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THE CLINICIAN AS PATIENT

A person becomes a patient out of fear of death and its concomitants.  The clinician, already initiated into knowledge of disease has at least the power to name it, to ease it some if not to cure it.  The clinician tends to feel separate from disease, not vulnerable to it as the patient is; for the patient (not the clinician) already suffers it, bears it with him as a part of himself and his life history.  The patient is subject to disease.  The clinician takes an “objective” relation to disease, to study and to understand it, perhaps to manipulate and to conquer it; the clinician stands outside disease as if it will not intrude into him even when it splashes all over her long white coat.

So, a patient is scared to death, but the clinician has learned to act fearless. 

Clinicians assiduously avoid becoming patients.  They tend to do what normal persons often do, to ignore and deny symptoms.  But clinicians can be inordinately stubborn in this regard, refusing beyond reason, even beyond feeling.  Further, when clinicians are compelled to become patients they can be inordinately contrary and truly noncompliant.

I assigned the writing of this very chapter to myself thirty years ago.  I long had known I needed a chapter on “The Clinical Team” and blamed sociologists and political scientists for not having done their homework well enough to shed light on such intricacies of human aggregate behavior as clinical teamwork is.   But the chapter on “The Clinician as Patient”, as neatly as it fit logically into the scheme of my clinical algebra, was beyond my approach.  I was quite aware I had been a failure as a psychiatric patient from the age of eight (much to the distress of my mother), but I did not understand the obstacle between me and the writing of the chapter.  (I have since approached the writing of my failure as a psychiatric patient in the essay “Let Your Mind Alone!” only under the extreme pressure of my precious child consulting with a psychoanalyst once more.)

By the time I consciously and responsibly in old age resolved to shoulder this present burden (the writing of this very chapter), I was stopped cold by the vivid hovering recollection of me in the intensive care unit as a patient a few years ago for a two or three week coma.  When I awakened I asked the simple practical question, “Why does it hurt me to pee?”  “It’s all our fault,” replied the nurse, “We should have restrained all four extremities, but we tied down only your hands, and you pulled out the inflated Foley catheter from your bladder with your toes.”  Defiant and self-destructive even in a coma—that patient must have been a doctor.

I remember a patient in the respiratory intensive care unit during my internship most of four decades ago.  (I can recall his name, as I can recall most all the tens of thousands I have had the privilege to attend, but I shall not report it here because I have my own moral scruples quite independent of the Health Insurance Portability and Accountability Act of 1996 [HIPAA].)  He was an otorhinolaryngological surgeon (“ENT man”), skilled at doing resections and reconstructions of the neck in cases of cancer.  He was himself a compulsive chain-smoker of Camel cigarettes.  A year or two earlier he had undergone a right-sided neck resection for neoplasm caused by smoking, and now was in the process of undergoing the same deforming procedure for a new cancer on the left side.  Once each hour we had to detach him from his oxygen line, lift him and his intravenous pole from his bed, wheel them out to the hallway so he could aggressively suck the smoke of one more burning Camel not through his lips but through the tracheostomy hole at the front of his neck.  (In the old days we didn’t allow even a patient who was a hospital medical staff-member to smoke in the intensive care unit proper, for there was risk of igniting oxygen; many of us did, however, smoke in the nurses’ station as we dictated our clinical notes, and we could not forbid a medical staff member from smoking at will.)

There are clinicians of health.  They promote health in their clients and in themselves.  Health is the motivator of their work.  Many of the sports medicine specialists, physical therapists and massage therapists I have worked with are of this sort.  There is long history (predating Hippocrates) of the professional clinician as athlete and as athletic trainer.  My model for this sort of clinician is Kenneth Cooper who brought the word “aerobics” to the American language.  As his patient many years before that coma from my last heart attack I sat in his office listening to his soft sympathetic voice, feeling the radiance of his angelic face, realizing he could not comprehend my driven self-destructiveness (eating chicken-fried steak and smoking cigarettes), nor could I easily comprehend his sweet but righteous exhortations to care for myself.

