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.)

Seria Una Cruz Verde?

I am watching the news from the Venezuelan election and wondering what I would do if I were a doctor in Venezuela today. The election is the most recent assault on the people of Venezuela by their President, Nicolas Maduro. By the end of the day, or within a few more days, he will become the dictator of Venezuela. The making of a dictator is the undoing of security in a country and many young Venezuelans have seen their country go from being the richest country in South America in the 1980’s to having an 86% poverty rate in 2017.
Since April, over 100 young people have died in protests in Venezuela. That total increased by 19 this weekend as protests over the election intensified. Venezuela’s neighbours, Brazil and Colombia are bracing for a refugee crisis. The country is experiencing a food security crisis and medicines are not at all available.
The scale of the humanitarian crisis was confirmed by Dr. Douglas Leon Natera, President of the Medical Federation of Venezuela. Natera is reaching out to colleagues in the region. This is a communication to Dr. Maite Sevillano, Vice President of the South American Region of Medical Women’s International Association:
“To the friends: The health sector being headed by the doctors is only attending emergencies, trying to continue to give priority to children, pregnant women and the elderly. These resolutions are being followed by 96% of doctors in public services and 85% in private.” (Personal Communication to dra Sevillano)
Venezuelan physicians are especially concerned about the impact on children, who have been most affected by the food insecurity. Also, youth have been the majority killed in protests against the Maduro regime, according to Dr. Natera.
In Venezuela, however, some of the heroes are also young. Medical students and recent graduates of the Central University of Venezuela have banded together as volunteers to provide first aid and whatever care they can to those injured in protests, on both sides. However, despite the group’s impartiality, government forces usually see them as part of the protest. As they help, some have been injured and one of the volunteers was killed. To identify themselves, the volunteers wear white helmets with a green medical cross and carry white flags bearing the same green cross. Cruz Verde (Green Cross) is what they are called and those injured in protests call out for them, and pray for them.
As most of the volunteers are in their twenties, they were born when their country was still wealthy. They have witnessed its disintegration. They are studying – and learning – the basics of public health, emergency medicine and the impact on health of a humanitarian crisis in the most unfortunate way. Their older colleagues, led by Dr. Natera, are also working to provide basic medical care to starving and desperate Venezuelans. When I read about their work and watch youtube videos of their working conditions, my own first world medical concerns dissolve into this philosophical question:
“Seria una Cruz Verde?”

(Photo credit: Christian Science Monitor)

Journalism and the Scientific Method

Three years ago, I reviewed Seth Mnookin’s book The Panic Virus. In that review, I noted the importance of science reporting in assisting the public’s understanding of scientific research and science in general. Keeping this in mind, I want to highlight an article from the Ottawa Citizen by Elizabeth Payne, a Postmedia health reporter. The article addresses the question, “Could infections cause Alzheimer’s?”

In her article, Payne considers the controversy about the link between microbes and Alzheimer’s disease. She reports that those scientists who favour the microbe hypothesis have made a widespread plea that the public “embrace” their hypothesis.

Payne’s reporting is factual and clear. It leaves the reader with the opportunity to consider whether the microbe hypothesis research supporters or the plague hypothesis supporters are more credible. It calls upon us implicitly to consider both theories, but to remain open to the results of the ongoing research on Alzheimer’s disease. To be open to possibility, to be able to assess alternatives as revealed by rigorous study, is the essence of science. Through her reporting, which points out the conundrum of a controversy in scientific research, Ms. Payne makes it clear why the public should not, in fact, “embrace” a hypothesis until the research and much more consideration yield a clear result.

I am a clinician, not a researcher, but I work in a university teaching hospital affiliated with a research institute and so I have participated in clinical studies. When focused on one’s own research study, it is easy for a researcher to become attached to trends that one believes are emerging from one’s research. I have done enough research to realize how dangerous this is. I have learned that one must be faithful to the scientific method that has fostered the real breakthroughs.

The scientific method is systematic and allows for the modification of the hypothesis. Learning the scientific method is one of the first lessons in science class in elementary school. I remember having to devise experiments in Grade 3, not for a science fair project or research but to demonstrate that I understood the scientific method. That same lesson was repeated at the beginning of many grade school science classes for years to come. The scientific method is fundamental but, like all fundamentals, it is more easily expressed than understood. Ms. Payne’s excellent article reported some news from medical science and reminded us of how difficult it is to learn the scientific method.

(Note: The excellent graphic depicting the Scientific Method included here comes from the Science Buddies Website. Science Buddies is an award-winning, not-for-profit organization dedicated to building scientific literacy.)

