what can the doctor learn from his patient and what can the patient learn from his illness

Acta Neurochir (Wien) (1992) 119:I-6 : A c t a . . N urochlrurgxca �9 Springer-Verlag 1992 Printed in Austria

European Association of Neurosurgical Societies

Thirteenth European Lecture

Thessaloniki, Greece, February 29th, 1992

What Can the Doctor Learn From His Patient and What Can the Patient Learn From His Illness

A. J. M. van der Werf

"La Grange", St. Michel-l'Observatoire, France (formerly Academic Medical Centre, Amsterdam, The Netherlands)

Mr. President, dear Mario, Ladies and Gentlemen, I was really very surprised, when our president at the EANS reception in the Kremlin last June asked me to give the European lecture at this meeting. I wondered why I deserved that honour. In fact, it is a great honour for me to stand here before you and I thank the Ad- ministrative Council for the invitation. My only quali- fication could be that somehow I managed to get in- vited to thirteen out of the seventeen European training courses held thus far and to some Pan-Arab courses, although I have never been a member of the Admin- istrative Council nor of the Training Committee. I cer- tainly learnt far more from the other lecturers and trainess than they may have learnt from my contributions.

in a European lecture one is supposed to d~scuss the past, the present and the future of neurosurgery. I do not pretend to be able to do this, and therefore I will deal only with my personal experience over the past thirty years. This period represents the second third of my life, since the first was dedicated to my education and training and the last until the age of ninety will be devoted to quite different activities and interests.

During the first twenty of my thirty years in active neurosurgery my work was mainly concerned with what I would call mechanistic and technical neurosurgery. In the fifties we used ventriculography to localize brain tumours. Then came angiography, at first open and

then percutaneous. This would be followed by surgery on a dangerously angry looking swollen brain. In those days neuro-anaesthesia was not well developed and dehydrating agents were not yet available. Years later, in 1966, we used for the first time the operating microscope, an instrument that we had to borrow from our ENT colleagues.

My own contributions to progress in neurosurgery were essentially reactions to particular challenges. The three most important challenges for me were craniosynostosis, next acoustic turnout surgery and third vasospasm after subarachnoid haemorrhage (SAH).

Children with severe craniosynostosis were dealt with by the creation of new "sutures" by making chan- nels between the bones. However, rapid obliteration of the defects by newly formed bone on the surface of the dura, led to clinical recurrence. In order to prevent this I started to resect strips of the full thickness of the dura. Later I realized that it was only necessary to resect the outer layer of the dura. In that way bone regrowth and recurrence of symptoms were prevented 25.

In acoustic turnout surgery our ENT colleagues con- tinued to harass us, because we did not bother about the integrity of the facial nerve. We would even burn out the internal auditory meatus. Therefore I decided to borrow their microscope and to operate with my ENT friend. In close co-operation we operated on over 250 patients with variable success in saving life, pre- serving the facial nerve and later, also hearing in some

2 A.J.M. van der Weft: What Can the Doctor Learn From His Patient and What Can the Patient Learn From His Illness

cases 7. From that time forth the microscope became an indispensable tool in our operating theatre.

In particular we used the microscope in aneurysm surgery and thereby improved our results. Nevertheless we lost too many patients from secondary ischaemia after subarachnoid haemorrhage with or without surgery. My anger and desperation that, despite an enor- mous amount of research all over the world, no solution to the problem of the so called vasospasm had been found, were expressed in my inaugural lecture "Power and Impotence in Neurosurgery". This frustration finally led to the second international workshop on SAH and vasospasm, which we were happy to organize in Amsterdam in 1979. Outstanding people like Robert Wilkins, Skip Peerless, Lindsay Symon, and Shoszo Ishii were my colleagues on the organizing committee 2s.

I am convinced that gathering together in this workshop all the best research people on one specific problem, was the begining of great progress in SAH management. Early surgery, enhanced cerebral perfusion and the use of Ca-antagonists became keystones of future management 26' 27

After the third neuroscience conference in Mainz, organized by Voth and Schiirmann in 198322 , transcranial Doppler ultrasonography, developed by Aaslid et al. 1, became available. In Amsterdam we introduced early aneurysm surgery in the Netherlands and we were among the first to use Doppler ultrasonography to detect secondary ischaemia at an early stage. These contributions represent the mechanistic and technical character of neurosurgery from my earlier period up to the eighties.