Clinicians of health may not be at all unsympathetic with persons as patients, but they tend to engage the patient’s willingness and wellness more than the patient’s over-determined inexorable degeneration and mortality.  Most American disease is self-imposed, the result of “life-style choices”.  Exhortations to care for oneself have little salubrious effect against compulsive destructive behaviors like anorexia, alcoholism, smoking addiction, deconditioning from sedentary lack of exercise, and such.

Clinicians of health may encourage the patient to “fight” against the disease (which defiance Bernie Siegel identified as a predictor of success in cancer patients).  Even though they emphasize choosing active health or fighting against disease, they do not easily tend to use acceptance of disease and of mortality as tools for treatment.  A very healthy clinician (robust daily swimmer) who has been open and coherent about having been a patient is our most celebrated contemporary medical writer Oliver Sacks.  In his first-person account A Leg to Stand On1 he illuminates our communal blindness in a single terse locution, “’An uneventful recovery’!  Why, recovery consists in nothing but events.”

There are clinicians who have been afflicted themselves and who have recovered.  They may emphasize health over disease, but they know first-hand what it is to live diseased.  That may strengthen effective non-verbal empathy in the clinical relationship.  It is important to consider how they see themselves as successful survivors of disease, and what attitudes they engage to help their patients.  Their attitudes seem often to be similar to those of the clinicians of health, but with an added twist of first-person authenticity tempered by the humility of a mortal who has previously faced death (and knows it still awaits).  My models of these are Leonard Shlain, Robert Gleser and Ed Whitney.

Doctor Shlain trained and practiced as a cancer surgeon.  One morning shaving he felt a lump in his neck, so he suddenly learned the terror and dependency the patient must submit to.  He asked for help but in the process of receiving it got to feel the callousness of his own professional colleagues.  (His surgeon declined to tell him the pathology report on the phone, instructed him to drive to his office straight-away so he could interpret the biopsy report face-to-face, in the process very nearly killing Doctor Shlain the patient and all the innocents along the road to the surgeon’s office).  Doctor Shlain came to deliver news as soon as possible to the patient, even by phone, for the information is the patient’s and must not be withheld.  Despite his “scientific” training, Doctor Shlain’s decision regarding treatment (whether to undergo chemotherapy) came through the symbolism of a dream (for after all, he is human, therefore he is a dreamer).  He was alive and well several decades later, having expanded his writing from the humble report of his experience as patient to a generous set of inquiries into the origins and evolution of human thought and culture.2

Doctor Gleser, then a cancer specialist, had been not only healthy but downright athletic.  When as a young man he was diagnosed with testicular tumor (much like Lance Armstrong’s disease more recently) he entered into a chain of experiences which drove him to even deeper levels of health orientation and an undying sympathy with patients (but he had to set aside the direct treatment of cancer victims).  When he encourages patients to take care of themselves he does it as a sincere fellow-sufferer as well as with the authority of expertise.  He has no need to demand obedience to doctor’s orders, but asks for kindness for the vulnerable self.3

Doctor Whitney suffered an acute episode which was treated as a psychotic break.  It resulted in his efforts to formulate broader definitions for the chronically poorly understood powerful mental state of mania which he considers contains great spiritual power.  His own pain, especially the tension between his own new understandings and those of the psychiatric establishment, contributed to his setting aside the direct care of other persons as patients, but led him to further studies of methods of application of diagnosis and treatment, and an arduous career promoting reliable scientific applications (“evidence-based medicine”), especially in work-related injuries.4

I know these men; they have continued to work arduously for the sake of patients.  Yet in some subtle ways each stepped back a bit from his previous modes of involvement with patients, as if to reserve a sliver of energy for the sake of the injured self.  I judge it a precious bit of humility where there once may have been a toughly overgrown grandiosity.

