Famous patients: Louis Washkansky

This week we have two more patients for our Hall of Fame: Louis Washkansky and Denise Darvall. You have probably heard of Louis Washkansky because he was famously the first person to receive a heart transplant. Of course, the more famous person in the event was Christiaan Barnard, the surgeon who performed it. And as you might have guessed, Denise Darvall was the donor.

Louis Washkansky was a Jewish man who was born in Lithuania and immigrated to South Africa when he was nine years old. As a young man, he was athletic – he played football, swam and lifted weights. He worked as a grocer. In his middle age, he became diabetic and developed serious heart disease. As his disease progressed, he was referred from one doctor to another and finally came under the care of Christiaan Barnard, a cardiac surgeon who was looking for a candidate for heart transplant. Louis Washkansky fit the bill – he was 53 years old, and was suffering from an incurable degenerative heart disease. One source quotes a conversation between them:

Dr. Christiaan Barnard asked Louis if he would be interested in having a heart transplant, although it had never been done before.

Louis said, “If that’s the only chance, I will take it.”

Dr. Barnard said, “Don’t you want to think about it?”

Louis replied, “No, no….there’s nothing to think about. I can’t go on living like this. The way I am now is not living.”

The details of how Denise Darvall’s heart became available are also well documented. She and her mother were hit by a car as they were crossing a road in Cape Town. Denise DarvallHer mother died instantly and Denise suffered irreversible brain damage. She was brought to hospital and put on life support. Her father was asked if the hospital could use her heart and kidney for other patients and he quickly gave his consent, based on his appreciation of her generosity and concern for others.

While Denise was on life support her heart remained strong. At the time, the standard for recovering organs required that the heart stopped. And so when her heart stopped, it was removed for transplant. Dr. Christiaan BarnardThere had been some mystery associated with the fact that her heart suddenly stopped, but after Christiaan Barnard died in 2001, his brother Marius revealed that Christiaan had injected potassium into her heart to paralyze it. This allowed her to be declared dead, so that her organs could be harvested.

The transplant operation went well and the new heart began to beat on its own once it was restarted. All the major newspapers around the world announced the transplant and covered the day-by-day condition of Louis Washkansky.

Louis Washkansky

Barnard was very concerned about rejection of the foreign heart – had the heart been rejected, his operation would have been a failure. To ensure this didn’t happen, he gave Washkansky especially strong drugs to suppress his immune system. His immune response became so weak that he contracted pneumonia and died 18 days after the operation. It’s an excellent example of “The operation was a success, but (unfortunately) the patient died.” Over time, post-operative care improved considerably and as we know, now heart transplants are done routinely.

Famous patients: Mickey Mantle

In an earlier blog I described the differences between first, second and third class patients. I remembered that I had done a similar piece when Mickey Mantle (October 20, 1931 – August 13, 1995), a famous baseball player, died. The story about his death appeared in the New York Times and is summarized below. It seems appropriate to place him in the Patients Hall of Fame along with Mr. Tillery, a patient whose first name we don’t have, but whose story was presented in Teddy Kennedy’s book about the American health care system. The contrast between the two cases is what should make these two patients famous. In the American health care system, almost 30% of the nation’s entire Medicare budget is spent during patients’ last years of life. (This is probably also true in Canada, lest we become complacent.) Mickey Mantle’s doctors decided to give him a second liver transplant at the age of 63, because they believed there was a 55% chance of Mantle surviving three more years.

Mickey Mantle

The hospital fee for 11 days before the operation was $32,500 (not including doctors’ fees), for assessment of his condition and for cancer tests. The results were negative and it wasn’t until the operation did doctors notice that the cancer had spread dramatically leaving Mantle only a few weeks or a couple of months to live. Had they been aware of the advanced stage of the cancer, the doctors say they wouldn’t have operated. Instead, $20,000 was spent to buy a fresh human liver, plus another $5,000 or more for the
chartered plane. Mantle spent two days in intensive care, probably costing several times the usual $1,000 a day or more that hospitals charge, then another 18 days in the hospital. With anti-rejection drugs and other medication running well into five figures, the hospital bill rose by another $116,000. More tests, drugs and a return to the hospital followed.

