I am more optimistic than I have ever been during my 40-year career as an oncologist in helping people survive cancer. We have made a lot of progress.
However, I talk weekly with patients who face decisions around stopping anti-cancer treatments because they are no longer effective. Ideally, this becomes a discussion in which everyone — medical team, patient, family members — should be on the same page. Of course, the patient is the most important person. The patient drives the story and what to do.
I believe in everyone getting together for this discussion so there are no mixed messages and everyone hears what everyone else has to say. People also should have their advance health care directives, such as a healthcare proxy, in order.
When I know right away that someone’s cancer is not going to be curable, I talk with the individual earlier rather than later about the limits of chemotherapy. My intention is to give patients a pretty good sense of what might happen over the next few years.
The goals of chemotherapy are generally to change the natural history of the disease, but every cancer treatment has some degree of toxicity. Cancer doctors spend a lot of time in training to learn how to balance the extent that a treatment is likely to help or hurt.
We encourage patients in the Baystate Regional Cancer Program to be active in asking questions, such as, “How is this cancer treatment going to help me or could it result in more harm than benefit?”
Such discussions should occur periodically. Patients need to hear about expectations of each successive treatment if they are in the throes of a non-curable disease.
I tell people that if they get to a point where chemotherapy won’t help, I will let them know. I don’t believe in continuing chemotherapy just because someone wants it. Although it can be a difficult conversation, I would tell a patient it is time to stop chemo if the individual’s cancer has progressed and the treatment isn’t doing its job. I would then focus on end-of-life planning with the person.
Children may have trouble letting go of a parent; spouses may struggle with decision-making as well.
Many patients are very sensitive to how well their body is doing, and often show great insight into the natural history of things. I try to help them understand their cancer’s expected progression. I may ask them what they were doing six months or a year ago and compare that to now. This can help them assess the trajectory of their disease.
Support for patients with cancer goes way beyond physicians. We have numerous cancer clinical trials at Baystate with a strong research staff, and always encourage study participation when appropriate. We also have a supportive care outpatient clinic where individuals undergoing a number of months of difficult curative therapies, such as for head and neck cancers, get excellent symptom management care.
Ending anti-cancer treatments for a patient altogether is not about stopping care. In this country, people often equate stopping treatment with “giving up.” In fact, for some patients, cessation of chemotherapy can lead to a better quality of life.
You have to be smart about when to use and when not to use chemotherapy. I will sometimes ask patients why they are getting chemotherapy and they will say, “I am doing it for my family.” I tell them they should do it for themselves, and if they don’t want to take chemo, they shouldn’t. Their families will understand. There can be relief in this for people who can see treatment is no longer working well.
When I was doing my medical oncology fellowship at the University of Vermont back in the 1970s, I worked with some of the nurses who helped define hospice care in this country. Entering hospice care, which focuses on the patient’s comfort, requires the patient to emotionally and intellectually cross a bridge from anti-cancer treatment to a setting of maximizing quality of life. Hospice care most often takes place in the home, which allows for interaction with family and other loved ones, and includes pain control, as well as an emphasis on emotional and spiritual goals.
Dr. James A. Stewart is chief of the Hematology-Oncology Division, Baystate Regional Cancer Program. Cancer Questions is a monthly column written by health professionals from Baystate.