The terms ‘existential medicine’ or ‘life medicine’ as I also term it, have a very direct meaning in relation to what is taken as medicine today – biological medicine or ‘biomedicine’. For the reality is that from the perspective of biomedicine the patient neither exists as a human being, nor is seen or understood as having any life beyond the life of his or her body. This is not a philosophical claim but one attested by countless patients’ experience of the way they are treated by their physicians, i.e. precisely not treated as human beings with real lives and therefore effectively just treated as living corpses.
In the case of chronic illness, this paradox of the ‘non-existent patient’ is exacerbated by the way in which even the patient’s lived bodily experience of illness – and of its daily effects on their lives – is something which physicians almost never acknowledge or take any interest in, let alone seem capable of showing the least bit of empathy for, clad as they are in the emotional armour of ‘clinical distance’ that has been drilled into them through their training as the only proper and ‘professional’ bearing to maintain – one which reduces both patient and illness to a mere anonymous ‘case’ to be ‘managed’. It should not need emphasising what effects this very bearing has on the health of the patient, both physical and psychological, given the experiential, emotional and existential quarantine it places them in and the loneliness this creates. In contrast, no one has more articulately acknowledged or given more vivid examples of patients’ daily lived experience of illness – not least chronic illness – than Arthur Kleinman has in his book entitled The Illness Narrative – Suffering, Healing and the Human Condition. Almost the entire book would need to be cited to do justice to it in this regard, so I must restrict myself to a selection of just a few sections from it:
“The undercurrent of chronic illness is like the volcano: it does not go away. It menaces. It erupts. It is out of control. One damned thing follows another. Confronting crises is only one part of the total picture. The rest is coming to grips with the mundaneness of worries over whether one can negotiate a curb, tolerate flowers without wheezing, make it to the bathroom quickly enough, eat breakfast without vomiting, keep the level of back pain low enough to get through the workday, sleep through the night, attempt sexual intercourse, make plans for a vacation, or just plain face up to the myriads of difficulties that make life feel burdened, uncomfortable, and all too often desperate. It has always seemed to me that there is a kind of quiet heroism that comes from meeting these problems and the sentiments they provoke, of getting through each day, of living through the long course with grace and spirit and even humor; sick persons and their families understand the courage, even if most others do not.
Chronic illness also means the loss of confidence in one’s health and normal body processes. The asthmatic can no longer count on unobstructed breathing or a quick end to a fit of coughing. The epileptic lives under the very point of the sword of Damocles, uncertain when a fit will come. The sufferer of chronic sinusitis goes from partially blocked nasal passages on one side to some obstruction on both sides, then to completely stopped up nasal passages with fullness, pounding in the ears, and mouth breathing – which interferes with sleep and causes air swallowing and its effects (gas, abdominal cramps). The sick person intervenes with nasal inhalers or oral decongestants. The former are transiently useful, but over time have less effect and may produce rebound sinus congestion. The latter may produce abdominal discomfort and lethargy, and they may worsen asthma. Each time the cycle of symptoms begins, the sufferer loses faith in the dependability and adaptability of basic bodily processes that the rest of us rely on as part of our general sense of well-being. This loss of confidence becomes grim expectations of the worst, and, in some, demoralization and hopelessness.”
For the chronically ill, details are all. To cope with chronic illness means to routinely scan minute bodily processes. Attention is vigilantly focused, sometimes hour by hour, to the specifics of circumstances and events that could be potential sources of worsening. There is a daily quest for control of the known provoking agents. Enervating decisions must be made about when to initiate or terminate an activity, when to move from base line medication to second level drugs, and when to seek professional help. And all this occurs in the context of active lives that are filled with the same pressures, threats, vagaries, and exultations that make of normal living such a “blooming, buzzing confusion” (James  1981, 462). Is it any wonder that exhaustion is one of the common shared experiences of chronic illness?”
It is in the context of the patient’s lived experience of illness, together with its effects on their lives and social relationships, that there arises what is all too often an almost wholly unseen or unheard need for psychological and psychosocial support and understanding – not least given the common experience that chronic illness, whether terminal or not, can often have a morbidly demoralising effect on the patient’s relation to life as such – and even contribute to their premature death.