Mantle chose to die in a standard hospital room, virtually free of tubes and wires, so the total hospital charge therefore stayed under $200,000. But separate bills for surgeons, pathologists, radiologists, oncologists and gastroenterologists probably equaled the hospital expenses, said Michael Murphy, a health care consultant.

Although it is unclear who paid (Mantle could afford it), keeping Mickey Mantle alive for two and a half months probably exceeded $300,000, (Paraphrased from “Mantle’s Last Medical Bills” by Allen R. Myerson. The New York Times,
Sunday, August 20, 1995.) A companion in the Patient Hall of Fame is Mr. Tillery whose story is taken from Teddy Kennedy’s book on health care in the United States. We don’t have his first name or his date of birth. Nor do we have a photo of him, so we have inserted a drawing of an unknown man, but we do have the story and it is enough to put him in our Hall of Fame alongside Mickey.

Mr. TilleryMr. Tillery, who lived alone, had a complete laryngectomy at the age of fifty-six. He was left unable to speak. Just over two weeks after the operation, Mr. Tillery was sent home from the hospital. He was given a list of specific equipment necessary for his care; namely, a humidifier and a tracheal suction. Given a list of agencies where he could find the equipment, Mr. Tillery was only able to acquire a humidifier, and not a very effective one at that. The suction, he was told, would have to be rented at a cost of $20 a month. Not two days later, Mr. Tillery unable to breathe, woke a neighbor and was sent to emergency. Financially, Mr. Tillery did not have much savings, enough to last him 2 or 3 months, and the $20 necessary to rent the equipment was too much for his stretched budget which already included doctors’ bills. (Paraphrased from In Critical Condition: The Crisis in America’s Health Care, Edward M. Kennedy
Pocket Books New York, 1973.)

Famous patients: Henrietta Lacks

Henrietta Lacks is perhaps the most widely distributed patient in the history of the world. Her cancerous cells are everywhere – more than 50 metric tonnes of them have been grown in laboratories around the world and some have even been sent into space. In contrast to Eve, she has actually gained a kind of immortality.

Henrietta Lacks had cancer in 1951 and the malignant cells from her biopsy were so robust that they could be grown in laboratories. Because of this, her cells were used as laboratory material for the study of virology and they were cultured and distributed widely. No one asked her permission or even told her or her family about what they had done. Her cells thrived while she died of cancer within eight months of diagnosis. The cells, called “HeLa cells,” have been the basis of research for more than 62 years.

Henriette LacksThe world has changed. At the time of her death, the cells were so widely known that a lab assistant at her autopsy was surprised that the cells actually belonged to a real person. But it remained that no effort was made to inform her family about these still living cells until a couple decades later. Henrietta Lacks was a black woman who was being cared for as a third class patient at Johns Hopkins, a major teaching hospital. Patients like her were given excellent care but at the same time, were seen as clinical material for scientific research. It was largely assumed that there was tacit agreement by patients to accept their research role, at least partly in exchange for their care. In those circumstances, patients played almost no role in making decisions about their care or about the use of materials taken from their bodies.

In 1973, Henrietta Lacks’ family was told about the use of her cells, not because anyone thought they had a right to the information but because geneticists wanted some cells from her living relatives to do more research. Her family had to assimilate this pretty significant fact about their mother. Of course, there was nothing that could be done to curtail the distribution of HeLa cells, nor is it clear that anyone wanted to. But her family had quite strong feelings about being exploited by the healthcare system and remained suspicious of contact with it. Some members of her family wanted more information about what had happened to her cells, others wanted some compensation but they were largely ignored.

