From Bedside to Bench

During all my years of practicing medicine, I have been close to research in the institutions where I worked. I have admired and assisted clinical researchers, but I had never felt inclined to join their ranks. When I became the Clinical Director of the Youth Program two years ago, however, that changed. With this new role came the task to promote research and to become more personally involved in the research being conducted in my program and institution.

It is remarkable how much research is conducted in a university teaching hospital, with little funding and most research being conducted off the corner of people’s desks. Most of these researchers are earning their living from their clinical work, with next to no additional funding. Often the only additional funding they receive covers costs related to materials for research and a few hours from a research assistant. It is not unusual for physician researchers to be self-supporting, receiving no direct compensation for this work. This is my experience in psychiatry, but I suspect that it is not much different in other medical specialties.

Much of the research conducted in the clinical programs in which I work is to benefit our programs and our patients, first and foremost. We ask each patient to complete surveys and simple diagnostic measures before and after all programs, in some cases after each session, so that we can be sure that there is value to the programs and therapies we have developed and that we use. In many programs that we are developing, we ask for feedback after each session. For example, if we are starting each session with a mindfulness exercise that no one finds helpful, then we change exercises. All this data provides us with valuable information about the profile of the patients we are treating. It also indicates the type and severity of the conditions being treated in a tertiary care treatment facility.

As I began to consider all the data we have available that patients have given permission for us to use and analyze, I began to consider that, even when I worked as a psychiatrist in private practice, I had a great deal of patient data at my disposal. Occasionally, when a situation I had managed was very unusual, I would discuss with a patient and their family the possibility of sending a short communication about the case to a journal. I had no one to advise me on the process. I had to negotiate and consider the ethics of the situation on my own with the patient and their family. Often the patient and the family had considered their situation to be unique. They were eager to participate in this minimal research process as a specific case discussion to benefit other patients and families who might find themselves in a similar situation.

The minimal level of funding available in universities and the complete lack of funding available to physicians in private practice to pursue limited clinical research underlines the shortsightedness of our single payor. Imagine if research were promoted by Provincial Ministries of Health in Canada, to the extent that expertise and funding were readily available to Primary Care and other specialists in the community, what we might learn to improve best practices in Canada. Imagine if the funding in Alternate Funding Plans was sufficient that every physician in our teaching hospitals could be involved in research without financial penalty, what we might learn about secondary and tertiary care.

An example of the kind of research that is possible when the payor supports it is the study conducted by the United States Center for Disease Control, supported by Kaiser Permanente, is the Adverse Childhood Experiences Study. I learned about this study when I was researching (unfunded, of course) other data we might like to collect in programs. It is “one of the largest investigations of childhood abuse and neglect and later-life health and well-being”.

This is the kind of work we could be doing across Canada. I could not find any evidence of this research, although I would be relieved to know that I was wrong.

 

Book Review: How We Die

Dr. Sherwin Nuland, an American Surgeon who worked at Yale University, wrote one for the best books on death in our own era. How We Die: Reflections on Life’s Final Chapter was published in 1993 and is Nuland’s Socratic consideration on a subject which we must all contemplate sooner or later.

Nuland considers this phase of life from the perspective of people dying from conditions as diverse as cancer and murder. What is most remarkable about this book on dying, as compared with many others, is that Nuland sought the advice of experts for each of the examples he uses in the book. This opens up the book as a resource to those of us in Canada contemplating what medical aid in dying will mean for us, first and foremost as persons who might use this resource, but also as health care providers. Health Care Providers have faced medical aid in dying with much trepidation since it goes many of our natural inclinations. As a member of the Canadian Council of Academies’ Expert Panel on Medical Aid in Dying, I have wanted to remind myself of the role and place of death in our lives and Nuland’s book has helped me to do this more than any other resource.

