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Doctors Turned Patients: What Family Caregivers Can Learn

Being on the other side of the stethoscope can offer a fresh viewpoint

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Peter Dazeley

Most of us think of doctors as the experts, the guides through a medical situation, whether it’s a scheduled surgery or an unexpected illness or injury. I know that the moments when I have found myself in the hospital with a loved one, I have hung on every word and pronouncement from the doctors and placed my faith in their expertise. And yet, of course, doctors are people too. They become ill, they lose loved ones, they experience the unknowable and the need for patience and hope. So, when doctors become the patients or even the caregivers, they can stand in another’s shoes, to see the situation from the perspective of the other person. And there are always nuggets to be gleaned for all of us who find ourselves on the caregiving journey.

Rely on trust

Ken Zuckerman, M.D., nearly cried when he saw the sunrise the morning of June 4, 2022.  He was back in his San Francisco home after being discharged from his first-ever hospital admission. He felt lucky to be alive after being diagnosed with a rare autoimmune bleeding disorder.

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“My heart was exploding with happiness,” says Zuckerman, 59, a pediatric anesthesiologist at Children’s Hospital in Oakland and the medical director of PDI Surgical Center in Windsor, California. “Suddenly, I was looking at the world with new eyes, able to see the beauty in everything. Routine objects and actions were accompanied with a profound sense of gratitude.”

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Ken Zuckerman with daughters Maya Wilson Ehrenthal and Alanis Wilson Ehrenthal.
Photo courtesy of Ken Zuckerman

Zuckerman’s symptoms began suddenly on a Sunday evening. He experienced a growing headache, then nausea, followed by shortness of breath and a rash. At the doctor’s office on Thursday morning, he learned his platelet count had dropped dramatically and his condition was life-threatening. He was immediately admitted to the emergency room.

“As a physician, I knew that what I was experiencing had multiple possible causes, and understood that if not evaluated and treated, there was a chance I could bleed to death,” says Zuckerman.

It was in this first moment of crisis that he began to experience the slow sense of dread and helplessness that families and caregivers can feel when a medical situation is out of their control.

“Hours went by in the emergency room,” recalls Zuckerman. “No one asked me if I wanted something to drink or if I needed to go to the bathroom. A sense of gloom set in, but eventually, someone ordered me a platelet transfusion,” he says.

There was more testing, CT scans, MRIs, all to evaluate the cause and possible effects of a profoundly low platelet count. “I was struck by how alone I felt. ... I took a deep breath and reminded myself that ... emergency departments [are] busy places, made up of many moving parts that don’t always fit together. 

“I’d often observed patients or caregivers express frustration when the hospital staff is taking the person’s medical history,” Zuckerman explains. “Patients can feel as though they are repeatedly being asked the same health-related questions that are already in their chart.” Experiencing this on the other side of the bed, as the patient, he knew that the taking of a medical history is an art form, especially if done well. “When I became the patient, the only way to move forward was to rely on trust,” he added.

As a pediatric anesthesiologist, he was familiar with gaining trust from the parents of his patients, usually within a short time period between meeting them, evaluating their child and caring for the child in the operating room.

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“I invite parents to ask questions,” he says. If not, the patient and family may be scared to ask questions and can walk away stewing with fear or afraid, despite consenting to a procedure.

Zuckerman’s hospital stay also helped him to appreciate the role of the nurses in a different way. “As a doctor in the operating room, the nurses care for the patients with me in a collaborative fashion. But as the patient, the nurses were the ones who delivered 95 percent or more of the care.”

Zuckerman is “extraordinarily thankful” for the correct care he received. “But what I came to appreciate even more strongly was how vital communication is to both the patient and the patient’s family.”

While Zuckerman is in remission, there is hope that he may never relapse. The experience for him was “fundamentally transformative,” and he feels an ongoing, deep gratitude for the treatment he received. “I have the ability to live my life, and getting through the illness allowed me to see that with more clarity,” says Zuckerman.

