opinion piece by Tessa Richards, a <\/span>BMJ<\/span><\/i> editor: \u201cTwo months ago I underwent tumour ablation. The experience was harrowing although the outcome good.\u00a0 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\u2019t want to die now, not like this, not here.<\/a>‘\u201d<\/span><\/p>\n

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\u2019 emotional and physical distress, bearing bad news, dealing with others\u2019 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.<\/span><\/p>\n

Cornwell founded the Point of Care Foundation (of which I\u2019m 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<\/a>, into some 200 organisations and developed other responses to humanising healthcare.<\/span> But I think it fair to say that the NHS\u2014like other health systems\u2014has invested little in reducing the suffering of both patients and staff.<\/span><\/p>\n

In her talk Cornwell quoted W H Auden\u2019s poem <\/span>Mus\u00e9e des Beaux Arts<\/span><\/i>. It begins:<\/span><\/p>\n

\u201cAbout suffering they were never wrong,<\/span><\/p>\n

The old Masters: how well they understood<\/span><\/p>\n

Its human position: how it takes place<\/span><\/p>\n

While someone else is eating or opening a window or just walking dully along,\u201d<\/span><\/p>\n

 <\/p>\n

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\u2019m optimistic: I sense an increasing mood that modern medicine has lost its way<\/a>, <\/span>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.<\/span><\/p>\n

Richard Smith<\/strong>\u00a0was the editor of\u00a0<\/em>The BMJ\u00a0until 2004.<\/em><\/p>\n

Competing interest<\/strong>: RS is the unpaid chair of the Point of Care Foundation.<\/span><\/em><\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

\u201cThe test of a system of medicine should be its adequacy in the face of suffering,\u201d writes the physician Eric J Cassell in his book The Nature of Suffering and […]<\/p>\n

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