February 1, 2011
Dear Matthieu,
I am writing this letter to you because I am very touched by your situation. Even physicians who have practised palliative care for 10 years feel sadness when one of their patients begins to deteriorate. This is especially true when the patient has amyotrophic lateral sclerosis and is only 34 years of age. We are taught that we should feel empathy, not sympathy, and yet we are only human and sometimes feel a deeper connection with our patients.
I met you 7 months ago at your home. You asked me if we could call each other tu, because you found the more formal vous awkward. In your wheelchair, your legs were not working the way you needed them to and your left hand was very weak. Your 2 big dogs wanted to welcome me but because I thought they might be heavier than me, I asked your friend Jessica to let them out the back door while I came in the front door. I found myself standing in front of a charming young man, with bright green eyes and a friendly smile. You are only a few years younger than me. You have a tattoo on your right arm. You have the body of an athlete.
When you were diagnosed with amyotrophic lateral sclerosis in October 2009, you had never heard of it. You expressed little—in fact no—interest in reading about all of the possible complications of ALS. But your friend Jessica did read all about them. I learned that Jessica is your former partner and that you live with her. She has a new partner—one of your friends—who also lives with you. She is now your roommate and caregiver. I was intrigued by the fact that you all lived under the same roof. Each of us has secrets.
We talked about your symptoms. I examined you. We talked about how you were feeling and, right from that first meeting, I was moved by your tears and the many things that you have had to grieve: your job, your independence, your dream of having children. After visiting with you that day, I went back to the medical centre with tears in my eyes. Is there injustice in the world? Yes, of course, there is injustice in the world, but why? No one has the answer to this question. Why are innocent people killed by reckless drivers? Why do tsunamis exist? There are simply no logical answers to these existential questions.
We will need an entire home care team to care for you and to care for us. Everyone is fully aware of your situation: the nurse, the social worker, the nutritionist, the occupational therapist, and the family support worker.
I visit you once a month. Every time I visit, there is a feeling of nonchalant youth in the air. Perhaps it’s the smell of tobacco and marijuana or maybe it’s the music. At any rate, your home feels different from any other home I visit. Jessica has a remarkable ability to speak plainly—to tell me things that you might not dare to tell me. She has a great sense of humour. She has stopped working so that she can look after you, 24 hours a day. She takes you to your neurology appointments. She cooks for you. She is by your side. In spite of being only 30 years of age, she never complains that it’s too much. I would like to give her a medal for courage and dedication. She is like so many other caregivers who accomplish great things, yet, all too often, go unnoticed.
After a few weeks, you start to choke on liquids. We talk about the risk of aspiration pneumonia, about how you feel about intubation, about cardiopulmonary resuscitation, and gastrostomy. The neurologist also talks about these things with you. And you always say: I will deal with that when the time comes.
Two months ago, you stopped being able to write. You want me to fill out your disability tax credit forms. You cannot fill out the applicant’s section. It says: “to be completed by the applicant or his or her legal representative.” I come into your room and we look at the form together. You can’t write anymore; you need to appoint a legal representative who can write for you. Suddenly you tell me that you want your brother, Hugo, to be your legal representative. And I respond that it would be a good idea to do this soon—within the next few weeks—that it would be a good idea to see a notary so that you can appoint a legal representative. And maybe to talk about a will and other legal issues at the same time.
That evening, when I am back at the medical centre, I think about how the role of the family physician is changing. Here I am, counseling a 34-year-old man to write his will within the next few weeks. One of the great things about a family physician is the connection that he or she creates with the patient in the process of delivering care. Without this connection, I would not have access to the information with which I am being entrusted. Without this connection, I would not know the person in front of me in all of his uniqueness. Without this connection, I would not be able to care for you with this level of respect. Without this connection, I would not know how to talk to you about a will.
Two weeks later, you see a notary. The next week, you are hospitalized for aspiration pneumonia. Your decision is clear: you don’t want to be resuscitated or intubated. And you don’t want gastrostomy. Three weeks pass.
Yesterday, you were admitted to the palliative care unit. The hospital staff—physicians, nurses, orderlies—have gone into action. I see them experiencing what I experienced 7 months ago. Like me, they are deeply sad. There is a connection that unites us in all of our humanity. They feel a deep sense of injustice. There is a connection that unites us in all of our humanity. Like me, they need to make sense of life. There is a connection that unites us in all of our humanity. And we share an admiration for Jessica and your family and friends for their unconditional love for you. We, your care staff, love you. This is a connection that unites us in all of our humanity.
Family medicine is the medicine of connections. Connections over treatment, over science, over the huge questions of life. This connection is what has enabled me to live with you, to learn with you, and to love life with you.
The word that the Incas used to describe the greatest force in the universe is Namasté:
In my heart, there is a place where you dwell;
In your heart, there is a place where I dwell;
These two places occupy one and the same space,
In this space, time does not exist.
Thank you for allowing me to make this connection.
Dr S. Perron
Footnotes
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Cet article se trouve aussi en français à la page 70.
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