A few years ago, Joseph A. Carrese, MD, MPH, FACP's, aging yet otherwise healthy and active father called with a depressing prognosis. His doctor could neither explain nor recommend treatment for a progressive weakness in his lower back that had plagued him for months. The condition worsened with exertion, severely curtailing his lifestyle and leaving him feeling uncharacteristically adrift and despondent.
As a son with medical expertise, Dr. Carrese, a professor of medicine at Johns Hopkins School of Medicine and Berman Institute of Bioethics in Baltimore, had the initial instinct to jump in and help. He considered bringing his father to Johns Hopkins and becoming actively involved in his care. However, from an ethics standpoint, he'd always been careful to maintain boundaries between his personal and professional lives when family or friends became ill.
Without any clear diagnosis or treatment plan, Dr. Carrese decided on a middle ground. He would arrange for his father to see a trusted specialist at another hospital, someone who eventually figured out what was wrong and set him on a path toward recovery. Dr. Carrese wrote about his experience in the March 2020 issue of The American Journal of Medicine.
“In this case, I tried to follow ethical guidelines to the extent that I could while still being involved in what was going on with his care,” said Dr. Carrese. “I didn't take over his care, but I stayed involved by coordinating, setting up appointments, and advocating.”
Many physicians face similar dilemmas as they find themselves in the role of caring for a family member or friend, according to a case study published recently by ACP's Ethics, Professionalism, and Human Rights Committee. The case study focuses on an internist who struggles with the parameters of her role as physician and daughter after her mother is diagnosed with liver cancer.
“When we find ourselves in this position, it's very reasonable and appropriate for the physician family member to serve as an advisor, interpreter, and advocate,” said committee chair Janet Jokela, MD, MPH, FACP, professor and head of the department of medicine at the University of Illinois College of Medicine at Urbana-Champaign. “We can help facilitate care, but we can't always offer specific advice or try to answer every question, especially if the illness is outside our area of expertise.”
The physician's role with family
One of the first steps in the event of a serious illness affecting the family member of a physician is to discuss the patient's wishes and preferences around privacy and sharing of health information, said Cathy J. Lazarus, MD, FACP, associate dean for student affairs and professor of medicine at Louisiana State University in New Orleans, who has developed a medical ethics curriculum for medical students. The patient must grant permission in writing for the physician family member to access personal health information and discuss details of care with the treating physician.
A meeting should be held early on involving the patient and physicians on both sides in order to come to a consensus on the physicians' respective roles, noted the ACP case study. In addition to clinical issues, the discussion should touch on the patient's and other family members' preferences for direct communication with the treating physician versus through the physician family member.
Family preferences around information sharing vary widely, said Savitri Fedson, MD, associate professor at the Center for Medical Ethics and Health Policy at Baylor College of Medicine and program director for clinical ethics at Baylor St. Luke's Medical Center in Houston. For example, some patients may want the physician family member to be very actively involved in care, including accompanying them to appointments and relaying information to other family members, while others may prefer that the physician stay in the background as a resource.
Communication should always be guided by respect for the patient's best interests and preferences around privacy, noted the ACP case study—a rule that isn't always easy to follow in practice. For example, said Dr. Fedson, the physician cannot divulge details about the patient's prognosis or condition if the patient has expressly asked that certain information be kept confidential from any or all family members. The physician must comply with those preferences even when pressed by concerned relatives.
“You have to be willing to stand firm with family and friends at times and just say that's the way [the patient] wants it to be,” she said. “Your role is to protect their rights even when that's uncomfortable.”
The physician caregiver can serve as translator and interpreter for loved ones but shouldn't be expected to do more, noted Robert M. Arnold, MD, FACP, chief of palliative care and medical ethics at the University of Pittsburgh School of Medicine. Still, physicians often feel guilty that they are disappointing loved ones when they can't comply with requests for specific information or services, such as ordering a prescription even though it might seem more convenient or expedient than going through a treating physician.
“As a physician who is part of the family, I can help them ask the right questions and empathize with their feelings, but I can't always do what they ask,” he said. “I have to remind myself that I'm doing the best I can even when I can't give them what they want.”
