Life with MS

Patient Rights and Responsibilities

By Annie Brewster, M.D.

As patients, most of us have had at least one negative experience with a doctor. Nine years ago, when a new tingling sensation climbed from my feet up to my mid-abdomen, my primary care doctor ordered a spine MRI and a lumbar puncture. The MRI showed a lesion at the T4 level, and the lumbar puncture showed myelin basic protein, a breakdown product of myelin. 

The possibility of multiple sclerosis was raised, but as someone who had just finished medical school and started residency, I probed for other explanations. I clung to terms like “transverse myelitis.” Maybe I just had an infection, I thought. I was sent to a neurologist for further evaluation.  

This particular neurologist (let’s call him Dr. C) was high in the ranks at a prestigious teaching hospital and one of the top researchers on MS in the country. I was lucky to get an appointment with him, I was told. But I didn’t like him. For starters, he was more than an hour late for our appointment because he was “running behind,” but he never apologized or even acknowledged his tardiness. He was brusque, self-important, and did not make eye contact. 

It would have helped him to know that I was the mother of a two-year-old, a medical intern, and in the midst of a divorce, but he did not ask me any personal questions. He got right to his point: start disease-modifying therapy for MS as soon as possible. If I wanted children, have them now before starting the medication. I was overwhelmed and frightened, but didn’t feel I could tell him this or ask any questions. I meekly told him that I would have to think about it and left as quickly as I could, holding back my tears until I had closed the door to his office. I didn’t see Dr. C again.  

A Second Effort is Worthwhile

I avoided doctors for a while, but eventually saw another neurologist, Dr. M. Here, my experience was a good one. Dr. M was also late for our appointment, but immediately apologized for making me wait. Once in her office, she focused on me, turning away from her computer and looking in my eyes. She asked me why I had come, and listened attentively as I told my story. She understood that I was not yet ready to accept the diagnosis of MS, and while she made it clear that she thought the diagnosis likely, she left room for my feelings and ambivalence.

She cared about my opinions. I felt respected and never rushed. Within this caring and nonjudgmental relationship, we were able to discuss the pros and cons of treatment. Over time, I went on to accept the MS diagnosis, remarry, finish residency, have two more children, and ultimately start treatment.

Both Sides of the Coin

In my work as a doctor, I have learned firsthand how the limitations of our current medical system can compromise patient care. Doctors are expected to see too many patients in too little time. Appointments are often as short as fifteen minutes. Developing quality relationships and ensuring quality care within these constraints can be difficult. While it is our right as patients to expect certain things of our doctors, we are active participants in the patient-doctor exchange. We, too, have responsibilities.

After my experience with Dr. C, and in the context of my own medical practice, I have thought a lot about what we, as patients, have a right to expect from our doctors. Here are my conclusions:

  • We should always be treated with respect.
  • We should feel listened to and heard at all times.
  • We should feel known as a human being.
  • We should feel free and safe communicating.
  • We should trust that the doctor always has our best interest in mind, and that he or she is up to date and familiar with the standard of care.
  • We should have access to our physicians, and we should feel that our time is considered valuable. If a doctor is running late, we deserve an acknowledgement of the negative effect this has on us. 

And as I work to strengthen my relationship with Dr. M and strive to take good care of my own patients, I have contemplated patient responsibilities. Again, here are my thoughts as a patient:
  • As we expect respectful treatment, we should offer this same respect to our medical providers.
  • It is our job to choose a physician we trust and with whom we feel comfortable.
  • If these criteria are not met, we should terminate the relationship and find another ctor.
  • Once trust is established, we should strive to communicate openly and honestly at all times.
  • We should become invested in our own health and follow the doctor’s treatment recommendations.
  • If we are not in agreement with these recommendations, we should make this known and invite discussion so that the treatment plan can be amended.
  • We should come to our appointments on time.
  • To best use our fifteen minutes, we should be prepared, ready to share pertinent information and to ask any questions we might have.
  • Advanced planning is essential. 

Ending my relationship with Dr. C was a good thing. My rights as a patient, as I see them, were violated. Over time, I have improved my relationship with Dr. M by taking my job as a patient seriously. While once I stopped a medication because of intolerable side effects without telling her, I have learned that communication and honesty are essential. I trust that her only agenda is to help me. I am committed to my own health and take responsibility for doing my part. I write my questions down in advance and bring them to my appointments. I don’t expect her to have all the answers. I show up. I share. She hands me Kleenex when I cry, she hugs me, and we laugh. 

Annie Brewster is a graduate of Harvard Medical School, a doctor, and a writer. A former primary care provider, she is currently an urgent care provider in Boston, Mass., and lives in Cambridge with her husband and four children. While she is discouraged by the limitations of the current healthcare system, she is sustained by the human relationships and stories that are the privilege of her work.