All this was very exciting, but unfortunately I had not yet won world-wide acclaim. These advances, dis- appointments and failures gradually led me to reflect more upon the interaction between the neurosurgeon, the patient, and his illness. I came to realize that "the patient is more than his disease", a statement made by Naomi Remen, a paediatrician in San Francisco who propagates a holistic approach to medicine. Body and mind are parts of a unified whole. They always suffer together. Disease may be regarded as an "uneasiness", that is a disturbance with loss of integrity of the body, the mind, or of both 17' 24

To become aware of patients' feelings and their reactions to illness was a revealing experience. More and more I realized how much I could learn from my patients and that in turn I could help them to learn from their own illness and from the very fact of being i11.

I now come to the main subject of my lecture.

What Then Can the Doctor Learn From His Patient?

If we want to learn from our patients, first we need to have an open mind. Unfortunately most medical schools do not teach students an attitude of open-mind- edness. On the contrary, they encourage us, as Siegel put it, to think of ourselves as "gods of repair, miracle workers. When we cannot fix what is broken, we crawl off to lick our wounds, feeling like failures 2~

We learn all about a disease, but nothing about what it means to the diseased; or in other words about the essential differences between disease and illness.

The second requirement for us doctors is humility and self-examination, especially of our shortcomings. By being prepared to descend from our platform, ad- mitting our failures, and showing our feelings of anger, sadness and compassion, we can demonstrate that we are vulnerable and thereby can greatly enhance contact and communication with our patients 14".

"Physicians usually know exactly what they think and believe but rarely are they in touch with how they feel". (Gordon Deckert quoted by Siegel2~

The elevated position in which doctors have been placed or place themselves makes patients very dependent. They are extremely frail and helpless. Doctors should realize the heavy responsibility they have as a consequence of this dependency, as Pasztor said in his European lecture of 198216 .

Recovery from and coping with illness depend upon the combined efforts of patient and doctor and they rely as much upon the background, personality, character and inner strenght of the patient as upon the skill of the doctor. Indeed, it is the patient who may reveal to the doctors his ability to cope with illness and his inner strength.

An example for me was a 45-year-old man who for many years had suffered from headache and paraes- thesiae affecting the fight side of his body. Earlier in his life he had been a sailor and radio operator, but due to arthritis of his knees he had to give up that work. He undertook further studies and became a school-teacher. He proved to have an arteriovenous malformation (AVM) in the left cerebral hemisphere. After discussion he was operated upon and his AVM was removed. The immediate recovery was excellent, but 24 hours later he developed a huge postoperative haematoma. Despite rapid removal of the clot, he re- mained hemiplegic and aphasic for a long time.

Fearing that he would remain totally aphasic, I told his wife after the second operation - when his condition was critical - that it might be better for him

A. J. M. van der Werf: What Can the Doctor Learn From His Patient and What Can the Patient Learn From His Illness 3

not to survive. But he did survive and gradually started to speak and walk again. Now, years later, he works in the garden and looks after his bees, a hobby about which he talks with great enthusiasm despite his per- sisting dysphasia. He declares himself a happy man, able to be useful to others and enjoying what he can do and forgetting his disabilities. This remarkable man has overcome several serious crises in his life and was able to integrate adversity in his new existence. From this man I learnt my own shortcomings: that I may fail as a surgeon but not necessarily as a human being. Thus, even if our technology fails, our very presence may have healing power. Healing is an inner process, actively pursued by the patient with the help of the doctor and those near to him.

Some patients indeed have tremendous inner strength. Provided the doctor is willing and able to listen, patients can make doctors aware not only of these forces, but also of their feelings. They can express their willingness to fight on or their wish to die. They also may convey their feelings of helplessness, dependency, sorrow, anger or anxiety. They may tell the doctor how they feel about the hospital, the nurses, and the medical staff and how they had wanted to be kept informed 6.

