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Metastatic breast cancer , also known as stage 4 or advanced breast cancer, means that breast cancer has spread beyond the breast and nearby lymph nodes to other parts of the body, usually the bones , lungs, liver, or brain.e60dc2a1-f33c-4a05-9b50-8e3e8e597629646fda7c-bba6-4482-98f7-ec749abf4b70 While treatment can’t cure metastatic breast cancer, it can help manage the disease and slow progression. But sometimes, even with treatment and the best efforts, the cancer continues to progress. The time may come when you might consider stopping treatment. What Does It Mean to Stop Treatment? Ending treatment can take a variety of forms, but typically it means stopping medication, chemotherapy, and other treatments meant to fight the disease and instead focus on care that will make you more comfortable and improve your quality of life. For some people living with metastatic breast cancer, the decision to end treatment may be a challenging one and should involve your entire care team, along with your family and support system, says Nicole LaMariana, LCSW , a clinical social worker with a background in oncology, palliative care, and hospice at Memorial Sloan Kettering Cancer Center in New York City. Having these conversations is extremely important, she says. “It feels, a lot of the time, like no one wants to bring up [the idea of ending treatment] because they don’t want to upset the other person,” LaMariana says. “It doesn’t mean that everyone’s not already thinking about it, or worried about it, or exploring what it means to them.” How might a person know that it might be time to start thinking about ending treatment? And what happens after you decide to stop treatment? Deciding to End Treatment There are several signs that it may be time for someone with metastatic breast cancer to end treatment. This conversation will likely be initiated by your cancer care team, says Iris Zhi, MD, PhD , a breast oncologist at Memorial Sloan Kettering Cancer Center. Spending more than half the day in bed or a chair, having difficulty staying awake, experiencing a very poor quality of life, or having frequent hospital stays due to physical symptoms are all signs that may suggest someone is no longer able to tolerate treatment, she says. Others include pain, feeling tired, weight loss, having no appetite, not eating, and no longer having interest or energy to do things that used to be enjoyable. These may also be signs that you are at a higher risk of having greater side effects of continued treatment, Dr. Zhi notes. These side effects may include nausea, vomiting, diarrhea, and infection. “That’s where focusing on symptom management, with [the] expectation of not focusing on cancer care, will come in,” Zhi says. Symptom management means focusing on pain control, difficulty breathing, nausea, and other gastrointestinal issues. While most people diagnosed with metastatic breast cancer choose to end treatment because it is no longer effectively combating the disease (something they will know with the help of a doctor), there are various other reasons someone may come to this decision, LaMariana says. If a person with metastatic breast cancer wants to travel or simply feel more like themselves, but they find going back and forth to treatment appointments or dealing with side effects particularly burdensome, that may contribute to their decision to stop treatment. “Like anything in medicine, it’s a burden versus benefit analysis where a patient may have quality of life issues,” LaMariana says. “Someone might say, ‘Even if a treatment may extend my life, if I’m in and out of doctor’s appointments and getting infusions and feeling quite ill, tired, or not myself, I no longer want to receive that treatment, even if it shortens my lifespan.’” Entering End-of-Life Care When a person with metastatic breast cancer chooses to stop treatment, several end-of-life care options are available to consider. First, there’s palliative care and hospice care, which LaMariana stresses are different. Palliative care is specialized medical care to help manage symptoms, and it is frequently given along with cancer treatment. Palliative care is meant to bolster a person’s current care by focusing on quality of life for them and their family. LaMariana says that many patients would have already been receiving palliative care along with their treatment. Hospice care is for someone who is approaching the end of life, typically with less than six months to live. It focuses on comfort and quality of life. “[Palliative care is] an additional layer of support that often goes hand in hand alongside the medical team, who may still be pursuing treatment,” says LaMariana. “When and if someone’s treatment no longer seems to benefit them — which is determined [by personal reasons] for the patient along with the medical team’s advice — that’s when care would shift into hospice. The goal [is still to] maximize quality of life [with] effective symptom control and psychological and spiritual support.” Hospice care provides comprehensive comfort care as well as support for the family. It can be offered at the person’s home, in someone else’s home, or at an inpatient hospice care facility. A hospice care team typically consists of these members:e60dc2a1-f33c-4a05-9b50-8e3e8e597629139e6026-bd8d-494c-a24d-3b2ea1126312 Nurses Doctors Social workers Spiritual advisors Hospice care at home relies in part on having a caregiver who can provide care at