I had taken care of her for years. We had faced a new diagnosis, the toxicities of adjuvant treatment, the promises of having no evidence of disease (NED as my friend, Molly refers to it), only to have it shattered with the first recurrence. Over the next three years, she had undergone treatment—chemotherapy, a trial of endocrine therapy, more chemotherapy, each punctuated by brief respites so she could “feel what it’s like not to be sick all of the time.” Recently, we opted to proceed with experimental therapies. I referred her to our phase I group and she had enrolled in a phase I trial.
After a few months on trial, she came back in to see me. I did my best to hide my shock on seeing her again; she looked so different. Her face was thinner—her temples were devoid of muscle and fat (“temporal wasting,” we call it). She was recovering from mouth sores and had swelling in her legs despite her apparent and impressive weight loss.
However, this was no social visit. She had been sent back to see me because that promising treatment had ceased to keep to its promise. She had evidence of disease progression once more.
We exchanged hugs, talked about our families, and laughed a little—more like friends gathering over coffee than doctor with patient. At some point, she looked at me, and asked, “So, what do you think?”
As an oncologist, I am aware of the reputation we have in popular culture. To the public, oncologists are often viewed as pushers of toxic treatments, never knowing when to stop, always treating up until the patient breathes her last breath. Indeed, this view of the oncologist was recently displayed in a New York Times opinion piece1—“When It’s the Doctor Who Can’t Let Go”—where despite the “obvious,” the oncologist’s reaction to the family’s wishes to discontinue cancer-directed treatment was described thusly:
“Hearing this, his oncologist, standing beside me at the nurse’s station, cried, heartbroken that her patient of so many years would not rally one more time.”
I do think this public perception of over-prolonging treatment is backed up by data. In a recent review, almost 40% of patients received chemotherapy in the last month of life.2 It is likely much higher if one considered the proportion of patients treated in the last six months.
I am quite cognizant of these perceptions and am aware of the data. Despite this, I will frequently agonize in private over the right advice to give—even before I enter that patient’s room. I do not think I am alone in recognizing that this situation is perhaps one of the most difficult for a practicing clinician, especially when it involves someone you have known over a span of years. However, it is a disservice to oncologists to accept the view that we are personally invested in our patients continuation of treatment; that we “want” them to rally. In a way, I think that is too easy a conclusion.
When I sit with someone who might be nearing the end of life, I grapple with so much uncertainty that it makes me anxious. I am not divine and cannot predict with any degree of certainty how much time one might have left. I cannot guarantee that a treatment will or will not work, even for the patient treated with multiple lines of therapy. I have seen the exceptional responders and continue to care for some of them, mostly by thinking “outside of the box.”
More importantly, though, it is important to know that I (and I believe many of my colleagues) always rely on the past—I rely on what I know of my patient, her wishes, goals, and desires; what she deems important, what she is willing to live with, and what will make life not worth living. At the end of the day, not all patients want to stop treatment, some want (or maybe “need” if it’s not too strong a word) to continue treatment until their last breath. To me, there is no right or wrong in such a decision—we all should decide how we will spend our last months.
So what did I say to my patient - my friend- at this critical juncture in her own cancer journey? “Well, let’s think about that.”
1. Brown T. “When It’s the Doctor Who Can’t Let Go.” New York Times. 2014 September 6.
2. Langton JM, Blanch B, Drew AK, et al. Palliat Med. 2014 May 27.
Oct, 01 2014 12:15 PM
Well stated. This simply highlights why honest and open communication between doctors and patients (and their families) is so important.
Don S. Dizon, MD, FACP
Oct, 02 2014 9:32 AM
Dear Terry: Thank you so much for your kind comment. I appreciate it greatly, and welcome to ASCO Connection! DSD
James Randolph Hillard, MD
Oct, 06 2014 11:22 AM
In December 2010, I was diagnosed with Stage 4, metastatic intestinal type adenocarcinoma of the stomach. Although not an oncologist, I am a physician; so I knew what that meant. Fortunately, my tumor over expressed the HER-2 antigen, and Trastuzumab had been approved for metastatic stomach cancer earlier that Fall.
During one of my cycles through "denial, anger, bargaining, depression, acceptance", I decided that if I was not a hospice patient in a year, I would be a hospice doctor, which I have been doing now since 2012. I also became administrator for a stomach cancer group on Facebook, which had 50 members at that time and which has 1300 now and is continuing to add 5 or 10 new members a day.
Since I have been a part of both the "hospice community" and the "cancer survivor community", I have noticed the contradiction between them. The survivor community's motto could be summarized as "Never give up, never give up, never give up," while the hospice community motto could be summarized as "Know when it is time to 'give up' on active treatment and focus on palliative care."
Although a lot of posts on the Facebook group are about asking for and giving "support," a lot of them relate to questions like these and to trying to figure out what the doctor meant by the advise he/she gave. I think that in all specialties we need to pay more attention to these online patient groups, both because 1) they are a significant source of information for patients and 2) because their content points out ways in which patients are not getting the messages we are sending out.
Cancer.net really is a great resource, but it would be more useful if it had some patient focused discussion groups to help get our important, and often confusing, messages out.
Don S. Dizon, MD, FACP
Oct, 06 2014 5:45 PM
Dear Dr. Hillard,
I agree with your sentiments regarding online communities. I have frequently participated in #bcsm (breastcancersocialmedia) on Twitter as well as other groups, and I often come away with a deeper understanding of the lived experience of cancer- not by those of us who treat it, but by those who live it day in and day out, and their loved ones.
I also share your desire for more clarity into the worlds of survivorship and palliative care; often the issues are common to both realms (sexuality and intimacy, for example). I am a fan of calling things as they are, and trying to find a lexicon that can be universally understood. I have started using "supportive care" when discussing things with my patient, as a way to introduce consultations to Palliative Care services, Psycho-Oncology, and even to Physical Medicine and Rehabilitation.
Sometimes language can be a barrier- and to overcome them takes thinking outside of the box and listening to the very people we aim to help.
Welcome to ASCO Connection- your voice is important, as is the work you continue to do.
Oct, 07 2014 1:04 PM
Dear Dr. Hillard,
Thank you so much for sharing your personal experiences and for mentioning Cancer.Net as a useful resource for patients. We agree that clear, two-way communication is especially important when it comes to cancer. One of our goals is to make Cancer.Net more interactive both through the launch of the new Cancer.Net Blog and through our social media channels. We hope that by writing guest posts, commenting on current blog posts, and interacting with us through Facebook and Twitter patients can start to share their stories, and we can begin to identify those areas of confusion that you mentioned.
We are always looking for new guest posters, so if you are interested in becoming a contributor, please contact me at firstname.lastname@example.org.
Medical Writing Specialist, Cancer.Net