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.

 

Guest Blog: Dr. Cargill and Dan’s Law

For the past nine months, I have been visiting my sister who is dying in Nova Scotia. This experience has truly sensitized me to the needs of those who need palliative care, and I now appreciate how much I will want to be able to control how and where my life ends. But this is not always possible, as Palliative Care physician Dr. Darren Cargill found out while caring for Dan, a patient who had moved to Ontario from Alberta. Dan’s story is very moving, and it underlines some of the inhumanity in our disjointed healthcare system. Dr. Cargill confronted this inhumanity on his patient’s behalf, and that is an even more inspiring story.

I asked him as a guest blogger to speak about his advocacy on behalf of Dan, advocacy that has resulted in the introduction of Bill 54 into the Ontario Legislature. Here is what he had to say:

“Bill 54, introduced by MPP Lisa Gretzky and which was debated and passed second reading on November 17th, 2016, provides much needed support for patients and their families. Canadians who move or return to Ontario and require palliative care or home care should not be subject to the typical three-month wait to be eligible for OHIP services.
The Bill carries the support of the Ontario Medical Association on behalf of its 34,000 physicians and medical students.
The issue came to light for me when a patient, Dan Duma, was denied home care services upon returning to Ontario from Alberta. Dan was dying of cancer with a life expectancy of less than three-months. Dan’s Law prevents future patients, families and caregivers from experiencing unnecessary hardship as a result of this lack of access to needed care.
As a doctor, I know that there is no medical justification for the wait period and I believe that, especially in these circumstances, we should afford Canadians and permanent residents the right to die with dignity. The benefits of home and palliative care are not only medical – they serve to support family members and caregivers.
The benefits of timely care include avoiding potential medical complications of delayed care and the associated significant human and financial costs arising from these complications.
Bill 54 has passed second reading and was sent to the Standing Committee on Justice Policy. This bill needs to be passed before the provincial election. I am asking that you write to your MPP and ask that Dan’s law be passed.”

Why would a person have to move from one Canadian province to another if they were dying? We all know the answer to this. They would move to be closer to family members. Why should they be denied the benefits of palliative care or home care? Please send an email or letter to your MPP and ask them to move Bill 54 forward. No one should ever be denied care in Canada because they moved from one province to another to be closer to family.

You can contact your MPP in Ontario using this list. If you are a physician in Ontario, please support this work. You can find a template letter under Advocacy on the OMA website. You do not have to say much, just tell them to get Dan’s Law passed before the election.

You can tell from how he wrote those few words above that Dr. Cargill is a doctor who feels that part of his work is getting all the support his patients need, even when that requires changing the law. Think about yourself or your own family. If you, or a loved one was very ill and had to move to be closer to the people who love you, so that they could be with you and look after you, is it reasonable that your health care would be compromised? Of course not! Thank you to Dr. Darren Cargill of Windsor for working so hard to change an unreasonable situation.

Photo credit

 

Ongoing Discrimination Against Women Doctors

An article that I read recently emphasized how long and how unsuccessfully women physicians have been struggling to improve their working conditions to the point where they might be able to find some time with families along the road to career success. It is over 40 years since I was a fresh-faced seventeen year old starting medical school and it can be disheartening at times to realize how little real progress has been made. Articles like Krause et al’s Impact of Pregnancy and Gender on Internal Medicine Resident Evaluations: A Retrospective Cohort Study make this all too clear. The sophistication of the study techniques adds credibility to women physicians’ and learners’ own reported experiences but, at some level, I think it’s unfortunate that years of reporting have never been enough to force change upon our hospitals and our medical schools.

My consideration of this study, which examined the evaluation of internal medicine residents after their own pregnancy or a partner’s pregnancy, led me to ask how (or whether) Canada’s medical educational colleges, the Royal College of Physicians and Surgeons of Canada or the College of Family Physicians of Canada, ensure that there is no gender-based discrimination in their own evaluation of trainees.

