Annie Brewster, MD, with her son, Jamie
Typically lost in the policy debate is the fact that health care, at its core, involves intimate, personal relationships between patients and their doctors. Those roles are usually narrowly defined, but sometimes it becomes necessary to cross traditional lines in order to forge a therapeutic, and ultimately compassionate, connection.
Anne Brewster, a Boston internist, has multiple sclerosis, an autoimmune disease of the central nervous system. One day, she decided to risk disclosing something about herself to a patient:
“I have the same disease,” I told my patient over the telephone. There was a pause, and then a sigh. “That makes me feel so much better,” she said.
I was speaking to Ms. R, a soft spoken 30-year-old female with gentle brown eyes whom I had seen the previous day in the urgent care clinic where I work. She had come in complaining of difficulty remembering things. “I am in the middle of speaking and I suddenly forget what I am talking about, or I can’t find the words to say what I want to say,” she had told me.
“My husband and my friends say that I am not acting like myself.” We spoke further. A few months back, she had noticed a feeling of unsteadiness when walking, “like the world was off kilter,” but this had since improved. And perhaps she had been more clumsy than usual lately, dropping things. “I know something is wrong and I am frightened,” she had said.
She had a left-sided Babinski sign on exam–her big toe flexed upwards toward the top of her foot when I stroked the bottom surface with my thumb, a normal reflex in infants but pathological in adults, and evidence of damage to the central nervous system. I ordered MRIs of her brain and spine. The studies were done the following day and showed numerous demyelinating plaques consistent with Multiple Sclerosis.
I called her at home to give her this news. While I informed her that the diagnosis was not yet certain, that further evaluation and testing by a specialist would be needed before we could say anything definitive, she heard only “Multiple Sclerosis”. “What does this mean?” she asked, but she didn’t wait for my answer. She began to cry. “I am so young. There was so much I wanted to do. I wanted to have a family.”
“I have the same disease,” I told her. I had decided to reach across the space between us and to share a bit of myself. I went on to say that I have four kids, that I still ski, run, play lacrosse and work as a doctor, that I am healthy and energetic. “There is tremendous variability in how people do,” I offered, “and some people do very well. It is the unknown that is scary.”
In revealing personal information, physician to patient, I had crossed a line. I did so intentionally, in an effort to bring compassion to our exchange, but still today, I cannot shake the slightly uneasy feeling that I have somehow breached medical etiquette.
When we enter medical school and don our white coats for the first time, the division between doctor and patient begins–“us” and “them.” We start our education by dissecting a human corpse, and in so doing, learn early on to separate the body from the person. We master the parts-the Ischial Tuberosity, the Latissimus Dorsi, the Sternocleidomastoid, the Flexor Digitorum Longus. We think about lymphatic drainage, muscle insertions, arterial supply, and nerve innervation. We divide the body into sections: distal and proximal, dorsal and ventral, lateral and medial.
We go on to study disease processes-so many that our heads spin. Eventually, we begin to take care of patients and are encouraged to remember the person behind the disease. We are instructed to make eye contact, to sit on the edge of the bed when we speak to a hospitalized patient, and to use touch when appropriate, by holding a hand or squeezing a shoulder. Empathy is cultivated, but at the same time, explicitly and implicitly, we are taught to keep an emotional distance. Sharing personal information is taboo.
Part of this is for survival. None of us could bear to feel all of the pain, the fear, the loss that we encounter daily in medical practice. If we allowed ourselves to realize that we are vulnerable to all of the diseases we treat, all the time, we could not function. And part of this is about being a good doctor. Emotions can cloud judgment, and the preservation of professional boundaries is essential to quality care.
But true objectivity is a myth. We are human beings, and our personal experiences are at play in all of our interactions. The white coat does not protect us from our humanity. In meeting Ms. R, I thought of my own illness. I remembered sitting on the doctor’s examining table, cold and exposed in my paper gown, as I spoke for the first time about the numbness and tingling in my legs. I remembered lying in the MRI machine, trying to ignore the loud banging of the magnet, the closeness of the walls around me, and my own terror. I remembered the moment of diagnosis. I was alone, and was told rather abruptly to hurry up and finish having my children so that I could begin treatment. When I left the office I sat in my car and cried. I was overwhelmed by fear, anger, and shame. I envisioned the worst, thinking of everything I would have to give up, certain of the wheelchair in my future. That was eight years ago.