I add an example of a scenario which is not at all the same but not at all unique, the patient who becomes motivated to become the clinician.  My colleague and student Belinda Williams has suffered as a patient during many phases and episodes before she began formally to study to be a clinician.  Hers is a unique and complex story of layers of affliction prolonged over the course of her life from early childhood, too frequently directly facing death.  She has shared the need of many patients to understand and to make choices in their own disease, for as a patient her attending professionals too often were lacking in technical mastery or (especially) in willingness to pay attention to her and to include her in processes of understanding and decision-making. 

Like all clinicians, Doctor (which she is about to be) Williams came to understand the vulnerability and dependency of the patient—and to be a patient is the most demanding role in the clinical realm, the riskiest and the poorest-paid.  She was forced by her own needs to learn the concrete realities and possibilities of her conditions and somehow that has led her to seek to attend to patients in the clinician role.  (Perhaps she will someday tell us how this transformation came about.5)  In the process she became a sophisticated professional as a microbiologist and laboratory research technician (and a very good uncertified veterinarian), now completing her medical studies.  So, her experience as patient led her to become clinician, a not-uncommon circumstance.  (Another common variation:  My father had been orphaned by age ten and spent the rest of his life becoming and practicing as a clinician as if he might get his mommy back.)

However, patient reader, please recall what I have rediscovered (“To Be A Patient”), that the patient has no obligation to master the technical difficulties of diagnosis and treatment, risks interfering in clinical processes by too ardently trying to take control of them.  Veatch’s model of the patient as consumer is invalid (see “In Defense of The Oath”) simply because the patient cannot well fulfill the decision-maker role early in the clinical process.

There are some clinicians who strongly make use of acknowledgement of inexorable mortality.  Few if any promote the self-destructive escape Doctor Kevorkian has facilitated, even if they support the right of the patient to choose it; yet they don’t ignore the simple truth that all their patients eventually will die.  They may emphasize the healthiness, or at least the comfort, of accepting death as it approaches and refuse to deny dying and death as living realities.  Among these are Mother Teresa, William Duncan Silkworth, Elisabeth Kubler-Ross and innumerable others who refuse to reject unwell persons as too sick to treat.  Their purpose is not at all to promote death but to accept processes of degeneration and dying as part of life itself.  Hospice comes from these accepting attitudes.  Both promotion of growth and health and acceptance of disease require ever-expanding learning for the patient, for the clinician, and for all interested others.

Acceptance of suffering and of mortality do not represent a capitulation nor justify therapeutic nihilism.  We have but few clinicians who understand the difference between on the one hand a do-everything heroic approach I call “fix-it” medicine based in the underlying unrealistic expectations characteristic of our culture (see “Superstition in Modern Medicine”), and on the other hand what we currently call palliative medicine, a willingness to support comfort for the patient and promotion of as high a level of function as is within reach.  This is what we mean by “death with dignity”, but these are for the sake of living, not for dying.

Most clinicians, however, are oriented to disease rather than to health; they are conditioned by our culture to be clinicians of illness in the manner tersely characterized in the opening paragraph of this chapter, acting as if they feel above disease and therefore above the afflicted patient.  It seems a counter-phobic defense.  As human beings they must have been in loco patientis as much as any other person, having suffered or been dependent at least once in their lives, or having had the responsibility of being personally close to a patient—grandparent, parent, child or close friend.  Yet they tend to act toward their patients at best as shallowly sympathetic from a safe distance, safe for themselves and sterile for the patient.  Their own experience of disease may unfortunately have been kept separate from their work.

Indeed it was worse when I was a student, worse yet when my father studied medicine a generation before me, for the age of the poor simple-minded country doctor was giving way to the rigid arrogance of the “scientific” specialist and there was little humility left with which to join the patient in the fight for life or against disease.  Almost all the doctors were white males trained to believe they had power over life and death, and almost all nurses females whose training in subservience to “doctor’s orders” left them to become masters of passive-aggressive manipulation in order to protect the patient and exact revenge against the doctor.