“…there is a controversial body of medical and anthropological literature on psychogenic, self-willed, and voodoo and magical deaths, which suggests that individuals can come to believe that they are socially dead – a belief shared by their social circle – and can die in a psychophysiological reaction. Engel (1968;1971), conducting research at the University of Rochester, has identified in patients with serious chronic illness a complex of “giving-up, given-up” that correlates with unexplained sudden death. Hacket and Weisman (1960; Weisman and Hacket 1961), working at Massachusetts General Hospital, found that surgical patients who strongly believed they would die in fact died much more frequently than other surgical patients … In my experience, fear of dying … is common among the chronically ill and their families. For many patients with chronic illness the fear comes as vague, amorphic ruminations that are crystallized when patients enter a terminal stage of their disorder or when there is a severe exacerbation of symptoms. It is important to remember that most patients with chronic illness do not have an acutely life-threatening problem and that many, perhaps most, will not die of their chronic illness. Indeed, there is an old saying among clinicians to the effect that nothing is as effective at teaching a person how to live a long life as the experience of chronic illness. For some patients, convictions of dying or giving up are not delusional perceptions of their current situation, but rather perhaps early premonitions and remarkably sensitive recognitions of mortal, though subliminal, bodily changes. In the gray zone of serious but not life-threatening chronic illness, such perceptions may be accurate reflections of extraordinary psychophysiological sensibility. For most, however, such a sixth sense responds to emotional reactions, personality type, life situation, and even cultural background (for example, Jews have been shown to be more fearful of symptoms and the threat of death than Old Yankees) (Zborowski 1969; Zola 1966). If there is a single dimension of illness that can teach us something valuable for our own lives, then it must be how to confront and respond to the fact that we will all die … There is no better example of what I mean than the sick person’s coming to terms with death.”
The patient’s experience of demoralisation – not just through illness itself but through empathic failure on the part of physicians, lends great appropriateness to Kleinman’s use of the term Remoralisation to suggest the aim of a wholly new type of “medical psychotherapy” – akin to what I call Life Medicine. By ‘medical psychotherapy’ he did not mean any standard or standardised form of therapy – and certainly not psychiatric treatment of a sort which pathologises a patient’s possibly quite morbid or death-preoccupied psychical states – but rather a type of therapy which instead recognises patients’ needs for psychological understanding and psychosocial support as something no less and in some ways even more important to their health, both psychological and physical, than any form of biomedical care and treatment (which is anyway usually given in clinical settings wholly alien to and separate from the intimate context of the patient’s own personal life – therefore further alienating the patient from that life). However, as Kleinman writes on ‘Remoralisation’:
“Instilling or rekindling hope in the chronically ill patient (and often in the family, too) is an essential, though poorly charted, clinical domain. Of course, there are models of short-term psychotherapy. But these have not been widely translated into the care of the chronically medically ill (for an exception, see Karasu and Steinmuller 1978)… Care for the psychological needs of the chronically medically ill is a field with few markers, like those unexplored portions of the maps of ancient times that carried the ominous warning, “From here on dragons!”
The fact that even short-term counselling of any sort is usually only given as a form of ‘palliative care’ to those patients seen as terminally ill, i.e. on a fast-track to death, symbolises a complete failure to recognise and respond to the psychological dimension of illness as such – and chronic illness in particular – in a patient’s life, and that quite irrespective of however long or short that life may turn out to be. Indeed, from the perspective of Life Medicine, it may be hypothesised that illnesses becomes ‘chronic’ precisely through the persistent – chronic – failure to offer the types of ‘medical psychotherapy’ that I call ‘Life Doctoring’.
Another symbol of this failure is the way in which diagnoses of cancer in particular have become so culturally charged with morbid connotations. It is as if one particular type of disease has become artificially singled out as a symbol for the way in which illness in general can come to gradually ‘colonise’ – to invade and pervade – ever more areas of a patient’s life – doing so in the same way that cancer cells can come to ‘metastasise’ to colonise different parts or organs of a patient’s body. This symbolism would also explain the disproportionate amount of money spent on ‘cancer research’ – as well as on expensive but largely ineffective and often life damaging forms of cancer treatment. It is as if the ‘C’-word has, in Freudian terms come to both ‘condense’ and ‘displace’ important dimensions of illness as such – which continue to go almost wholly unrecognised in their significance, having to do with both the patient’s lived experience of illness and with the personal, social, economic and cultural life contexts in which it both arises and is experienced.
