Category Archives: Famous patients

Variolation: Immunity to Smallpox

 

Mary_Wortley_Montagu

Lady Mary Wortley Montagu (1689–1762)

Small pox was one of the most common infectious diseases that killed thousands in recurring epidemics. It can be traced as far back as ancient Egypt and in various outbreaks it regularly killed off large numbers of people. By the 17th Century it had recurred in many societies. Thomas Sydenham believed that small pox was best understood as a disease of passage: once you got it and survived there was no chance of getting it again. We are startled at his equanimity because there were such high mortality rates. Apparently in the 17th seventeenth and throughout the eighteenth centuries, about 60% of the population got small pox and 20% died of it: death was a much greater spectre in daily life than it is today. One of the disadvantages of living in cities was that infectious diseases spread more quickly in them, and one of the advantages was that if you survived them your immunity increased. In the Americas and Australia after the arrival of Europeans, mainly small pox, but other diseases such as measles killed many millions of indigenous people who had had no previous contact and hence little immunity to the diseases. In some cases 90% of a particular population died.

Lady Mary Wortley Montagu was the wife of the British ambassador to the Ottoman Empire and saw how the Turks inoculated people to cause a mild form of smallpox and produce immunity to the disease. The procedure was called “variolation” and was performed by rubbing powdered small pox scabs on a superficial scratch, or injecting fluid from a small pox pustule. This method had ancient roots. Lady Wortley-Montagu contracted smallpox in 1715 and bore its scars. She had her son Edward variolated in Turkey and then when she returned to England and a smallpox epidemic started in 1721 she asked her doctor, Charles Maitland, to variolate her young daughter. Maitland tested the procedure by variolating six prisoners and infecting them with this mild version of smallpox. None of them later contracted small pox. We must assume that they were in one way or another exposed to it.

Variolation was taken up by royal families across Europe but it did not spread to the general public. Lady Mary is one of the very few women mentioned in most medical histories. But despite the introduction of variolation, there was still very little understanding of the nature of infectious diseases.  Variolation was not an entirely safe procedure because one did contract a mild version of small pox: about one in every hundred people who were variolated died of the disease – a much lower percentage than the 20% who died of small pox.

 

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Medicine in the 17th Century, Cont’d

Jan_Baptist_van_Helmont_portrait

Johann Baptista van Helmont (1579-1644)

Paracelsus was the primary influence on this Belgian physician-alchemist. Van Helmont was a Paracelsian who used chemical medicines and had a strong interest in alchemy, but revised and elaborated many of Paracelsus’ positions including the nature and number of elements and his explanation of disease. His experimental work included attempts to show that water was an even more basic constituent of matter than Paracelsus’ three philosophical principles of sulfur, mercury and salt. In one famous experiment he planted a willow seed in 100 kilograms of earth, added only water for several years and found that the tree now weighed 75 kilograms while the weight of the earth did not significantly change. Van Helmont denied the explanatory value of Aristotelian final causes but believed something quite similar. The seed contained an archeus, a kind of spirit that could transmute water into willow. He held that there were many different kinds of archei each functioning in this seed-like way. In the body they transmuted food into blood through a process of digestion or fermentation. As external agents archei could enter the body to cause disease by a process of putrefaction. Much of van Helmont’s experimental laboratory work reduced various substances to discover the gases that contained their archei and to produce medicines to counteract their effects.

Van Helmont’s search for the Philosopher’s Stone was an attempt to find the ultimate seed, one that would transmute base metals into gold, but more importantly would function as a panacea by finding a spirit that could cure all ills. His methods, like those of Paracelsus were dependent on mystical visions as well as laboratory experiments. A step toward finding the Philosopher’s Stone was the chemical formation of the alkahest, a kind of counter Philosopher’s stone which was a universal solvent that could ferment or digest material into its basic (lowest) constituents.

Paracelsus, through van Helmont had a growing number of followers in England who were especially interested in iatrochemistry and alchemy, including George Thomson (1617-1677) and the young American George Starkey (1628-1665).

Baldwin_Hamey_van_Dyck

(c) Royal College of Physicians, London; Supplied by The Public Catalogue Foundation

Baldwin Haney (1600-1676)

By the middle of the 17th century, the views of Galen, Paracelsus and Descartes had all become part of the then current understanding of medicine and the human body. However academic physicians continued to be trained as Galenists and they dominated the medical schools, the Royal College of Physicians and were the practitioners to the wealthy. Baldwin Haney (1600-1676) whose wonderful portrait is by Anthony van Dyck is an excellent example of the wealthy physicians who were members of the College.