By listening to patients we realize once more that there is a person with a disease and not just a disease.

A physical manifestation of a disease may have a symbolic significance. For example, a patient of Naomi Remen had dyspnoea due to inhibited respiration. It came to light that she felt oppressed and inhibited by her domineering husband 18.

The way the patient experiences his illness can teach both the doctor and the patient about the nature of the disease. At the same time the patient is a mirror in which we doctors see reflected our own behaviour and personality.

What Can the Patient Learn from His Illness?

Not all patients are able or willing to learn from their illness. Many simply wish to be left alone, to be immersed in their illness or to let themselves die, sub- consciously or even consciously as a means of escape from problems in their life. Siegel estimated that some 10 to 20 per cent of all patients behave in this way. The great majority of patients, 60 to 70 per cent, want to act in order to please their doctor. They seem to be satisfied and show no initiative to change their life- style or to accept any responsibility for their own fife, their health or cure. The remaining 15 to 20 per cent

Siegel calls exceptional 2~ I doubt whether they are that few, because many patients may become exceptional. They have the inner quality to help themselves. The doctor may be in the best position to stimulate them. Exceptional patients are those who have greatest self- respect, self-awareness and other indications of ego strength. These people not only cope best with severe disability and crisis such as paraplegia but they are also the most likely to "benefit" from their illness and thereby enrich themselveslS. The process of reaction to an acute crisis such as a traumatic lesion or a disease is schematically represented by Naomi Remen 18. It reads as follows:

No attention for and even ignorance of one's own needs, values are unclear and may be contradictory.

Behaviour is unintelligent and wrong choices are made. There is spain and suffering.

Attention begins to be directed to the underlying causes of the illness and an attempt is made to under- stand these.

Perspectives become wider, understanding is improved, values become clearer.

Choices and actions are re-evaluated and reconsi- dered.

Selection of alternatives and behaviour become more intelligent.

Pain diminishes or becomes more bearable, the patient feels more healthy.

Naomi Remen describes three stages in the process of learning represented by an open spiral 18 (Fig. 1). This process is often subconscious. Some patients experience it only later, retrospectively. Others may become aware of it or can be taught to become aware of it and in this way can actively co-operate.

In the first stage the illness dictates the inevitable changes in the patient's behaviour and in his daily life. This may lead to frustration and anger, even to revolt, but also to severe depression. It may be that for the

directed attention j ~ ~ understanding ives --I ~

~ ' ~ enriched daily lifo

[former daily life i ~" phase 1

Fig. 1. Process of learning after an acute crisis according to Naomi Remen


first time the patient feels unable to control his life, his occupation. He feels totally dependent and regards this dependency as a sign of weakness.

This phase may offer an opportunity to learn to receive and to accept help, attention, and care from others. The patient may discover that these needs are also an essential part of him. This can be an enriching experience.

During this stage it is important to allow patients to feel ill. Thus they may recognize the needs of their body that has become closer to them. They may learn to give more attention to themselves, but many will need time to adapt to this first stage of a crisis.

The second stage can be characterized by the will to assume responsibility again for one's own life. Patients start to direct attention outwards. If they feel physically or mentally changed after the crisis, they may wonder how other people will react to this change and they will search for an appropriate attitude to face these reactions in others. This assumption to responsibility and self-determination may encourage patients to change some of their habits. At the same time they may discover other values and objectives in life. Thus by searching for reasons for their illness they may discover themselves and become more conscious of their behaviour in the past.

Patients may realize how they have maltreated parts of their body: their stomach, their heart, their spine or their limbs. During the acute stage, they are often angry with that particular part of the body, resulting in neg- lect, but sometimes, even in openly uttered insults like "that rotten stomach, that paw, that flail...". This may signify open rejection or subconscious denial of disease. The illness may also be linked to some unsolved problem in the past and the illness itself may be ignored. In fact, the healing process requires acceptance of the diseased part of the body as an integral part of the whole person. It may help the patient if special attention is given to, for example, a limb by self-massage, electric stimulation or application of warmth.

