Pandemic life be damned; no amount of social distancing can stop me from enjoying the energy of fellow feeling, kindred spirits. Thus has it been and thus shall it ever be my great, good fortune to make new connections and absorb fresh ideas.
And so I welcomed Dr. Gerda Maissel when a mutual colleague recently put us in touch with each other. As patient advocates both, we instantly clicked. Dr. Maissel is one of the rare breed of physician providers who toggle between genuine personal enthusiasm and risk tolerant entrepreneurism. Warmth and chill in the same person; these are my favorite types. She’s also one of those people whose smile you actually can hear through the phone. And when I pitched this interview to her, she was all in.
Of course we had to do this via email. Still, it gave us a valuable opportunity to learn how other patient advocates work in different settings and across disciplines. For this endeavor, we chose a modified version of the “five whys” format. The standard version assumes a problem to solve, and each answer forms the basis of the next question.
In the example below, we departed from the usual flow of the “five whys” since there was no issue we needed to fix; this technique simply continued our conversation. Nevertheless, asking “why?” helps people analyze information. We trust The Edge’s sophisticated readers will agree — why not?
Sarah Wright: Even though the economy remains fragile, Americans are starting businesses at the fastest rate in more than a decade, according to U.S. Census Bureau data. And you are part of this start-up boom. Why did you launch My MD Advisor?
Dr. Gerda Maissel: COVID affected the timing of my business. When I left the Hudson Valley in the winter of 2020 for a new job in Florida, I told my mother that I would be back monthly. When COVID hit, I did not come back for 5 months. My mother, isolated in her apartment, aged 10 years. That fall, I decided to move back permanently and start My MD Advisor. Mom is doing better now, although she still misses seeing the whole family.
I started My MD Advisor to help people with complex and chronic health conditions. As both a physician and a health care leader, I frequently encounter people who are frustrated or confused by incomplete information about their health care. The root cause is often the fact that our health care system is designed around locations: the office, the hospital, and the rehabilitation facility. As a result, physicians in different locations have incomplete information. Tests are repeated, instructions are contradictory, and the patient is stuck in the middle. Sometimes patients or families get angry, or they spend huge amounts of time trying to figure things out. My MD Advisor helps people experience coordinated, organized, and understandable health care.
My other motivation behind starting My MD Advisor has to do with my perception that people need better informed choice opportunities. With people living into their 80s and 90s, many have several chronic conditions. Physicians now ensure that patients understand the basic pros and cons of a surgery or other immediate decisions, but we physicians don’t always help patients understand the implications of health care choices that occur after they leave the exam room. When we find out that the patient didn’t take the pill we prescribed, we consider them to be ‘non-compliant.’ I would like to reframe that discussion around choice. Do you want to follow the standard medical advice? If you do, here are the pros and cons. If you don’t, here are the pros and cons.
My father had a degenerative neurologic illness for three years before he passed away. I knew that eventually he would have trouble swallowing. We spoke multiple times about what he would want when he progressed to the point that he would be advised to thicken his liquids (to help him swallow safely). He was very clear. He wanted to drink his tea as he had always done and did not want it to be thickened. He understood this choice could cause pneumonia that might kill him.
During his last hospitalization, the admitting hospitalist made him “NPO” (nothing by mouth). I was able to express my father’s wishes and they allowed him to have tea. While the tea might have hastened his demise, I was comforted that Dad went out on his own terms, even if they weren’t what I would have done. While you cannot stop the reality that you have an illness, with fully informed choice, you can be comfortable that you made the best choice for you.
SW: If the Greek physician Hippocrates were alive today, why would he be concerned about white coat syndrome?
GM: My father had white coat syndrome. White coat syndrome is when a person’s blood pressure goes up when they visit the doctor’s office, but it’s fine the rest of the time. Dad would grumble, “Those doctors, they always want to put you on pills.” Eventually, after taking his blood pressure daily at home, he and his doctor reached a truce and Dad was officially taken off his blood pressure medication.