William_PettyThomas_WillisAnne Greene

William Petty (1623-1687)Thomas Willis (1621-1675) Anne Greene (1628-1665).

In the famous case of Anne Greene, Thomas Willis, William Petty and some medical students who were studying anatomy with them,  revived her after she had been hung for the murder of her illegitimate child (a crime she did not commit). Her body was given to them for dissection, but as they prepared her, they found that she was still breathing. They used humoral techniques to revive her: they poured hot cordial down her (cold) throat, bled her, rubbed her limbs and applied hot plasters.

As we have seen, the three academic medical influences at the time came from Galen, Paracelsus and Descartes. Each was accompanied by a metaphorical picture of health which retains some currency today. The first saw health as a good balance among the humours, the second as appropriate chemical composition, and the third as a smooth running machine. Regardless of their primary orientation many physicians had absorbed and included aspects of each of these three positions, and most employed remedies that were a mixture of all three. The complexity surrounding their ideas about health derived from the intermingling of these different ways of thinking. The theoretical differences among the academic physicians meant little to the vast majority who could not afford expensive doctors.

 

Fanny Burney’s Mastectomy

Fanny Burney was a famous novelist in the late 18th and early 19th century. She married Alexandre d’Arblay, a French aristocrat who had escaped the French revolution. They moved to France in 1802 after Napoleon came to power. Soon after arriving, Fanny developed a terrible pain in her breast that came and went. It returned in 1806 and became unbearable by 1811. Her physician, Antoine Dubois, called in Baron Dominique-Jean Larrey, Napoleon’s surgeon, and they both decided that she needed a mastectomy. This was performed in her home on September 30, 1811. On the day of the surgery, she wrote a farewell letter to her husband. After her recovery, she wrote about her experience to her elder sister Esther Burney in March of 1812 – excerpts from this letter are quoted here.

Fanny Burney

“Frances D’Arblay” by Edward Francisco Burney

No fewer than seven doctors were present for the operation; all were dressed in black. She had been asked to write her consent, but the procedure was not what had been described to her. She was told that it could be performed while she was seated in a chair, but instead they told her to get into her bed and ordered the room cleared of nurses and maids. “Ah, then, how did I think of My Sisters!—not one, at so dreadful an instant, at hand, to protect—adjust—guard me.” Her physician Dubois had “tears in his Eyes.” She described having her faced covered by “a cambric handkerchief” and that “It was transparent, however, and I saw, through it, that the Bedstead was instantly surrounded by the 7 men and my nurse. I refused to be held; but when, Bright through the cambric, I saw the glitter of polished Steel—I closed my Eyes.”

After a moment or two, she opened her eyes, “again through the Cambric, I saw the hand of M. Dubois held up, while his forefinger first described a straight line from top to bottom of the breast, secondly a Cross, and thirdly a circle; intimating that the Whole was to be taken off.” She sat up and protested: the pain was just in one part of the breast, why did they want to remove it all. Dubois pushed her down and she said, “I closed once more my Eyes, relinquishing all watching, all resistance, all interference, and sadly resolute to be wholly resigned.” She described the removal,

When the dreadful steel was plunged into the breast—cutting through veins—arteries—flesh—nerves—I needed no injunctions not to restrain my cries. I began a scream that lasted unintermittingly during the whole time of the incision—and I almost marvel that it rings not in my Ears still! so excruciating was the agony. When the wound was made, and the instrument was withdrawn, the pain seemed undiminished, for the air that suddenly rushed into those delicate parts felt like a mass of minute but sharp and forked poniards, that were tearing the edges of the wound—but when again I felt the instrument—describing a curve—cutting against the grain, if I may so say, while the flesh resisted in a manner so forcible as to oppose and tire the hand of the operator, who was forced to change from the right to the left—then, indeed, I thought I must have expired.

She’d thought that marked the operation over, however when Dubois and Larrey tried to lift the breast, the tumour stayed attached to the chest wall. She described the shock, “Oh no! presently the terrible cutting was renewed—and worse than ever, to separate the bottom, the foundation of this dreadful gland from the parts to which it adhered.” And you can feel her desperation for it to be over, “Oh Heaven!—I then felt the Knife rackling against the breast bone—scraping it!—This performed, while I yet remained in utterly speechless torture.” And more, “Again began the scraping!—and, after this, Dr Moreau thought he discerned a peccant attom (fragments of diseased [peccant] breast tissue)—and still, and still, M. Dubois demanded attom after attom.”

Of the surgery, she concluded, “The evil was so profound, the case so delicate, and the precautions necessary for preventing a return so numerous, that the operation, including the treatment and the dressing, lasted 20 minutes! a time, for sufferings so acute, that was hardly supportable.” She described seeing her surgeon after, “I then saw my good Dr Larry, pale nearly as myself, his face streaked with blood, its expression depicting grief, apprehension, and almost horrour.”

