Deciding When You Should Stop Cancer Treatment

Hospice Nurse visiting an elderly patient

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Far too often with cancer, people reach a point where they need to decide whether to pursue yet another treatment or instead opt for comfort care only. This is a heartwrenching decision that requires some careful thought.

Unlike in the past when people simply ran out of options for treatment, the decision to forego yet another treatment often falls on the person with cancer and her loved ones. This is a good sign as far as progress in cancer treatment is concerned, but extremely difficult for individual people facing cancer.

What do you need to know when it comes to making your decision, and what things should you consider before saying yes or no to further treatments?

Making the Decision to Stop Cancer Treatment

Years ago we didn't have much to offer people with advanced stages of cancer; if a tumor couldn't be removed surgically there were few options. Thankfully we live in a time when treatments such as chemotherapy are available that can extend life or improve symptoms for some people with metastatic cancer. Yet with options comes another dilemma. When should you stop treatment? When have you reached a point at which your quality of life may be better without treatment?

Before going on it's important to note a common misconception about treatment results with stage 4 cancer. (This refers to solid tumors such as lung cancer and breast cancer, not blood-related cancers such as leukemia and lymphomas.) When chemotherapy is given to people with stage 4 cancer the intent is usually palliative. The treatment may extend life by a few weeks or months and may improve symptoms related to the growth of cancer, but it's not given with an intent to cure cancer. One study found that 69 percent of people with stage 4 lung cancer and 81 percent of people with stage 4 colon cancer didn’t understand that chemotherapy was not at all likely to cure their cancer.

Making the decision to stop active cancer treatment can be very painful emotionally. As such, it is likely to be the time in your life when you need the support of your loved ones the most. That said, your family and friends are also experiencing grief which can lend itself to short tempers. In addition, your family and friends may have different opinions or beliefs than you do, which can result in conflict both between you and your loved ones and between your family members and friends. What are some things to consider as you make this heart-wrenching decision?

It's Your Decision 

Your friends and family may offer their thoughts, but ultimately it is your decision on whether or not to continue treatment Emotions can run deep if your desires are in conflict with those of your loved ones. You may need to gently remind your family members that you are aware that the decision you are making is not the one they would make—and that's okay. If you are true to yourself, your loved ones will likely support you in time. Reviewing options and thinking about risks vs benefits (see below) may provide "evidence" that will not only make you more comfortable in your decision but also help your loved ones understand the thoughts behind your decision.

Stopping Treatment Does Not Mean You Are Giving up

Far too often people with advanced cancer—and sometimes their family members—view discontinuing treatment as "giving up." Just looking at a few obituaries drives this point home. People are praised for "fighting a courageous battle with cancer." Choosing to stop active treatment for your cancer does not mean that you are giving up. Rather, it is an active choice to live your last days in the way you wish to live them.

Stopping Cancer Treatment Doesn’t Mean Stopping All Treatments

Deciding to stop active treatments for your cancer does not mean you will need to stop all treatments. In fact, switching the focus of treatment towards managing symptoms places a higher priority on making you as comfortable as possible.

Stepping Into Each Other’s Shoes as a Family

We often hear of family members who are upset that a loved one has chosen not to pursue any further cancer treatments. It’s important for loved ones to understand that what they would do themselves may be miles apart from what their loved one wants and desires. Just as we have opinions regarding our favorite colors or sports teams, everyone will have a different opinion on when it is time to stop active treatments.

Assuming that you have enough information to make an educated decision (for example being aware of all possible options for your care) it's important that your loved ones respect your decision.

If your loved one is uncomfortable, let her know that you respect her ideas. It may help to have her take a moment and try to step into your shoes. Yet this can be difficult. We often change our opinions on what we would do in a situation when we are actually the one experiencing it. Your loved ones may also be experiencing anticipatory grief, and subconsciously view anything that may keep you alive as a way to delay the grief of loss.

Reviewing Options

Taking the time to review all possible options for care may help you feel more comfortable in making your decision about further treatment. Even if you feel strongly that stopping treatment is the right choice for you, understanding options may help you explain your choice to loved ones who differ in their opinion.

You may start by asking your oncologist to list all possible options for your care, including those that may only be offered at another cancer center or in a different state. You may also wish to research clinical trials that may be available for your situation. There are a few databases that list clinical trials around the world, as well as matching services in which a nurse navigator can help match any available trials with your particular situation.

Weighing Benefits vs. Side Effects of Treatment

An often neglected, but critically important step is to weigh the benefits you may receive from treatment against the side effects. It's important that you have your oncologist carefully spell out what she believes the benefits of treatment would be for you, both in terms of lengthening survival and in controlling your symptoms. These benefits can then be weighed against the possible side effects of the particular treatment.

As noted earlier, the majority of people with stage 4 lung and colon cancer were unaware that chemotherapy wasn't at all likely to cure their cancer. Interestingly, the physicians that patients said were the best at communicating were also the ones who had not explained as well that chemotherapy was not being given in an attempt to cure the disease. It may help to sit down with your loved ones and your health care team and write out a list of pros and cons.

Examine and Nurture Your Spiritual Beliefs

It can be helpful to look at your spiritual beliefs as you make this decision. If you have a strong belief in an afterlife the decision to stop treatment may be easier. In contrast, if you are struggling with what happens after the body dies it may be helpful to talk to your pastor, your priest, your rabbi, or other spiritual leaders. In a few studies with lung cancer, people who felt they had greater spirituality (whether that meant attending religious services or communing with nature) found it easier to cope with their cancer and had a better quality of life.

Holding on to Hope

Many people are afraid that stopping treatment is equivalent to giving up hope. Stopping treatment does not mean you are letting go of hope. Instead, it means honoring your hope to spend quality time with your family and be more comfortable in the days you have left.

Next Steps If You Decide Against Further Treatment

Stopping treatment is not the same thing as hospice, but hospice care is underutilized in the last days and months of life. When discussing stopping treatment with your oncologist it is also a good time to have a discussion about advance directives, palliative care, and hospice care.

You may be wondering what is ahead, and hesitate to ask. You may wish to learn more about what to expect in the final stages of lung cancer.

Bottom Line

Since there are now many more treatment options for cancer than in the past, people living with cancer and their loved ones are often called upon to make the decision as to when to stop treatment. Unfortunately, physicians are often hesitant to broach this subject as well.

Choosing to stop active cancer treatment is a very personal decision, and nobody can make the choice for you. We discussed a number of things to consider before making this difficult decision, but often, your gut will tell you when the time is right. Keep in mind that choosing to stop treatment is not giving up. Instead, it is making a conscious choice to enjoy the quality of the days you have.

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  3. Coelho A, Barbosa A. Family anticipatory grief: An integrative literature review. Am J Hosp Palliat Care. 2017 Sep;34(8):774-785. doi:10.1177/1049909116647960

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