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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Bill 41: Infrastructure Investment??

Minister Eric Hoskins’ Bill 41 continues to be confounding for many physicians, but possibly the most consistent question I am hearing is: Why do we need another layer of bureaucracy? How will sub-LHINs improve the system? One very intriguing twitter answer that I received suggested that this extra bureaucratic layer will serve as “administrative infrastructure” for primary care. That is something worth considering since I agree that Family Doctors need much more support than they are currently receiving.

Before I move directly into the discussion, I want to stress that I am not including those primary care providers who are not physicians in this consideration. The reason is that I want to focus on the infrastructure resources needed to deliver primary care and the Nurse Practitioner- led clinics are tremendously well-resourced, with all expenses already covered by the government, a luxury that physicians cannot access to the same degree which is the point here. https://www.aohc.org/nurse-practitioner-led-clinics

Remembering that the point of Bill 41 is better integration within the health care system, one of the tools that can best assist with this is the Electronic Medical Record (EMR). At its best, the EMR can facilitate a patient’s health information being updated quickly, accurately and efficiently, hopefully from every care provider and facility generating information. This, unfortunately, is not at all the case with most EMRs in Ontario. For example, wouldn’t it make sense that anytime a patient has lab tests completed anywhere in the province that the results of these tests would be immediately sent to the records in each of their doctors’ offices? Wouldn’t you expect that discharge summaries, consultation reports, and other documents related to a patient’s hospitalization would automatically be sent to their family physician? Wouldn’t it be great if, no matter where you were, a doctor looking after you could access your health record with your permission from anywhere? Well, that is certainly the vision but it is not at all the reality for most patients in Ontario. As a practicing physician with the best Electronic Medical Record that my underfunded hospital can afford, my patients do not have access to any of the above elements of an EMR. The electronic medical record is administrative infrastructure that can facilitate improved integration for patients in Ontario today and the funding for this important tool has been cut by the Government. Doctors are now expected to fund all improvements to the functionality of the EMRs in their offices.

How will another layer of bureaucracy solve the problem of insufficient funding for electronic medical records?

Let’s think of other administrative resources that could improve integration of primary care in Ontario. Many patients may suddenly need housing and financial supports after falling ill and become unable to work. Social workers might be able to assist them in navigating Ontario’s complicated social welfare system, or Canada’s employment insurance supports. But no social workers are being funded for patients.

The Community Care Access Centres are being transferred to the Local Health Integration Networks (LHINs) in Bill 41. The CCACs provided services while the LHINs provide administration. It is not yet clear how the services are to be developed. What is even more worrying is that the Registered Nurses Association of Ontario (RNAO) is concerned that nursing jobs will be lost with the transition. I would like to be assured that nursing is not being replaced with administration –  what Family Health Group, or Family Health Organization or Family Health Team would not benefit from more nursing support?

These are just three examples of support services that would help primary care physicians better integrate patients’ care within the larger system of health care in Ontario. The last support, nursing care, cannot be seen as “administrative infrastructure” in the same way as EMRs and Social Work are, but they are a resource that would be a great benefit to patient care.

These are the kind of practical resources that would help family physicians in Ontario feel confident that the Government of Ontario understood their day to day struggles integrating their patients’ care. If the Government of Ontario had asked doctors what would help, these are the kind of answers they would have gotten, I believe. I still have not heard any doctor say that more administration was the answer.

Medical record concept using stethoscope in front of pile of paper. Selective focus

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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Pool Shark

If you have a look at the picture above, I’m sure you’ll agree that I am an unlikely pool shark but some pool skills are a good tool for any psychiatrist who looks after adolescents. A game of pool is an excellent opportunity to have a conversation with a young person or a group of young people and it really helps if you play well enough that they’d like to have you on their team. It is also always an excellent topic of conversation for a patient to have with new people in a group when you cannot figure out how to break the ice: “Have you played pool with Dr. Beck? It’s a lot of fun.” It seems that it’s worth a laugh for everyone to see the look on the newbee’s face when you ask that question.

My patients are always interested to know how I learned to play. I have to confess that I would love to play well enough to be able to say, “I put myself through medical school playing pool.” I am very proud that I did learn to play from my patients and from one young woman in particular who explained to me that it was better if we were “doing something and not just staring at each other.”

It is from this statement that you learn the most basic interviewing skill when dealing with adolescents (maybe anybody). Don’t stare, keep your expression neutral and nonjudgmental and don’t say a word unless you have to. It’s better to know how much cannabis someone is using daily than it is to know, “Do you ever worry that that’s too much?” You want to understand what is really happening in someone’s family and they are more likely to speak about this when you’re shooting some pool than if you’re both sitting in stiff little chairs while one of you is asking “empathic” questions.

