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.)

Not Just Any Village

In recent months, I have come to learn more and more about the difficulties indigenous youth have in obtaining mental health services. In part, this is because local, provincial and federal news reports are calling attention to these difficulties but I am also very much aware of the needs of these young people in my own community and practice.

It is especially distressing that, despite the goodwill of governments and their financial investment, all the measures that have been taken seem to have no impact. How can this be?

I have come to understand this only in the context of being a mother myself and it is only using this reference point that I can make sense of why our efforts have been so ineffective. Let me see if this helps you to understand what is missing.

Imagine that your child has serious mental health problems. She is twelve years old and started using substances like cannabis, or alcohol, or solvents. (I have seen indigenous youth who started using substances, especially solvents, as young as seven years old.) School is a struggle and because of this, the child feels hopeless about the future. Perhaps as a parent, you can understand this because you were in the same situation at her age. You are desperate for your child to get help and so you agree that she should travel hundreds of miles away from home to get that help. You agree to this even though you will miss her desperately, and worry about her all day, every day. You know she is anxious and will cry because she misses you and her family, but you know that you cannot travel with her because there are other children to care for, or your job, or even because you yourself do not have the emotional strength to support her. Who cannot relate to the desperation of this situation? Of this parent? Of this child?

The research evidence is overwhelming that children’s health depends on family support. It takes the first year of our life to be able to walk. It takes us until we are two to utter a few words. We begin to have the skills to read, and write, and do math around age five. The evidence says that our enormous brains can take until age 25 to fully develop. We clearly need personal support to grow and develop and every culture relies on families to provide that support. When we are unwell, we need that support even more.

How do we expect these children to heal when we send them away from their families? If we must do this, could we not at least set up those sophisticated telehealth networks and facetime for parents and children and grandparents and brothers and sisters to stay in touch? “It takes a village to raise a child” is an African proverb that recognizes the universal truth that we need our families and kin – our village.

When I am having a hard day, I will often count my blessings and the blessings I remember first are the people of my personal village: my children and husband and family and friends.

Do we really believe that indigenous youth (or any youth) will become stronger mentally away from their families? Have we really learned nothing from the experience of those sent away to residential schools? Are we really not listening?

If those African philosophers will permit, I do have one slight modification to their proverb. I agree that it takes a village to raise a child, but not just any village will do. Each child deserves the support of their own village: their own family, their own friends, their own people.

(Photo credit: Family Ties sculpture by Kevin Barrett)

#endpolio

There is nothing in medicine more elegant than a public health strategy, especially one that is well-planned and conducted efficiently. One of the best examples of such a strategy can be found in the Global Polio Eradication Strategy. The hope is that such a strategy will do for the world what a similar strategy did for Canada.
In 1953, polio peaked in Canada and, in a one year period, there were 9,000 new cases and approximately 500 deaths. The Salk vaccine was introduced in 1955 and the Sabin oral vaccine in 1962 and within 20 years of the 1953 peak, polio was under control in Canada. In 1994, Canada was declared “polio free”. In its peak years, the disease was so widespread that everyone knew a child who had developed limb paralysis because of polio. Of those who developed paralysis, 5-10% could develop paralysis of the respiratory muscles which could result in their death. It was for these people that the iron lung was developed.
Polio was a major worry for Canadian parents in the 1950’s. For many children, polio would cause fever, fatigue, vomiting, neck stiffness, headache and limb pain. I had two aunts who were pediatric nurses and I remember them speaking about the helplessness they felt nursing a child who had seemed to have a mild illness and then suddenly began to develop paralysis. My aunts have spoken about how much parents would dread whenever their child developed a fever.
When the Global Polio Eradication Strategy was initiated in 1988, there were still 350,000 cases of polio worldwide. The strategy was launched in response to a Resolution passed at the World Health Assembly. Within 20 years, thanks to 3 million volunteers worldwide, there has been so much progress toward eradicating polio that the World Health Organization believes it might be possible to eradicate polio by 2018.
The last bastion for polio is in three countries: Nigeria, Afghanistan and Pakistan. The challenges that perpetuate polio in these countries include insecurity, weak health systems and poor sanitation. It is possible for polio to migrate from these countries to other countries whose health systems are weakened by the same factors. For example, cases of polio are now being tracked in Syria.
The public health professionals and advocates involved in the efforts to eradicate polio are determined and diligent, and they will succeed. From the offices of the World Health Organization in Geneva to the grassroots volunteers around the world, there is a hopefulness in their websites and statements that is undeniable. What must be done to achieve their goal is simple: every child must be vaccinated against polio. It takes a lot of work to ensure that this is happening but many countries, and not just countries as rich as Canada, are managing this.
It is easy to understand why this can be managed. Anyone who has witnessed the suffering of a child with polio will want to prevent it. These witnesses will work to ensure that every child can be vaccinated. It is simple and elegant. You can watch the progress on social media by watching #endpolio. You can watch public health at work. You can watch the end of polio.
(Credit: This image of an iron lung is taken from the website of the Canadian Public Health Agency.)