As physicians, our duty is to bring self-awareness to our patient-doctor encounters. We cannot let feelings impair our judgment. We must be cognizant of what we bring to the relationships, and avoid over-identification with patients. Our values are not necessarily their values. Patient best interest must always come first. At the same time, we must honor our humanness, trust our emotions and have the courage to expose our vulnerabilities when it feels right. In some instances, this may be the most therapeutic and compassionate thing we can do.
“That makes me feel so much better,” said Ms. R, and I believed her.
Bravo! You helped your patient and that was exactly what was called for.
What a wonderful article about MS and doctors. The doctor was truly treating the patient.
A very moving article. I wish more doctors would do the same. Patients don’t expect to be best friends with their practitioners, but it is very reassuring when you can relate to them in some small way instead of feeling like you are a name on a chart.
This article touched me in many ways, and here are two of them.
In my experience, the human connection is both healing and empowering, and even more so when you are dealing with health issues. I was cheering your actions here as I read them, and I hope that your conversation was empowering for you as well.
The other is that I recently realized that I have a personal connection with one of my own physicians, and while I wasn’t sure how that would work out, it is working surprisingly well. It is reinforcing to hear of another good experience in this realm.
Powerful, Anne, for you, for her, and as an example to doctors and patients everywhere. I recommend your submitting this piece to Ars Medica , a medical literary journal, published by Univ of Toronto Press. They published an essay of mine on MS . And there’s a collection coming from LaChance Publishing called “Voices of MS.” All of these words add up to something, something very important, as your courageous act demonstrates.
Sorry, the posting process removed all the URLs that I laboriously entered.
Google:
Ars Medica, then look at “Submissions;”
“Feeling Numb,” my essay; and
LaChance Publishing.
This is very moving. Keep writing. Patients are lucky to have you.
Thank you. Great post. I am a first year medical student and although the faculty has been incredibly supportive I still feel the events meant to socialize us as students into the medical profession. While I believe I can see the fine line that this approaches I truly appreciate your candor in sharing this experience.
DG
Just reading this brings tears. I cannot imagine how different my journey would’ve been had I experienced this kind of compassion from a doctor. When I was diagnosed w/ MS in ‘98 I was told I probably would never finish my BFA, get married, have kids, be able to hold down a job, and that I’d most likely be in a wheelchair in 5 years. Along the way I’ve encountered doctors who have bullied or dismissed my concerns. Here and there a doctor actually looks at me and hears what I have to say, engages me like an equal. Those are the doctors I choose to partner w/ in my healthcare. I’ve learned to be my own best advocate when I am least able to be. I wish I had not had to learn these “battle skills.” I’ve been married 10 years, have an MFA, and a fluffy golden mobility assistance service dog. I go into public schools and teach kids to write poetry–and I talk to them about health and illness and disability. I show them that life, good, gorgeous life, goes on. So if you’re somebody w/ MS, I say find a doctor–no matter how long you have to look–like this one; and if you are a doctor, I say, please be gentle and consider your words–they hold such power, to smother out hope or to help it fly.
my god someone who is straight to the point and honest maybe they can all learn from what you have done. well done for being so hones and upfront with the patient. My ms nurse could learn from this. !!!
Thank you for sharing your experience in such a powerful, empathetic and thoughtful way. Your patients are so lucky to have you as their doctor. You must keep writing… You write beautifully.
Thank you, Annie, for writing about your compassionate and caring decision to share your own experience with your patient. When I was in my early 20s, I had a doctor who did the same for me, and his moments of conversational empathic generosity changed my life forever.
