It was my last week after thirty years of caring for women with gynecologic cancer. I spent the last month with a series of farewell visits, saying goodbye to patients who had survived, some for sometimes over 25 years. It was a good month.
The call came on Tuesday of my last week. A long-time patient was enrolled in a clinical trial at another institution. Murray, her husband, called to say Arlene had been taken off the trial. He told the doctor that Arlene was having pain and was not eating well. They attributed this to the trial drug. Murray asked for advice. They felt trapped between care with the physician who ran the trial and me, their physician for the past four years. Murray and Arlene wanted to return to my care and made an appointment for the next day. At that appointment, it was clear that Arlene’s symptoms were from the progression of the cancer—not side effects of the trial drug.
I treated many long-term survivors of ovarian cancer but few who have had recurrences have long-term survival. Most patients eventually recognize that treatment will prolong survival but not offer a cure. Some patients, despite many discussions, have difficulty getting to that place. Each of these discussions is part of our job, but they are taxing for the clinician. I may have reached my limits emotionally on these talks. It could be one of the reasons I retired early. However, it is important to be honest and realistic. Occasionally, patients feel you are being a defeatist. Some go to places that promise to “go all out to cure the cancer.” I always suggest going for other opinions but resist patients going to places that do not have clinical trials or outcome data.
I always tried to make home visits to my patients on hospice care. One vivid memory was Marianne. After three and a half years of treatment, Marianne had agreed to go home with hospice care. I called Marianne’s house to see if a home visit would be appropriate. Her husband said yes. When I arrived, I saw that Marianne was bedridden and on a morphine pump for pain relief. We talked, and Marianne expressed her relief to be home. She was at peace with her decision to die at home. At this point, her husband appeared with a martini for me. He knew I enjoyed this drink and had gone out to buy gin. I toasted Marianne, and we tapped a martini glass to her morphine pump. It is a distinct and emotional memory for me. I had gotten the message to this family and patient that we continued to care for her through diagnosis, treatment, and, finally, end of life. I was proud to have helped her and her family. I was very sad at her passing.
The last in-person conversation with Arlene was my next-to-last day. I discussed her current condition and prognosis. I explained that treatment would not afford any reasonable opportunity for improvement and would cause side effects. I explained that, at this point, quality of life would be improved by supportive care. Most likely, quantity of life would also be improved with best supportive cares. In fact, many studies have shown that hospice care can lengthen survival in these situations. Unfortunately, most patients spend little time in hospice and sometimes continue to receive chemotherapy up until a week before they expire.
I had this talk, and I saw Murray tearing up. He understood that her symptoms were not from the experimental therapy but instead due to advancing cancer. Arlene, however, asked, “but what about my nutrition?” It again hit me how a cancer patient perceived this news. Some never come to accept that dying is a part of life or have great difficulty in getting to that place. Arlene was just not there despite many talks before this last visit. I felt that I had failed. It disturbs me to this day.
Discussion with Arlene and Murray though the next day (my last) eventually brought her to the realization of her situation. The hospice team came, and she went home. Her daughter came from Florida and helped Murray. I retired, but I still called to give my support. After several weeks, Arlene expired peacefully at home with her family. However, the words “but what about my nutrition” remain in my mind. I understand how important life is and how difficult it is to realize that it is ending. Medical care is not only for patients but for the family that survives. I hope that, during my career, I understood that. I am unsure that I did when I was young. That is the difficult part of the profession.
If some young oncologists read this and benefit from my experience, I would be grateful. I do not think I was “burnt out” for caring for patients. I loved the opportunity to treat and care for women with gynecologic cancer.
Charles Dunton, MD, is a gynecologic oncologist.