By Jamie Von Roenn, MD. I have been reflecting on language. Both ASCO and the World Health Organization say palliative care is applicable early in the course of disease in combination with life-prolonging therapies. That fits with what my patients seem to want; to live as well as possible for as long as possible. Yet, as I practice breast oncology, my patients think the term “palliative care” means care near the end of life when no more chemotherapy is given—a synonym for hospice care. This seems to be the case even if it is euphemistically called supportive care or symptom-oriented care.
I wonder why we persist with an “either/or,” “win or lose,” “cure or care” model, which separates the disease continuum into a time for cancer treatment and a separate, later time for “comfort” care”? As I reflect, so much of what we do for patients, is, in fact, palliative care; we try to make bad things better and help patients live as well as possible with their cancer and its treatment. The efforts to relieve suffering and improve quality of life are integrated into our treatment regimens and our long-term follow-up of patients. These days, there isn’t an oncologist who wouldn’t prescribe platinum-based treatment without prescribing anti-emetics. What is survivorship care focused on? The prevention and treatment of disease and treatment-related symptoms are key goals.
Dr Schilsky, a former ASCO President, commented recently that “supportive care is never an ‘alternative’ [to anti-tumor therapy] because it should always be a component of every treatment program. The ‘alternative’ is to add evidence-based cancer-directed treatment to best supportive care.” Statements like this and the recent study published by Jennifer Temel, MD, and colleagues in the New England Journal of Medicine suggest that the time for oncology care to embrace the full integration of palliative care throughout the trajectory of cancer care has arrived. Dr. Temel’s study randomized patients with newly diagnosed metastatic lung cancer to receive standard oncology care or standard oncology care integrated with early palliative care. Patients randomized to the early palliative care arm reported better quality of life and less depression, were less likely to receive inappropriate end-of-life care and lived longer than patients who received standard oncology alone. At last, high-quality evidence that integration of palliative care early in the continuum of oncology care improves patient outcomes.
What are the barriers to an integrated model? Of course, there are financial, practical, and education barriers to overcome. The NEJM study provides a solid evidence base for moving forward, but I fear it’s not just a cognitive issue. The win/lose military model for cancer care as a fight to the death certainly doesn’t help; it’s a referendum on a person’s character: are you a fighter (or a loser)?
If we keep that metaphor, then we have to believe patients can always be fighters—but they can be fighting for comfort and quality of life at the same time they are fighting to live longer; they never are ‘losers.’ But, more importantly, I wonder if we struggle with the complexity of a blended model; it’s simpler to work in an either/or, black or white, on or off, dichotomous world. Yet, the best patient care comes from discerning what is right for this person in the context of his or her family. I find myself hoping that oncologists together, and ASCO, our Society, will embrace the science of comfort as much as they embrace the science of cancer. It seems to me that the best oncology practice of the future requires it.
Jamie H. Von Roenn, MD, FASCO, is Professor of Medicine at Northwestern University's Feinberg School of Medicine, member of the Robert H. Lurie Comprehensive Cancer Center of Northwestern University, and Medical Director of Northwestern Memorial Hospital's Home Hospice Program. Her professional interests include breast cancer and palliative care. She has served on the ASCO Board of Directors, and is a current member of ASCO's MCMC Working Group, Breast Cancer Consensus Panel, and Professional Development Committee.
Oct, 03 2010 11:00 PM
Couldn't agree more. At the UCSD Cancer Center, I find patients get this easily--its we doctors who persist in the 'either/or' mentality. When patients ask for something impossible, I use the Bob Arnold wish statement, "I wish that were possible". Then I focus on what we can do.
Charmaine J. Cummings, PhD
Nov, 30 2010 3:58 PM
Dr. Von Roenn:
The content of your blog is not only inspiring but quite poetic. I really like the phrase "science of comfort" you use at the end contrasting with the 'science of cancer/cure. Oncologists and other oncology care providers ( nurses in particular) practice both simultaneously. I agree with you whole-heartedly. Charmaine Cummings