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.

 

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.)

Red Sky in the Morning

Yesterday I travelled to Nova Scotia to visit my sister. I took an early flight that travelled into the sunrise and I could not help but notice that the sky was red, and I remembered the second half of the old rhyme:” Red sky in the morning, sailor’s warning.”

When I greeted her, my sister needed to be reminded who I am, although she began a conversation about her health readily enough. “I’ve got anemia now. They’re considering giving me a blood transfusion and I’m not sure I see the point.” She paused. She gave me a sidelong glance and said, “Just because I didn’t remember your name right away doesn’t mean I’m incompetent, and if you begin to think I am incompetent, don’t say anything.” I was contemplating what the link is between memory and competence when my sister added, “They don’t put enough items on those advance directives,” she said, “I have to consider every single, possible situation that might come up.”

“Such as?” I asked.

“Well,” she said, “I first said yes to the blood transfusion and then found out that I’d have to go to the hospital for this. I still can’t figure out why. I could probably still set it up myself. I forget stuff, but I haven’t forgotten much nursing. They drill everything you need to know into you forever. I don’t want to go to the hospital. I’ll just deal with the weakness. Once they take you to the hospital, you can’t be sure you’ll get away. I remember that too.”

What does memory have to do with competence, if anything? When memory is unrelated to understanding a medical situation, it likely has nothing to do with competence, but I am going to have to think about this. I assess the capacity of patients to make their own decisions on many days at work, but my patients rarely have memory problems.

Being with my sister in this period close to her death has really driven me to contemplate how I’ll ensure that my wishes are followed when I am at the end of my life and may not be able to discuss or assess these decisions for myself. I am such a control freak that I can see these situations being a cause of great distress, and my admiration for my palliative care colleagues intensifies once again. I can imagine families in which each sibling believes their parent would want completely opposite measures to be taken – I know some of these families already.

The statistics regarding what most of us would like at the end of our lives versus what does happens are at odds. Most of us would like to die at home, but most of us are brought to hospital. What needs to be done to change this outcome? Most of us are brought to hospital when it is no longer possible to keep us comfortable at home and I suspect that my sister is correct. It’s not possible to contemplate beforehand every situation that might need to be in an advance directive to ensure that your wishes are faithfully followed.

My flights to and from Halifax were trouble-free. The weather was fine in both places all day. The warning was for a more ominous situation than weather, and I’m not sure what steps to take while I am still competent.

Take warning.

The Other Side of the Bed Shortage

I am spending my day on the other side of the hospital bed shortage. I am sitting with my sister in the nursing home where she is spending the final days of her life. She waited seven months in a hospital bed for this space to become available.
Around us, all is peaceful. People down the hall are playing BINGO. The lady across the corridor has visitors for her birthday. It’s a far cry from the hospital because it’s quiet.

A hospital is a noisy place, day and night. During the day, there are so many people: nurses, doctors, technicians, dieticians. There is all the activity that comes with them. There are also announcements: codes, visiting hours, when the coffee shop is open. There are serious conversations at bedsides and few private spaces. Everyone seems to be hooked up to at least one machine. There are, however, about 12 – 20% percent of patients who are not hooked up and who do not have conversations. These are the people waiting for a quiet space in a nursing home or palliative care or long term care.

Reading articles about Emergency Room wait times or hospital bed shortages, one is given the impression that patients do not want to leave their hospital bed. However, this is not true. Most of them, much like my sister, are relieved to have been moved to a quieter setting. “I’m glad not to be a bed blocker anymore,” my sister says when I first see her in her new home, “I don’t need all the bells and whistles.”

My sister likes this setting in many other ways. She has a view of the Nova Scotia countryside outside her window. There are sitting rooms throughout the residence, with televisions and plants and books – quiet, cozy corners of a type not seen in hospitals. There is a full recreational program and food my sister enjoys. There are two cats.

“The cats are good,” my sister says, “They keep down the mice. You can’t have cats in a hospital.”

“Don’t tell me there are mice in hospitals,” I reply.

“Okay, I won’t,” says my sister who was a nurse, “but you know that’s the kind of thing the doctors never want to hear.”

She goes on to speak about the guilt she had felt when she was “taking up a bed”. She considered that maybe it was because she had been a nurse. She remembered how exasperated she and her colleagues had felt about long term care patients in acute care beds. She hopes she was not too much trouble to the staff when she was still in hospital.

As a child psychiatrist, I have not had to wrestle with bed shortages as other doctors have. Everyone agrees that there is a significant need for long term care beds, but it does seem as though much of the advocacy for these beds comes from the acute care side of the occasion. It comes from the concern that patients are receiving their care not from the relative comfort of a hospital room, but from such places as the corridor of the Emergency Room or closets or any space that can be found. We would all agree that these are not good places to receive acute medical care.

But there is a need for us to be aware that there is also better care available to those patients like my sister who don’t need an acute care bed, but who cannot be comfortably cared for without significant nursing and home care support. People like my sister do not have a lot of energy for advocacy, nor do their families, but it’s important to remember them.