In the early 21st century, a graduate student named Rebecca Skloot became interested in the origin of the HeLa cells and contacted the family. Despite their initial reluctance, she gained their confidence over time. In 2010, she published The Immortal Life of Henrietta Lacks to introduce readers to the living person who generated the cells, and to provide an overview of the political and scientific context in which she lived and died. It is an excellent account that covers everything from the scientific significance of her cells, to a description of her family circumstances and the care she received during her illness and death.

By March of 2013, there were more than 74,000 studies using HeLa cells. Many of them are important contributors to cell biology, the development of new vaccines, and of course, cancer studies. A recent study by scientists at the European Biology Laboratory sequenced the genome of the HeLa cells. In order to complete the studies they needed cells of living members of the family, which they were given. When the results of the study were publicly posted on the internet, the Lacks family complained to the National Institutes of Health that this was an intrusion into their privacy and an agreement was reached to restrict access to the results of this and other similar studies. But there was no agreement to give the Lacks family any benefit from the commercial products developed from research on the HeLa genome.

To give you an idea of what they have not received, the legatees of A.A. Milne (1882-1956) continued receiving royalties from Winnie the Pooh, though originally copyright was meant to expire 50 years after his death. On March 4, 2001, Walt Disney paid an estimated $340-350 million for rights to the Milne royalty stream. Theoretically, the copyright (as extended) will run out in 2026, but Disney has been very adept at extending copyright protection. It emerges that as Mickey Mouse ages, the rights to his persona remain in the hands only of Disney and whenever there is an end in sight, the copyright is extended. Sometimes the often changed Copyright Extension Act is called the Mickey Mouse Act. According to the American Constitution, copyright cannot be extended forever, but it has been suggested that it will be extended for “Forever Less a Day.” One would imagine that the commercial consequences of the HeLa cell are not dissimilar in scale. Patients continue to be a free good unlike Mickey Mouse.

Eve: the first patient

Just as there is so far no history of medicine from the patients’ perspective, we have so far not compiled a list of patients who should stand in the Patients Hall of Fame.

Let’s take a break and look at some historical figures who had important experiences of illness or pain, and think about how they have contributed to our understanding of health. Just as there are famous names in the history of doctors and nurses, we might want to compile a list of patients who contributed to our understanding of health and illness. So far there is no Google list of Famous Patients and we might want to begin to compile one. There is little doubt in our mind that patients have made significant contributions to history.

Eve is the first person to come to mind. We understand that while in the Garden of Eden, Adam and Eve did little work. They were never hungry, but more than that, they were never sick and they felt little pain from what I can gather. The Garden of Eden was the quintessential idyllic place. In it, Adam and Eve were healthy. Not only did they not have any diseases, but our sense is that they were in “a complete state of wellbeing.” This is close to the definition of health offered by the World Health Organization: “Health is a state of complete physical, mental and social wellbeing and not merely the absence of disease.” Admirers and detractors of that definition of health have often called it an “Edenic” definition.

I often ask audiences, “how many of you are in a state of complete physical, mental and social wellbeing?” Occasionally someone admits to it, but mostly no one does. So for the WHO, health is something we strive for but rarely attain. Interestingly, sometimes the person who says that he or she is in a complete state of wellbeing also has a chronic condition, but is feeling particularly healthy that day. People with chronic conditions such as diabetes can feel perfectly healthy. Health from a patient’s point of view can very much depend on context.

Eve

Hieronymus Bosch: The Garden of Eden

As for Eve, she only became a patient when she and Adam left the Garden of Eden. God punished Adam by making him work hard for his everyday food. His punishment for Eve was to make her suffer the extreme pain of childbirth.

Eve became the first sufferer and a patient is a person who suffers first of all. And she suffered the pain of childbirth without the help of doctors or midwives.

That etymological definition of a patient is tied to a notion of being at the receiving end of things. But although it is clear that patients are people who are not healthy in the WHO sense, there is no need to declare them to be passive. In Patients Canada, we don’t struggle with the term “patient,” we embrace it and broaden it to include family caregivers and others who are close to the patient. We believe that patients and those close to them might suffer, but they can also be active partners not only in their own healthcare, but in all aspects of the system of care – in the co-design of services and in the development of policies.

