While taking every effort to beat breast cancer seems obvious, some patients opt out of breast cancer treatment for a variety of reasons. Unless you are a minor or are deemed medically incompetent in a court of law (situations that rarely occur with breast cancer), no one but you can determine what is or what is not in your best interest—even if you decide that the best treatment for your breast cancer is no treatment at all.
Reasons to Refuse Treatment
Most people would consider it “normal” to want to seek treatment for breast cancer the moment you are diagnosed, particularly at a time where survival rates are ever-increasing. But this would also infer that not seeking treatment is “abnormal,” and that’s rarely the case.
There are a plethora of reasons why a woman may not be willing to pursue or continue breast cancer treatment. Some may be transient and fade with time. Others are fully committed and made with a complete understanding of the implications of the refusal.
Among some of the more common reasons for the refusal of breast cancer treatment:
- A period of adjustment: No one really knows how they will respond to a cancer diagnosis until they get one. Some people will panic, others will become resolute, and others still will need time to come to terms with the diagnosis before moving forward.
- Denial: Denial is usually self-protective, allowing a woman to manage her emotions until she is better able to process the news. Even if she is never able to come terms with the diagnosis, she is in no way “incompetent.” A conscious refusal to act is as much a right as the decision to seek alternative therapy.
- Personal priorities: You might assume that cancer would be the number one priority in a person’s life, but not everyone agrees. In some cases, a woman may opt to delay treatment for something she considers personally important, such as an upcoming wedding, family trip, or business obligation.
- Impact on others: Women are typically nurturers and caregivers in a family. In facing a diagnosis, a woman may worry that the cost of the treatment will bankrupt her family. Or, she may want to spare others from the “horrors” she believes she is going to face, whether real or imagined.
- Skepticism about health care: People who have had bad healthcare experiences—or live in economically challenged communities where public service delivery is poor—may have deep-seated skepticism about the medical care offered them.
- Fear of side effects: There is no denying that the side effects of cancer therapy can be profound. Sometimes the fear of hair loss, sickness, and pain can become so paralyzing that a woman is unable to see the benefits of treatment.
- Matters of faith: Some religions, like Christian Science, discourage certain medical interventions necessary for cancer treatment. Even if this is not the case, a woman may feel comforted by entrusting her fate to nature or a higher power.
- Quality of life: If a woman’s prognosis is not good, she may prefer to spend her days doing what she loves rather than fighting a battle she is unlikely to win. Likewise, some women with advanced cancer will choose hospice care for its emphasis on emotional support and pain control, rather than aggressive therapeutic interventions that cause pain.
Role of the Physician
The traditional patriarchal role of the physician has changed vastly in the past 50 or so years. Where doctors were once prescriptive, they are now considered equal partners in your care. When it comes to decisions, however, those are entirely yours.
Within this context, the role of your doctor is to provide you full disclosure of your condition and treatment options in a language you understand. The disclosure should be made without prejudice and coercion. This includes direct coercion (such as calling in a loved one to “talk sense into you”) or subtle coercion (telling you “you’ll be able to see your grandchildren grow up” if you start treatment).
One of the central tenets of patient-centered care is informed consent. This dictates that people have the right to make decisions about the direction of their health care, even if that decision is to terminate treatment or seek alternative therapies. This applies as much to everyday ailments like the flu as much as it does serious ones like breast cancer.
In theory, the rules of informed consent should always be adhered to without exception. In practice, this is not always the case. Doctors will sometimes try to sway you without even realizing it, often because they believe it is “in your best interest.” They might even dismiss complementary or integrative therapies because they either don’t believe in them or assert (reasonably) that certain approaches are not evidence-based.
The problem with such dismissals, of course, is that it robs you of the opportunity to fully explore your treatment options. And, in the end, it is far better for your oncologist to know which complementary treatments you are pursuing—and even incorporate them into a treatment plan— to better avoid risks, side effects, and interactions.
What your oncologist is not required to do is engage in unendorsed medical treatments (unless under the auspice of an accredited clinical trial), irrespective of whether the alternative treatment causes direct harm or not.