[...] to CommonHealth on WBUR, a National Public Radio station in Boston, to read her full essay, “Boundary Issues: A Doctor With M.S. Confides in Her Patient,” and then please join the discussion below. Do you agree with Dr. Brewster’s decision [...]
I have faced exactly what Annie has. I am a Family Practice Physician Assistant with MS and my MS patients know it. It helps them, it opens up more chance to have them talk to me. It reaasures them that if I am gone for a few weeks that I will return, keep fighting, and will support them in their struggles. I do not provide the MS care; they all see neurologists for that.
I hope more of us in the medical field open up. Annie, you are not alone!
The medical part of illness healing is easier than the psychological; by being compassionate and human Dr. Brewster is helping this person at a deeper level than she could have otherwise.
I don’t think this physician crossed the line; I think that sharing (I take issue with the verb ‘confiding’) common experiences is what keeps medical/health care from being alienating and disembodied processes. Emotions (repressed or expressed) generate knowledge and the degree of cloudiness is gauged by the depth of compassion showed to the patient. I encountered a clinician with zero compassion and outright distaste when I consulted with her for a delicate, sensitive clinical diagnosis. Her cold, uncaring response was every bit as much as ‘emotional’as Annie’s kind gesture of affilation. Guess which one I’d rather have?
I’ve done the same with my MS diagnosis, with a choice few patients, and had mostly the same results and no regrets. One patient seemed distraught with the added burden of worry for me, on top of worry for herself, despite reassurances and redirection to her needs. But overall, it felt like the right thing, and allowed for more specific support and information for the patient. I know I needed connection and optimism when first diagnosed.
When Dr. Brewster revealed her diagnosis, she did it with sensitivity, listening to the needs of her patient. She acknowledged her patient’s fear of the uncertainty with MS, while also providing the hope of a positive outcome. This was compassionate.
Recently I was invited to address Tufts Medical Students in a “white coat” ceremony that heralded their entrance into the medical profession. I talked about my decision to disclose my mother’s suicide publishing a memoir entitled In Her Wake: A Child Psychiatrist Explores the Mystery of Her Mother’s Suicide. I wanted to share the loss of my mother to illustrate how the process of introspection can help one to listen and be more effective with patients. I also wanted to humanize the tragedy of suicide, and to convey the message that none of us are expendable; we are all loved. Self-knowledge is essential if we are to be fully present for our patients and ourselves, no matter what field of medicine we may enter. The power of listening profoundly allows our patients to know that their story is heard. Self reflection is different than self -disclosure but in being thoughtful about what we share we can provide at times a healing message.
Sharing personal information with patients is called “theraputic use of self” in nursing school land. I am a nurse practitioner and I learned about the theraputic use of self in Nursing 101 from two top notch psychiatric nurses. Sharing of one’s own experience and life is not confiding if one shares with the intention of furthering the patient’s wellbeing.
Still, as pointed out, the health care provider needs to be careful, because the boundry line can become thin and it ethically it cannot be crossed. And I agree one has to be careful not to cause the patient to be worried about the health care provider.
Sharing, not cofiding, was such a theraputic gift you gave this patient.
I was diagnosed with MS in 1994. The neurologist who ordered the diagnostic tests said I had either an inoperable tumor on my spine or MS. When I learned one week later that it was MS, the neurologist then told me to resign myself to being in a wheelchair by the time I was 40 (I was 34 at the time with 3 young children). I was disheartened and scared and had to see many doctors before I found one who showed some compassion and was open to listening to me. How I wish I had learned the news from a doctor who showed even a small bit of empathy for the impact an MS diagnosis has. You performed a great (perhaps even a healing) act through disclosure that your MS does not mean an end to life. In many ways, it can be a beginning. Thank you from all of us who have MS but, like you, continue to live life fully with a healthy respect for the balance we need to maintain to co-exist with an MS diagnosis.