Of all the stories in this book, I was most moved by Nuland’s account of the death of his brother from cancer. My own sister is dying – I have been writing about this in my blog – and so I can truly relate to Nuland’s struggle. It is a lesson we must all remember, those of us who work in health care: “Where my own brother was concerned, I had forgotten, or at least forsaken, the lessons learned from decades of experience.” (Page 231) This is exactly the reason we should never try to care for a family member or a close friend.
Reading this book, with its extensive research and focus on what experts in various disciplines and patients have to say, is a reminder that Nuland is a life long learner. His inquiring mind and dedication to ongoing self-improvement is an example to all physicians that you can never know too much. This has been Nuland’s greatest lesson in all his work: always keep learning.

This was not Nuland’s own lesson. It is one of the original lessons of Maimonedes, and can be found in the physician/philosopher’s prayer:
“Let me be contented in everything except in the great science of my profession. Never allow the thought to arise in me that I have attained to sufficient knowledge, but vouchsafe to me the strength, the leisure and the ambition ever to extend my knowledge.”

(Note: References are from the 1995 Random House Vintage Book’s edition of How We Die: Reflections on Life’s Final Chapter.)

The Pharmacare Monument

The image I have of how universal pharmacare is being added to the resources Canadians have for healthcare is a building, a specific kind of public building that can be found in most Canadian cites: a hospital. Think about a hospital in your city that was originally built sometime in the twentieth century. The original building may even be a heritage building, a monument to how health care was delivered in its era.

Adjacent to this building, and attached to it is another building, perhaps even another heritage building, but at least another edifice that is a testimony to the health services of its era, or the research conducted in that time. A particular element of these hospital structures is the way in which they are attached to each other. On occasion, the means of getting from one of these buildings to the other is an above ground passageway, often an overpass over a road. Think of the overpass between the Former Royal Victoria Hospital in Montreal and the Montreal Neurological institute. At other times, buildings are connected by a series of tunnels. Tunnels, in fact, seem to be a common feature of psychiatric hospitals. I was trying to find an image of the tunnels underneath my hospital’s former buildings and found that many older psychiatric hospitals have a series of tunnels between buildings. If that’s not a metaphor, I don’t know what is!

(Photo credit: This image of the overpass between the Royal Victoria Hospital and the Montreal Neurological Institute is from the Wilder Penfield Digital Collection of the Osler Library at McGill University.)

I am sure many healthcare providers are so familiar with these hospital images, that when I say that the new pharmacare measures being undertaken by federal and provincial governments across Canada are much like our hospitals, they will see immediately what I’m getting at. All these new pharmacare programs are add-ons. There is no vision of a whole structure being contemplated, bringing together all the stakeholders currently involved in assisting Canadians’ access to medications. There are, instead, add-ons, connected to existing plans and measures such as some Canadians’ insurance benefits, other vulnerable Canadians’ existing coverage and all Canadians’ own money. Except that, since all the money being used for all these plans is our money, we’re all going to have to deal with a series of tunnels and passageways to determine exactly how to get coverage for the latest, greatest drug our doctor has ordered. As someone who sees mostly people under 18 in Ontario where “universal” pharmacare has now been introduced for everyone under 25, I can assure you that “universal” has developed several new meanings over the past few months.

There has been tremendous progress in healthcare over the past two hundred years, and many of our older hospitals which have only gotten add-ons and not a completely new building are monuments to that progress. It is likely that, in time, the new hospital buildings that are being built will also become monuments. Unfortunately, it seems that humans struggle to build a structure, either a building or a policy, so that it can easily change and this is what is needed in healthcare. We need a new pharmacare policy that takes over from all existing drug coverage, one plan that has the same elements, no matter your age or health condition.

Wouldn’t it be great if the investment in pharmacare came with a new plan for Medicare and Canadian healthcare itself? That would be building for the future.

(This is Timmerhaus a modular building in the Netherlands built completely of sustainable materials.)

Life and Death Reporting – A Book Review

André Picard has been reporting on health and healthcare for The Globe for over thirty years. His book Matters of Life and Death: Public Health Issues in Canada is a collection of oeuvre from that period, focusing on some of the most important heath issues of that period and for Canada today. Apart from being a practicing psychiatrist, I did work for a time in health policy for the Canadian Medical Association and I haven’t quite shaken the habit. Mr. Picard’s book has become a reference for me and I am referring to it time and again when discussing or considering healthcare.

