Monthly Archives: May 2014

A primer on policy from the patient perspective

Reading some more of Paradigm Freeze, it became clear that its authors consider that the Canadian health care system primarily includes hospitals, doctors and the services they provide, and that policy changes are meant to reform that landscape. In the book, they are worried about how slowly this system changes. Let’s take a look at how the system came to be in the first place – here are some significant events in Canadian health system development:

• 1947 Saskatchewan Hospital Insurance Program
• 1949 British Columbia Hospital Insurance Service
• 1962 Saskatchewan Hospital & Doctor care
• 1957 A National Hospital Insurance Program across Canada
• 1966 Medicare Hospital & Doctor care across Canada
• 1984 Canada Health Act:
– Covered hospital care and Doctors’ fees for medically necessary services
– Did not cover drugs outside hospitals
– Did not cover much non-medical treatment outside hospitals and doctor’s  offices

The “centre local de services communautaires,” or CLSCs as they are known, are an example of a service that is hardly considered in the book. These local community services organizations came into existence in Quebec as a result of major reforms and since then have virtually disappeared in the process of regionalization.

CLSCs were put in place in the 1970s during the quiet revolution in Quebec. These organizations, along with others like the CEGEPs (Collège d’enseignement général et professionnel or in English, General and Vocational College), were part of a larger vision to create a comprehensive social umbrella that would be responsible for the overall wellbeing of its citizens. At the time, participative democracy determined the expressed values of the CLSCs. They were governed by citizens of the local area and staff members who together set the policies, planned the services and managed them.

The CLSCs became significant members of the health and social services system. Doctors, nurses and social workers were their major employees, and the hope and expectation was that these local organizations would develop and thrive while providing a broad range of locally needed services – everything from preventive services to primary care, to financial and marital advice. Overall the CLSCs would increase the capacity of the population to live well through education and service.

Because they were indeed local, there was a wide variety of CLSCs that provided different services in their different locations. There was also quite a variation in their uptake and effectiveness. In some better off communities, the vast majority of people had family doctors and little need for social services; in others, the CLSC was a vital part of the community with ever evolving services and support. The result was that there was little standardization of their services, which had been the original idea. By the time of regionalization, some CLSCs, such as CLSC Notre Dame de Grace in a working class neighbourhood of Montreal, were very effective in their localities – providing a wide range of services including education and prevention programs, social and other supports for people at risk living in the community. Others were very small and provided a minimal range of services, mostly community nursing and home support.

Regionalization resulted in disbanding the large, more effective CLSCs like the one in Notre Dame de Grace. The smaller ones lost their local governance and were merged into home care agencies, and continued to exist in that form. Regionalization in Quebec quickly and effectively ended the CLSC experiment at exactly the time when it would have been a good idea to see how to expand services in the community even more. Interestingly, only a small mention is made of this rather devastating change in Paradigm Freeze. That is, I think, largely because the loss of these services is not seen as having a connection to the health care system as they understand it. It’s important that we expand the notion of health care to include precisely the range of services that are largely ignored in the book – positive change comes even more slowly when impactful community-based solutions are overlooked.

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Policy 101: A patient’s introduction to the policy world

Paradigm Freeze: Why it is so hard to reform health-care policy in Canada, edited by Harvey Lazar, John Lavis, Pierre Gerlier Forest and John Church, is a very detailed attempt to explain the problem described in its title. The authors examine six policy issues that played a role in health care reform from 1990 to 2003. The issues were specifically chosen to provide a range that covered governance, financing, delivery arrangements and program content.

The authors assess how these reform ideas fared in five provinces. The scope of the study is worth exploring. The policy areas they cover are:

  • Regionalization (governance)
  • Needs-based funding (finance)
  • Alternative payment plans for physicians (finance)
  • For-profit delivery (delivery arrangements)
  • Waiting lists (delivery arrangements)
  • Prescription drug insurance coverage (program content)

The five provinces studied in detail were Alberta, Saskatchewan, Ontario, Quebec and Newfoundland, and there was no uniformity in the provincial responses. The pace of decision making varied from province to province, as did the considerations employed in making the decisions. As a result, they came up with a wide array of different policies about each of the six areas considered.

Throughout the next several weeks I will explore these and other policy issues in an attempt to bring a patient perspective to some of the material in this book. Because patients are beginning to play a role in policy development, I think it is worthwhile to present these and other policy issues from the patient perspective. I encourage you to tell me if I have succeeded and if these blog entries are of any interest to you, as I anticipate a learning curve for both of us. This week I will write about regionalization.

The idea of regionalization was taken from the structure of the National Health Service (NHS) in the UK. It was closely tied to two ideas: centralization of control and the introduction of general management into health care to make it more efficient through better management. The idea was to separate responsibility for health care from the bureaucratic Ministry of Health and put it into the hands of managers who would be responsible for managing the health of the population in their geographical areas.

The NHS had a traditional hierarchical structure with geographical regions that were each divided into a number of districts with their respective senior manager. The head of the NHS was the most senior figure and he or she reported to the Ministry. There were fourteen regions and almost 100 districts. Employees of the NHS were fond of bragging that it was the largest single organization in Europe apart from the Red Army. Now it is undoubtedly larger than the Red Army. The average population in a region was almost 4 million and each district had roughly half a million inhabitants.

In 1994, Alberta, with a population of a little over 2.5 million, created 17 regions – each with populations of less than 200,000. The transformation meant that the heads of hospitals and other health organizations would no longer report to their own boards; they now were managed by a regional general manager who in turn was responsible to a regional board. This meant that hospitals were no longer locally owned and governed not-for-profit organizations: they were now provincially owned and regionally governed.

Similar changes in governance occurred in other provinces that adopted regionalization. The effect was to centralize governance from the local level to the regional level, a major change in the structure of the healthcare systems. As you can imagine, this had a great impact on the social role of hospitals as well as their role in the healthcare system. It effectively changed the people who controlled healthcare by switching the focus from local to regional. One of the policy questions that should be explored is what are the benefits and disadvantages of taking health care organizations from the not-for-profit sector of governance and turning them into governmental organizations?

Next week we’ll look at need-based funding: what does this mean and how can changes in policy affect your health care.

Lazar, Harvey, Pierre-Gerlier Forest, John N. Lavis, and John Church. Paradigm freeze: why it is so hard to reform health-care policy in Canada. Kingston: McGill-Queen’s University Press, 2013. Print.

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.

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.