I have lived with MS for 37 years and at the time of diagnosis was made aware of only the extremely negative possible outcomes; i.e. wheelchairs, dependence on others and the likelihood of a diminished life expectancy. How comforting it would have been to receive compassionate care, seasoned with hope and extending the possibility of a reasonably normal life, which, in fact is what I have experienced in the ensuing years. Although boundary issues will always be relevant, physicians must be flexible and free to extend those boundaries when it may mean providing better care to an individual patient, as it did in this case. Kudos to Dr. Brewster for having the courage, judgment, and compassion to provide such excellent individualized patient care.
I have no problem with the judicious sharing of information and in this case it is very appropriate. What I cannot fathom is the giving of a potentially life altering diagnosis OVER THE PHONE! That is irresponsible and very poor doctoring.
It is wrong to criticize Dr. Brewster for giving this information over the phone (last comment). Perhaps the patient had asked her to call as soon as the results were available and wanted to hear it on the phone. In my experience, it is much worse for a doctor to call and leave you hanging…to say that they want to see you again without telling you the results. I would much rather hear it straight, and as soon as possible.
No, giving info like that over the phone is wrong. You call the patient and have them come in or, better yet, when you schedule the tests you schedule a follow up appointment for when they are ready so that you can talk face to face. It is far too easy to mess up over the phone where you can’t read the person’s body language. If this was just a simple lab report then no big deal, but this is a question of a very serious diagnosis and I stand by my comment that it is irresponsible to impart such information via telephone.
Your writing is wonderful and moving–it is so great to read of people making connections across former real or perceived boundaries. All of us need to think about these issues.
Cheers for Dr. Brewster!~ I am totally for it as a non-doctor. If my doctor did that for me, I would feel so much more comforted, empathized, and to hear someone who’s an expert who can speak about their own experience is invaluable.
I absolutely agree with her decision. I am also a physician, and find that occasionally the doctor-patient relationship can really benefit from “closing the gap” in the roles, i.e. showing that the doctor is also a human being struggling with his/her own medical issues rather than preaching something he/she doesn’t personally understand.
Dear Dr. Brewster,
I’m glad you are finding your way across the divide that we were taught to place between us and our patients. I crossed that divide years ago, and couldn’t be happier. Many of my patients are also friends, they know each other, and they know a lot about me. It’s not without its challenges, but it sure does enrich my life immensely. I only wear my white coat if I am being photographed.
I agree with the comments about the challenges of giving information over the phone, but everyone is different. I got the results of a breast biopsy over the phone. Honestly, the surgeon, an accomplished technician and a nice person, wasn’t well known to me and I didn’t consider her a part of my support system. I was happy to be with my friends around me to get this report. Patients should consider how they want to receive such information and plan accordingly.
I don’t know much about proper doctor/patient protocol, but I am an ethics professor. Dr.Brewster’s sharing information about her own illness with her patient strikes me as being not only ethical but also highly laudatory. Dr. Brewster’s purpose was clearly to provide solace to the patient in as empathetic manner as possible; it would have been a mistake if she wanted to reverse roles and use the patient for her own benefit.
When the neurologist who diagnosed me with MS called (the night before Thanksgiving after months of all doctors saying they were sure I did not have MS), he said that I had MS, there was no treatment (back in 1984) and I should make monthly appointments to come see him so he could “chart my decline.” How different it would have been to have a doctor who could understand. Especially with a disease like MS that presents itself, and the course of the disease so differently from person to person. The diagnosis itself is enough to add so much stress as to bring on an exacerbation (as it has done with many folks I have talked with over the years).
Imagine, instead having a doctor like yourself who can truly relate to the questions and concerns—and general panic that can set in when those two fateful words, Multiple Sclerosis, are uttered. Bravo for your courage to do that and help your patient over a huge hurdle! the only line you crossed in my book was that of becoming a caring doctor, not just a clinician. Keep up the great work, and like all of us with MS – I wish you good health.
I don’t understand how you could question yourself about “crossing the line”. We are all people, whether we practice medicine or not. You responded as a compassionate human being whose sole intent was to relieve someone else’s pain and suffering. When it’s appropriate, I tell my patient’s that I’m a recovering addict and I have never regrettes doing so.