Another reason to do something enjoyable with a group of teens at times is to model that pleasant, healthy activities can improve one’s mood. Laughing at the psychiatrist who’s old enough to be your mother as she tries out a new technique is also good for everyone’s mood. First of all, laughing is just good for you and pool, like any game, is a great teacher. You learn how to be a good loser, a gracious winner and a kind teacher from a game.

Why am I thinking about pool today? I was going through my notes today, remembering how I learned to play pool originally. It was 10 years ago and a young girl joined the group who was very hardened, with a lot of bravado. She came to group after group without saying a word. She had come from a chaotic family situation and had lost her only positive contact, a sibling, to suicide. She was barely hanging on herself.

Those who know best insisted that she come to a group program and for months we could not figure out why this could possibly be a good idea since she said absolutely nothing. Adolescents are often kinder than we imagine – they offered this girl seats in the circle, snacks, conversation – even though she was surly and bitter.

One day, a pool table arrived – a gift from hospital volunteers – and we gathered around to try it out. I couldn’t play at all then and hit the 8 ball. “Oh, God,” she cried out and dumbfounded we watched as she broke and ran. (Broke and ran like in pool, not as in ran away.)

After all these years, when I consider my years of education, and continuing education, and ever increasing years of experience, my perspective on my fancy title and credentials remains realistic. The reason lies in the humbling realization that one of my best interventions is, “C’mon, it’s your break.”

Patient Accountability: What’s the Big Deal?

With every doctor, pundit and reporter out in the media about doctors’ fees presently, I thought I would let them go at it and consider instead an item that I consider to be the “elephant in the room” of physician compensation negotiations everywhere in Canada.

Almost every physician in Canada that I know believes that our health care system would be much improved if patient accountability was expected of Canadians. Governments, however, have been opposed to introducing any patient responsibility despite the fact that there is significant evidence that there would be benefits for both the system and the patient. In fact, in conversations about how to manage the costs of the system, patient accountability is that subject which the government will never introduce, no matter how much doctors want to talk about it.

What surprises me about this is that many of my patients and their families are perfectly prepared to accept some degree of responsibility. What’s important about this is that my patients are mostly adolescents, a group that many believe are not at all prepared to be accountable for many of their actions.

A number of my patients, aged 16 to 18, come initially because a parent “forces” them to come. They will tell me they don’t want to be with me. I explain that I only want them to stay if they want to be there. Many will say, “Isn’t it wasting your time if I leave?” I can then point to a stack of paperwork on my desk and say, “I’d rather see you, but I have things I could do.”

Still, many are not convinced. It is absolutely clear that they have a sense that it would be wrong for them not to honour the appointment, even though they did not want it and usually did not make the appointment. That is the degree of responsibility that my young patients feel toward an appointment with a doctor for medical care.

You can also imagine that their parents feel the same way –I know it by the look on a parent’s face when I tell their son or daughter that I only want them to stay if they want to be there.

There are exceptions, of course, to this experience but the patient who wants to completely opt out of being in a responsible relationship with me is actually rare. Considering that supposedly irresponsible adolescents can accept responsibility for their mental health treatments, I am driven to ask: why can we not expect patient accountability at the system level?

What might this entail? In my clinic, it means that, first of all, you keep your appointments and, if you can’t, you let us know within enough time that we can book someone else. Each patient is allowed two appointments that they can miss with no notice because we recognize that sometimes cars don’t start in winter, people get sick and it took longer to try on your prom tuxedo than you had planned (a real reason). If you miss the third appointment, we close the file. We also expect people to get their bloodwork and other tests done and to try to remember to participate in treatment by doing their Cognitive Behaviour Therapy Homework or taking medication. My experience is that people accept this.

I am, therefore, truly mystified by governments’ reluctance to work with doctors to establish patients as full partners in this system by providing not just benefits but responsibilities. It seems that governments believe that expecting patients to be accountable limits patients’ freedom in some way or is not in the spirit of a “universal” health care system. I think that patients would welcome being told, “We’re working with doctors and hospitals to ensure that you have access to the best health care but we need your help managing this.”

I know that readers will have different views about patient accountability, and all of us have had negative experiences with inappropriate use of our health care resources, by any and all partners in the system. But we cannot just continue to ignore this.

It’s time to deal with the “elephant in the room”.

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