When a family member becomes ill, it can lead to an internal struggle for healthcare providers. What if the ill family member was your spouse AND the physician you practice with? Dr. Renee Harmon visits the blog today to talk about her unique experiences and share what she has learned from them.
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The first jolt of fear came on a family vacation to Costa Rica. He couldn’t keep up with our guide’s simple instructions. It was weird. And alarming. But I had to probe. Because he would know what I was doing if I asked him the questions from the Mini Mental Status Exam, I instead asked him to recall our teenaged daughters’ birth years. He couldn’t do it.
The journey to finding a diagnosis for my husband began.
Not only was he my husband, though, he was also my partner in the family medicine practice we had developed together over the previous eighteen years.
Harvey and I met in college, married after our first year of medical school, attended the same residency, and then established Double Oak Family Medicine. Our model for the practice was that we were both part-time while our children were young, sharing responsibilities at home as well. It was the perfect arrangement for the lifestyle we both desired, affording us time to develop our individual outside interests and to equally parent our daughters.
The Costa Rica vacation occurred when Harvey was forty-nine years old, and that perfectly balanced life we had created began to fall apart.
I knew in Costa Rica that something was wrong with Harvey’s cognition. He had been telling me for a couple of years that he thought his memory was not as good as it should be. But what middle-aged person doesn’t think that? I had blown him off, but now I was alarmed. When I suggested he see a neurologist, he countered that he would like to try some computer-based brain training games first. If his scores didn’t improve in two months, he would see a neurologist.
In that two month period, I frantically researched. His pulmonary sarcoidosis at age twenty had been in complete remission for almost thirty years, but could this be neurosarcoidosis? There was the weird visual field defect noted fifteen years previously, but it was stable, and the optical/brain MRI had been normal. He had no history of concussions or trauma. He was in excellent physical shape, running marathons regularly. I doubted it could be a cardiovascular issue. It looked most like Alzheimer’s disease, but he was so young. And there was no family history. I had never encountered younger-onset Alzheimer’s disease in our practice, but I knew it existed. Could this be it?
When Harvey’s two months of brain training came to an end, his scores had not improved, but he had forgotten our bargain, and I had to cajole him into seeing a neurologist. We chose a local neurologist in private practice to whom we referred frequently, who was excellent at diagnosing the obscure, and was very thorough. I felt like our concerns would be taken seriously.
The complete evaluation included normal labs, a MMSE score of 28/30 (Harvey couldn’t recall two of the three objects), and an MRI with mild global atrophy, especially in the hippocampus. His diagnosis was mild cognitive impairment (MCI), and he was started on Aricept, and two months later, Namenda. When I asked the neurologist how I would know if it was safe for Harvey to practice medicine, the unhelpful reply was, “You’ll just have to watch him very closely.”
But how was I supposed to do that? I couldn’t break patient confidentiality and secretly tape his encounters.
I began to watch him clinically and dispassionately. And I hated that I was doing this to my spouse.
When I asked Harvey if he thought he could still practice medicine, he replied that he felt comfortable seeing easy cases, and that he referred the more difficult ones to specialists. He began to ask me more questions about best practices. He then told me that his medical assistant helped him remember medication names at times, but she never said anything to me. No staff ever did. His notes became sketchier and shorter. When I asked Harvey again if he thought he could practice, he replied, “Renée, I’ll count on you to tell me when I should retire.”
This placed me in an untenable position. I was his wife. I realized that if I were only his medical partner in the clinic, I would have no idea that anything was wrong.
But I had to do something. So I searched the internet, trying to find out what other people did in this situation. However, the only information on impaired physicians that I could find was on impairment due to drugs or alcohol, and the programs employed to rehabilitate these physicians so they could practice again. Nothing about cognitive impairment. My own state’s medical board had these programs for physicians impaired by drugs or alcohol. And an anonymous hotline.
I dialed the number, sweating profusely, my heart hammering in my chest. I was about to out my husband. Who turns in their own spouse as an impaired physician? But I had to do something. If he made a mistake, a patient could be harmed. Implied in the Hippocratic oath is “Let no harm come.”
I was expecting a physician colleague to answer the phone at the board, but it was a lawyer. Explaining that my medical partner was practicing with a diagnosis of MCI, and oh, by the way, he was also my husband, I asked for guidance. The lawyer was kind, agreed that it was not fair to ask me to make the decision, and suggested I seek out another specialist who could answer this question directly.
I turned to neuropsychology.
It took a month to obtain an appointment and another month for all the testing to be scored. At the final meeting with the neuropsychologist, now nine months after the Costa Rica trip, we were told that Harvey had younger-onset Alzheimer’s disease and that his cognitive deficits were severe enough that he should no longer practice medicine. We were instructed to call the medical board, and that they would help create a plan to phase my husband out of our practice.
That was a Friday. We digested the news and told our families over the weekend. Monday, I called the board after seeing my morning patients, and spoke to the same lawyer who had taken my call previously. When I asked for the plan to ease my husband out of the practice, he said that Harvey had to leave immediately. The liability was too great.
