Monday, August 1, 2016
By Rebecca Gagne Henderson
I was inspired to write this after reading the series of posts on Pallimed titled “Against Euphemisms” by Drew Rosielle. At its very best, the term “Palliative Chemotherapy” is an oxymoron. At its worst, it is a treatment that robs the patient and family of quality of life and valuable time may have been spent doing the things that are important to them.
As a palliative consultant on a campus which does not house a cancer center my referrals typically come from hospitalist attending physicians rather than oncologists. I cannot begin to tell you the number of conversations I have had through the years with patients who had incurable cancer who thought their chemotherapy was for curative purposes. Rather than calling the cancer incurable or terminal the oncologist had told them their cancer was “treatable.” Ah, yet another euphemism.
Let me tell of a patient who resembles many of my patients. I once had a stage IV cancer patient with carcinomatosis and temporal wasting with severe symptoms of anxiety and pain who had made the decision to go to a hospice by the ocean to watch the ships go by during her last days to weeks. An oncologist came in to consult and explained to the patient and me that with “palliative chemotherapy” she may live as long as two years. This patient opted for chemotherapy and died three weeks later writhing in pain without ever leaving the hospital and without the benefit of specialty hospice care. When we left the room after the initial consultation, as the cheeky APRN that I am, I told the oncologist there was no such thing as “palliative chemotherapy.” The oncologist harrumphed and assured me that there was such a thing. I asked about the side effects of the chemotherapy she was proposing. He told me the common side effects were nausea, fatigue and hair loss. I explained that we don’t typically consider these palliative outcomes.
In the last few years I have witnessed an upsurge in the term “palliative chemotherapy.” I have even heard an oncologist use the term “palliative mastectomy” to describe a mastectomy for a draining fungating breast tumor that could have been managed with good wound care. Just imagine the pain, expense, suffering and disfigurement this intervention caused this woman, especially when three weeks later a similar fungating wound would appear on her breast-less chest wall. This is not palliative care.
This causes me to reflect on what the word “palliative” represents--what is the focus of our specialty of palliative care? I will not bore you with my palliative philosophy as I know that those of you who are reading this understand it deeply. I will say that I did do a literature review looking for articles with the term “palliative chemotherapy” in their abstracts or titles. The earliest articles I found were from the 1950’s (Morel, 1950, Morel, 1952, Josserand, 1953). I would have loved to have read them, but there were no abstracts available and I suspect they were in French. As early as the 1980’s there were rumblings of the side effects and decreased quality of life when “palliative chemotherapy” was initiated, but this was not the focus of those studies (Morton, 1984, Presant, 1984, Queisser, 1984). The focus was on remissions and survival times. There is very little and early work being published regarding the harm caused by “palliative chemotherapy” (Priggerson, 2015, Mack, 2015).
I take umbrage at the usurping of the word “palliative.” To my oncologist colleagues, I ask that you go back to saying “treatable.” or preferably “incurable.” Of course, the knee jerk response to this may be “but we don’t want to take away hope.” As providers, our job is not to provide hope for those who we cannot cure, but rather to help them reframe hope and learn what is important to our patients as they prepare to leave this sweet, yet mortal coil.
I do wish our patient had the opportunity to spend her last days on the Long Island Sound watching the sailboats go by with her loved ones as she said she wanted. She didn’t even have the time to lose her hair.
JOSSERAND, A. A. 1953. [Pathogenesis of Pierre Marie's pulmonary hypertrophic osteoarthropathy from the evolution of two extra-pulmonary epitheliomas treated with palliative chemotherapy]. Lyon médical : Gazette médicale et Journal de médecine réunis, 189, 30-32.
MACK, J. W. J. 2015. Patient beliefs that chemotherapy may be curative and care received at the end of life among patients with metastatic lung and colorectal cancer. Cancer, 121, 1891-1897.
MOREL, A. A. 1950. [Perfection of a method of palliative chemotherapy of certain epithelial cancers]. Lyon médical : Gazette médicale et Journal de médecine réunis, 183, 3-6.
MOREL, A. A. 1952. [Anti-edema therapy associated with cellulicidal palliative chemotherapy of epithelial cancers]. La Presse médicale, 60, 490-492.
MORTON, R. P. R. 1984. Cytotoxic chemotherapy for patients with terminal squamous carcinoma--does it influence survival? Clinical otolaryngology and allied sciences, 9, 175-180.
PRESANT, C. A. C. 1984. Prospective randomized reappraisal of 5-fluorouracil in metastatic colorectal carcinoma. A comparative trial with 6-thioguanine. Cancer, 53, 2610-2614.
PRIGGERSON, H. G. 2015. Chemotherapy Use, Performance Status, and Quality of Life at the End of Life [Online]. Available: http://oncology.jamanetwork.com/article.aspx?articleid=2398177 [Accessed 6 1].
QUEISSER, W. W. 1984. Chemotherapy for the treatment of cancer pain. Recent results in cancer research, 89, 171-177.
photos via unspash.com
woman Zack Minor
birds WestBoundary Photography chris gill
sailboat by Andreas Rønningen