How can I figure out when is the right time to stop actively treating the cancer?

Q: How can I figure out when is the right time to stop actively treating the cancer?

A: I don't know that I have ever met somebody with metastatic breast cancer who hasn't done incredible research, sought second and third opinions, consulted with others with the same diagnosis. Whether it's starting a clinical trial or taking a week off, these tend to be very thoughtful decisions. And that's also true when someone decides to stop treatment.

In this day and age, it is more difficult to stop treatment because you have more options now versus 20 years ago. There often is "one more thing we can try." But just because it's available doesn't mean you should do it, right? That is an important thing to remember, because any treatment can come with a variety of quality-of-life issues.

One of the things I encourage people to do early on when they meet their oncologist is to say: "I need to know that if you don't feel like treatment is working any longer, you're going to be able to have an honest conversation with me, and that whatever you would recommend for me at that time would be what you'd recommend for somebody you love." This might be a conversation that happens years before someone actually ends up stopping treatment.

Care goals have to be something you continuously check in with your healthcare team about. You also have to listen to your body. When the body is saying things like, "I'm getting sicker from this treatment, I'm not enjoying my life as much from this, I'm in more pain," you and your team have to evaluate whether it is the disease or the treatment. There are a lot of reasons why people keep treating, and I can respect a lot of those reasons, but generally why people stop treatment is because the benefit does not outweigh the burden any longer. They are sicker and despite everything they've tried, the disease continues to progress. They know that the decision to stop could cause a lot of pain and suffering for those they love, but that's not their intent.

You may need to turn off the noise around you and listen within. Find some time with your oncologist or trusted person to talk about this if your body tells you this isn't working any more, or you feel worse when you're on treatment. Everybody has his or her own definition of what quality living is. Some people are okay with just being sedentary on the couch, as long as there are people around. For others, if they can't be active and do the things they want to do, they are not interested in continuing that life.

If your healthcare team can't talk about these things, then you have to find a different team or somebody who can, because it really is their job to be able to discuss all that the person needs to consider. One of the stages of metastatic cancer is dying. When I teach medical students and fellows, I recommend that the phrase "There is nothing more we can do for you" go out the door and never come back. There is a lot more we can keep doing for you when you decide to stop cancer treatment. The plan then shifts to comfort care, whether that be hospice, palliative care, whatever you decide, but it's important that you don't think of stopping treatment as getting to the edge of the cliff and falling off. Stopping the cancer treatments is a part of care. It can be a time when many oncologists shine with their patients, in the end making sure all comfort measures are taken care of.

So when you make the decision, you're transitioning over to this other part of care. You're not falling off the cliff, you're just stepping onto another stone. That's so important because one of the reasons I think people have a hard time stopping treatment is they're worried they're going to be abandoned. It puts them into another unknown category, right? So again, when people say, "How do I know when it's time?" I say you have to be quiet enough, listen within.

But it's not a judgment call for me or anyone else to make. It's totally individual. But I do think it's really important that people, every 6 months or so, check in with themselves and their healthcare team when they are in treatment. Make sure you're making the right decision for you, and not making assumptions on behalf of your family or trying to protect them. Again, ask your oncologist or care team, "Would you recommend this treatment for someone you love?" Periodically you have to reevaluate care goals and quality of life and say, "I need to rely on you as my physician to tell me when you don't think medically this is in my best interest anymore."

When you stop treatment, it's important then to have a really aggressive care plan about how the psychological, the physical, and all the other issues that arise are going to be addressed. And that sometimes will help people before they stop treatment to have already had that discussion. But I think for most people they know. They just know when it's time.

— Kelly Grosklags, L.I.C.S.W., B.C.D.

For nearly 25 years, Kelly Grosklags has dedicated her practice to minimizing suffering through her work in oncology, palliative care and hospice. An experienced therapist, Kelly is a licensed clinical social worker and a board-certified diplomat in clinical social work. She also earned a fellowship in grief counseling from the American Academy of Health Care Professionals. Kelly speaks frequently about end-of-life issues, including care, grief and loss, both in person and on her website, Conversations With Kelly.