Thursday, October 14, 2004

The Cancer Patient's Guide to Informed Consent

We've all heard about the doctor's obligation of educating a patient about the potential benefits and possible risks of a particular operation or procedure. This is called "informed consent", and is usually completed by the patient signing a written form that delineates the pertinent information needed. The process is typically quick and tidy. The cancer patient, however, faces a host of possible side effects and toxicity when starting chemotherapy or biological therapy, and must agree to receive a treatment that almost always comes with no guarantee of success. Not only that, if severe toxicity occurs, the patient already struggling against cancer may die. This seems like a daunting challenge for the oncologist to ensure that the patient and family truly understand what the realistic goals of treatment are, and what the likely adverse effects will be. In fact, it is impossible to anticipate and relay every conceivable complication of a treatment, as some side effects are so idiosyncratic as to be unpredictable.

This fact does not relieve oncologists of the responsibility of providing adequate explanation of the details of any anti-cancer treatment. "So what's the problem?" we ask. "Explanation for us is easy - we've done it hundreds of times." Yes, but listening to informed consent for the first time can be confusing, frightening, and depressing for the patient, especially if the consent talk is disorganized or incomplete. Since our mutual goal is to move forward together to forge the best possible outcome for the cancer patient, it therefore seems appropriate to create a basic guide to informed consent. This brief guide contains helpful questions and subjects that should be covered when receiving informed consent about a potential treatment, whether that treatment is chemotherapy, hormone or biological therapy, or the newer class of agents called targeted therapy. By using this outline, the patient can ensure that the important topics are covered by the oncologist.

These are the highlights of informed consent that should be covered in the counseling session.

The Goals and Limitations of the Treatment: What are the chances of the treatment working? Can my cancer be cured? If not, does treatment prolong life? Will my symptoms improve with treatment? Will the cancer disappear completely - a complete remission? How long does a complete or partial remission last? What will my life be like while on therapy?

What happens when the cancer is found to be growing again? (This is a frequent question, but one that does not always have a straightforward answer, since it involves speculation by the oncologist).

The Risks and Side Effects: the risks that should be discussed include death, hair loss, vomiting, anemia, fever, infection, bleeding, mouth sores, diarrhea, damage to the skin, heart or nerves, allergic reactions and fatigue. This unhappy and only partial list highlights why informed consent is no fun to give nor receive - but it is necessary to prepare for potential future problems. A written list of side effects should be given, and solutions to the side effects should be discussed.

The Logistics of Treatment: How many days per month will I take treatment, and when does the treatment cycle restart? Where will I be treated - in the office or hospital? How long will each treatment last? Who and what should I bring to my office visit? How often will I come to the office in between cycles? Will I need a portacath (an implantable venous access device) for IV access? How much does treatment cost, and what is my personal cost?

Alternatives to the Treatment Recommended: Is this the best treatment available? What other treatments could be used? Are there any new therapies available, or is a clinical trial (research study, often with newer agents) open for my disease?

I realize this list is not comprehensive, but it is a good start for anyone facing the challenge of cancer therapy. By empowering the patient and family to ask these questions, the potential for misunderstanding is reduced and the chance for a more tolerable experience is strengthened. Asking thoughtful questions also brings out the best in every oncologist, as we are eager to share the increasingly hopeful news about the fight to subdue this wretched affliction.

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