Beyond that, doctors have no right to implement treatment of any sort without your direct consent.
There are few exceptions to your right to refuse medical treatment, however. In an emergency situation, doctors do have the right to intervene only to control the emergency. Unless there is a legal directive to prevent such treatment, such as a Do-Not-Resuscitate (DNR) order, the doctor has an obligation to step in, albeit in a specific capacity.
The only other clear exception is parental consent. Parents or legal custodians have the right to approve or deny the medical care of their children up to a certain age (which varies by state). They can also do so for older children who are mentally incapable of making their own decisions, even if that child is institutionalized.
That does not mean that doctors cannot legally challenge a parent’s decision if they believe it harmful. In fact, medical caretakers have an ethical and legal obligation to advocate for the best interests of a child when parental decisions are potentially dangerous.
The same interventions do not apply to adults. Even a spouse cannot override a partner’s refusal of treatment without an extraordinary court action. In such a case, the court would have to declare the patient mentally incompetent and unable to make or carry out important decisions regarding her health.
Even so, the very notion that a court can force a woman with breast cancer to undergo surgery, chemotherapy, or radiation therapy is legally unsound and unheard of in medical practice.
Making an Informed Choice
Most people have encountered one aspect of informed consent, namely the signing of a medical consent form prior to a medical procedure or hospitalization. But informed consent is about more than just signing a document. It involves discussing the potentials risks and benefits of a recommended treatment, as well as the risks and benefits of receiving no treatment.
If, after a reasonable review of the pros and cons, you are not certain whether you want to pursue a treatment, there are several things you should do:
- Say so. Tell your doctor that you need time to think about it. Don’t just walk away and never come back. Instead, schedule a follow-up appointment where you can discuss any questions that arise. If needed, ask your oncologist for reference materials to better understand the type of breast cancer you have.
- Don’t feel rushed. Even if you are told your cancer is aggressive, it is not an “emergency,” per se. Listen carefully to your prognosis and set aside time to think things through quietly, evaluating what you want and why.
- Seek a second opinion. A second opinion is not a rebuke of your oncologist. It is a means to gain assurance or perspective from a neutral party who has looked at your case with fresh eyes. If needed, seek a third or fourth opinion; just be certain you’re not looking for someone who will tell you what you want to hear rather than providing you with sound and objective advice.
- Separate your anxiety from everyone else’s. Oftentimes, the panic we feel is not our own. While you may fully accept your diagnosis, you may find yourself absorbing the anxiety of others around you. Whatever you decide, the best thing you can do is share your calmness, rather than your frustration, with the ones you love. As much as you’ll need their support, they need your support and understanding too.
- Reframe the conversation. People will sometimes accuse others of “wanting to die” if they decide to refuse cancer treatment. You can help yourself and others by reframing the conversation, focusing on what you want (such as “I want to enjoy the time we have”) rather than what you don’t want (“I don’t want to feel pain”). By doing so, you’re engaging a loved one in conversation rather than debate.
- Keep an open mind. Even if you are at peace with your decision, there may be moments when you may have doubts. This is normal. Just because you’ve come to a decision doesn’t mean that it is set in stone. If you find yourself vacillating, consider speaking with a therapist who can help you sort through your emotions.
If you do decide to stop or refuse treatment, it is best to inform your doctor in advance.
In many cases, the oncologist will ask you to sign an informed consent document confirming your decision. This not only protects the doctor legally, but it asserts that you fully understand and accept the implications of your choice.
If a Loved One Declines Treatment
If someone you care about has chosen not to continue their cancer treatment, be as supportive as you can. She may have already been met with resistance from her doctors and those closest to her. If her mind is made up, it won’t help to add your voice to the debate.
If she is still struggling with her decision, offer to listen and help her sort through the options. Ask if she’d like you to join her at her next doctor’s appointment to help her get the answers she needs.
Speaking with a therapist yourself can help you cope with any feelings you are having about a loved one’s decision, which may range from shock to anger to sadness. This is all normal, but is something you will need to proactively work to overcome for everyone’s benefit.