Category Archives: Modern Medicine

Rethinking visiting hours

We can see that parking policy should be developed in partnership with patients. Hospital visiting hours are a similar issue. We can trace some of the changes in patient-oriented policy as hospitals become more patient-friendly by looking at policies about visiting hours.

In the early days of the modern hospital, visiting was discouraged. In the comprehensive manual from 1913, The Modern Hospital, the authors are very clear:

We may begin with the flat argument that it would be best for all sick people if all visiting could be prohibited and it is a recognizable situation in nearly every hospital that has visiting days that the temperatures are higher at night on the visiting days than at other times, all else being equal, and this is due to the excitement caused by visitors, not alone one’s own visitors but those who come to see other people…

In considering the visiting question, therefore, we have two or three fundamental ideas in the foreground; one of them is that we ought to restrict visiting as much as possible and we ought in any event to limit visits to the one patient whom visitors come to see. And visits should be as short as possible and whenever it can be done each patient should be restricted to one or two or at least a minimum number of visitors. (Hornsby, Schmidt 490)

In the old days, visiting hours varied by class of patient. Charity (free) patients had severely restricted visiting hours, often limited to a few hours every week. For example, visiting hours for the Children’s Department are listed:

Large (free) wards, 2 to 4 pm Wednesday and Sunday

Small (private ) wards: 1 to 8 pm daily

Private rooms: without other limitations than the order of attending physicians. (Hornsby, Schmidt 340)

Times have changed. Today there is a recognition that patients can benefit from visits, and typically visiting hours have been much extended. Nonetheless there are usually restrictions imposed that vary widely from unit to unit. Restrictions can make things difficult especially if one is trying to stay to support an elderly relative or stay close to a very sick friend.

A recent article in the New York Times describes the view of the Institute for Patient and Family Centred Care (IFPCC) which is to lift all restrictions on visiting hours. They point out that, increasingly, families and those close to patients can play a crucial role in their care. Beverley Johnson, the President of the IFPCC says, “People should go to a hospital with a family member or trusted friend to be an advocate, to ensure continuity, to answer questions and prevent errors.” The article in the New York Times goes on to explain that,

Because she was with her centenarian mother in a Florida hospital, for example, she could explain to a doctor who had never met either of them that that no, her mother did not have a pacemaker, and perhaps he had confused her with a different patient. (Span para 8)

The IFPCC argues that if hospitals do want to partner with patients and their families, it will be important to begin to lift restrictions on visiting hours as a matter of policy. As Johnson says, “You can’t partner with families if you’re locking them out of the hospital, especially when patients are most vulnerable” (Span para 4). We agree that policies about visiting hours should be reviewed with this in mind.

Hornsby J, Schmidt R. The Modern Hospital. Philadelphia, Pennsylvania: W. B. Saunders Company; 1913.

Span, Paula. “A Move to Extend Visiting Hours at Hospitals.” The New York Times. Web. 11 July 2014.

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Technology helps patients assume a more comprehensive role in medical care

Over the last six months, there has been an extraordinary change in the role of patients in health care and we can hardly keep up. As little as six months ago, the question was, “How can we help patients gain a voice in health care?” We knew that patients should have a voice and that some organizations were beginning to introduce policies and committees to welcome that voice, but what has happened since has far exceeded our expectations.

In the New York Times on April 25, 2014, there was an article that described several devices that empower patients and families to be more involved in their primary care. There are now attachments and apps for smartphones that teach parents how to examine their children for earaches and determine by themselves, or with the online aid of their doctor, whether a visit to the doctor’s office is necessary. techWe already know that the cameras on some phones have become so sharp and clear that photographs of skin conditions can now be diagnosed by dermatologists online without any fancier technology. Now with the otoscope attachment and app, one can create photographs and even videos of the inner ear to check for inflammation. An otoscope is the tool that doctors use to examine the inside of your ear. The picture to the left is of the Cellscope Oto that is attached to an iPhone. Its app will allow almost anyone to examine the inner ear.

This visual otoscope is beginning to be used by doctors to help parents (and medical students) learn which conditions require medical intervention and which do not.

tech1The AliveCor is another recent device/app that allows your smartphone to monitor your heart and interpret the electrocardiogram (ECG). It can also send the ECG to your doctor. It used to be available only by prescription, but can now be purchased online for $199.

As these devices and others like them become more sophisticated and better able to interpret results, they will have a profound effect on the practice of medicine. There is already a website where your photograph can be assessed by a dermatologist for a fee. In the future there will be apps that will be able to crunch the data and do that assessment themselves.

The New York Times notes that this is a continuation of the trend for patients and their families to participate more actively in their own care. Apps are no longer merely ways of communicating with the doctor who has the necessary knowledge and skills to make the diagnosis and prescribe the treatment. Now these tools will enable patients and their families to diagnose the condition and decide by themselves if a trip to the doctor is necessary.

In Ontario, there has been quite a lot of leading edge communications technology to allow doctors to examine patients at a distance. Because of the huge size of the province there are enormous remote areas where there is no easy access to specialists (and other health practitioners). The use of high definition television and tools like the remote otoscope, have allowed doctors to examine and treat patients at a distance for a wide variety of conditions – everything from eye examinations to cancer treatment follow-ups have been done through the Ontario Telemedicine Network (OTN). In fact it has been a leader in medical care among countries with large remote populations. Some of its technology is already beginning to become cheaper and more widely available through smartphones.

At a meeting on April 21, 2014, with a representative of OTN, Patients Canada explored ways to use their technology to increase services not only for remote communities but for populations that find it difficult to travel in rural and even urban communities. Many housebound patients and their families have difficulty receiving services. This new technology can become a way of getting more services, improving continuity of care, and creating stronger partnerships between patients, family members and practitioners. At Patients Canada we have recognized that far more care in the community is needed not only for housebound patients, but for others who have some difficulty accessing the health system. It may be that these new technologies can help to change that by improving communications and enabling patients and families to take on more of the diagnostic role themselves.

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.