Neither College makes a statement that the organization is aware that there is gender discrimination in medicine, although this is no different from other professional credentialing bodies whose websites I examined. I also reviewed the website of the Association of Faculties of Medicine of Canada (AFMC). The AFMC does have an award, the May Cohen Award, for “outstanding effort or achievement in improving the gender equity environment in academic medicine in Canada.” However, there is nothing to indicate any work they are doing to ensure that there is no gender discrimination in the evaluation of trainees.

Most faculties of medicine in Canada do now have a person of reasonably high rank within a medical school tasked with addressing this gender-based discrimination and this is important to all women faculty, and even many men. I am beginning to think, however, that the problem is not bad intentions but rather implementing measures that have been proven to improve gender balance and reduce gender discrimination, and then tracking progress.

What could one do? Well, for one thing, both educational colleges could begin by recognizing that family life can really mess up a schedule. Both colleges have extensive details on how it manages accommodations for those candidates with special needs, but neither one makes any mention of whether family needs, e.g. the due date of your child’s birth coincides with the date of your examination, can be accommodated. At least half of medical graduates in the country would be significantly affected by this situation and the other half will likely also consider their child’s birth as the event they must attend.

This 2003 study on gender differences in academic advancement did offer some insight into the background of gender discrimination in medicine. The study also indicated some of the differences between the concrete treatment of men and women faculty that could be mitigated if departments and faculties of medicine undertook to implement change.

For example, from the study in question, women faculty were routinely paid less – they could be paid the same. Women faculty more often shared lab space – everyone could have their own lab space. Leadership positions were more often offered to men – departments could make a concerted effort to find leadership positions for capable women. These are all results that could be tracked for improved performance, and evidence of improved performance would certainly be welcomed and noticed by women. Also, while many medical faculties are working on these issues, it is evident from the article mentioned at the outset that there is still a long way to go.

But what could the educational colleges do about these issues? They could, in my view, acknowledge that they are aware of the gender discrimination that occurs in medicine. They could evaluate their own examination practices to ensure that the gender bias in these has been eliminated. They could emphasize to the Faculties of Medicine training their members that every candidate ought to have an equal opportunity to train and accredit programs accordingly. If they have taken any of these measures already, as a member and physician, I wish I could find that information on their website.

As someone who has spent over forty years working for gender equity in medicine, it would be reassuring to know that my efforts, and those of my colleagues, have not been for nothing.

#MeToo

Over the past week, the systematic victimization of women in Hollywood by a serial sexual predator has caused many women to look at their own life experience and consider whether they have also been the victims of sexual harassment, or worse, in their workplace. Today I have been watching the intensity of the #MeToo campaign build and I have been thinking of the experience with sexual harassment of most women physicians and medical students, including myself.

The essence of the #MeToo campaign is that a woman who has been sexually harassed copies a prepared text onto their Facebook page, or Instagram, or Twitter with the hash tag #MeToo to indicate that she has also been a victim of sexual harassment. This is the screen shot from my Facebook page:

 

As a physician who trained in the 1970’s at McGill University in Quebec, I studied medicine in my late teens and early twenties. When I applied to medical school, I was asked by one interviewer, “Are you interested in getting married?” Having always been a little too smart-mouthed for my own good, I answered, “I’ve only just met you. Can I have some time to think about it?” But over the years of repeating that story, no one was ever surprised that someone (a man) asked me this question.

My women colleagues and I became used to professors and staff physicians and senior residents enquiring about our menstrual cycles, our marriage plans and commenting on our suitability for senior leadership roles. At the time, I suspect that most women medical trainees were like me. We took for granted that this treatment was typical in medicine. All trainees were subjected to humiliation, verbal abuse and a work load that was essentially equivalent to slavery. The sexual harassment that woman trainees experienced was influenced by a medical environment, but women were mistreated in all work environments. In fact, the term sexual harassment may have been coined at Cornell University in 1975, but that was not the literature medical professors considered valuable.