Descartes and modern medicine

In his Sixth Meditation, René Descartes (1596-1650) compares human bodies to mechanical entities like clocks. “[S]o also the human body may be considered as a machine so built and composed of bones, nerves, muscles, veins, blood and skin that even if there were no mind in it, it would not cease to move in all the ways it does at present when it is not moved under the direction of the will” (Meditations on First Philosophy). This description of the mechanical body is not neutral. If the body is indeed a machine, then one can easily recognize that a “healthy” machine would be one that runs smoothly without breakdowns. Descartes himself considered that “The preservation of health has always been the principle end of my studies” (The Philosophical Writings of Descartes, 275) and because the body was a mechanism that lent itself to mechanical proof, he hoped to devise “a system of medicine which is founded on infallible demonstrations” (The Philosophical Writings of Descartes, vol. 3, 17).

Descartes

A recent book about Descartes’ medical philosophy argues strongly that this indeed is his goal and links much of his work to this point. Descartes was widely read in his day. His ideas were very influential and were soon affecting early scientists (who were then called “philosophers”) across Europe.

Viewing the body as a machine was a very fruitful way of thinking about it. The approach has led to many successes in the history of medicine, from the view of the heart as a pump, to the idea of the digestive tract as part of a food processing plant.

Descartes' SystemResearch on the biomechanical framework flourished. During the seventeenth century, Robert Hooke and Anton van Leeuwenhoek used the newly developed microscope to learn about the nature of cells. Robert Boyle initiated early studies on a large array of medical topics including respiration, digestion and the confirmation of Harvey’s demonstrations of the circulation of the blood. Thomas Willis did careful anatomical studies of the brain.

It became much more critical to investigate the body. Boyle and his medical colleagues dissected hundreds, if not thousands, of live dogs and other animals to try to learn more about the mechanics of the body. The hunt for cadavers became more intense and medical education included far more anatomical studies. John Hunter founded a school of anatomy in which part of the curriculum included dissection. Cadavers were bought, stolen and sold. Researchers and medical students were always at the scene of public executions to have access to bodies immediately after death. In the famous case of Anne Greene, medical students revived her after she had been hung for the murder of her illegitimate child.

If the body is a mechanism then one body is pretty much like another – everyone has the same organs, the same number of bones in their skeletal structure, and so on. Cartesian formulae may be applied to them. There is a standard body with a standard set of body parts. The essential uniqueness of an individual in humoral medicine began to be submerged to the understanding of a standardized body in modern scientific medicine. The search was for the general laws of the body, for formulae that applied to all bodies, and for treatments that could be turned into clear protocols for all instances of disease.

As a result, it was necessary not only to have cadavers but also live patients who could also be used as clinical material and on whom experiments could be tried. If executions and graveyards were the source of cadavers, the almshouses where the poor were housed became the source for living bodies on whom various cures could now be tested. Almshouses for the poor were gradually converted into the modern hospital. In them, poor patients were used as clinical material for medical research in return for free care (see the earlier blog on Ignaz Semmelweis, The Patron Saint of Handwashing).

Descartes, René. Meditations on First Philosophy. Edited Stanley Tweyman. Routledge. 34-40. London and New York. 1993.

Descartes, René. The Philosophical Writings of Descartes Volume III.  Cottingham, J., Stoothoff, R., Kenny, A., and Murdoch, D., trans. Cambridge University Press.

Modern medicine begins

The idea of health as a harmonious balance of humours held sway from the time of Ancient Greece and only began to be challenged during the Renaissance. Paracelsus, whose real name is worth saying out loud – Theophrastus Bombastus von Hohenheim (1493-1541), responded to the received authority of the medieval version of this ancient medicine with militant skepticism. He famously burned Galen’s books in the town square and derided the academic physicians of his day for blindly following useless outmoded practices based on the ancient Aristotle, Galen of the Roman era and the medieval Avicenna. For centuries, Paracelsus’ influence on later thinking was neglected, however it became clear in the twentieth century that he exerted a major influence on the scientific practices of the seventeenth century.