Command and Control and Bill 41

It’s clear that Bill 41 is what it’s come to for Ontario Liberals. I thought I would read through the Bill and try to come up with some insights into it that could be published at all rationally but, really, I’m just not good at working these things out. If you have a look at the text of Bill 41, you’ll see that it seeks to amend a number of other acts. Just to give you an idea of how sweeping the Act is, here is the list of Acts that will be amended if Bill 41 passes:

  • Local Health Integrations Networks Act.
  • Broader Public Sector Accountability Act
  • Commitment to the Future of Medicare Act
  • Community Care Access Corporations Act
  • Electronic Cigarettes Act
  • Employment Standards Act
  • Excellent Care for All Act
  • Health Insurance Act
  • Health Protection and Promotion Act
  • Ministry of Health and Long-Term Care Act
  • Ombudsman Act
  • Personal Health Information Protection Act
  • Poverty Reduction Act
  • Private Hospitals Act
  • Public Hospitals Act
  • Public Sector Labour Relations Transitions Act
  • Retirement Homes Act
  • Smoke-Free Ontario Act

To completely determine the full impact, one would have to see what the recommended changes mean in total and I do not have the patience to methodically figure out what all is being tinkered with in Bill 41.  A quick glance reveals the Government’s intention to close down Community Care Access Centres (CCACs) in favour of the Local Health Integration Networks (LHINs), a move that has many wondering how effective that will be at providing care. The further addition to LHINs of smaller administrative units (the so-called “Sub-LHINs”) is also evident, a measure that has front line care providers wondering once again how more administration favours patient-care. Other measures are the beginning of health care system changes, and, of course many are concerned that their impact will not be as positive as anticipated. Complex, extensive changes are being proposed for health care in Ontario. It doesn’t take any special skills to work out that Minister Hoskins is trying to shift a lot of legislation to bring health care more and more under his control.

He is seeking to affect Local Health Integration Networks, Public Health, Public and Private Hospitals, Doctors’ Practices. He’s even seeking changes in areas where he already has significant control such as the Nurse-Practitioner-Led clinics and with the Medical Officers of Health.

When I set out to consider Bill 41 for myself, I remembered that all this tinkering had something to do with Patients First: A Proposal to Strengthen Patient-Centred Healthcare in Ontario, a report released late last year that sought to address the need for better integration of Ontario’s healthcare system.

As a hospital-based psychiatrist who treats only adolescents and young adults, better integration sounds like a good idea and, in that context, I would love to have an opportunity to consider how integration might benefit my patients. Would it give a young man with Schizophrenia access to a Psychiatrist and Family Doctor in the town where he’ll attend university? What about access to care for street-involved youth? My colleagues and I have lots of ideas about how this might work. When I read the Patients First Discussion paper and Bill 41, I can see the parallels and how the Government is trying to do with legislation what would more effectively be done by discussion before implementation.

I know that the Ontario Medical Association and doctors in general have many concerns about Bill 41, but so did hospitals as evidenced by this report on the Bill when it was Bill 210 before the legislature was prorogued. While generally supportive, even Ontario’s nurses expressed concerns about the loss of nursing jobs because of the closing down of CCACs.

But it seems that the Ministry of Health and Long-Term Care is really only willing to discuss the situation on their terms. Because of this, it is left to doctors, nurses, and hospitals to write reports, appear before parliamentary committees, visit Members of Provincial Parliament and resort to social media in order to discuss legislation that will affect healthcare profoundly for years to come.

Goodness knows, change is absolutely necessary in the health care system in Ontario. Without all the Command-and-Control, Ontario doctors and nurses and hospitals are working toward better integration. But it seems as though our pace or our proposed direction are not good enough or fast enough, or something, for Minister Hoskins. So this is what it’s come to. There is no need to analyze Bill 41 extensively. The government will tell you what to do.

 

Living the Dream

I have not written in about ten days. I have been busy living a dream. On May 2, I began a new job as the Director of Youth Psychiatry at The Royal. This is truly a dream come true for me: to provide guidance to the best team of mental health professionals and to consider how to address the mental health needs of the 16 – 18 year olds in Eastern Ontario.

As I embark on this challenge, I am buoyed by the good wishes of my colleagues. I have worked with many of the staff for fourteen years and their dedication to patients has always been inspiring to me. If it were not, it would have been impossible for me to even consider this new job. The staff go above and beyond their normal duties to ensure that patients get the best care and that their families understand that care.

