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Your Right to Know about Treatment Options

And Your Right to Refuse Them

By

Updated November 12, 2008

If you’ve ever been admitted to the hospital or a clinic for a procedure, you will probably remember signing an informed consent. It was one of those wordy forms that you skim over briefly before signing at the “X.” Your health care provider is morally bound to alert you to the benefits and risks of any treatment or procedure so you can make an informed decision about your care. Unfortunately, this doesn't always happen.

Those of us who work in palliative care often see patients who were not told about end-of-life options. They may have only been told about aggressive "curative" treatments and may not have been told that the treatments wouldn't actually cure their disease. We often hear patients say that if they would have known how a particular treatment would impact their quality of life, they would not have chosen it.

Multiple studies done with the seriously ill and elderly have shown that these patients fare better when they have honest discussions with their physicians about their goals of care. Patients who are presented with all treatment options available, including the option of comfort care only, and participate in the decision making process report a higher quality of life than those who do not. Why then, are these discussions not happening?

California is the only state so far to pass a law that would require physicians to share information about end-of-life options, including hospice, palliative care, refusing or withdrawing life-prolonging treatments, and making the choice to refuse food and hydration, upon a patient’s request. The legislation, called the Terminal Patients’ Right to Know End-of-Life Options Act, was championed by the advocacy group Compassion and Choices and signed into law in September, 2008 by Gov. Arnold Schwarzenegger with the backing of the California Medical Association (C.M.A.).

While I applaud California for taking a step in the right direction, I have to wonder why this information is only offered at a patient’s request. Many patients with life-limiting illness don’t know which options to ask about, and even more disturbing, sometimes aren’t even informed that they are dying. I’d like to see a law passed that required physicians to be honest about a patient's prognosis and offer all treatment and end-of-life options to every patient unless they specifically asked not to know.

How can you be sure that you’re getting all the information needed to make an informed decision about your care? What if you don’t live in California and your doctor isn’t required to answer your questions about end-of-life care?

Information to Help You Make Informed Decisions

6 Questions for Your Doctor about Treatment Options

Terminal Patients’ Right to Know End-of-Life Options Act

Making Difficult Health Care Decisions

5 Questions for Your Doctor about Palliative Chemotherapy

Plan Ahead with Advance Directives

Hands Off! Do Not Resuscitate

Sources:

Wright, A., et. al. Associations Between End-of-Life Discussions, Patient Mental Health, Medical Care Near Death, and Caregiver Bereavement Adjustment. JAMA, October 8, 2008; 300: 1665 - 1673.

Pantilat, SZ., Markowits, AJ. Initiating End-of-Life Discussions With Seriously Ill Patients. JAMA, Jun 2001; 285: 2906.

  1. About.com
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  5. End-of-Life Decisions - Making Decisions at the End of Life

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