ParacelsusParacelsus considered the body to be something like a chemical retort in which food, liquids and air are processed into blood, muscle and various excreta. For him, a healthy person is someone in whom the necessary chemicals are present and the appropriate chemical reactions take place. Diseases are the result of either chemical imbalances or the introduction of poisons into the system. Once one had identified a particular disease, it would become possible to test and apply chemical treatments.

Paracelsus’ interest in the chemistry of the body was part of the long tradition of alchemy. The study of alchemy had clear objectives: to find the Philosopher’s Stone which would provide its maker with the power to transform base metals into gold and silver, and would help create the Elixir of Life – a panacea that would cure all diseases and provide eternal youth.

The techniques of alchemy are dependent on magical incantations, times of the year, but also on what later became a deep understanding of the chemicals one used and the means of combining them. A central piece of equipment was an oven that could keep molten metal at high temperatures for long periods of time – recipes for the transformation of lead into gold could take months. Many recipes were bought and sold over centuries by alchemists and snake oil salesmen. The belief in a secret tradition of esoteric knowledge was an important part of the hunt.

Francis BaconFrancis Bacon, another major influence on the development of modern science, was also deeply interested in alchemy. Bacon was a lawyer and valued the testimony of credible witnesses not only in the courtroom but also in the accumulation of scientific knowledge. He wrote about three sources of scientific knowledge: observation, experimentation and esoteric knowledge from hidden sources in the alchemical tradition. We have officially kept the first two and have formally rejected the third. But in his day, Bacon encouraged a number of things, including the observation of nature by credible, especially aristocratic, observers; the replication of scientific experiments for such observers; and finally, the collection of secret recipes for cures of all types of illness and the continued hunt for the Philosopher’s Stone. For Bacon there is value in sharing the results of observation and experimentation widely. But there is also value (and he thinks a necessity) to keep some results secret and exclusive to a select group of “virtuosi” or adepts of the scientific tradition because they might be too dangerous to circulate widely.

For a very long time, medical information was made inaccessible to patients because it was not necessary for them to know everything about their condition. Doctors could speak to each other in a Latinate scientific language that could be overheard but largely not understood by patients. Even their specialties remain somewhat hidden in this way: liver doctors are hepatologists and lung doctors are pulmonologists, dangerous  tumours became carcinomas and so on. Some scientific facts were just too dangerous or upsetting for the general public to know. Medical records were largely inaccessible to patients for the same reasons that can be traced back to the tradition of distinguishing between esoteric knowledge of the profession and the kind of knowledge that can be shared widely.

Alchemical knowledge was especially secret because a recipe to turn lead into gold had to be kept away from the public. In England in the 17th century, it was illegal to create gold in this way because of what we would now call market implications. The belief that it was possible at the time was widespread and in fact, the basis for laws.

Patient friendly doctors

In my last blog entry, I presented Maimonides’ letter to his prince. In it, we see how a medieval court physician speaks to his patient – he is mannerly, careful, gives extensive reasons for his suggested treatment, and understands why his patient might not accept it. In a way, his letter is an excellent example of how many contemporary patients would like to be treated.

The first patron of Patients Canada was the late Kate McGarrigle, the famous Canadian folk singer. She was extraordinarily well treated by her physician while she was ill with cancer, and she told me that she would agree to be our patron only if we would recognize the value of good doctors. Her doctor was in some ways reminiscent of the court doctors of old: he called her on a regular basis, was there whenever she needed him and always planned treatments together with her. Kate thought that this might be the kind of special treatment reserved for stars like her, but she hoped that it could be more widespread.

In a previous blog entry, I described the three classes of patients in most developed countries. First class patients are people who are close to the doctor or to a respected colleague, or are celebrities of some kind.