Our lives are important at every stage.

(These are the 2 cats who live at the nursing home. This picture is from Facebook.)

Bill 41 – More Questions

Last week, Dr. Del Dhanoa, a radiologist from Northern Ontario, asked some questions that I decided to answer as another blog since they continue the series I have been working on. The questions also spark further debate about whether the Minister of Health and Long Term Care has completely explained his vision of health care in Ontario, given the degree of change being undertaken in Bill 41.

This is the first question:

“What are your thoughts about Hospital CEOs and Boards? Will they eventually go by the wayside like British Columbia because the LHINs (and Minister) have much more direct control over Hospitals with Bill 41? A Hospital Board Director told me that she/he was ready to hand in his/her resignation after reading Bill 210/41. They feel like they no longer serve a purpose and, after all, their time is largely volunteer based.”

I served on the Board of my hospital when I was the President of the Medical Staff. What is most impressive about hospital boards is how deeply they draw into the fabric of the community in which they are located. My main clinical appointment is at the Royal Ottawa Mental Health Centre, a psychiatric hospital in Ottawa. The members of our hospital Board of Trustees include prominent local lawyers, very senior civil servants, patient advocates – all very busy people who volunteer their time to ensure that the citizens of Ottawa have access to the best possible mental health care. They are all volunteers and commit a significant amount of time to the work of the hospital. They have a vision for how the community can best be served that is grounded in the reality of the advantages and disadvantages of living in the national capital and its region. Bill 41 would add another lens to that vision and, unfortunately, it seems to be a lens that could override some of the most important decisions they make.

In the narrative leading up to his question, Dr. Dhanoa mentions the reaction of one of his hospital’s Board Directors. My husband had served on the board of a local Ottawa hospital and he too believes Bill 41 as an interference that that was unneeded. He spoke of the fact that every new directive or initiative from government just added time to board and committee meetings since one often had to work patient needs and priorities around them. For example, governments have had many interventions over the years to improve wait times, as if doctors and hospitals were not already working hard to do this. Really, does the Minister believe we are trying to increase wait times? Or decrease access? Doctors and hospital boards hear concerns directly from patients and can tailor a local response to their concerns.

Here is Dr. Dhanoa’s second point:

“The language in Bill 41 is pretty clear. The Minister can act to change Hospital mandates in the “public interest” and this includes activities that decrease Hospital length of stay. As you know, LOS is the basic currency describing the activities in hospitals: from the Emergency Department to the wards, to the lab and the medical imaging department. Everything in hospitals is based on LOS.

So, really, Bill 41 gives the Minister a lot of power to change the way medicine is practiced in all of Ontario’s Hospitals to meet the LOS metric. While on the outside that sounds great, I have many reservations on how that will play out in Ontario especially when physician input is ignored.”

I think that Dr. Dhanoa makes his own point very well and underlines how important it is for physicians to sit on and participate in their hospital boards because it is one important way in which we have input into how health care is delivered. Having said this, it was the decision of Premier Wynne’s predecessor to stop physicians from having a vote on hospital boards under the changes the Liberal government made to the Public Hospital Act in 2010. Doctors realized then that their input was being marginalized by the Liberal government in Ontario.

The problem with ignoring the input of doctors is that we spend all day every day working to integrate patients’ health care. Integration is the goal of Bill 41. Why ignore the concerns of those who actually understand how this might be achieved?

Bill 41 and Hospital Physicians

This installment on Bill 41 comes after a longer review of the Ontario Hospital Association’s backgrounder on Bill 210 released earlier this year. They have not published anything specific to Bill 41.

My personal concern about Bill 41 is based on my alarm over the extraordinary amount of control the government feels it needs over what doctors, agencies, hospitals and LHINs are trying to do locally to look after patients. This is the fourth time I have written about Bill 41 and the longer I look the more alarmed I become. What on earth makes the Toronto-based Ministry of Health and Long Term Care (MOHLTC) believe it has the answers to how health care must be organized in regions so different and so remote from each other that many of the citizens in one have never been to another?

The concerns about Bill 41 for doctors in hospitals are around these parts of Bill 41:

1.       Expanded Ministerial Authority over Hospitals

2.       LHIN Functions and Governance

3.       Home and Community Care

4.       Public Health

Let’s begin with the Expansion of the Minister’s authority over hospitals. Any time the government feels a need to expand its legal authority, it’s important to examine why their moral authority has not been effective in driving change. What Bill 41 really does is allow the Minister to override the decisions of local hospital boards, setting directives and standards. Having served on my hospital’s board in my capacity as President of the Medical Staff Association, I can state that our hospitals in Ontario are well-governed, put patients first and that their boards are populated by local experts who have the best interests of the patients and population at heart. The Minister has not given one reason why he needs to interfere with this. The doctors in a hospital can presently raise concerns with a Board through the Chief of Medical Staff or the President of the Medical Staff and their opinions are sought out and seriously considered. This is very different from doctors’ experience with government. Further authority for the Minister over hospitals is not good for either hospitals or the physicians who work in them.

