A presentation given to the bioethics committee, Sacred Heart Hospital, Pensacola, FL.
My presentation today is about the challenge, professionally and emotionally created by certain external forces, which encompasses bioethical issues when one’s roles merge.
I am privileged and blessed to have many roles in my life: physician, wife, daughter, mother, now grandmother, sister, aunt, friend, and colleague. At times, these roles blend, other times, they are murky and can cause intense professional, including bioethical conflicts.
I have had recent experiences with both of my parents’ dying and death and other situations with friends that illustrate this dichotomy. There is much written about problems caused by physicians treating family members, but little about crisis situations with dying family members or friends.
In the book, Medical Ethics, Thomas Percival wrote, in 1794, the first code of conduct regarding physicians caring for themselves and their families:
A physician afflicted with disease is usually an incompetent judge of his own case and the natural anxiety, the solicitude which he experiences at the sickness of a wife, child, or anyone who by ties of consanguinity is rendered peculiarly dear to him, tend to obscure his judgment, and produce timidty and irresolution in his practice. Under such circumstances, medical men are peculiarly dependent upon each other, and kind offices and professional aid should always be cheerfully and gratuitously afforded.
The AMA continued with this code until further revisions in 1957 upon which this code became abbreviated. The most recent revision of the code occurred in 1977 in which the Judicial Council (now the Council on Ethical and Judicial Affairs) revised the code, omitting references to the treatment of families, but issued advisory guidelines: “Physicians should generally not treat themselves or members of their immediate families. Professional objectivity may be compromised when an immediate family member or the physician is the patient.” I do not see references to treating friends.
The studies do show that most physicians treat family members or friends at some time in their careers. The treatments can range from minor, like answering questions or giving advice or referrals, to antibiotic treatments for sinusitis, to performing surgical procedures.
Each of us in the medical field as some type of caregiver has probably experienced some occasion to offer our expertise. I am sure you have been asked medical or professional questions by close friends or family members, or even casual acquaintances in social settings. I remember, as an inexperienced medical student one such occasion. (I went to medical school as an older person). I was sitting on a bleacher as a soccer mom watching my daughter playing in a tournament, when another mother learned that I was a medical student. Oh, she was so thrilled to hear this, and although we had just met, she proceeded to ask me very intimate gynecological questions about herself. I was flabbergasted and really didn’t know how to respond. I wanted to help, but also wanted to be left alone and realized this was certainly not appropriate.
I have experienced many uncomfortable situations since: my friend and neighbor is also my patient. She is a good-hearted and generous person, but she also knows the neighborhood, and if one wants to know anything about any of our neighbors, we ask her! This can be a bit of a problem as she is aware that I am the doctor for many of our neighbors. She has at times, tried to get information about our neighbors from me, particularly about their health. It was awkward at first, but after I explained about privacy and confidentiality, she has been very respectful. And, I think, has even been reassured that I would never discuss her health with anyone else.
I received my medical education — medical school and residency — in Washington, DC. For me at that time, it was extremely unusual to treat one’s family or close friends. Most of us physicians worked a substantial distance from our homes. But, when my husband and I moved to Pensacola, I saw a different practice. My colleagues lived and worked in their own community. Here, it is much more like the “old country doctor” who takes care of fellow members of his community.
It is essential in this situation to separate roles. I found that once I enter the examining room, I have to put on my “doctor’s hat,” even if the patient is my close friend. It has taken time and maturing to become comfortable in these relationships. This is not always easy, and many doctors are uncomfortable with roles like this. Many doctors treat other doctors and have conflicting feelings.
There are times when we are in a crisis situation and have conflicting roles to fill. Like some of you who have unfortunately experienced a loved one’s medical crisis. This can be worsened because of knowledge and medical expertise.
The pivotal experienced which prompted me to present this topic occurred almost one and a half years ago when my mother was dying. My mother was extremely proud that I was a doctor. She periodically involved me in her medical care and would ask her internist, with whom I had a very good relationship, to talk with me about her health and to regularly forward me her lab results. Shortly after my father died, my mother developed a perforated appendix, underwent an emergent appendectomy, developed sepsis, and after an ICU stay, remarkably recovered and was transferred to a rehabilitation center for a painful and protracted recovery, interrupted with a readmission due to bilateral DVTs. She returned to the rehab facility and then had to move to an assisted living facility as she was not able physically to remain independent. She lived there only fifteen months before her death.