Anne, you touched on a topic I grapple with frequently. I provide cognitive therapy to people suffering from various brain diseases, Lupus, MS, Seizure disorders, Brain tumors, and a host of others. We focus on strategies to facilitate or compensate for weaknesses in memory, attention, and processing of information, to enable people to function in their personal lives and often their professional ones as well. Although I do not have a similar disorder, I will sometimes decide to share other pieces of personal information when appropriate. It might be as simple as pointing out cognitive faux pas that I, like all of us, have made. Or, perhaps to share that I have a child with significant learning issues when the patient is dealing with this as well. My purpose is never to share as a way of saying, “You’re not the only one hurting”, but to create a therapeutic alliance that allows for an exchange of human caring and trust. It allows my patients to see me as “real” and that I do not have a power over them in my role as their clinician. Thank you Anne for your courage and honesty in sharing.
Bravo, Annie. And beautifully done.
Well done Dr. Brewster. But all of us physicians should remember that we will all be patients from time to time. We will.. sooner or later.. all have personal experiences which can help our patients. Failing to share them should not be justified under the misleading label of “professionalism”. Proper professional boundaries are important, but they do not require robot like behavior by doctors.
There are always personal things that should not be shared. There are sometimes patients who should not be trusted with personal facts about their providers.
Even in fields like psychiatry, some sharing can be useful and humane.
Thanks Annie for your sharing. As a Social Worker who works with the elderly, I wish more doctors would show empathy. Wishes for peace and good health.
Thanks for discussing this issue. During my 30+ year practice in Pulmonary/Critical Care Medicine, I gradually became more comfortable using personal information for two main reasons: to show that I cared in a special way, and to help teach and mentor the patient in a story format. When discussing withdrawal from a ventilator I might bring up my mother’s death and how difficult the decision was. If a patient had sarcoidosis and was particularly worried, I might reveal that I had it too (true!) and how I decided whether to treat or not.
In medical school a professor brought in a patient for teaching purposes one day and said: “Students, I have a very interesting case to present.” Then he paused and said, “I’ve just made two significant mistakes, what were they?” After discussion he explained, “Labeling a person as a patient can make them feel like an object. Remember, that’s a person you’re caring for. Secondly, by calling them interesting, you’re focusing on the disease not the whole person.”
I think you addressed the concern of boundaries well. It needs to be the right person, the right setting, and the right amount of information sharing. With maturity and common sense, I think physicians should explore sharing more with patients.
Growing up in a small town with a GP father, all of his patients knew everything about our family. So the sharing of information issue was moot and didn’t interfere with a very satisfying practice.
[...] go to CommonHealth on WBUR, a National Public Radio station in Boston, to read her full essay, “Boundary Issues: A Doctor With M.S. Confides in Her Patient,” and then please join the discussion below. Do you agree with Dr. Brewster’s decision to [...]
I think you definitely did the right thing. I wouldn’t call it confiding, I’d call it just plain doing the right thing, professionally and personally. Someone who gets bad news from a doctor knows that the doctor does not want to give the news (sometimes so much so that they actually do not give the news- hard to believe, but I’ve seen this) and wants to reassure the patient that everything will be ok, even if it will not, if only to disengage from the uncomfortable role of being the bearer of bad news, and end the interaction as cleanly as possible, sometimes for the sake of their own sanity. Especially in cases where the etiology of the illness is not understood and there is no cure, clear prognosis or reliable treatment, hearing from a fellow sufferer is very comforting, as any other sufferer is as much an authority on the topic at hand as anybody else on the planet, more so because they speak from actual personal experience. The patient is in a place where science can’t really reach them, but they can be reached by a human being who offers spiritual comfort and lets them know in no uncertain terms that they are not alone. Your own suffering was not wasted because you used it to help another person, and I think that withholding this personal information under these circumstances would be unconscionable, really, and could have had grave consequences. It’s hard to know the state of mind of the person receiving the news; God forbid you should ever have to look back and say, ”If only I had said something about my personal experience, the person might have taken the news better and still be with us”. You did a very brave thing by telling her, and it is good to know that there are people like you out there. Thank you.