On Cancer and Maximum Good Days
The most important conversation for patients with advanced cancer
This essay is based on my experience as a cancer physician and is specifically for patients and their families who are dealing with advanced cancer. “Advanced cancer” in this context means cancer that has spread outside the area where it started, also called “metastatic” cancer. It is an important distinction, because it defines one of the biggest decisions regarding cancer treatment: curative versus palliative intent.
When oncologists talk about “curative intent,” we are referring to the goal of treatment. Specifically, can some combination of surgery, radiation and chemotherapy completely eradicate the cancer? (We say “intent” because, despite the best efforts and aggressive therapy, cancer still sometimes comes back.) If there is a chance to prevent the cancer from ever relapsing, that’s when treatment plans are the most aggressive. We ask patients to risk more intense side effects, based on the possibility of a long remission and good quality of life after recovery.
But there are times, either because the cancer has relapsed, or because it was metastatic from the time it was diagnosed, when the goal is not to cure the cancer. We still treat it, but we don’t consider cure to be a realistic option. This sounds pessimistic, and it is a common point of misconception. I think it needs an explanation. It is fundamental to how you approach your cancer care.
Once a cancer is advanced, it is unusual to be able to ever completely eradicate it. This was learned the hard way decades ago, when patients would sometimes undergo very aggressive surgeries for metastatic cancer, only to have it return, sometimes before they were even recovered. They went through all of the pain of surgery but got no benefit. For all of the time and effort, they probably lost what could have been “good days” just getting over the effects of treatment. This brings me to how we approach advanced cancer, with “palliative intent.”
Palliative intent doesn’t mean that there can’t be aggressive treatment, nor that the cancer won’t shrink or even go to remission, but it recognizes that the treatment timeline has changed from a single period of intense treatment (curative intent) to the long-term management of a chronic disease. Even when advanced cancer goes into remission, it tends to come back once treatment stops. We may recommend periods of treatment and breaks that extend over years and through multiple different types of medication. It’s no longer an intense sprint to the end of chemo, but a proverbial marathon. The goals must adjust.
I like to frame the goal as “maximum good days.” In this way of looking at it, I treat every day a patient spends getting chemo or recovering from its side effects as a bad day, or at least not as a good one. For a treatment to be worthwhile, it needs to add more good days by controlling cancer than the number of bad days it creates in the form of time in the doctor’s office or side effects. Put another way, In order to continue, treatment must meet two goals: the cancer is not growing and the side effects of the treatment are tolerable.
“Wait, I thought the goal was to get rid of the cancer?”
This is certainly the best case, and it is appropriate to wish for a better than average outcome. But hope is different from a goal. We know the natural history of cancer is that, untreated, it will grow, so not growing is still a success. The analogy I like is to think of making cancer a chronic disease, like HIV. We would love to be able to cure it, but if treatment can make it so you live with your disease and tolerate the treatment, that’s still a big victory.
This is why the second goal is so important: tolerable side effects. It does little good to add days of life, if those days are all spent getting chemo or seeing the doctor. Or if the side effects are so debilitating that quality of life is greatly diminished. Again, any treatment must be judged by how likely it is to buy you “good days.”
Your doctor may be very conscientious about discussing with you, but I have found that to be the exception. The diagnosis of metastatic cancer is devastating, and it is emotionally easier on both the patient and the provider to talk about the possible benefits of treatment, of tumors shrinking, and of remission, no matter if it’s the rare exception. Talking about the end of life is hard, and hard conversations often get put off. Both doctor and patient can view this entire discussion as defeatist. It’s so much easier to talk about how the next treatment might still work than it is to have an honest talk about whether it will meet that goal.
Will it give you more good days?
If your goal the whole time has been a smaller tumor, it almost always makes sense to keep trying one more cycle, one more type of therapy. There may be a chance, no matter how small, that the goal will be achieved. If you opt to stop treatment, that chance drops to zero.
But if the goal is good days, the options are broader.
Good days can mean a treatment holiday or dose reduction. Good days can mean we skip a dose for you to go to an important life event. Good days mean that the side effects you experience are not something to be minimized in your conversation with your care team, but instead are the most important part of each visit. Good days are subjective, and helping you get them is the only real point of having an oncologist.
Understanding the goal of treatment helps you ask the right questions.
“Am I likely to have more side effects than average?”
“Taking into account all of my previous treatment, what are the chances the tumor will stay stable or shrink?”
“Do patients live any longer when they take this therapy?”
Most important: “Am I healthy enough for this to benefit me?”
It is a little-known fact that the research used to show cancer medicines work uses “healthy cancer patients” to prove the benefit. “Healthy cancer patients” may bring to mind the old George Carlin monologue about “jumbo shrimp” and “military intelligence.” What it means is that the research is conducted using patients with cancer and very little else wrong with them. The term used in medicine is that the research subjects “good performance status.”
Performance status is a simple assessment of how you are doing day to day. It ranges from “no problems” to “bedbound,” but it has one important dividing line. If you need to rest more than half the day, either in bed or in a chair, then you have a performance status too poor to have participated in the research. This means that, for the sicker patients, we have no proof that the treatment is either safe or effective.
I will restate that for emphasis. If you are sick enough that you need to rest in a bed or chair more than half of the day, more cancer treatment is just as likely to hurt you as it is to help.
Admitting that you have reached the point of resting most of the day is hard, but denying it, and opting for more chemo, is more likely to take away good days than it is to add to them.
Which brings me to my final point.
Hospice.
Hospice is not the end, or a defeat. Hospice is a very important tool for maximizing good days. Hospice is associated with dying in large part because it is brought into the conversation so late, often when death is imminent. That is a poor use of this tool.
Hospice will produce more good days, and often more actual days alive, than one-round-too-many of chemotherapy. It needs to be in the discussion early, and a transition from chemotherapy to hospice should be viewed as using the best tool available to achieve the goal of good days.
This conversation ideally needs to happen at the beginning of treatment, but I find it gets put off because it seems like a discussion of dying. And it is. But it’s also a discussion about living. About goals and dreams, and which ones will get realized and which might not. It is a conversation between the patient and the doctor, and ideally between patient and family as well.
I have said, only half in jest, that an intelligent high school student with internet access could design your chemotherapy program. A lot of it isn’t much different than using a recipe. It is in the complex interplay of rapport, data, experience, and humanism that the art of oncology happens. The conversation about the goal of care is the most important one you can have, but it often never happens. I hope this essay helps you get it going.
To maximum good days.
Cheers, y’all.
Thanks for this excellent presentation. It's tragic that so many of the patients and their families who would benefit most from the hospice conversation, are inclined to shut it down as quickly a possible.
This is a wonderful read. I had my residents, med students, and fellows read this today. You captured what I have been doing in my palliative care practice for years. I really wish there were more Oncologists like you out there. I've used this to discuss many of the interventions we provide like dialysis in this way as well. Thank you (been following you on twitter for some time as well and appreciate your voice)