The book is organized into fourteen sections on what are arguably the most important topics in Canadian Healthcare. Picard cites fourteen areas of healthcare that deserve immediate attention because of their impact on Canadians’ health and our health care system. These are Medicare, Mental Health, Drugs, War on Drugs, Aging, End of Life, Children, Reproductive/Women’s Health, Disability/Inclusion, Indigenous Health, Cancer, Infectious Disease, Lifestyles, Social Determinants. Each topic has its own chapter and the book is very readable and understandable even if reading about health and healthcare is not easy for the reader. As someone who promotes health literacy to the sixteen year old adolescents in my practice, this is important. The short articles in each chapter are interesting and well-written. Members of my team and I used Sip on this: Like all drugs, alcohol isn’t Consequence free for a group about alcohol use in teens.

As I said before, this book has become a reference for me on Canadian Healthcare. I like to have good health policy information, to have the correct statistics and an impression of how others might be considering a health policy topic. Matters of Life and Death was accurate from these perspectives in those areas of health care where I have very good knowledge, which was always reassuring. Also, even when I don’t agree with his opinion, I can always see Mr. Picard’s point of view. This is the essence of good science journalism to me: that it stimulates dialogue and further consideration.

I feel that Matters of Life and Death is a book that every Canadian who wants to understand the problems our healthcare system should read, but I also think they would enjoy it. I will also say that the most valuable information provided was found in the Introduction. Mr. Picard compiles a list of the shortcomings of health reporting. He cites a list developed by Gary Schwitzer, a well-known American health journalist, and then develops the list further. That list is a lens against which one can evaluate journalism on healthcare, a good tool to have when you’re trying to decide whether an article is worth consideration.

(Note: I read the 2017 Douglas & McIntyre paperback edition of Matters of Life and Death: Public Health Issues in Canada.)

(My own photo)

Patient Accountability II

In January, I wrote a brief introductory essay on the reasons I feel patients must be included as full partners in health care, having not just the right to good care, but also responsibility for certain facets of the health care system.  There were so many comments and concerns raised by that introduction that I felt it was important to follow up with a bit more information to think about and clarification of why, in my view, patients need to be full partners in accountability.

One of the striking facts about the Canadian provincial health plans is that government documents and websites highlight patients’ rights and never mention patients’ responsibilities. I looked through the documents for each province and territory. Here are links from the British Columbia website and an Ontario government website for new immigrants as examples. I attempted to find a document for Ontario similar to the British Columbia Document, but this did not seem to exist, except for new Canadians. The document for new Canadians does list responsibilities but I was struck by the fact that the website also contains this phrase: “You are entitled to all of the patient rights that are described in Ontario laws, even if you do not follow these “responsibilities.”  The other document I have included is a Government of Canada comparative overview of patients’ bills of rights from around the world. Note once again that rights are noted without mentioning responsibilities.

Contrast this with the fact that other countries with a publicly funded system do list both patients’ rights and responsibilities. This is also true of many physician practice groups in Canada and hospitals. Both hospitals and physicians’ practices absorb the costs in their budgets if time or resources are not productive. In my hospital’s Youth Psychiatry program, missed appointments or late arrivals mean delays for another patient’s assessment or treatment. That’s why we have a rule that, if a patient misses more than two appointments without 24 hours’ notice, we close the file. Given that Ontario’s healthcare budget covers the cost of the therapy provided in the Youth Program, most patients and their families understand that missed appointments affect access to care and accept the rule.

The emphasis of patients’ rights, in the absence of a consideration of any responsibilities, makes physicians uneasy. It also makes many physicians, including me, feel as though the responsibility for stewardship of the system is not shared by patients.

All physicians have days when we feel as though every appointment consists of reviewing with patients that the tests they want are unnecessary and treatments they would like are proven to be ineffective. Physicians honestly want to follow best practices, and improve system efficiencies and these discussions with patients about necessity prove that. Physicians could have much less conflict in our days if we just agreed to order every blood test, consultation or x-ray that patients request. At the same time, every physician I know is very understanding when a person’s living conditions or financial situation make it impossible for them to follow the recommendations they’ve received for examinations or treatment.