Even though the patient or a loved one may be motivated to become a clinician, the converse is rarely manifest, that is clinicians rarely volunteer to become patients.  Often non-clinicians think or say, “You are afraid to be a patient because you know from the inside what horrid mistakes are likely to be made against you.”  Not so.  My own experience has been helplessly to watch myself make all kinds of irrational excuses to avoid having to ask any other for help; for decades it has been my ongoing struggle to try to become successful as a patient.  I suspect more often than not the clinician avoids being patient because he has such a heavy investment in the other side of this lop-sided relationship, has paid immensely to be the helper and is trained to avoid the role of helpee.  The difficulty which keeps a clinician from becoming a grateful or graceful patient is a product of ingrained role more than it is from aggravated alarm.

Clinicians are conditioned for their roles in our culture long before they are taught in our institutions of higher learning.  They have crystallized their attitudes before they enter formal training, or at least by the time they have passed their early stages of crypto-religious initiation into the secrets of the clinical professions6.  They see models of sterile haughtiness more often and more convincingly than models of humble service.  Despite many and sincere efforts to teach students realistic humility and skills in communicating effectively with frightened patients, there are just too many perverse ingrained cultural and economic factors to overcome easily or often.  These press clinicians (male or female, light- or dark-skinned, nurse or doctor or other shade of specialist) inadvertently to feign fearlessness in relation to disease.

Most clinicians are oriented to the welfare of the patient, even if they defend themselves from fear of death or contamination with glib or callous attitudes, or with myths of “specialization” (“That’s not in my area of expertise; I treat only right great toes, so you’ll have to consult a left great toe specialist for that.”)  There is much pressure in our culture and economy for clinicians to attend to their own interests rather than to those of the patient (see the chapter on clinical ethics) which leads clinicians, teams and institutions to the unvoiced but uncompromising attitude which says in behavior, “You’re too sick or too poor to be our patient.  We treat only well persons who have insurance or cash.”

How, then, can a clinician behave as a patient?  Too often with haughty feigned fearlessness, unrealistic and impractical though that may be as a stance toward inexorable mortality, toward death and its concomitants of pain, dependency and disintegration.  Because clinicians have been self-selected, elected and taught to act fearless, they are the last to be able to admit they need help, and the last to be able humbly to ask for it.

No wonder it is common knowledge that doctors make the worst patients--perhaps sometimes nosed out by nurses.


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1A Leg to Stand On, Touchstone Books, 1984

2 “Cancer is not a four-letter word” from “Personal encounters with life-threatening illness,” an essay written about 1980.  Doctor Shlain wrote several best-selling books since that first foray into writing, including Art and Physics, The Alphabet versus the Goddess, Time, Sex and Power and a latest work on the life and character of Leonardo (his namesake).  He recently died of a brain cancer likely not at all related to his earlier lymphoma.  (I think he finished that last book before he died, as I may for this one.)

3 After exiting hematology/oncology as a practice, Doctor Gleser worked in emergency medicine and especially in preventive health, serving for a time as medical director of the Pritikin Longevity Center, a pioneering regimen which was the first to manifest reversal of atherosclerotic coronary artery disease; then he developed his current preventive health clinic and research institution known as HealthMark.

4 Doctor Whitney has written about his experience as a patient, including his completed book not yet published.  See “Mania as spiritual emergency” Psychiatr Serv 1998;49: 1547-8; ”Doctors may need to go beyond medicine in mental illness” British Medical Journal, September 20, 2003; 327(7416): 682 – 682; and Mania http://members.aol.com/Annieokl/bipolar.index.html).  He serves as physician for the State of Colorado Division of Worker’s Compensation coordinating development of clinical guidelines.

5She speaks it for herself in the eloquent video:http://www.youtube.com/watch?v=5SdrSP9Cg60.

6 Dissection of a cadaver in the first term of medical study makes little didactic sense; it clearly is a way to screen initiates to see that they can overcome our taboos against intruding into another’s body, or the squeamishness which is inculcated by those taboos.

 

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