Palliative Care: A Balm to the Soul and Body

By Michael Gordon, MD, MSc, FRCPC

“Michael, you look great!” were the words out of the mouth from my dear friend from Israel who came over to see me after hearing that I was very ill and receiving palliative care. My e-mail address had been changed when I resigned from my staff position and the “bounce back that had my new email address was not working.”  So, my colleague from work told him that I was ill and receiving community palliative care.

At the time my friend saw me, I had gone through a few months of receiving palliative care associated with a propensity to fall and diminished balance and low blood pressure for which an obvious cause was not evident. This decision was made as a result of my hematologist and geriatrician’s opinion that there was not more active treatment suitable for my underlying multiple myeloma and what was diagnosed as cognitive impairment. When my hematologist told me that, although my “numbers” were good, she decided that there was not much more to do, and she recommended that I enter the community-based palliative care program. At that time, where my then state of mind was far from clear, I agreed to the program.

The palliative program physician was one that I knew from his student days and subsequent experience when he worked with me at the hospital where I was for a period as chief of staff. I knew him well and trusted him. He did a very thorough examination that included discussing with me and my wife the option of medical assistance in dying (MAID), which I and my wife had discussed and ultimately rejected because of my devotion to my family. It was only later when I recovered from my cognitively compromised state that I questioned why the topic was discussed while I was designated as cognitively impaired when a criterion for MAID was lack of any cognitive impairment from any cause, much less from one in which the etiology was not apparent.

For the next month or so after my palliative care assessment, I had adjustments made to my medications for my other conditions with the goal of providing primarily comfort care. I was quite depressed and tired, and I spent most of my days in bed resting with little appetite. By this time, I had an indwelling urinary catheter because of problems with urination, and that caused me great discomfort. That actually became the focus of care with a range of interventions tried with no avail until I suggested an old drug, pyrridium, which only a few pharmacies compounded and with time it did the trick. What I found interesting was that few of the doctors involved with my care knew of this drug or characterized it as “old fashioned,” but despite their hesitation, I used it and within a week my irritating symptoms were under control.

 I spent most of my time in my bed or on my sofa in our sunroom where I enjoyed the light coming through its windows and watched the comings and goings of our colony of feral cats that my wife fed. The cats occupied our backyard and deck. I could not read and was not able to navigate my computer which had its operating system changed to Windows 10 from Windows 7. My daughter who took time off from her PhD program in the States, had to take on my online banking and other complex digital undertakings. I was in essence, waiting to die. I received home visits twice weekly from a nurse as part of my palliative care interventions and we arranged for home help from two lovely personal support workers (PSW)—both of whom had been nurses in their home countries and were doing this work while they studied and prepared for their return to their professional status. Each PSW was lovely and over-qualified for what they were expected to do. Because of my propensity to falls and frequent dizziness, my wife who was still working, felt more comfortable with my not being alone, even though I also had a life-line alarm in the event of a fall from which I could not right myself.      

Gradually for no identifiable reason, I began to improve with the first stages being an improvement in my mood and cognition, my speech pattern, and need to sleep as much. My children were the first who noted my improved communication skills. Then as people who had visited me noted that I looked and sounded better. I became able to utilize my laptop and even began to master my new computer program and do my own online banking. Although I had forgotten my ATM password, one early morning I suddenly remembered it and when I tried it, and the screen flashed my success. My children and wife were amazed as I began to recover my facilities and the palliative care nurses and doctor were happily surprised at my improvement. On one occasion when my catheter was to be changed, I asked the nurse if before replacing it she could leave it out for a while and see what happened. We concurred with the palliative care physician who agree to the trial, and it worked. So now in addition to the other improvements, I was without the catheter and drainage bag. We then felt that instead of 4 days of PSW assistant, two days would be all that was necessary, and after a few more weeks of remarkable improvement, we decided that I was safe enough to be at home alone, which is the state at which I am at presently.

My experience as a patient under the care of a community palliative care program has taught me a great deal. First of all, the term itself often leads to a great deal of anxiety. For many people, including physicians and other health care providers, it is associated or misinterpreted as a meaning that the person is in the dying stages of their illness. That often results in referring patients for palliative care when indeed they are in the final stages of their illness without the preparation of the trajectory of dying and health intervention choices that should be the essence of the palliative care. The term is believed by many palliative care physician and non-physician proponents to reflect a philosophy of care and its associated decision-making and communication, rather than a diagnosis, which it often seems to be used as.

Many experts in the field are now proposing that palliative care should be used to help individuals for whom active medical intervention is not likely to achieve the kind of goals that they may look for in order to continue with such treatments. In my case, the decision and estimation that my hematologist made was after I had three hospital admissions for what was called cognitive impairment rather than “chemo brain” which it was and renal insufficiency due to an enlarged prostate with symptoms of low blood pressure, dizziness and recurrent falls. At the time during which my judgement was not sound, it seemed to make sense and the thought of my dying did not seem so frightening but rather sad as I am very devoted to my family and yearn and get great joy as I watch them finish their studies and watch my grandchildren evolve in their lives.

What I did receive was devoted care by the palliative care team with interventions to relieve discomfort and cessation of medications that might be aggravating symptoms such as my low blood pressure and tendency to fall. The nurses and doctors were focused on my comfort and wishes and were very supportive of my children who initially believed the end was in sight and were prepared to put their lives on hold to which I dissented and was able to convince them that I was in good care and was being made as comfortable as one could hope for.

As it turned out, my symptoms gradually resolved, probably due to the slow elimination of the chemotherapy drugs as my kidney function began to improve. The urinary catheter was removed which provided me with enormous improvement on my quality of life. Most important the mental fog that was plaguing me lifted and this was noticed all my loved ones and the many friends and students and young doctors who had been with me during their training. Moreover, I was able to once again use my computer, read and retain literature and eating regularly with enjoyment. My dizziness and falls abated, and I was able to navigate without the walker other than when going outside in inclement weather.

I have learned a lot from my experience with being a patient in the ambulatory palliative care program. I will do my best to educate those for whom I or my colleagues feel it is worthwhile and remove and black cloud that the term is often associated with so that individuals for whom it appears the correct path to pursue will look to it with a positive view rather than a sentence of doom.

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.