One reader of my last Patient Accountability essay commented that defining patients’ responsibilities was a “slippery slope” to blaming patients for their health problems. My experience is that anything less than a full discussion of a patient’s history, examination and diagnosis, along with an outline of the best practices for further tests and treatment is a “slippery slope” to an old style of medicine in which the patient was expected to “do what the doctor ordered”. That kind of paternalism is no longer acceptable in medical practice. The standard of care today is to review the diagnosis and recommended tests and treatments thoroughly so that patients understand the options for further evaluation and treatment and consider with their doctor and other care providers what would best for them. Patients no longer want to be patronized by the doctors providing their care.

Canadians are aware that their much-celebrated health care system is not keeping up with demand and it would be a relief for most people to know that there was something they could do to preserve and improve their health care. We are all aware that many Canadians can no longer afford necessary medications, but we also realize as our national and provincial deficits increase that we cannot spend away the health care system.  Providing good care in the context of excellent information about best practices is what all doctors try to do. My experience with patients is that they want this information so that they can do whatever it takes to get well. How is that not taking responsibility? Why can governments in Canada not accept that this is the right thing to do?

Patient Accountability: Is it reasonable?

I am puzzled by Canadian federal and provincial governments’ collective reluctance to make patients partners in their own healthcare by expecting them to accept certain responsibilities for their own health and for the sustainability of the healthcare system. Why does it seem unreasonable to governments to ask citizens to meet a minimal set of expectations in relation to health care? All Canadians pay taxes, follow traffic laws and remember to get their passports renewed. Why would they not manage similar expectations in relation to their healthcare? Healthcare is thought to be a right by many Canadians – don’t we expect to have responsibilities related to rights? Why wouldn’t we be as accountable for our health care as we are for our taxes?

The issue of patient accountability is important for me as a physician. Whenever I see resistance by the government to patients accepting reasonable accountability, it feels as though the government is saying that the responsibility for the sustainability of the health care system mostly rests with frontline providers, especially physicians.

The Government of Ontario seems to like many aspects of Kaiser Permanente’s model for health care delivery so I thought I would see what Kaiser expects of patients registered in their programs, just to see how far-fetched my notions of patient accountability are. This is a link to the section of Kaiser Permanente’s website called Your Rights and Responsibilities. The section has a list, first of all, of rights. A quick read through this will show that these are the same expectations of any Ontarian of the Ontario Health Insurance Plan, although some of these include such statements as: “Receive emergency services when you, as a prudent layperson, acting reasonably, would have believed that an emergency medical condition existed.” The next portion is about patients’ responsibilities as a client of Kaiser Permanente. There are sixteen expectations in all, grouped under three broad categories: Promote your own good health; Know and understand your plan and benefits; Promote respect and safety for others. All are reasonable; all would be easily adaptable to the Ontario situation.

So what is the big deal? Unfortunately, Minister Hoskins has often said that health care is “free” – he did this last flu season, suggesting patients get their “free” flu shot at their nearest pharmacy. Leaving aside the fact that health care is not at all “free” from a financial perspective, it sounds as though governments believe that “free” should also mean “free from any inconvenience or expectation of the patient”. But we don’t say this for other government programs – try being free from the “voluntary” aspect of your income tax, or paying a parking ticket. You’ll soon learn that the government has ways of making you meet these expectations. When health care is the single largest budget item for a provincial government, why not expect the same attention to missed medical appointments, or seeing multiple doctors through walk-in clinics? It almost seems as though the government knows that this is one of those places where you can let someone else be the bad guy. You can let me be the one to say, “You missed two appointments with no notice and, as you were told at the outset, we will not continue to see you at the clinic if you miss appointments without letting us know.”