Book Review: The One Memory of Flora Banks

I read The One Memory of Flora Banks (Author: Emily Barr at www.emilybarr.com)  last weekend when I was on call at the Children’s Hospital of Eastern Ontario. On a day when I was providing service to a busy emergency room, it grounded me to be considering the plight of a young person who had suffered considerable trauma and had lost her memory because of it.

This is the adventure of a 17 year old girl named Flora Banks who has anterograde amnesia, which means that she cannot remember anything that happened after the event which caused the amnesia. To help her manage her life, Flora writes down every important thing that she must remember. Many, many things she wants to remember are written into notebooks, but the most important things are written on her hands. Of the important messages, one is prominent and it is a tattoo that says: Flora be brave.

Flora’s memory problems, we are told at the beginning, are the result of a brain tumour that was removed at age 10. The book is written in Flora’s voice and so the reader can experience what it is like to live inside Flora’s brain. To an observer, it would seem as though Flora has lost a lot of her capacity. But from inside Flora’s brain, the reader realizes that this is not the case. One of the most important messages of this book is never to underestimate a person’s abilities.

Even though Flora is capable of more than is evident, she is very hopeless about what she has lost and worries about what her life holds. One evening this changes when a boy kisses her and Flora remembers this kiss for longer than her usual several hours. Immediately, Flora is hopeful that this boy, or his love, holds the answer to her regaining a functional memory. She sets off to find him, despite the limitations of her memory and without anyone supporting her.

There are many days in my work as a psychiatrist for youth that I see young people coping with having a chronic medical condition that could limit what they might achieve. Like Flora, they have periods of hopelessness when they sadly wonder what their lives will bring. But many of them, like Flora, refuse to be defeated by despair. I don’t care if they disagree with me about their medications, or their symptoms or their diagnosis. I hope that I am true to the spirit of hope that lives in them, and I work to be worthy of that positivity.

This is an important book because we can all benefit by knowing Flora. Not all of the people who love Flora trust her hope any longer, but she meets a lot of new people in her voyage to find love and her memory and they do trust Flora’s hope. Please read about Flora and resolve to help at least one person stay hopeful.

(Note: I read the 2017 Penguin Random House edition of The One Memory of Flora Banks. The photo is the cover of that edition.)

Game of Thrones Madness?

For the past few weeks, I have felt as though my husband and sons, not to mention many friends and acquaintances, have joined a cult. As a matter of fact, I often spend Sunday evening with my family, but tonight and for weeks to come everyone I know will spend Sunday evenings with characters from a fictional land.

Here are some of the comments I have heard in the past few weeks leading up to the 7th season of Game of Thrones which starts tonight on HBO:

Question: “What if we tape the whole series and binge watch them all at once for a kind of party?”

Answer: “You can’t do that because you’ll definitely have the plot spoiled by everyone talking about what has happened.”

Question: “If I go away for a week, do you think I should stop following the Twitter feeds and other social medial?”

Answer: “OMG I never thought of that.”

Question: “Do you think we can find out in advance who’s going to be live tweeting during the show and stop following them?”

Answer: “Good idea – and put up warnings for your followers not to post.”

Question: “Dr. Beck, will we be allowed to watch Game of Thrones on the unit?”

Answer: “Is there no escape?”

I know exactly why the series does not appeal to me. I find too much graphic violence disturbing. It’s perverse, but I am more fascinated by trying to understand why certain television series can develop cult-like followings. How does it happen that certain shows can become so popular that there’s no point in even inviting anyone over on a certain day around a certain time unless you’re holding an event related to a certain series. My gourmet dinner club held a Downton Abbey event. I know of people holding Game of Thrones parties as the new season starts.

The research on why certain cultural phenomena become popular indicates that the capacity to identify sympathetically with characters, especially when the story line allows us to struggle with concepts of good and evil, can be cathartic. It can help us to resolve our own conflicts safely, especially if, in discussing a show’s dilemmas with others, we can begin to understand how our friends or family members are themselves resolving conflicts.

The cultural phenomena that are television shows or movies have never been as cathartic for me as those I read and, of course, there is research on that as well. This research considers the reasons why some people are drawn to stories told via one medium over another. Again, this research shows that we are drawn to the medium that most engages our emotions, that allows us to enter the conflict of the story safely, so that we are not overwhelmed. I don’t mind imagining a bloody conflict, but I find it overwhelming to watch. I will also admit that I skip over parts of tv shows or movies that I find too difficult to tolerate, but I never have to do this when I’m reading a story.

Finally, whether you watch or read or listen to a story, stories show us how difficult it is for humans to live in the present, to “enjoy the moment”. We flip to the back of the book. We watch every episode. Do we not all want to know the end of the story, even when the story is good all the way along?

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.)