I told my husband, then our practice manager, and we called a meeting at lunch to tell the completely unsuspecting staff of my husband’s diagnosis. Then Harvey left, leaving his long white lab coat hanging on the back of his office door.
In that instant, I became a full-time solo physician, primary parent to two teenaged daughters, manager of our practice and our household, and caregiver to my husband.
* * *
My medical knowledge served me well in the remaining eight years of Harvey’s life. I understood the medications and their side effect profiles. I could easily maneuver appointments (I changed from the private neurologist to one at the teaching hospital). I pushed to enroll him in drug trials. I understood the complexities of insurance, billing, and EOBs.
One day about five years in, Harvey began to feel unwell. Unable to tell me what he was experiencing, I examined him and discovered right lower quadrant pain, an elevated white count, and an abnormal abdominal CT. Within two hours, he was prepped for an appendectomy. It didn’t bother me to be his physician in this instance. I was able to separate my roles of spouse and physician, and in doing so, saved precious hours. Unfortunately, I was unable to get him to consistently use the incentive spirometer, and he developed postoperative pneumonia.
About a year later, Harvey had a grand mal seizure. Because it was his first seizure, he went to the emergency room. Here, I encountered the first episode of “dementia disconnect.” The nurse asked for a urine sample, and of course, my husband couldn’t understand what was requested, so he was catheterized. Not a pleasant scene. As the tech was wheeling him to the CT suite for a head CT, I was told that I wasn’t allowed to go with him. Not five minutes later, I was asked to please try to calm down my husband.
Our next encounters with medical personnel were at geriatric psychiatry wards. Harvey had become resistant to anyone trying to bathe or dress him and had broken down the door in his memory care unit trying to escape. They transferred him to be evaluated and treated for these behaviors. He had to be medicated with IM Haldol throughout the first twenty-four hours. It broke my heart to see him so confused and medicated.
The psychiatrists, when I was able to track them down, explained everything to me as a colleague, for which I was grateful. However, when one of them started asking my opinion about medications I thought he could try, I became uncomfortable. I had enjoyed the perks of understanding the system, the language, and the pharmacology, but I did not want to be my husband’s psychiatrist.
When he became immobile and confined to a chair or the bed, I had Harvey transferred from his memory care unit to a skilled nursing floor and asked for a hospice referral. The head nurse on the floor didn’t think hospice was appropriate, and she talked me out of it. I should have stood my ground and demanded it, but I was tired. Two months later, he became dyspneic and unresponsive after a long seizure, and quickly developed aspiration pneumonia. His nurse practitioner asked if I wanted Harvey to be treated or if I wanted to opt for “comfort measures only.” It took me a beat, but I knew hospice was the best option. He died four days later.
That was eight years after his diagnosis, and it’s now been two years since his death. I journaled throughout his journey, and I have written a memoir about it, hoping to help other caregivers provide compassionate care for their loved ones with dementia. I have given presentations to several groups involved in Alzheimer’s disease.
* * *
I want to address physicians about our experience now.
What I learned helped me to be a more compassionate doctor. As difficult as it was for me to navigate the healthcare system at times, even with my immense understanding, our patients truly feel swamped by it. Our role as guides to the system cannot be overstated.
Alzheimer’s disease is a bitch. We need more research to understand it, and thus, treat it. Primary care physicians need good training in screening and detection. I was not very apt at this prior to my husband’s diagnosis, but I became an expert and diagnosed many cases in my practice with confidence, referring when necessary. Don’t blow off a patient or family member if cognitive concerns are mentioned. Because we were both physicians, the diagnosing physician took our concerns seriously, and because I pushed, Harvey was diagnosed just nine months after the Costa Rica trip. It usually takes two years for a layperson to get a diagnosis.
All medical personnel need training in how to care for patients living with dementia in all settings. Just because “It’s always done this way,” doesn’t mean it will work for someone with Alzheimer’s disease. You can trust the primary caregiver to tell you how best to approach the patient. These patients should never be left unattended. Insist that the patient be accompanied by a trusted caregiver at all times.
I’m less clear about what I learned about systems meant to protect the public from impaired physicians. Medical boards need to clearly list cognitive impairment along with the usual impairments of drugs and alcohol. A physician (nurse, pharmacist, or anyone) with cognitive difficulties may not self-report. They may not even have the ability to understand what is happening. Spouses of physicians with cognitive decline should feel empowered to report what they are seeing at home to their affected spouse’s partners or employers.
I also came to appreciate the premium disability insurance that Harvey had insisted he and I purchase. You never know what disaster might befall you. With that money, along with my salary and his Social Security benefit, I was able to pay for our daughters’ college educations, a wedding, two years of in-home care for Harvey, and two years of memory care. I realize just how privileged we were to have this kind of income. The vast majority of families facing this diagnosis do not.
This eight year experience has certainly shaped my life irreparably. Never would I have imagined something like this happening to my husband and our family, but it has given me the chance to impact more lives in more ways than I knew I could. For that, I am grateful.
