Long before COVID-19 wreaked havoc on the health care system, Dr. Judy Korik Weinstock was already feeling frustrated.
“How can you be expected to tell a patient he or she has cancer, recommend a treatment, offer other options, and provide emotional support — all within 15 minutes — and end by telling the patient that you won’t be able to see them again for another three weeks?” she asked rhetorically, describing the limitations that seemed almost contradictory to what she believed her professional role should be.
As has been well-documented, the situation grew much worse during the pandemic, which ushered in a phase of epic malaise in the medical profession. In September, a paper published in the Mayo Clinic Proceedings showed that 63 percent of physicians surveyed reported at least one symptom of burnout at the end of 2021 and the beginning of 2022, an increase from 44 percent in 2017.
In Massachusetts alone, one-quarter of physicians now in practice say they will leave the field in the next two years, according to a recent survey of its members by the Massachusetts Medical Society.
Weinstock understands the frustration of family members seeking guidance and information in the care of a seriously ill loved one during a time of ever-diminishing resources. But every day she witnesses the other side of it, too.
“The doctors who are still working are busier than ever and are running ragged trying to see patients,” she said. “People have put off seeing doctors for years due to the pandemic and it is all spiraling.”
Weinstock, who is dual-certified in family medicine and palliative care, said that in the midst of the pandemic, she found herself “rushing between families, specialists, and patients” as she tried to glean information from her colleagues and communicate it to patients.
“Families were begging me to spend more time with them, even offering to pay me under the table, which of course I refused,” she said.
But rather than succumbing to burnout, last fall Weinstock started her own company, called Circle Advocacy, to provide personalized attention to patients and families in crisis. Now she balances two professional roles: one as a physician and another as one of the more than 70,000 professional patient advocates currently working in the United States.
While numerous social workers, nurses, and counselors strive to provide the same kind of advocacy, Weinstock’s advantage lies in the fact that she is a physician — one of only four among the 19 Massachusetts-based patient advocacy companies listed with the National Association of Health Care Advocacy. Not only can she help with communication between doctors and patients; she can research treatment options, attend doctors’ appointments with her clients, and even scrutinize their medical records — with their permission.
When Weinstock founded her Chelmsford-based firm last September, she believed that her medical training would be her greatest asset. But in the six months since, she has observed that most families value her insights as a daughter and caregiver just as much, once she tells them about her own experience moving in with her parents at the end of her father’s life and trying to help manage his Alzheimer’s symptoms.
“Taking care of someone with dementia is emotionally and physically draining, depressing, and demoralizing,” Weinstock said. “I let them know that every single person who has a loved one with this illness has guilt and thinks they are making the wrong decisions. I normalize all of it.”
Dr. Heidi Kummer, a Boston-area critical care physician, is president of the Patient Advocate Certification Board, a national standard-setting body for health care advocates. Although her organization’s directory doesn’t distinguish its members by degree, she believes that fewer than 5 percent of patient advocates nationwide are medical doctors, but she anticipates imminent growth in that number.
“It won’t surprise me if we see more and more physicians looking to transition out of the clinical craziness while … using their skill sets in terms of still being able to navigate the system,” Kummer said. “And I believe that’s a direct result of the pandemic. We all went into health care wanting to help people, and the way medicine is practiced these days is not always conducive to helping. So people are looking for other ways to use their knowledge and experience.”
As president of Greater National Advocates, a nonprofit national organization that connects patients and their families with independent advocates, Bradley Schwartz agreed with Kummer that the move toward patient advocacy is growing.
“Physicians are becoming more and more frustrated and are looking for more autonomy,” he said. “When they are restricted by corporate restraints and cannot treat patients the way they want to, it makes a lot of sense to go work directly on behalf of patients.”
Weinstock’s Circle Advocacy’s clients, who usually pay out of pocket for the services at an hourly rate of $300 after a complimentary consultation (two out of 10 clients she takes on are pro bono), can choose between in-person and virtual visits. Frequently, Weinstock’s cases involve dual diagnoses, such as cancer and advanced Alzheimer’s.
“Maybe the patient has been hospitalized three times with infections and the family is looking for ways to decrease those infections,” she said, describing a hypothetical but typical scenario. “Every time the patient is hospitalized, she gets confused and agitated and can’t sleep at night. But no one is in favor of giving her sleep medication. The patient has four adult kids, and none agree on what to do. Now it’s causing tension within the family. If they could just have someone look through the medical records and discuss the options, along with pros and cons, they might be able to come to some agreement. But scheduling with doctors and getting specialists to talk to each other has been difficult. So they call me. I can go through the records, help them understand what’s happening, discuss their options, and offer insight on what might happen next.”
Bob Pacl is a social worker at Emerson Hospital in Concord who has brought Weinstock in on some of his palliative care cases. “When someone is very sick and nearing the end of their life, there are a lot of decisions to be made, and people take very different approaches to making those decisions,” Pacl said. “Do you devote your time to treatment and prolong your life but spend half of it in hospitals? Or do you opt for minimal treatment, go home, and live your life as best you can for whatever time is left?
“When I bring Judy into a palliative care conversation with a patient’s family, she’s not presenting information in a one-way fashion; she’s coaching. She has a talent for uncovering what the patient and their family need and want; she helps to clarify what’s important for them to understand in order to make the right decision.”
“As a physician who has worked with elders in hospitals and care facilities for over 15 years, over and over again I have seen the ways that serious medical crises impact the whole family,” Weinstock said. “And as a daughter, I know firsthand the pain and discouragement of caring for a loved one with a severe health issue. My goal is to empower families with knowledge and resources while advocating for their rights and needs.”
Nancy Shohet West can be reached at NancySWest@gmail.com.