Strategically Discussing the Future Health of Your Patients

(Editorial note: This commentary was updated on May 5, 2020 to reflect updates from Dr Gordon at the end of the article)

^{By Michael Gordon, MD, MSc, FRCPC}

Emily Dickinson wrote the short poem, called “Surgeons must be very careful.” It reads:

          Surgeons must be very careful

          When they take the knife!

          Underneath their fine incisions

          Stirs the Culprit - Life!

One can interpret it in many ways, and there is an abundance of commentary on it. Is the imagery limited to actual surgeons and knives, or can these images be transported to other facets of life and the experiences associated with them?

I had a medical experience lately that had a profound impact on my “life.” Even though I am still alive, in some ways my “life” in the broadest sense was altered profoundly. The main actor besides myself was not a surgeon, when thinking about Ms Dickenson’s poem, but rather a doctor whose use of non-surgical skills was profoundly damaging even when broadly intended to be beneficial to me and those around me.

I was a practicing physician with an underlying malignant condition for which I was successfully receiving chemotherapy. I had associated kidney and heart problems, which although causing some concerns, were mostly under control. Over a period of only a few days, I went from functioning well, to developing a collection of symptoms that included some forgetfulness with a modicum of other symptoms such as dizziness and a few falls. I was admitted to the hospital, and over a few days went through a whole host of blood tests and imaging which did not reveal an explanation.

Various theories were developed to explain my symptoms including the effects of some of my regular medications for my prostate and diabetes. The physicians used the concept of “polypharmacy” to explain my possibly exaggerated response to them in terms of my mental function.  One of the first “scalpel” incisions was made into my being—by one of the first physicians who saw me. He used the terms “cognitive impairment and dementia” in his clinical note. As one physician after another saw me, they widened that first “incision” by referring to the initial note and carrying over the diagnostic terms referring to my mental status.

Without a diagnosis I was sent home only to be readmitted a week later for the same symptoms aggravated by some vomiting and a number of falls. It was during this second admission that I was referred to another physician who examined my mental status and concluded that I was cognitively impaired. Although, they could not explain it, they chose to stop or decreased some of my regular medications. On discharge, they used the same terms defining my mental state as cognitive impairment and mild dementia. This was all based on the cognitive testing usually used in screening for cognitive compromise under certain clinical circumstances. As a result, this finding was reported to the motor vehicle bureau.

I was discharged only to be readmitted with obstruction to my urinary tract due to prostate problems and a catheter was inserted. I was sent home with a plan to review my prostate status sometime in the future for consideration of possible surgery. I went home with the catheter and was quite miserable, depressed, and unengaged. I went for an ambulatory follow up appointment with the doctor who reported me to the motor vehicle bureau, and my mental status tests were repeated and were the same. I then saw the medical specialist who was treating my underlying malignancy, and it was decided that I was no longer a candidate for further chemotherapy and referred to the palliative care ambulatory team. In order to be assessed and treated as a palliative care patient at home, the specialist indicated that there was no more to do for me in the realm of active chemotherapy.

I went home, accepting my fate with the understanding that the doctor that did the mental status examination would not only report me to the ministry of transportation, which meant I could not drive and in one way or another the assessment would be reported to my boss at the place of my work, which all lead to “scalpel incision” number two.

I was referred to the community palliative care team, and as part of my assessment, the issue of assisted suicide was raised, which is otherwise known as MAID (Medical Assistance in Dying). For me, this was “scalpel cut” number 3. I declined for strong family reasons as I wanted to see my two children, who were still at university, complete their studies.

At home I basically took to my bed, anhedonic—even for my favorite bagel and cream cheese—and spent a good part of the day sleeping. I did not even enjoy music, which usually I love and could not read nor use my computer. I had problems with my indwelling catheter with burning and pain, until I finally suggested trying pyrridium—an older medication that I had used in my training days but was rejected by the doctors who were caring from me until one of them agreed. It had to be hand formulated at a local pharmacy and after a week it improved my symptoms.

My wife wrote my obituary with my assistance as we did not want a summary of my life’s activities and accomplishments—what I call the CV obituary. Many people came to visit from work, including previous students, colleagues, and neighbors. As I lay in bed, I dwelled on what I was likely to die from; assuming it would be my malignancy and an infection that would do me in.

I did some surfing on my smart phone and found that my symptoms and history fulfilled the construct of what is called “chemo brain,” and I discovered a couple of case reports describing it with the chemo drugs that I was taking, even though I had not received any for almost two months.

In the meanwhile, I was deeply depressed, and my thought processes slowed down. I could not read anything challenging nor use my lap-top or do my banking on-line. I just waited for the end.

After a number of weeks of awaiting my end with my wife in constant care mode and my children visiting as much as they could, I began to develop a modest appetite prompted by an invitation to meet with friends who were visiting and an offer of bagel, cream cheese, and lox—one of my favorites. I ate with enjoyment. Over the next week, my children began to notice an improvement in my communication, and I began to enjoy some of my favorite foods. Over that two-week period, I began to perk up, I could communicate better, and I slowly found that I could do some simple activities on my laptop.

Within a month I seemed to awake from my anhedonic depressive state, my appetite returned, and my interest in the world around me improved dramatically. My visitors noted it as did my wife and children.

I decided to see my oncologist for her opinion on my new state, and when I saw her, she was elated. I told her about my research into chemo-brain, and she admitted that she “missed the boat” and agreed to continue to follow me but doubted we would need to restart chemotherapy.

My mental status continued to improve as did all the other parameters of recovery. I applied to recover my driver’s license, which was successful, and I went to speak to my chief of medicine to whom I had submitted my retirement letter at the nadir of my symptoms. I was surprised to learn that it was not going to be that easy to come back to work even in a very modified way. He referred me for a comprehensive mental status examination even in the face of my clear improvement. The diagnostic label on my discharge summaries and the use of the terms cognitive impairment and dementia on my file appeared to be a barrier to my returning to work in any form—even with the proviso that I do not practice clinically. It was to coup de grace to my illness. Despite my clear recovery, there was something in my story that caused pause and opposition to allowing me back at work in one form or another. It was the final thrust of the scalpel—to quote Marcus Antonius in Shakespeare's Julius Caesar, it was the "most unkindest cut of all." The reports with the terms cognitive impairment and dementia remained in those reports even though the basis of them was erroneous. Without that combination of events, I likely could have returned to a role at work.

Dickinson’s poem hit home for me. The same potential for harm exists with the history and physical of clinical medicine as can occur with surgery, and the same care must be taken when words are used to describe the fate of the patient even though less dramatic than surgery. All of us that are not surgeons, but rather other practitioners, must never forget that the words we use can be as devastating as surgery.

Update: Since this article was first published, the issue appears to have been resolved. I have been asked to teach the medical residents still working despite the COVID lock-downs (via Zoom), as well as being involved in ethical dilemmas with the future to be determined after the pandemic resolves to the point that the facility re-opens to more normal function.

To Quote Shakespeare again, "All's well that ends well".  

Dr Gordon is a geriatrician and ethicist; formally medical director and head of geriatric medicine at the Baycrest Health Science Centre in Toronto. He trained in medicine at the University of St. Andrews in Scotland and in medical ethics at the University of Toronto. He has traveled and lectured widely and is a medical writer having published a number of books the most recent ones being Parenting your Parents: Straight talk about Aging in the Family—co-authored with Bart Mindzenthy.