A young woman of 22 suffered from dizziness and hearing-loss on one side. An acoustic neurinoma was suspected. Computer tomography showed a medium sized ttmaour in the cerebellopontine angle with en- largement of the internal auditory meatus. Surgery was carefully discussed, which included the risk of at least a temporary facial palsy. For this attractive young woman the thought of facial disfigurement was fright- ening. She said that she would no longer be herself if such a complication occurred.

Confronted with her own idea that her identity might consist solely of a pretty face, she was encouraged to reflect on her true personality. She then accepted surgery. Total removal of the turnout was obtained with preservation of facial nerve function. However, a few days later she developed a progressive facial weakness which subsided only after many weeks.

Thus this attractive woman had the opportunity through her serious illness to discover her real and most valuable personality and who she really was. She also became aware of her inner forces and her strength to cope with adversity.

Patients in the second stage of coping with their illness often discover values beyond full physical health. Through this they increase their self-respect and self- confidence. They become aware that values are relative and they accept the inevitable burden of their disease. They begin to listen again to friends and relatives and become interested in others. Patients try to find oc- cupations which will help others and they develop social activities. They may become more tolerant and more serene. Nature and surroundings and minor events of life are more appreciated. Attention is directed outwards to sounds of birds, music and to colours of fields and skies.

The most powerful lessons come from one's own experiences. My moment of truth came about from a skiing accident in which I broke both my legs. I was fortunate to have the opportunity during a two and a half month stay in hospital to experience the stages of coping which I have described. Anger, despair, revolt, pain, helplessness, dependency: all these feelings alter- nated. Active participation in recovery, however, and directing attention to the outside world, taking more and more responsibility for my own existence and activities lessened the pain and discomfort. Awareness and analysis of some negative feelings towards nurses and doctors revealed much of my character.

Another example: A 68 year old man was operated on twice for a cervical syringomyelia with cyst for- marion. He was severely disabled and suffered from pain and sensory loss in both hands and over the trunk; his hands were weak. After surgery he received exten- sive physiotherapy. He became very depressed, felt use- less to society and a burden to himself. It took many years of long talks, medical and psychiatric treatment before he agreed to concentrate upon what he was still able to do instead of complaining of his disability. Now, after six years, he has found a purposeful meaning to his life. He cares for children in his town district and

A. J. M. van der Werf: What Can the Doctor Learn From His Patient and What Can the Patient Learn From His Illness 5

in spite of further neurological deterioration he is able to walk erect and even to smile. This man, after a long fight, has finally regained a meaningful existence and is happy with the inner forces he has discovered.

The way in which patients with a spinal cord lesion cope with their handicap has been studied by many authors 6, 15, 2t. The more life threatening the acute epi- sode, the more often is the ability to cope later, of greater quality.

Therefore patients with high cervical cord lesions are generally grateful that in the acute stage they were treated actively and they are glad to be alive. These are the most active patients in rehabilitation centres. They want to be useful to others and they undertake many social activities, many acquire a new attitude to their life and new perspectives. Some even talk of a cord transsection as a "medicine". This is particularly true for patients who attempted suicide as a result of reactive depression and not of a severe psychotic dis- order. They now have concrete goals for which they can strive and activities that can be rewarded by results. All paraplegic patients agree that they appreciate much more what they experience around them and that they enjoy their social contacts 15' 23.

Many patients, in particular those who are faced with a life threatening disease, not only question the meaning of and the reasons for their illness, but they look beyond this question. They give more thought to the very meaning of their life and of life in general.

Some patients with malignant brain tumours re- consider their existence and embark upon a new, more meaningful life. They know they have little time before them.

This third phase in the coping process as described by Naomi Remen is reached only by a few exceptional patients. They may obtain transpersonal insight, a kind of vision like a sudden enlightment which guides them to new purposes and meanings. Priorities and goals are re-evaluated. Some experience a change in the significance of their health itself. Health becomes for them a means by which they can live and work for others rather than it being a goal in itself.

