How to Make the Decision to Refuse Medical Treatment

How to Make the Decision to Refuse Medical Treatment

patient talking to doctor
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Once we've learned about all our treatment options, sometimes our inclination is to just say no, we don't want to choose any of them. In most circumstances, the ability to refuse treatment is a patient's right.

However, it's entirely possible we could make that choice based on flawed information. For example:

  • if we were misdiagnosed
  • if our doctors didn't explain all our treatment options
  • if we do not understand our religious tenets clearly
  • if we aren't aware of the actual costs of care or of financial assistance

In these cases, refusing care may be the wrong choice, causing us additional grief or unnecessary problems with our health.

It's important that the choices we make about whether or not to accept medical treatment be informed decisions. Here are some steps to take to be sure that if you do refuse, you are doing so having informed yourself with all the facts you need:

Be Sure you Have the Right Diagnosis

A misdiagnosis will usually yield treatment options that are incorrect, too. There is no sense in going through the difficult process of deciding to refuse treatment if the treatment being recommended isn't the right one to begin with.

(This was my personal experience - a cancer misdiagnosis that would have put me through chemotherapy that I did not need.)

If you are diagnosed with any disease or condition that requires a treatment you plan to refuse, be sure to confirm that diagnosis. Second opinions, duplicating lab tests, differential diagnosis, a different specialist - these are all approaches to verify that you have been diagnosed correctly.

Be Sure you Know about All of your Treatment Options

There are many reasons doctors don't tell us about all our options for treatment. They range from not enough time for the appointment, to new treatments that the doctor isn't aware of, to options that won't be presented because the doctor won't make any money for him or her.

Beyond your doctor, there are many people and places that can provide information about your diagnosis and possible treatment options. You can research online, read medical journals, ask a librarian to help you and - very important - you can ask other patients about their choices and experiences.

Be sure you know about all your options, even the ones your doctor doesn't mention, before you simply refuse to be treated at all.

Confirm Any Decisions that are Based on your Religious Beliefs

If you think you need to refuse treatment because of your religious beliefs, be sure you consult a knowledgeable person in your church or other house of worship who can explain clearly what those tenets are. For example, Jehovah's Witnesses and Christian Scientists allow some forms of treatment but not others.

If you are refusing treatment for someone else, especially a child, make yourself aware of the legal rights of that person. The state may not see the imposition of your religious beliefs on someone else as clearly as you do.

Calculate the True Cost of Treatment and its Impact on your Budget

If you are considering refusing treatment because you think it is unaffordable, then be sure you pursue all avenues first. This cannot be stressed enough. Too often patients jump to the wrong conclusions about whether treatment, or parts of treatment are within their means.

Be sure to discuss your financial challenges with your doctor, who may offer you alternative suggestions. Research the cost of additional treatment options, some of which may be less expensive than the one your doctor has recommended. From saving money on prescription drugs, to negotiating with your doctors, to looking into new insurance alternatives, there may be a better option for you than simply deciding against treatment at all because you think it's too expensive.

Refusing treatment on the grounds that it is too expensive is only valid if the pros of saving your money outweigh the cons of not being treated.

Be sure you have the right to refuse to be treated.

Not all Americans have the right to refuse treatment. If you receive workers' compensation, Social Security disability or private disability payments, be aware of the circumstances under which you may not decide against treatment.

If you are receiving workers' compensation or disability payments and are considering refusing any form of treatment, whether or not you believe it's related to your employment, you'll want to discuss the possibilities with doctors, attorneys and your employer's human resources department if appropriate. Whether or not you think it is right or fair, the decision about whether you can refuse treatment will usually be based on whatever is considered to be in the best interest of your employer.

Don't refuse treatment for pain or difficult symptoms.

This is a consideration if your choice is being made because you have been diagnosed with a terminal illness or condition, and that the end of your life is imminent. You may decide against life-sustaining or extending treatment, but that doesn't mean you have to decide against all treatment.

There is a difference between deciding against life-sustaining or extending treatment, and choosing palliative care that will make you more comfortable at the end of life by treating your pain. Unless you have religious beliefs that will not allow you to accept palliative care, you will want to be sure that your wishes about palliative care are clear, through conversations and advance directives, even if you choose not to have life-sustaining treatment.

Understand the consequences of refusing treatment.

There may be a number of consequences, intended or not, as a result of your choice to forego treatment.

  • You may not be able to change your mind. For example, a cancer patient in Stage I may have options that no longer exist once his cancer progresses to Stage III or IV.
  • If you are one of the exceptions to the right to refuse, then you may find yourself in financial or legal hot water.
  • If your doctor disagrees with your choice, then you may find yourself needing a new doctor. This usually depends on your diagnosis and its likelihood of being cured, or your likelihood of gaining improved health. An oncologist would be less likely to disagree with his terminally ill patient's choice not to be treated than an endocrinologist who treats diabetes and disagrees with her patient's choice not to take his insulin or adjust his diet. You'll want to have a conversation with your doctor about how he will react if you decide against treatment.
  • Refusing treatment may mean that your disease or condition progresses and your health gets worse. You may die sooner than you would if you had accepted treatment. (Or you may not. There are many stories of patients who refused treatment and who went on to live longer than projected. In some cases, it's possible they were not diagnosed correctly to begin with.)
  • If you have cancer, you may find some help from this article about stopping cancer treatment.

Explore your feelings about the decision.

At this point, you will know in your heart what decision you believe you need to make. It won't be a matter of listing pros and cons; it will be a matter of knowing what decision is the right decision for you.

If possible, don't share it for a day or two. It will continue to be at the top of your mind, and you'll have the opportunity to consider the consequences. What will your partner think? Your children? Your other loved ones and friends?

Remember - it's your decision, not their decision. Think about how you will respond if they argue with you or voice their opposition. How will you explain that it's the right decision for you?

Plan for your next steps, after you refuse treatment.

Once you make the decision not to accept treatment, you'll want to plan for the following:

  • Make plans to change your mind. You may never change it, of course. But you want to know what your options are. You want to know at what point your recommended treatment is no longer an option, or what other possible treatments are or are not available to you any longer.
  • Manage your own expectations about what your experience will be going forward. It will be difficult to figure out specific time frames, but you should be able to get a sense of what the chronology will be. Ask your doctor what signs to look for in your body or what kinds of things you can or should not do (drive a car or take a vacation, for example). Are there any things you can do to improve your experience? Anything you should avoid that will make it worse?
  • Make sure your advance directives are in place if your refusal to be treated will mean you will die.
  • Talk to your loved ones and other important people in your life, such as your pastor, priest or rabbi, and your lawyer. They need to know why you made the decision you did and what your expectations are since you've made it. Don't expect them all to support you right away; they may disagree with your decision.

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