home, LaMariana explains. You may opt to enter an inpatient hospice facility if you are experiencing pain or other symptoms that can’t feasibly be managed at home and need around-the-clock care, LaMariana says. It’s important to know that hospice is not going to shorten a person’s life, Zhi adds. “Actually, we talk about the benefit of avoiding going to the hospital, and patients with hospice have a better life quality and the potential [to] live longer,” she says. Hospice allows people to focus on comfort, quality of life, and death with dignity, she adds. It helps address the physical, social, and spiritual needs for patients and their caregivers. Focusing on Your Quality of Life What a person wants from end-of-life care can be very specific, LaMariana says. “It really starts with the patient, what quality of life [means] to each patient, and being able to identify that to a team,” she says. Hospice can help you fulfill your wishes, which may include spending more time with your family, receiving emotional and spiritual counseling and support, reflecting on your life and writing or recording memories or messages for family, and expressing your feelings and thoughts around dying. LaMariana calls all of these things helping people “live until they die,” and she says that’s an important part of this care. LaMariana has even worked with people who have specific goals. For example, one person wanted nothing more than to go to Disneyland with her children while she was in hospice. “Despite the patient being in hospice, they were able to take their [child] to Disneyland for four days and come back,” she says. “Whereas if this individual was continuing to get the treatment they were getting, they would not have been able to travel to do those things, to spend that quality time. The treatments were particularly challenging for this individual and very time-consuming.” Your end-of-life care team may also be able to assist in helping you feel connected to yourself and your identity outside of your cancer diagnosis. For example, instead of constantly going to appointments and receiving treatments, you may want to spend your time practicing a hobby, making art, writing, spending time with family and friends, and experiencing life outside of treatment. Talking to Your Doctor About Ending Treatment “There isn’t an expectation that a patient or a family should be responsible for knowing when to have the conversation [about ending treatment],” LaMariana says. “It’s the responsibility of the medical team to help assess what the person’s goals are and when and if it would be appropriate to discuss hospice as an option.” Although bringing up the topic of ending treatment shouldn’t fall on you and your family, you understand yourself and your end-of-life goals better than anyone, LaMariana says. Therefore, it’s important to have conversations surrounding quality of life and end-of-life care early on in treatment, and to continue to revisit these important questions throughout treatment. “In the event that a patient is considering stopping treatment, and these conversations have not yet been initiated by their care team, I would encourage the patient to speak very honestly about their values, their goals of care, [and] the concerns that have led them to [ask about stopping treatment],” she says. Some questions you might want to ask your care team, according to LaMariana: Is my current treatment working? What do my treatment options really look like? How much longer do you think I will be able to do the things I enjoy if I choose to receive treatment versus if I don’t? Will continuing treatment make a significant difference in my cancer growth and my chances of survival? Finding End-of-Life Care Many patients will choose a hospice or palliative care facility based on recommendations from loved ones or people they know who have had a positive experience before, LaMariana says. If you’re unsure about which end-of-life care options are available near you or how to choose the right one, it may be helpful to visit Medicare.gov to find and compare providers near you. Some questions to ask when looking for hospice care:e60dc2a1-f33c-4a05-9b50-8e3e8e597629d6f143d1-2582-4eb8-8943-e664bce5b830 What do others say about this hospice? How long has this hospice been in operation? Is it Medicare-certified? Is it accredited? Are the doctors and nurses certified in palliative care? Does the facility meet our specific needs? What is the expectation about the family’s role in caregiving? How are patient or family concerns handled? Are there extra services beyond those required? How are families prepared for the death of a patient if a member of the hospice team is not on-site? How is quality measured and tracked? What are the bereavement services? Finally, remember that entering hospice care doesn’t signal the end of your relationship with your doctor and care team. “We check in with each other periodically. We work with hospice physicians and hospice nurses closely as long as that is what the patient wants,” Zhi says.
Resources We Trust Cleveland Clinic: How Palliative Care Can Help if You’re Living With Metastatic Breast Cancer National Cancer Institute: Choices for Care When Treatment May Not Be an Option American Cancer Society: Where Is Hospice Care Provided and How Is It Paid For? Dana-Farber Cancer Institute: Tips for Starting Difficult Conversations With Your Care Team MD Anderson Cancer Center: Palliative Care

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