Recently I met an elderly man who after a heart attack was in coma for several days. He remembers having seen a bright light and having experienced a deep feeling of love. Since then he has re-orientated his life towards helping others.

Taking up once more Noami Remen's spiral model representing life, we know that some patients never pass phase 1 and others take years to reach phase 2.

Enrichment seldom profits the patient alone, but usually also his medical carers, his relatives and friends, and even society.

Has Coping with Illness Anything to Do with the Immune System?

If some patients cope better with illness than others, is it just because they have a stronger ego and therefore feel less depressed and even enriched by their illness?

Psychotherapy, specially group therapy, makes patients feel better subjectively. But there may be more to it. Some studies indicate that cancer patients may have longer survival rates after group psychotherapy 2x. This raises an important question:

How can psychological factors have an impact on the evolution of a somatic disease?

By feeling better, patients may change their eating habits and thereby improve their physical condition and their general resistance. During the last twenty years interest has grown in the role of the immune system as a mediator between psyche and soma. This new field, now recognized as a real science, is called psychoneuroimmunology2, 4, 9

The immune system can be influenced in at least two ways: first via endocrine hormonal action directly on lymphoid tissue in lymphatic glands, liver and spleen. Secondly there is recent evidence that lymphoid organs are innervated and receive direct impulses from the brain.

Conditioning of the immune system has been a field of research in the Soviet Union for many years, ever since Pavlov's historic experiments. In western coun- tries this interest started only in the 1960s. Natural killer cells - a subpopulation of T lymphocytes - play an important role in the defence against virus infections and against tumour cell growth.

A chronic state of depression of bereavement after the loss of a beloved partner, has shown to diminish substantially the stimulation of lymphocyte proliferation 3, 19. Conditioning of the immune system therefore seems possible and may be a mechanism by which psychotherapy influences resistance against in- fection and cancer.

Speculating further, one may ask whether people with a strong personality and a very strong ego also have an exceptionally powerful immune system.

Recent animal experiments using colony aggrega- tion in rats have shown that four categories of rats can be distinguished according to their ability to cope with environmental stress: 1) dominant leaders, 2) subdomi-


nants , 3) the indolen t major i ty of subordinates , and 4)

the outcasts. The last group had by far the least de-

veloped i m m u n e system 5.

Recent studies in m a n have shown that certain per-

sonali ty styles may enhance or diminish i m m u n e re-

sponse. I m m u n e funct ion has been tested by the mea-

surement of total salivary i m m u n o g l o b u l i n A secretion

and of the n u m b e r and activity of Na tu ra l Killer cells 10, 1l, 12

Fur the r research in m a n is necessary to determine

whether so called "except ional" pat ients have a more

powerful i m m u n e system which allows them to cope

better with crisis and illness.

F r o m those thoughts and observat ions we may ask

ourselves as did the editor of The Lancet: " W h a t is the

clinical impor tance of a l ink between the emot ions and

immuni ty? The answer is that counsel l ing in the acute

phase of disease and psychological suppor t in the

chronic may be as impor t an t for the outcome as m a n y

other therapeut ic measures current ly used. The relat ion

between emot ion and i m m u n i t y may prove to be an-

other s t rong a rgument for a re turn towards 'whole-

person ' medicine 8''.

At tempts to in t roduce a more holistic approach into

the undergradua te medical cur r icu lum were ini t iated

already before 1920 by Ado lph Meyer at John ' s Hop-

kins. Today some medical schools see a revival of in-

terest in humanis t ic and psychosocial aspects of illness

and health care among teaching p rog ramme directors,

s tudents and young physicians. Unfo r tuna t e ly they are

still very few in number . Therefore I believe that in the

future a biopsychosocial approach in medicine should

take an equal place alongside today 's d o m i n a n t

b iomedical concept of disease 9.

