When I was diagnosed with terminal lymphoma and told I had only months to live, I was also told that chemotherapy would buy me only an extra year or so. So I was faced with a choice: Should I spend my last months of life undergoing difficult treatment and spending every penny I had to pay for it? Or would I just forgo treatment and try to hold on to as much "normal" as I could? Should I accept what medical science could offer? Or refuse treatment, except for pain management and hospice? Of course, a few months later, I was able to bypass the entire question because I determined that I had been misdiagnosed.
Every day, new patients (maybe you) are faced with a similar decision - whether or not to put yourself through treatment that may be difficult, painful, frightening, even potentially deadly. In some cases, a recommended treatment will only be a question of comfort or speed of healing. In others, it's a question of quality of life versus the quantity of life that a lifesaving or life-extending treatment may bring.
There are four goals of medical treatment - preventive, curative, management and palliative. When we are asked to decide whether to be treated or to choose from among several treatment options, we are choosing what we consider to be the best outcome from among those choices.
Unfortunately, sometimes the choices we have won't yield the outcomes we prefer. For example, a terminal cancer patient may prefer a curative treatment, but one doesn't exist. Or a patient diagnosed with a lifelong illness might wish he had prevented it to begin with, but it's now too late. Knowing our remaining options may not be acceptable to us, and we may want to just say no to any treatment at all.
But the question is, do patients have the right to refuse medical treatment? Can they just say no to prescribed treatments or therapies, no matter what their reason for doing so?
The answers will depend on the patients' circumstances and the reasons they may choose to refuse care:
Non-Life-Threatening Treatment Decisions
Most patients in the United States have a right to refuse care if the treatment is being recommended for a non-life-threatening illness. You have probably made this choice without even realizing it. Maybe you didn't fill a prescription, chose not to get a flu shot or decided to stop using crutches after you sprained an ankle.
You may also be tempted to refuse a treatment for more emotional reasons. Perhaps you know it will be painful or you are afraid of the side effects. There is nothing illegal about choosing to forgo treatment for any of those reasons. They are personal choices, even if they aren't always wise choices.
However, there are some patients who do not have the legal ability to say no to treatment. Most of these patients cannot refuse medical treatment, even if it is non-life threatening.
Choosing to refuse treatment at the end of life addresses life-extending or lifesaving treatment. The right to refuse end-of-life care was guaranteed to Americans in 1991 with the passage of the federal Patient Self-Determination Act (PSDA). The PSDA mandated that nursing homes, home-health agencies and HMOs were required by federal law to provide patients with information regarding advance directives, including DNRs (do not resuscitate), living wills and other discussions and documents. It also guaranteed that Americans could choose to refuse life-sustaining treatment at the end of life.
When we choose not to be treated, knowing that the refusal will shorten our lives, it is usually because we are choosing what we believe will be a better quality of life, rather than a longer life that may be less pleasant. Some people, knowing they are going to die soon, even choose to end their own life rather than be faced with decisions that will, in reality, be executed by others.
Be aware that if you choose not to receive life-sustaining treatment, it does not mean you are required to forfeit palliative care, which can be administered even for patients who do not want to be kept alive. Palliative care focuses on relieving pain at the end of life, but does not help extend life.
Before you decide against receiving treatment at the end of your life, be sure you've followed steps to help you to make that informed decision.
Refusing Treatment for Financial Reasons
You might also consider refusing treatment if you have been diagnosed with a medical problem that requires very expensive treatment. You may prefer not to spend so much money. Patients make this decision when they believe treatment is beyond their means. They decide to forgo treatment instead of draining their bank accounts.
Sometimes we, as Americans who live in a for-profit healthcare system, are forced to choose between our financial health and our physical health. Our health may force us to decide whether or not to undergo a treatment that we know will clean out our savings or put us into a lifetime of debt.
So the question is - Are we allowed to choose against treatment if we know it will cost us every penny we have?
The answer is yes: Most Americans can refuse treatment when they know it will have a negative impact on their finances. However, if you are considering refusing treatment because you believe it is beyond your means, be sure you follow these steps carefully to help you make the right decision.
Using Religion to Refuse Treatment
Followers of two Christian religions - Jehovah's Witnesses and Christian Scientists - plus a few other non-affiliated churches in different parts of the United States - may be willing to undergo some forms of treatment, but restrict or deny other forms based on their religious beliefs. Each offers clear guidelines for making that determination.
Adults may rely on their church affiliation and its tenets to refuse treatment for themselves if they choose. However, they have less legal standing when it comes to making those choices for their children. Several court cases regarding children with different diseases and medical needs have addressed the legality of refusing treatment based on religious reasons, with varying outcomes.
Bottom LineThose are the circumstances under which patients may make a decision not to be treated. If you are trying to make a refusal decision yourself:
- Call on a professional shared decision making expert to help you make this difficult decision. The shared decision making process helps you weigh your values and beliefs against your options to make the choice that is best for you.
- Be sure you aren't a patient who is not allowed to refuse medical treatment.
- Take steps to be sure you are making an informed decision.