Fanny Burney survived and died at 88 in 1840.

Burney F. Account from Paris of a terrible operation—1812 [letter to Esther Burney]. Henry W. and Albert A. Berg Collection. 22 March 1812. New York Public Library, New York. Online at the New Jacksonian Blog. Accessed 23 Nov 2014. http://newjacksonianblog.blogspot.ca/2010/12/breast-cancer-in-1811-Mme d’Arblay-burneys.html.

Burney, Edward F. Frances D’Arblay (‘Fanny Burney’). Digital image. National Portrait Gallery. National Portrait Gallery, n.d. Web. 23 Nov. 2014.

Choosing to die: four famous female patients

In this entry, I discuss four famous female patients whose deaths gave and continue to give us quite a lot to think about. What have dying patients contributed to our current thinking about death and dying? I thought that I would present four cases that made a difference to how I think about dying, and leave you to have your own thoughts.

Historically, the first death was of Sue Rodriguez who is famous in Canada. She was diagnosed with Amyotrophic Lateral Sclerosis (ALS) in 1991 and was prepared to die with the help of a physician. She sued for that right and lost her case in the Supreme Court of Canada in 1993. Nonetheless, she found an anonymous physician to help her die in February of 1994 and no charges were laid.

Sue RodriguezAlthough at the time there was some question about whether or not charges should be laid. Sue Rodriguez’s struggle with the law made it clear that we all had to think about what role patients might have in making decisions about their own way of dying. It began a decades-long struggle to increase patients’ ability to have more control over their deaths. It also, along with the stories about Dr. Jack Kevorkian, made the issue public.

Soon after her death, the New York Times on May 20, 1994 published a news report about the death of Jacqueline Kennedy Onassis, who had died on Thursday, May 19th, 1994 at 10:15pm.

Jacqueline Kennedy Onassis“Mrs. Onassis entered the New York Hospital-Cornell Medical Center for the last time on Monday but returned to her Fifth Avenue apartment on Wednesday after her doctors said there was no more they could do. Mrs. Onassis was surrounded by friends and family since she returned home from the hospital on Wednesday.” (McFadden).

Linda McCartneyFour years later, according to press reports, Linda McCartney, the wife of the former Beatle Paul McCartney, died on Friday April 17, 1998 in Santa Barbara, California, with her husband at her bedside. A statement from Paul McCartney’s office said the cancer had spread to her liver since she had been receiving treatment. A family spokesman quoted in the April 20, 1998 issue of the London Guardian said, “The blessing was that the end came quickly and she didn’t suffer” (CBS News). Two days before her death, she and Paul had been enjoying one of their main passions – horseback riding.

In both cases it seems possible that these two women had some quiet help in dying before they were ravaged by the disease. Linda McCartney was first reported to have died in California when in fact, she died in Arizona. Her death certificate was not made public and there was a great deal of secrecy surrounding her death. Some claimed that it was merely bad public relations, others considered that she had probably had some help in dying and that could not be made public at the time.

Jacqueline Kennedy Onassis did not stir up a similar response. However her death seemed to be altogether too orderly. On Monday, she entered hospital; on Wednesday, after her fate was pronounced at the hospital she returned home after a very short stay. On Thursday, she went for a walk in the park and then that night she died. It seemed likely that she had some help, but no one really pushed it.

It seems that first class patients could quietly get support in preparing for their deaths and it brought back the older tradition of well-off patients dying at home. It is interesting to contrast their deaths with our last case. Things seem to have changed by 2002.

From her obituary in the New York Times February 6, 2002 we learn of the death of Annalee Whitmore Fadiman:

Annalee Fadiman

“[She was] a screenwriter, World War II correspondent and the author, with Theodore H. White, of the best seller Thunder Out of China, died yesterday in Captiva, Fla. She was 85. Mrs. Fadiman, who as a member of the Hemlock Society supported a right to suicide, took her own life, said her daughter, Anne. Mrs. Fadiman had been suffering from breast cancer and Parkinson’s disease.” (Lehmann-Haupt).

As far as I can tell, this is the first declared self-controlled death reported in such a matter-of-fact manner in the media. It occurred only a few years after the deaths of Jacqueline Kennedy and Linda McCartney. Since then, the Hemlock Society has merged with other organizations and now call themselves Compassion and Choices.