Secondly, let’s consider how the changes in Local Health Integration Network’s (LHIN) functions and governance could affect hospital physicians. The bill expands the list of health service providers to include family health teams, hospices and “any other person or entity set out in regulations”. Some family health teams and hospices are hospital-based and all of those are staffed by physicians, so these doctors will be affected. In fact, it is important to remember how many primary care physicians provide hospital services. We tend to think of consultants being affiliated with hospitals but many hospital emergency rooms, operating rooms, wards and other services depend on family physicians to provide care. Many Emergency Rooms in smaller communities only remain open because their dedicated medical staff provide extra coverage. They don’t need Bill 41 to tell them what needs to happen.

What I find most concerning about this section on LHIN functions and governance is that the Health Professional Advisory Committee, which all LHINs must have at present, becomes discretionary under Bill 41. When LHINs were first introduced by the Liberals in 2006, the Health Professionals Advisory Committees were criticized as providing too little direct physician input into local health decisions. Now LHINs will have an option of excluding this group altogether. Why is there this need to exclude doctors from all healthcare decision-making?

As for home and community care and public health, all physicians must access these services for their patients and this includes hospital physicians. As a physician, I depend on community services for my most disabled patients. These services need more front line staff and a better capacity to deliver service in a timely fashion, not this extra bureaucracy that will tie up caregivers with paperwork.

Most importantly to all doctors who work in hospitals, all of us do see ourselves as being community physicians as well – after all, the hospitals where we work are in the communities where we live and are part of the fabric of our towns and cities. Hospitals and their medical staff contribute to the prosperity of towns and cities. Doctors care deeply about the prosperity of their communities and the quality of care provided by hospitals. Bill 41, with its need to bring greater control over health and health care decisions, is insulting doctors by giving the impression that these measures are necessary. The doctors in my community are working very hard to ensure that our care addresses patients’ needs. Many of us are volunteers on hospital boards, hospital committees, LHIN committees and Health Professional Advisory Committees. Is the Minister suggesting that we should stop? That’s what it feels like.

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Book Review: Stir

Stir: My Broken Brain and The Meals That Brought Me Home is a cross between a memoir and a cookbook. The theme, however, is not one that many can relate to, although the book will help the reader understand what it’s like to live recovering from a brain injury. At age 28, Jessica Fechtor was on a treadmill when an aneurysm in her brain burst. This is her account of how her favourite recipes helped her to recover.

As a physician, I was particularly struck by Ms. Fechtor’s accounts of her encounters with the health care system. These were certainly a stark reminder that, even in the United States, care is not always what it could be. Consider this description of an occupational therapy assessment:

‘ “How did you bathe before you got sick?” The healthy, unterrified version of myself would have realized that all of this “before you got sick” business was just standard language. The therapist had probably been taught to ask the same things in exactly the same way of each of her patients, many of whom – unlike me – had limited mobility before whatever had landed them in the hospital, orhad suffered debilitating physical or cognitive deficits. But hadn’t she read my file? And if she had, and she still thought these questions applied, was I worse off than I knew? Panic crept along the back of my neck.

‘ “I got into the shower. I washed my hair.” My throat was so tight that it hurt to talk. Why was I speaking in the past tense?

‘ “Can you show me how?” she asked. I lifted both my hands and wiggled my fingers around. She scribbled another something down. Silent tears had begun to squeeze out from the corners of my eyes. I wiped at them with the back of my hand.’ (Page 143)

As well as this interaction, the account of a hospitalization when Ms. Fechtor develops a fever after surgery would leave anyone with concerns about health care. In other words, this is not a book for the fainthearted. Having said this, the book also describes how the health care system comes back after a worrisome encounter and goes on to deliver topnotch care. It is this kind of honesty that characterizes the best memoirs.

Leaving the health memoir to consider the recipes, their integration into the text is extremely powerful. As one reads why certain recipes are chosen, the reader realizes in no uncertain terms that food facilitates health and healing. Ms. Fechtor traces the origins of some recipes to her childhood, others to her travels, but all of the recipes are linked to her own life. It is because of this connection that the food becomes an elixir for her.

Think about this for a moment. Think of the foods that you want when you’re not well. Food, preparing food, sharing a meal are linked to healing and comfort in all cultures. Fechtor’s memoir reminds us of this, and tells us in particular how the recipes she cooked, and that others cooked for her, helped her to recover. Food is not just about nourishing the body; it is about nourishing the spirit and this nourishment is linked inextricably to recovery.

An example to illustrate this idea could be chicken soup. Many people have a chicken soup recipe in their family that is felt to be almost a magic remedy. This book does have a recipe for chicken soup – and its history in Ms. Fechtor’s family. She also provides the secret to producing a clear broth, but I’ll let you discover that for yourself. If you’d like to get a feeling for Ms. Fechtor’s writing, you can find it on her blog. You can also find some of the recipes there. Why not find one and think about the food you like when you’re not feeling well? I made the pumpkin bread.

(Note: I read the first hardcover edition of the book published in 2015 by Penguin.)

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