During that time, I was involved not only as her oldest child and only daughter, but also as her doctor daughter. This proved to be extremely challenging and had the potential for disastrous results. Fortunately, those did not occur.
I intervented on her behalf a few times and from a distance as she was living in Maryland. Once, while she was in the rehabilitation center, she was complaining that her legs were swollen. I had to repeatedly call her provider to encourage her to investigate the edema, thinking it was only because they had neglected to give her her diuretic. However, not only did they not administer her correct medications, it was discovered that she had bilateral DVTs-hence her readmission to the hospital.
She did recover and moved to an assisted living facility without much difficulties and with some peace and happiness. Her decline began with a syncopal event and a fall. She was taken to the ER, discharged and then worsened. When she saw her internist and had lab work, he contacted her and recommended she go to the ER for evaluation and possible admission as her kidney function was critically compromised. She did not want to go back to the ER. She asked that I talk to her doctor, which I did. He explained that she was deathly ill, and he wasn’t sure why she was in that state, but with her comorbid medical problems, would not survive without at least, IV fluids. He was clear that in her state, even with hospitalization, she might not survive.
I called Mom back to report our conversation and explained what he said. She understood and said, “I don’t have a choice,” to which I responded that she did, if she wished to, she could remain home and call in hospice. She chose to be hospitalized, with a clear understanding of her dire condition.
She was hospitalized a total of 5 days before she died. I flew up to be with her and to say goodbye. While I was there, I experienced so many different challenges. Since I am the oldest child and the only surviving doctor in the family (my father was a physician also), I felt some responsibility to take the lead. At the same time, I am her daughter and was losing my mother, and it would be our final meeting.
How to make these roles work? I took my husband’s advice. He is a clinical psychologist, and he encouraged me to remember that first I am her daughter. It was so valuable to remember that.
When I first met with Mom’s intensivist in the hall, we discovered many things in common! She had been in the Navy and had trained in Pensacola and was about my age. So, when we were talking about Mom’s condition, it was much more on a collegial level. I had to stop her to remind her that I was not particularly objective, as this was my mother. She understood and respected that.
Although I was the one to inform Mom of her serious and life-threatening condition, over the phone no less, I was not the one to talk with her about her decisions during her hospitalization. We were extremely fortunate to have a phenomenal palliative care physician caring for Mom. He met with my brothers and me and then he met with Mom with us. We told him about her extraordinary life and accomplishments and about her. Since Mom was so coherent and aware, all of the decisions were left up to her. He took over the responsibility of being the health care giver and discussing her choices. And in doing so, this allowed us to become the grieving children. We did discuss her dying and end of life and our lives together. And as we say in our medical world, if it is at all possible, she had a “good death.” I was able to love her and hold her and cry with her and say goodbye. I flew home and that evening, she died with my two brothers holding her hands.
When my father died not quite two years before Mom, he did not ask me for medical information and interpretations, nor did he ask me to intervene. His approach was very different from my mother’s. He learned that he had lung cancer, and because of his debilitation from the disease, made the decision to call in hospice. He was totally aware of his terminal illness and really did not have questions. He was “curious” about dying. Our relationship was much more of a father-daughter relationship and at times, collegial related to medicine. I did not experience the conflict of roles with my dad’s illness and death, only the pain and loss without him.
These many situations illustrate several key components I wish to highlight. Objectivity, care, professionalism, privacy. There is no black and white answer; the gray smudges and boundaries are not clear. When to back off, when to pursue? Does one’s involvement help the situation? Or does it cause damage and more pain? Family tensions and loyalties can be tested. What expectations are there? Of yourself and or family and friends?
In my research, I found some advice. Generally it is recommended not to treat family members. Not much is written about friends or community members. Expectations should be clearly expressed. Knowing oneself is a key element in the situation, for example, separating my doctor’s role from my daughter’s role.
And on the other hand, it is a privilege to be involved emotionally and professionally. Sometimes loved ones do find comfort that they have someone “on the inside” to help explain, interpret and advise. This can be an honor, but is not without its challenges.
Katherine L. Price is a family physician.