Second class patients are middle class people who have certain service expectations, such as being seen at the appointed time and being treated with courtesy.

Third class patients are listed in an Alberta Commission on privileged access: they are people with poorest access to healthcare and at times the poorest standard of treatment. They are:

  • People without family doctors, particularly those with complex medical issues;
  • People with addictions and/or mental health issues;
  • The poor;
  • Very old people;
  • People whose language at home is not English or French;
  • People with hearing or vision loss or mobility issues; and
  • First Nations communities

At Patients Canada, we discovered that treatment for what I have called “first class patients” is modeled by many physicians. We partner with the Ontario Medical Association on the Patients’ Choice Awards. Our award program goes to different communities across Ontario and ask people to nominate doctors who are especially patient friendly. We receive a large number of letters from patients and caregivers that nominate doctors and explain in great detail how these special doctors have cared for them and their families. Many of the nominations tell us about doctors who have been with their family through generations, who listen to their patients, hear what they have to say and genuinely feel for them. The winners are often described in the same way as Kate McGarrigle talked about her doctor, and how Maimonides spoke to his patient. There are doctors who treat patients as court doctors treated their princes.

We hope that the Patients’ Choice Awards will encourage many doctors to remain or become even more patient friendly. Perhaps a motto for Patients Canada might be “Every doctor a court physician and every patient a princess.”

Maimonides’ medical advice to his royal patient

In my last blog entry I declared that non-compliant patients were not new to the healthcare system. It seemed pretty clear that we can find examples of non-compliance as far back as Galen, whose diet would have killed patients if they had followed it exactly. Other examples abound.

A similar but related issue is the conflict between medical advice and religious requirements. We all know about the ethical issues that arise when religious beliefs conflict with medical directives. Prescribing blood transfusion for Jehovah’s Witnesses is only the latest of these kinds of conflicts. And the tension is very great between these competing demands. Now the law is on the side of medicine – this was not always so.

In the Jewish tradition, life preservation takes precedence over religious requirements and so there are many stories, some of them no doubt apocryphal, of mischievous Christian doctors who prescribed pork products to Jewish patients as if nothing else would cure them. There was no question of not listening to the doctor’s advice; he question was how you got the pork to the patient without contaminating the whole house. For some patients this might have been a delight, but for others it was not merely unpleasant medicine. Still, for others their religion gave them good reason for non-compliance.

It turns out Maimonidesthat not only Christian doctors made these kinds of recommendations – medieval Jewish doctors did too. Here is a complete letter from Maimonides to his royal patient. It is a good early discussion of the relation between medical advice and religious and other personal beliefs.

 

Maimonides’ Medical Letter

His servant is well aware that our Master, with his broad intelligence and profound understanding, will be able to conduct himself in the proper manner, in accordance with the previous treatise and these chapters. All the more so, when there stands before him [a physician] from whom he may request professional guidance or seek out practical instruction.

God, may He be exalted, is a witness, and His testimony suffices (Koran 4:79–81), that his humble servant’s great desire is to serve our Master with his own person and conversation, and not with paper and pen.

However, his poor constitution and the weakness of his natural faculties—already in his youth, and how much more so in his old age—constitute a barrier between him and many pleasures. I do not mean pleasures, rather good deeds, the most important and elevated of which is to serve our Master in actual practice. God be thanked for all the circumstances that befall us, the general and the particular, in the totality of existence and its particulars, in each and every individual, in accordance with His will, which accords with what is dictated by His wisdom, the depths of which no man can fathom. And God be thanked for every circumstance, whatever direction events may take.

Our Master should not criticize his humble servant for having mentioned in this treatise the use of wine and songs, both of which are abhorred by the religion. For this servant did not command acting in this manner; he merely stated that which is dictated by his profession. Indeed, the religious legislators know, as do the physicians, that wine has benefits for man.