In the few days since I started this job, I have found myself looking for extra hours in the day and extra weeks in the calendar. I do not quite realize that I’m going to have to give up some of my patient hours to get this new job done. As I set about managing my time, I thought, “I cannot give up the Thursday clinic” and “I’ll still be able to do Dialectical Behaviour Therapy”. “Are you still going to be able to see me?” is the most common question I hear from my patients. Everyone who knows me knows that I will not just drop anyone so the last question is easy to answer, but some clinical commitments will have to change – I almost get it.

Another interesting thing is that I have meetings – more meetings than I ever thought possible, for committees identified only by acronyms or letters. I asked someone today, ”What is the ABC Committee?” You know you are in serious difficulty when the acronym listed as words does not help you understand what a committee does.

The nature of a physician administrator’s work brings a doctor directly into the conflict between the patient and the system, with the necessity that the patient must get the best service and care at the same time as the system improves. Finding the best care often requires the system to be more flexible than is possible. Improving the system often changes many of the elements of care that patients and their families felt were helpful.

Doctors are the one link in the health care system permitted a degree of professional autonomy because of the mechanism by which they work in a hospital. Instead of being employees of a hospital, doctors are appointed to a hospital’s medical staff through a process in which they have privileges for certain activities, such as admitting patients. Balancing professional autonomy with a hospital’s public mandate is a conundrum that a physician administrator has to consider – it’s so much easier to fall back on clinical work.

Having said this, an administrative role such as my new job gives a doctor a chance to facilitate the changes that will improve care. I’ll decrease the paperwork, get electronic prescribing, improve the electronic health record…I’ll make a difference. That is the hope. Even if I don’t understand what my committees do, or how I’m going to do all the clinical work I want to, I know that having this new role is gives me a unique opportunity to help both patients and my local healthcare system. Someone said to me, ”I can see how pleased you are to have this job, you brighten right up when you talk about it.”

I hope that I’ll wake up gently as I begin to realize what I’ve gotten myself into.

 

Medical Professionalism II

I read this op-ed by Dr. Louis Francescutti on Tuesday evening after a long day. Perhaps it was because I had spent the day trying to convince adolescents’ parents that scolding never works, perhaps this tone still grates on me since I was an adolescent, but whatever the reason, Dr. Francescutti’s nagging that my work was not good enough and I wasn’t accountable set me off.

I spend my days trying to convince youth that my suggestions are not meant to ruin their lives, but rather to treat their auditory hallucinations or their anxiety or their depression. I cajole, beg, coax, reason, flatter, give articles, demonstrate apps – in short, I’ll do anything to get my young patients to do what they must to be better. When they are most despondent, I say, “We’ll never give up. We’re going to keep going until you feel better.” Persistence is my best and worst quality.

There is one thing, however, that I never do. I never scold people, never lecture. I learned when I was 23 years old and just starting my residency in Psychiatry that scolding doesn’t work to change anyone. The above rant is my way of commenting that the tone of Dr. Francescutti’s opinion article on medical professionalism did not open my mind to his overall message that greater accountability is needed in the medical profession.

Sometimes a writer will seek to make a point by being provocative. The kindest readers believed this to be true of Dr. Francescutti. Again, my experience has taught me to strive to be persuasive and to find the points of consensus among people who might otherwise disagree. The research in my discipline, psychiatry, shows that this model works best in circumstances where there is conflict or tension and where the goal is to help one person see another point of view, often a hurtful point of view.

In many parts of Canada today, provincial governments are scolding doctors in much the same manner as Dr. Francescutti scolded us. Some commentators suggested that doctors are overly sensitive but mostly, I believe, we feel hurt. The partner we want to have in transforming the healthcare system, the government, has rejected all of our suggestions and, since it can, has decided it is just going to set up the system as they think is best. I can certainly attest that, in travelling around Ontario talking to doctors in every specialty, of every age, after I hear how angry doctors are, I do hear how hurt they are that their work is so underappreciated and undervalued.

When the atmosphere within medicine is tense, filled with mistrust and hurt, tone is even more important and I believe that Dr. Francescutti overlooked this in his comments. In times like these, people need their leaders to say,

“Remember who you are and what you do for your patients.”

“Yes, we need to do more, but don’t you always do more?”

When you’re encouraged, no matter how bad things are, you can say, “I didn’t quite get that, Dr. Francescutti. Could you say it again, maybe a bit differently? I think you’re making some good points.”

Health care transformation should be a dialogue: What do you think we need to do?

Ottawa Citizen Letter

citizenletterI find that I have written a surprising amount about Physician Assisted Death for someone who does not expect to be on the front lines of this new measure. I hope that the medical community can lead the debate, asking patients to consider how they want this new medical treatment to work.

All the people with time to write are certainly drafting their views, but the debate also needs to be informed by what my colleagues are thinking, especially those on the forefront of palliative care and who work with patients with terminal and irremediable illnesses.

I wrote a letter to the Ottawa Citizen asking them to include some doctors’ views in the debate. This is a link to the letter.