Working with the care team
Whether or not physician family members have power of attorney, which clears them to speak directly with caregivers on behalf of the patient, it's important to develop a rapport with the treating physician and other members of the team, experts said. That means clearly establishing boundaries between professional and personal roles.
“It's fine for the family member physician to call the treating physician with questions or clarifications, for example. You don't have to pretend that you don't have medical expertise,” noted Dr. Arnold. “However, the care team should not feel like you are micromanaging the process or that they should defer to you.”
Ideally, the relationship between treating physicians and family member physicians will be mutually supportive, said Dr. Lazarus, who is an adjunct professor in the Tulane University School of Medicine Program in Medical Ethics and Human Values. The treating physician should be able to speak honestly with the family member so that he or she can assist the patient and family in making appropriate decisions going forward.
Of course, there is room for error on both sides, she added. For example, treating physicians might assume that they can “dump” medical facts onto the family member physicians without much explanation or guidance, an approach that doesn't respect the other physicians' feelings as sons, daughters, siblings, or other close relatives. Similarly, they might depend too heavily on family member physicians to explain and interpret medical information to the patient and others.
On the family side, the doctor should refrain from interrupting or dominating the conversation during check-ins, said Dr. Fedson. The relationship works best when physicians fundamentally respect each other as colleagues.
According to ACP's case study, physicians who are also family caregivers should use their expertise to interpret and explain tests, procedures, and medical jargon but should not be expected to convey information regarding the patient's status. Clinical questions should be left to the treating physician, especially when they fall outside the family member's expertise.
There may be situations where a physician may feel compelled to intervene, such as if he or she suspects a relative is being misdiagnosed and could face potentially serious long-term consequences, as was the case with Dr. Carrese. In that instance, he took an active role in finding another specialist but stepped back after making the change.
“Once we established a relationship with a trusted provider, I tried to be as hands off as possible and not insert myself into decisions about diagnosis or treatment,” said Dr. Carrese. “As a family member, I want to be appreciative and supportive of the treating physician, interpreting information for my family but not offering my opinion unless invited to engage in that conversation.”
Finding the right balance as a physician and family member can be difficult, and many physicians struggle with managing their own emotions while also acting as an interpreter for others. The care team should recognize those stresses and structure care in a way that doesn't place too much responsibility on the physician family member, according to the ACP case study.
For example, the treating physician should talk to the patient about the importance of having new symptoms evaluated by the treating physician, rather than sharing such information only with the family member. In addition, patients should not ask family members to prescribe medications or order tests, even though it may seem more convenient. The care team should ensure that the patient has access to appropriate resources and services and not assume that the physician family member will take on clinical tasks.
It's important for physicians to acknowledge that they might need help dealing with their emotions, said Dr. Jokela. Physicians often do not follow the advice they give their own patients about taking care of their personal well-being and health during times of stress. (ACP resources on this topic are available.)
COVID-19 adds another layer of complexity to the experience around family illness, Dr. Jokela added. Besides restrictions on visits and travel, which often make it impossible to be physically present with a loved one, the virus curtails social interactions and activities that would normally help people cope during difficult times.
For physicians, a family member's illness often creates tension between the normal grief they would feel for a loved one and the attitude of objectivity that they are used to as a medical professional, said Dr. Lazarus, who experienced such emotions firsthand when her mother was diagnosed with cancer.
She recalled accompanying her mother to an appointment for a CT scan and being invited by the radiologist to view the results, which clearly showed the gravity of her mother's condition.
“I was walking around with the knowledge that my mother had stage 4 lung cancer before the diagnosis was disclosed, even to her,” she said. “I was then expected to interface that information to my father and sister, but at the same time, I was grieving.”
Talking with colleagues outside of the family who had been through similar experiences helped manage those emotions, Dr. Lazarus said. Mentioning your situation in passing to fellow physicians can prompt others to share their own impressions and lead to deeper connections.
“During times of serious illness or grief, it helps for physicians to share their feelings, and we can't necessarily do that with other family members,” she said. “We are carrying the same grief as others in our family but also the burden of specialized knowledge. Talking to someone who recognizes and acknowledges that dual burden is important.”