Over the past forty years, with both male and female colleagues, many of us are working to change this culture in medicine and we even have days when we believe we have been somewhat successful. We can say that there is now excellent evidence that respectful medical workplace behavior is still a problem and that every physician or medical student or resident should now be aware of the principles of medical professionalism and disruptive behavior. That’s it, however. That’s the extent of our progress: that we should know better. Medical students and residents continue to tell us that there is a problem and women doctors and medical students on Social Medial today are recording their #MeToo’s along with women in every other profession.
Many women in medicine will say that this misogynistic treatment occurred mainly when we were students and residents, but it is just not true. Women are still being passed over for academic promotion, hospital leadership roles, association leadership roles and even association awards. If you look through this list of winners of the Canadian Medical Association’s Frederic Newton Gisborne Starr Award, you will find the name of one woman. Even if you don’t count all the early years of the CMA when women couldn’t be doctors in Canada – not one of the best reasons for this low number of women award winners, mind you – it is still a sad statement about how women are regarded in the profession. Finally, and probably most telling, the specialties in medicine with the lowest fees are those dominated by women.

From the moment in an admission interview that I gave that sarcastic answer to an inappropriate question, I have been working for medicine to be a more positive profession for women. The number of women in medicine has grown, but we still work harder for recognition than our male colleagues. We still do not call out sexual harassment in medicine to the extent that we should. For all my women colleagues who think I am exaggerating, I suggest that you have a conversation with some work friends about your own experiences in Medicine.

This is what you’ll learn after thinking about most medical workplaces: #YouToo

 

The Answer

I have not written much all summer because there is only one medical story on my mind. I have resisted publishing this story until I had something to say that might be helpful for others in a similar situation. Recently, one realization comes back to me again and again and for that reason I write about it now.
My beautiful baby sister is dying. I have been travelling to Halifax to spend time with her, knitting and talking while she lays in bed. I spend the days after these visits with a heartache that will not stop and I find now that I cannot stop thinking about her.
My sister has lived at least five years longer than her doctors thought she would. She has been able to see her daughter start and almost finish nursing school. She was happy to have been well enough to attend our mother’s funeral. If she has any pain, she minimizes it. If she has suffered any distress, she hides it behind her sense of humour. She is suffering from visual hallucinations, likely because of medication. Her thoughts on this: “At least it gives me something interesting to watch.” She is a true believer in positive thinking.
My sister is a great raconteur and she spends these Saturdays telling me the stories of her life. She talks of her friends from elementary school, high school and nursing school, most of whom she has found on Facebook. I am trying to write down what she tells me. When I read it back to her, she listens to my account and says, “Stick with quilting for a hobby.” She laughs at her own joke and then reminds me of how bad a baker I used to be. She tells me about patients she had cared for as a nurse and about how the most important parts of nursing involve “no science at all”. In the middle of one story, she stops and says to me, “I am so glad to see you. I don’t want you to be sad, you know.” I do not want to cry and the heartache inside me intensifies.
I have been contemplating how I will be a comfort to her. I want to be a welcome visitor regularly for as long as possible. It is easy for me to listen, as this is something I do most days at work. I only rarely struggle with people’s painful, emotional stories at work, but my sister is not my work. I have always been very good at separating work from family and, as much as I am diligent at work, I believe that my family needs me not to be a doctor, but someone better. Not that I don’t think being a doctor is important, but I really want to be a good sister in this time when she needs a sister.
This experience with my sister helps me to understand what it is like to be relying on doctors and nurses, how helpless one can feel, even when one has great knowledge. I find myself asking: “Do I remember how helpless a patient or their family member feels when I am speaking with them?” I know that my excessive emotional investment in a person’s care can lead me to errors – mostly sins of commission, rather than omission – but do I do what I can to help people feel at ease with being helpless?
I have been remembering the first time one of my patients died in my internal medicine rotation as a medical student. She was an older lady not expected to live. Her family took turns sitting at her bedside, day and night. I remember stopping to speak with them, day and night, getting them coffee or bringing them things to read or answering questions. I felt so badly because there was nothing I could do. I would sit with them and listen to their stories of their mother.
Thinking of my sister, I read through my journals of the six weeks I spent with this family and realized that I had the answer all those years ago, when I believed I had no answers at all. What on earth happens to doctors over the years that, as we become less helpless professionally, we seem to lose all the answers?

(Note: This is an image of Lawrencetown Beach, the Nova Scotia beach closest to my sister’s home.)

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.