References

l. Aaslid R, Markwalder ThM, Norner H (1982) Non invasive transcranial Doppler ultrasound recording of flow velocity in basal cerebral arteries. J Neurosurg 57:769-774

2. Ader R, Felten D, Cohen N (eds) (1991) Psychoneuroimmu- nology. Academic Press, New York

3. Bartrop RW, Luckhurst E, Lazarus L etal (1977)Depressed lymphocyte function after bereavement. Lancet 1:834-836

4. Biondi M, Kotzalidis GD (1990) Human psychoneuroimmunology today. J Clin Lab Anal 4:22-38

5. Bohus B, Koolbaas JM (1991) Psychoimmunology of social factors in rodents and other subprimate vertebrates. In: Ader R, Felten DL, Cohen N (eds) Psychoneuroimmunology. Academic Press, New York, pp 807-830

6. Braakman R, Orbaan IJC, Blaauw-van Dishoeck M (1976) In- formation in the early stages after spinal cord injury. Paraplegia 14:95-100

7. Devriese PP, van der Werf AJM, van der Borden (1984) Facial nerve function after suboccipital removal of acoustic neurinoma. Arch Otorhinolaryngol 240:193-206

8. (1985) Editorial. Emotion and immunity. Lancet 2:133-134 9. Engel GL (1977) The need for a new medical model: a challenge

for biomedicine. Science 196:129-135 10. Houldin AD, Lev E, Prystowsky MB etal (1991) Psychoneu-

roimmunolgy: a review of literature. Holistic Nurs Pract 5 (4): 10-38

11. Jemmott JB III, McClelland DC (1989) Secretary Ig A as a measure of resistance to infectious disease. Comments on Stone, Cox, Valdimarsdottir and Neale (1987). Behav Med 15:63-70

12. Jemmott JB III, Hellman C, Locke SE etal (1990) Motivational syndromes associated with natural killer cell activity. J Behav Med 13:53-73

13. O'Leary A (1990) Stress, emotion and human immune function. Psychol Bull 108 (3): 363-382

14. Lobo Antunes J (1987) Teaching and learning neurosurgery. Eighth European lecture. Acta Neurochir (Wien) 86:69-74

15. Orbaan IJC (1981) Ondanks alles. Welke factoren zijn van invloed bij de verwerking van een traumatische dwarslaesie? Thesis Rotterdam Krips Repro Meppel

16. P~isztor E (1982) Some aspects of personality of the neurosurgeon. Third European lecture. Acta Neurochir (Wien) 65: 141- 152

17. Remen N (1975) The masculine principle, the feminine principle and humanistic medicine, case studies and methods in humanistic care. Institute for the study of humanistic medicine, San Francisco

18. Remen N (1980) The human patient. Anchor Press Double Day, New York

19. Schleifer SJ, Keller SE, Camerino M etal(1983) Suppression of lymphocyte stimulation following bereavement. JAMA 250: 374-377

20. Siegel BS (1986) Love medicine and miracles. Anchor Brendon Tiptree

21. Spiegel D, Bloom JR, Kraemer HC, Gottheil E (1989) Effect of psychosocial treatment on survival of patients with metastatic breast cancer. Lancet 2:888-891

22. Voth D, Gless P (1984) Cerebral vascular spasm. De Gruijter, Berlin

23. Vrancken PH (1982) Involved van handicaps op het relationeel functioneren. Interne puplicatie. De Hoogstraat, Leersum

24. Vries MJ de (1986) Crisis en transformatie. Lessen van won- derbaarlijke pati~nten. Med Contact 41:751-756

25. Weft AJM van der (1977) Craniosynostosis a new operative technique. Clin Neurol Neurosurg 80 (2): 70-81

26. Werf AJM van der (1986) Spasme vasculaire et ischrmie crrr- brale apr6s hrmorragie m~ningre par rupture an+vrysmale. Neu- rochirurgie 32:1-22

27. Werf AJM van der, Dreissen R, Hageman L etal (1987) Man- agement of subarachnoid hemorrhage. Experience with 360 patients (1980-1986). In: Suzuki J (ed) Advances in surgery for cerebral stroke. Proceedings International Symposium on Sur- gery for cerebral stroke, Sendal 1987. Springer, Berlin Heidel- berg New York

Correspondence and Reprints: Prof. Dr. A. J. M. van der Weft, "La Grange", Saint MicheM' Observatoire, F-04870 France.

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