There have been many changes in law and there is much more preparation for dying. There are clinics in Switzerland called “Dignitas” where, for a fee, families can stay with their loved ones as they are helped to die. Slowly more people are dying at home. And slowly more jurisdictions are supporting medically assisted suicide. Along with the efforts of Dr. Kevorkian, much of this change which has been driven by patients asserting their wishes and bringing them to bear on the system.

“Linda McCartney Dead at 56.” CBS News 19 Apr 1998. Web. http://www.cbsnews.com/news/linda-mccartney-dead-at-56/

McFadden, Robert. “Death of a First Lady; Jacqueline Kennedy Onassis Dies of Cancer at 64.” New York Times 20 May 1994. Web: http://www.nytimes.com/1994/05/20/obituaries/death-of-a-first-lady-jacqueline-kennedy-onassis-dies-of-cancer-at-64.html

Lehmann-Haupt, Christopher. “Annalee Whitmore Fadiman, 85, Screenwriter and War Journalist.” New York Times 6 Feb 2002. Web: http://www.nytimes.com/2002/02/06/nyregion/annalee-whitmore-fadiman-85-screenwriter-and-war-journalist.html

Typhoid Mary

Not all famous patients are passive and receptive. Typhoid Mary, whose real name was Mary Mallon, has been described as everything from an ignorant carrier of disease to a malevolent murderer of hundreds of people. In 1906 she appeared to be a perfectly healthy woman who had taken a job as a cook for a well-off family that was vacationing in a rental house in Oyster Bay, Long Island. Within weeks, six members of the household contracted typhoid fever, including not only several family members, but also the gardener and several maids. Mary Mallon stopped working there within weeks of the typhoid outbreak.

Typhoid Mary

The owner was worried that his house would no longer be rentable and hired investigators to determine the cause of the outbreak. None were successful until he found George Soper, a civil engineer, who had experience in tracking typhoid outbreaks. Soper thought that Mary Mallon might be responsible and began to investigate where she had worked before. He discovered that typhoid outbreaks had followed her as she changed jobs between 1900 and 1906. One young girl had died of the disease.

Soper finally found Mary Mallon in March of 1907. She was once more working as a cook. When he tried to approach her to see if she was infected with the typhoid bacteria, she reacted violently. He called in the Public Health Department and she, once again, refused to listen to their explanations and rejected their requests for samples of her blood, stool and urine. In the end, they called in the police to capture her by force. They brought her in an ambulance to a hospital in New York where samples were taken and her stool tested positive for Typhoid bacilli. Because she was a public health hazard, she could be removed from her home and placed in isolation without trial. She was brought to North Brother Island (in the East River off Manhattan) and kept in a secluded cottage which at the time was owned by Riverside Hospital. The Island has since been abandoned and the buildings on it are derelict.

Mary's houseMary Mallon became famous as Typhoid Mary during this period. She sued the Public Health Department for her release, claiming that she was healthy and that they had no right to detain her without trial. She sent her stool sample to a private laboratory that found no typhoid bacteria in it.

However the Public Health Department tests disagreed and her suit was dismissed in court. She remained on North Brother Island for two years.

According to the laws of New York State, the Public Health Department had the right to isolate the cause of infectious diseases like typhoid fever:

The board of health shall use all reasonable means for ascertaining the existence and cause of disease or peril to life or health, and for averting the same, throughout the city. [Section 1169] Said board may remove or cause to be removed to [a] proper place to be by it designated, any person sick with any contagious, pestilential or infectious disease; shall have exclusive charge and control of the hospitals for the treatment of such cases. [Section 1170] (Leavitt 71)

In 1910, a new Director of Public Health offered to release Mary Mallon from her confinement if she would agree not to work as a cook and to take precautions when she was in contact with other people so as not to infect them. She agreed and was released. She found work as a laundress and soon disappeared once more.

It is not clear that Typhoid Mary understood that she was a healthy carrier of a deadly disease. She was an Irish immigrant who lived and worked in the service class and it was more common to give orders to people like her, than to attempt to explain things. It is also not clear that she tried to abide by the conditions set for her release. Working as a laundress or a maid paid substantially less than working as a cook, and after several service jobs, she returned to her original occupation and began to work as a cook again. In January 1915, twenty-five people contracted typhoid fever at the Sloane Maternity Hospital in Manhattan and two people died. It turned out that Mary Mallon had changed her name and was working as a cook in that hospital.

This time there was no public sympathy for her and she was returned to North Brother Island where she lived for the rest of her life until she died in 1938. Some estimates are that as many as several hundred people died because they were infected by her, but there remains no clear agreement about whether she understood that she was infecting and killing them.

Leavitt, J.W. Typhoid Mary: Captive to the Public’s Health. Boston, Massachusetts:  Beacon Press, 1996.

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.