A physician is bound, inasmuch as he is a physician, to present with a beneficial regimen, whether it is forbidden or permitted; the patient is endowed with the freedom to choose whether to follow or not. If [the physician] fails to mention everything that may be helpful, be it forbidden or permitted, he is guilty of acting dishonestly, for he did not offer trustworthy advice.

It is well known that religious law commands what is beneficial and prohibits what is harmful with respect to the world-to-come. The physician, on the other hand, instructs what will benefit the body and warns about what will harm it in this world.

The difference between religious commandments and medical counsel is that religion commands and coerces a person to do what will benefit him in the future, and prohibits what will harm him in the future, and punishes for it. The physician, on the other hand, counsels [a person] about what will benefit him, and warns him about what will cause him harm. He does not use coercion, nor does he punish; he merely presents the information to the patient in the manner of advice. And it is [the patient’s] choice [whether to follow that advice].

The reason for this is obvious. The harm and benefit from a medical perspective are immediate and clearly evident. Thus, there is no need for coercion or punishment. As for religious commandments, however, the harm and benefit that they bring are not evident in this world. The fool might, therefore, imagine to himself that everything that is said to be harmful is not harmful, and everything that is said to be beneficial is not beneficial, because these things are not clearly evident to him. For this reason religious law compels one to practice good and punishes for doing evil, for the good and evil will only become apparent in the world-to-come. All this is benevolence toward us, a favor to us in light of our foolishness, mercy upon us owing to the weakness of our understanding. This is the measure of what the servant saw fit to set before his Master and Ruler, may God grant him long years. I remain readily available to serve our Master. Thanksgiving and praise to God. (Quoted in Gesundheit et al. 425-426).

Here we have this tension being considered in the medieval period by a very articulate medical practitioner who will let the patient decide whether to accept the suggested regimen which is very much against the directives of his religion. It is hard to tell how much Maimonides is in league with his patient, but it is clear that this letter is for public consumption.

Reference: Gesundheit, B., Or, R., Gamliel, C., Rosner, F., Steinberg, A. “Treatment of Depression by Maimonides (1138–1204): Rabbi, Physician, and Philosopher.” American Journal of Psychiatry 165.4 (2008): 425-428. Web. 3 Mar 2014.

Patients and the compression of morbidity

It seems to me that living longer isn’t all it’s cracked up to be. Roger Angell, writer with The New Yorker, has provided us with a wonderful, lively and very funny description of what it is like to grow old in this day of healthcare wonders.

His hand is deformed and he says, “if I pointed that hand at you like a pistol and fired at your nose, the bullet would nail you in the left knee. Arthritis” (Angell, par. 1). He goes on to describe his other infirmities including his stents, his artificial hip, the plastic cover for the hole in his heart, and macular degeneration. He concludes, “I’m ninety-three and I’m feeling great. Well, pretty great, unless I’ve forgotten to take a couple of Tylenol in the past four or five hours” (Angell, par. 3).

If we go back to the 16th century, people lived an average of 40 years, but some of them did live to a ripe old age. There were 80 and even 90 year olds as far back as that. Thomas Hobbes (1588-1679), the famous author of the Leviathan,  died at 91.  But he, like most people of his era, began to suffer from chronic disease far earlier – his palsy began in his early 60s and he could no longer write when he was 67.

Thomas Hobbes

Hobbes was an exception: in the 17th century, most people over 40 had one chronic disease or other – many of them as a result of being exposed to an infectious disease earlier in life. Robert Boyle (1627-1691), for example, survived a prolonged fever as a child and again as a young man, and following his second bout of fever was no longer able to speak with a normal voice or write, so that much of his opus was dictated to his various secretaries over his long life. John Locke (1632-1704) was forced to take long rests in the country because of his chronic asthma which flared up in the city. Barely 10% of the population survived past 40 and the vast majority of those who did suffered from one chronic condition or other. People who engaged in manual work, like farmers and sailors, rarely could continue to work after they turned 40, if they survived that long. And what we can tell from this great distance is that they all had serious chronic conditions if they were not killed by infectious diseases.