Hippocrates is known for “first, do no harm” and a proponent of listening to your patient. All medications have potential side effects (I suspect the beta blockers interfered with Dad’s marital life, contributing to his resentment). Doctors see their patients for brief snapshots in time. The more that we create a convenient, supportive environment in which people are treated respectfully and the more we see the whole patient, the more we can help our patients.
SW: On the front flap of the dust jacket to Dr. Jerome Groopman’s book, “How Doctors Think,” we learn “On average, a physician will interrupt a patient describing her symptoms within 18 seconds.” Why do you think this happens?
GM: Interruptions by physicians are multifactorial. Standard physician training emphasizes making the right diagnosis, not optimizing the bond with the patient. Getting to a correct diagnosis requires certain information, often in a specific order. Sometimes doctors interrupt patients to gain that information or to stop the patient from giving too much irrelevant (to us) detail. Also, a story about your neighbor who put a mask on their garden gnome might feel irrelevant to that doctor focused on getting to your diagnosis.
Behind these interruptions are a few other factors — time pressure and lack of social skill. Office visits may be scheduled for 10 minutes, including the time to document. Some physicians choose to interrupt in order to avoid having to finish writing notes at home. (Leaders sometimes monitor “pajama time” on the computer to see which docs are struggling). Alternatively, some physicians don’t realize they are interrupting excessively. Until very recently, doctors were selected mostly for high scores in organic chemistry, not for their empathy. Combined with no education on interview skills or reinforcement of the importance of an emotional bond with patients, the result is too many interruptions.
Fortunately, we are starting to learn there is tremendous therapeutic power in being present and listening. We now teach doctors to sit down when they meet with patients. We have started to realize that when we listen, we enjoy it, learn something valuable, and help our patients too.
SW: The NYT recently ran an article titled “Learning to Listen to Patients’ Stories.” Why is narrative medicine such a hot topic?
GM: With the pandemic, so many people feel isolated. If they need hospitalization, family presence is very limited, and they are cared for by staff whose faces are covered. This leads to more feelings of isolation for the patient. Some hospital workers have responded by becoming family substitutes, listening as best they can to the people in the beds. This converges with our ongoing understanding that treating patients as people is not only a morally good thing, but it helps with better outcomes.
We have come a long way. When I was a medical student in the late 1980s, patients were referred to by their room number and their illness, not their name. Mr. Jones was known as “the COPD’er in 202.” Patients were viewed as existing for us to practice on. This pervasive dehumanizing of the very people that we were there to serve was part of the reason I chose Physical Medicine and Rehabilitation as my specialty. It was the only field in which the unifying purpose was to help the patient improve their ability to function. When you listen to people’s stories about their lives, you understand what matters to them and then you can help them achieve their goals.
SW: Why is a physician care navigator uniquely qualified to help patients and families manage care that is frequently complicated, complex, and sometimes even chaotic?
GM: Care navigators and care managers help coordinate medical care. The most common background is social work, although some are nurses or therapists. As a physician with health system leadership experience, I bring a different understanding of clinical prognosis and health care processes. My experiences in the post-acute world of rehabilitation and home care also allow me to uniquely support my clients. What seems unmanageably complex and chaotic to them is clear to me. I can advise on who to call, when to call, and what to say, or do it for my client.
I’ve been asked to help with a wide range of issues including:
- Translation of medical information
- Facilitation and coordination of care across care locations, conditions, and physicians
- Guidance during a facility stay
- Advice regarding implications of illness to support decision making and planning
- Assessment of concerning situations with recommendations for resolution
- Research on medical conditions and programs
My clients are typically elders (or their families), people with neurologic conditions, or long COVID (now known as Post Acute Sequela of COVID or PASC). It is incredibly rewarding work.
I encourage people to reach out to me. Sometimes I can help with a single (free) call. If readers would like more information, please visit My MD Advisor or email me at firstname.lastname@example.org to set up a time to talk or Zoom.