See the value in second opinions

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A second opinion saved Thomas Lee’s life.

Thomas Lee, M.D., 60, is a pediatric surgeon at the University of Chicago Comer Children’s Hospital. In 2015, he was diagnosed with advanced-stage lung cancer. “I thought I’d be a goner,” says Lee. “I knew the statistics and didn’t think I’d be alive today to talk to anyone.” He was told his cancer was inoperable, but he sought another opinion at the encouragement of his oncologist. He found a surgeon in Boston who was willing to operate.”

Ultimately, Lee had a rare gene mutation in his lung cancer that allowed him to fight back. Amazingly, he recuperated and is fully functioning today, back to working full-time.  

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“As a physician, I sometimes see the line of questioning from a patient or their family become antagonistic toward the medical or hospital staff,” Lee says. “As a patient, we’re taught to question our care and to advocate for our health care plan. After my surgery, I observed that everyone, from the surgeon, residents, nurses and even the environmental service folks are fighting for you and against your disease.” 

Lee says his experience as a patient has impacted his “second chance” at full-time medical/surgical work. “I may be more sensitive in the way I handle conflicts between the health care providers and patients. When I am confronted with a ‘difficult family’ or a ‘difficult colleague,’ I may control my reactions better. The goal has always been to provide the best care for my little patients, and working with parents is always part of that goal."

Develop a team mindset

Terry L. Wright, M.D., 68, a gastroenterologist from San Francisco, recently gained a new perspective when she and her four sisters became caregivers to their 89-year-old “Mum,” Diana Morag Chisholm. Her mother, who is also a physician, is in excellent physical health, but is increasingly confused and forgetful. As a physician working at the VA for over 20 years, Wright prided herself on the ability to deliver excellent care to veterans as part of a well-coordinated team of medical professionals, each with their defined roles. It struck her that the “team mentality” was an important aspect to take into caregiving loved ones, whether in the hospital setting or at home.

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Theresa Wright and her “mum” Diana Morag Chisolm take a walk in Winchester.
Theresa Wright

“Just like a medical team, our family care team has different capabilities and responsibilities,” says Wright. “We all divided and conquered to ensure that Mum had full-time coverage, that finances were in order and taxes paid. Fortunately, three sisters live close to Mum, and can ensure that she gets to her regular doctor visits and is compliant with medication. All five sisters are tasked with helping to prioritize quality fun time for Mum’s children and 13 grandchildren.” 

In her career as a physician, Wright learned to be prepared to meet the unexpected. Although her father had died decades earlier, her mother’s partner of 20 years was 91, with no family of his own. Wright and her sisters hadn’t foreseen caring for him as part of their responsibilities, but it was clear that his overall wellness was important for their own mother’s health and well-being. 

“The concept of teamwork is essential for caregivers,” says Wright. “It was how I’d operated in the medical setting, but being a family caregiver reminded me of the importance of relying on others to practice self-care and avoid burnout. One of the things I recognized was that compassion is a central ingredient to the role of physician as well as caregiver. 

Tips for Caregivers from a Physician’s Perspective

  • Ask a lot of questions of your medical team. Don’t be afraid you are taking too much time or being annoying.
  • Accept that not everyone has the same communications skills, and understand that in most cases the medical team does not mean to be insensitive.
  • Everyone on the medical team is busy; there may be times you feel as if you and your loved one’s needs are a task to be ticked off. You must persist.
  • Keep in mind that for fields like oncology or other life-threatening illnesses, many members of the health care team avoid letting the emotions seep in. Do not take this personally; they are facing trauma too. 
  • Be nice to everyone on the care team, and remember that they are there for you. Leading with kindness also makes you feel better and can lower your own anxiety.   
  • If you are new on the caregiving journey, find someone who has been through a similar experience. Family members can’t give the same level of comfort as people who have been down that road.

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