Now that Ontario’s ability to provide health care is being limited by the resources available to fund it, now that all other efficiencies in the system have been found, is it not time to turn to patients to ask them to contribute to the system? Is it not time to say, “There are some ways you could make the system more sustainable”? This is true in Ontario, but it’s also true in the rest of Canada as well.

The Ontario government is so desperate to find resources for health care that cuts to both physician and hospital services are continuing. However, it seems that legislators are not so desperate as to risk the anger of voters by asking patients to be accountable for those elements of health care that they control. I think that most citizens are committed enough to the health care system that they would welcome the chance to make it better. As baby boomers see how cutbacks are affecting health care, either through their own experience or that of family members, they are realizing that there is a role for them to play. It’s time to ask everyone to embrace accountability.

Bill 41 – What about Specialists?

Here is my last question about Bill 41 before it goes to Committee: Once Minister Hoskins finishes bringing family doctors “into line”, what has he got planned for specialists? One might get the impression from the government’s reasons for introducing Bill 41 that family doctors are sitting around their offices eating bonbons all day but, really, that just isn’t the case.  Watch the activity in your family doctor’s office while you’re waiting for your appointment and you’ll realize that they are run off their feet.

But access is also problematic in the offices of community specialists, and especially the specialists in medical and pediatric and mental health specialty care. Internal medicine specialists, pediatricians and psychiatrists are the system’s experts in chronic disease management. These specialists look after babies with failure to thrive, children with diabetes, youth with schizophrenia, adults with chronic obstructive lung disease and the elderly with every chronic condition imaginable. We are the consultants family physicians seek out when a patient’s chronic illness suddenly becomes acute.

In my practice, I hear from family doctors when a young person with major depressive disorder begins to feel suicidal after months or years of being symptom-free on the correct medication and successful cognitive behavior therapy. Because I work in a hospital setting with a full team of clinical psychologists, social workers, psychiatric nurses, recreation therapists, occupational therapists and child and youth workers, my youth program has no waiting list. We can bring youth in quickly and settle what is happening, or work on it with a young person and their family, offering a limited choice of treatments.

A psychiatrist in a community setting, however, is in a very different situation. Because they have no team and limited access to community resources, that specialist is often monitoring highly complex patients performing to the best of their ability all the functions of a team working with the family doctor. This is an essential service in medicine since these are often the only people available to provide therapy to those who could otherwise not afford it. Every community medical specialist performs similar services in their own specialty areas and benefits many patients. These doctors are valued by patients especially because the practice setting is “private” and can sometimes afford a level of individualized care that might not be available in a hospital setting.

The reasons a specialist works in the community and not in a hospital setting are varied. I worked in private practice when it was impossible for me to be on call. My three children were born within two and a half years and, for the years I was a single parent, it would have been impossible, of course, to leave them to assess a patient in the emergency room.  For all the years that I was in private practice in Ottawa, my patients had my home number in case there was a problem. This is true of many of the community specialists that I know, and many of them do provide call in community hospitals. In small communities, they are often the only expert in their specialty that the Emergency Room physicians can access. These doctors are vital to the health care system that patients depend on.

For the last four years, the Government seems not to have considered community medical specialists at all – which means that the patients these specialists care have also been overlooked by the government. Many medical specialists have seen the resources some primary care practices have been able to access and wondered whether the government might ever consider resources for their patients.

Dialogue between doctors and the government does not exist, however, except on the government’s terms. We have watched as the Government of Ontario cut off resources and even began to limit entry into certain family practice groups. Despite the increased access family doctors have provided to Ontario patients, it has not been enough to satisfy the government and so they have begun to unilaterally impose the organization they want through cuts to fees and now legislation via Bill 41.

Bill 41 focuses everyone’s attention on primary care, and doctors and patients depend on family physicians to be the stewards of patients’ overall care. When the government begins to realize that patients also need more specialist care for their chronic diseases, it seems likely that they will also try to shape how community specialists practice. When that happens, can the individualized, patient-centred care that these doctors provide survive? Bill 41 tells us both patients and physicians come after administrative concerns.

The system of community consultants isn’t perfect, but patients value it. Specialists have ideas about how to improve community care, but is anyone listening?

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