We might say that the great advance in our time is that today most people over 65 have at least one chronic condition. That extra 25 years may be more indicative of how we are doing than the absolute numbers.

All this is to introduce the topic of compression of morbidity.

In the 1980s, a stated goal of medicine was to keep people far healthier longer and to compress the period of morbidity before death. The idea was that modern medicine would allow people to retain good health and relatively full capacity before a brief illness and death.

Roger AngellRoger Angell’s story gives us a flavor of today’s reality. Since the 1980s just the opposite has happened: there has been a prolongation of morbidity. Standard indicators identify morbidity far earlier and begin treatment with powerful medications and surgical procedures that result in far higher numbers of people like Roger Angell, who live with diabetes, treatable cancer, hypertension, stents, titanium hips and other marvels for very long periods of time.

We have then to reconsider how we think about our objectives and how we provide healthcare to such a population. And to rethink what our objectives are.

Angell, Roger. “Life in the Nineties.The New Yorker 17 Feb 2014: Web.

Do patients suffer?

The word “patient” comes from the Latin verb “patior”, that is “to suffer.” Oftentimes both illness and treatment produced suffering. In humoral medicine the goal of treatment was to re-balance the four humors (for more, read  Unpacking Galenic Medicine). As a quick review, black bile, which came from the spleen and was associated with melancholy and sadness; blood from the heart resulted in courage and hopefulness; yellow bile from the liver made one choleric and angry; and finally phlegm from the brain, which kept someone cool, calm, self-possessed and unresponsive. Everything from one’s astrological location to bad weather could impact the balance of the humors, and similarly there were many ways to re-balance them to facilitate health.

Of the many remedies, the ones we hear of most are direct actions on the humors. For example, “cupping” used heated glass cups to create a vacuum against your skin to painfully suck out excess humors from the body, blood drawing and leeches were used in response to excess sanguinity that could at times bleed someone close to death, and strong purges were also common which intended to clear the bowel and bring it into balance. Interestingly, cupping and cleansing purges continue to be used in naturopathic medicine, and bleeding only left regular medicine in the early 20th century.

There were many far more recognizable remedies. Galen himself was interested in diet and nutrition and wrote long tracts on what to eat if you were suffering from specific humoral imbalances; medications, exercise regimens, relaxation, and other common interventions were included in medical treatments of the time. Even though many of the specific compounds are no longer in use, many of their components remain in the medicines we continue to use today.

We might think of that era with a great deal of astonishment. How could such an outlandish theoretical framework last for such a long time? An interesting book written by David Wootton in this century claims that all medicine before 1880 was Bad Medicine. Wootton stresses the damaging effects of excessive treatment and that there were no real cures; in fact, much of the treatment was damaging. It was shown that one of Galen’s diet regimens not only would not lead to health, but that if followed rigorously, would most likely kill you.

Two important facts suggest that this medicine could not have been all bad. First, the formal structure of mainstream western academic medicine remained relatively stable from the time of Galen to the 19th century. Many doctors were trained and thousands of patients were diagnosed and treated in that time and some of them were, no doubt, cured. Secondly, and more important, humoral medicine is still in practice today though no longer mainstream. It appears to satisfy at least some of the needs of a large and apparently growing number of patients.

What can we learn from this?

Chaucer said, “Time heals all wounds.” Most of our minor ills just go away with time and a good doctor lets them pass in their own good time and, lo and behold, we are cured. But a second lesson begins to appear. If in fact Galen’s diet would have killed people if they had followed it closely, what emerges is that many of Galen’s patients did not follow their diets so diligently. They were, in modern terms, “non-compliant.” They like many modern patients did not adhere to the doctor’s orders.

We know today the almost 50% of patients are non-compliant (increasingly we use the expression “non-adherent”). Do we as patients think that we should simply comply? How do we partner better with our providers so that we can jointly generate a care plan that we will be able to follow?