In highlighting such contexts, Kleinman offers a stark account of how a poor black female patient (Mrs. Flowers) suffering from a whole range of intense worries and life pressures is reduced in her clinician’s cursory medical report to a mere case of chronic hypertension, i.e. high blood pressure – one for which the ‘cure’ is simply medications and a reduction in salt intake. Kleinman’s transcript of a consultation between this patient and her physician (Dr. Richards) shows the latter’s obsessive focus on the purely bodily dimension of her condition as opposed to its life dimensions – and his complete failure to register the most obvious temporal and symbolic links between them – even when these are made quite explicit by the patient herself (and underlined in the sections from the transcript I cite below) as well as impatiently interrupting any talk about pressures in her life before she can even begin to say more about them. Kleinman introduces the transcript by describing the patient as a human being with a life outside the consulting room: being a mother of five, periodically unemployed but now working as a poorly paid waitress, having a partially paralysed mother, an unemployed pregnant daughter with a history of drug problems, a brother in prison whom she is afraid will also get involved with drugs, his 12-year old daughter who has problems of truancy and minor delinquency and, last but not least, a ‘friend’ she refers to – Eddie Johnson – in reality, her long time male companion, recently killed in a barroom brawl.
Some extracts from Kleinman’s transcript:
Dr. Richards: You said you had headaches?
Mrs. Flowers: Sometimes I think my life is one big headache. These here ain’t been too bad. I’ve had ‘em for a long time, years. But in recent weeks they been badder than before. You see, a year ago last Sunday, Eddie Johnson, my friend, you know, Uh huh, well, he died. And….
Dr Richards (interrupting): Are the headaches in the same place as before?
Mrs. Flowers: Yeah, same place, same feelin’, on’y more often. But you see Eddie Johnson had always told me not to bother about…
Dr. Richards (interrupting again and changing the subject): Have you any difficulty with your vision?
Mrs. Flowers: No.
Dr. Richards: Any other problems?
Mrs. Flowers: My sleep ain’t too good, doc. I think it’s because…
Dr. Richards (interrupting again…): Is it trouble getting to sleep?
Mrs. Flowers: Yeah, and gettin’ up real early in the mornin’. I been dreamin’ about Eddie Johnson. Doin’ a lot of rememberin’ and cryin’. I been feelin’ real lonely.
Dr. Richards: Any other problems? I mean bodily problems?
Mrs. Flowers: No, ‘cept for tired feelin, but that’s been there for years. Dr Richards, you think worryin’ and missin’ somebody can give you headaches?
Dr. Richards: I don’t know. If they are tension headaches, it might. But you haven’t had other problems like dizziness, weakness, fatigue?
Mrs. Flowers: That’s what I’m sayin! The tired feelin’, it’s been there some time. And the pressure makes it worse. But I wanted to ask you about worries. I got me a mess o’ worries! And I been feelin’ all down, as if I just couldn’t handle any more…
Dr. Richards: … Right now why don’t we do a physical exam and see how you’re doing?
Mrs. Flowers: I ain’t doin’ well. Even I can tell you that. There’s too much pressure and it’s makin’ my pressure bad.
Dr. Richards: Well, we’ll soon see how things are going.
Mrs. Flowers spells out the connection she clearly senses between pressures in her life that are getting too much for her and “my pressure” – her diagnosed hypertension. Dr. Richards clearly does not. Hence in his medical record Mrs. Flowers all but ceases to exist as a human being and reduces the worries and pressures in her life to a set of numbers. I cite from Kleinman’s record of this medical record:
39 year-old black female with hypertension on hydrochlorothiazide 100 mgs. daily and aldoment 2 grams daily. Blood pressure now 160/105. Has been 170-80/110-120 for several months, alternating with 150/95 when taking meds. Has evidence of mild congestive heart failure. No other problems.
“No other problems.” One can hardly think of a phrase that, in the context of this far from untypical medical record, more blatantly exposes the complete separation between the life of the human body and the life of the human being that lies at the very foundation of biological medicine.
Note: though biomedicine has, since Kleinman wrote his book, grudgingly come to realise the relation between ‘stress’ and hypertension, this has led to words such as ‘stress’ and ‘stressor’ becoming loose ‘umbrella terms’ – as a result of which they too grant permission to ignore the highly individual nature and meaning of events and circumstances affecting the health of specific patients and calling for recognition from physicians.