The other day, I mentioned that I would be writing about my experiences in dealing with my mother’s recent death. Early in my medical career, when I was a resident physician, much of the time I treated patients in an acute care setting, and not surprisingly, quite a number of them died from the assorted problems that got them to the hospital. If it was not a motor vehicle accident, then it was a myocardial infarction, meningitis, and so forth. In none of the patients did I have a long-term relationship preceding the acute event that brought them to the hospital, and my focus was primarily on the disease itself rather than on the disease, the patient and family. Over the past 35 years I have been a medical specialist and have had only a few patient die (mostly from motor vehicle accidents or drug overdoses) and with none was I serving as a primary care physician. So, it was mostly uncharted territory that I ventured into when my own mother became ill and was diagnosed with terminal cancer early in May of this year.
A brief medical history
My mother lived in Columbia, Missouri, not far from me. She was born in 1919 and had been generally quite healthy. A few years earlier, she developed a peripheral neuropathy (etiology unknown) and had to use a walker to get around. She stayed active, swimming 2-3 times a week. She had a primary care doctor, a general internist,who was on the faculty at the University of Missouri and whose office was only a few blocks from her home. She had a good relationship with the doctor and the nurse who worked with him and everything was fine and dandy. Then, all of a sudden, the doctor closed his practice and my mother did not have a primary care doctor. The doctor she had been seeing contacted my mother and told her that he was leaving the clinic, wished her well, and and he suggested another physician who he had taken the liberty of speaking with, and who had agreed to accept my mother into her practice. So far so good.
In January of this year (just after her original doctor left the clinic), my mother developed some vascular problems with her legs. She was seen in the internal medicine clinic by the “new” physician who took a brief medical history and referred my mother to a vascular surgeon for a consultation. From the time of the first visit with the new physician, my mother was not pleased. I felt the problem was mostly that my mother had gotten used to the previous doctor and that over time she would warm to the new doctor. Oh was I wrong.
As it turned out, my mother had an arterial thrombosis in her right leg and had vascular surgery at the end of January of this year. The surgery was not easy for her (at age 90 years, I don’t think any surgery is easy); she spent a week in the surgical intensive care unit but things improved steadily. Once out of intensive care, she was transferred to a medical/surgical ward and was cared for by the vascular surgeons and by the internal medicine hospitalists. Every day she was seen by a different internal medicine doctor and not once did she see or even hear from her new primary care doctor.
After discharge from hospital, my mother was scheduled to be seen by her primary care doctor. As it turned out, after the appointment was made, the doctor’s schedule changed and my mother was seen by an internist who was just “covering.” The clinic had known for a week that the primary care doctor would not be in clinic for my mother’s appointment, but did not inform my mother. The “covering doctor” knew nothing about my mother’s case history and I would describe the clinic visit as a disaster. My mother swore that she would never go back to that clinic again and she didn’t. She insisted that I find her a new doctor, someone like her previous doctor. I decided that my mother might do better with a family practice doctor. I twisted a few arms and the Chairman of the Department of Family and Community Medicine, and also a geriatrics expert, said he would be pleased to see my mother. An appointment was made for late April of this year.
Is it gall-bladder disease?
In mid-April, my mother developed intense itching and then her urine turned dark. Remember, my mother was in-between primary care doctors at this time. I ordered some basic lab tests (I was forced to order the tests since my mother did not have a doctor) and had the results sent to the new primary care doctor explaining in an e-mail that he was to see my mother for the first time in about a week for what was to be routine clinic visit. The test results were consistent with biliary obstruction but there was also anemia and the platelet count was very high. I as a pediatric endocrinologist was way out of my comfort zone. Within an hour after I e-mailed the lab test results to the new doctor, he called me and told me that he wanted to see my mother the next day if she was willing. She reluctantly agreed to the clinic visit (by this time she was tired of all doctors, nurses, hospitals, and clinics).
The first clinic visit with the new doctor
The next day, I drove my mother to the new doctor’s office and from the beginning, I knew things were going to be different. Starting with the receptionist then the nurse, and finally the doctor, it was a completely different atmosphere than at the internal medicine clinic where it was “all business.” First, all of the personnel acted as if they were actually happy to see my mother and made her feel comfortable. The doctor had already reviewed my mother’s chart (we have excellent electronic medical records at my university medical center ) and the visit didn’t start out as if the doctor didn’t know anything about my mother, which had been the case every time at the internal medicine clinic after my mother’s first doctor left the clinic. The new doctor’s demeanor was excellent. He spoke to my mother, not to me as had been the case previously and made her think she was his only patient. He didn’t rush and he explained things to my mother and told her what he wanted to do, why, and asked her it she was willing. When we left the clinic my mother was the happiest woman on earth- she had found a doctor just like her first one and she had complete faith in his recommendations.
The bad news
Unfortunately, as it turned out, my mother did have biliary obstruction, not from a gall-stone but from inoperable pancreatic cancer, diagnosed in mid-May of this year. To make a long story, a bit shorter, every step of the way from the work-up to the diagnosis and until my mother’s death on August 20, her primary care doctor “ran the show.” He took charge and made sure she saw whatever specialists she needed to see (e.g., oncological surgeon) but he maintained control of the treatment plan. He arranged for hospice care and was able to persuade her to do it even though I hadn’t been able to. He worked closely with the hospice team throughout.
At the very end of April, the new doctor went out of town for 2 weeks (on a cruise with his wife), but he had informed my mother of his upcoming trip and made arrangements for another colleague to manage her case while he was away, and called her immediately on his return. He even made a house call the afternoon before my mother died. Remember, this is the Chairman of the Department, a very, very busy man. But, once he agreed to see my mother, he made clear in everything he said and did that he had taken “ownership, ” something her previous doctor had not. For me it was a wonderful experience, considering the circumstances.
My mother certainly had enough to deal with given her diagnosis and the last thing she needed was to have a lack of confidence in her health care provider. But, my mother had complete faith in her doctor and it made all the difference in the world. Her doctor was not an expert in pancreatic cancer and maybe not expert in anything except the most important thing, expertise in knowing what it means to be a patient’s doctor.
Ownership and Medical Homes
These days there is considerable discussion about the need for each patient to have a “medical home.” The idea is that all patients, particularly those with chronic diseases, need to be part of a medical care system that can meet all of the patient’s care needs and that the patient care is provided in a organized and efficient fashion. Who can argue with such a concept? With my mother’s illness, I learned that having a medical home is not enough; it is also necessary that one person, be it a physician, nurse, social worker or whomever, needs to take ownership of the patient and do everything possible to be certain the patient’s medical care needs are being met within the medical home. For my mother, getting excellent health care could not keep her cancer from taking her life, but it made the final days and weeks of her life far better than they would have otherwise been. There is a lesson here for all of us.
One last thing. For those of you who are particularly interested in end-of-life issues, I highly recommend a recent article in the New Yorker, entitled “Letting Go. Rethinking end-of-life treatment,” written by our old friend, Atul Gwande. I warn you in advance- the article is long- but very well done.
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