Informed Consent Part One: You want to do what?

Cancer patients will be faced with an incredible range of choices, very few of them minor. In making these decisions, it is almost impossible to underestimate the importance of informed consent, also called informed choice. Informed consent is the advent of the view that patients have a right to take part in the decision making process where their care is involved. While the internet age may make this seem obvious, there are still many who can recall the bygone days of doctor paternalism.

The most widely recognized instances of informed choice may be the consent forms signed at the beginning of clinical trials and experiments (both medical and social). Some hospitals also have their patients sign consent forms at various times (more on this in the next section). It is important to know that while the former category of forms is important, they are by no means the extent to which informed care, which is a right conferred by common law and basic ethical principles, extends.

Informed consent is described by George Annas in “The Rights of Patients” as “…before a patient is asked to choose to undergo any treatment or procedure that has risks, the patient must be provided with information…presented in language the patient can understand.”1

This last part requires two people, you being one of them. While a doctor can’t give you a long explanation involving medical jargon and expect his duty of informed consent to be fulfilled, it is up to you to let the doctor know when you don’t understand something. This is without a doubt one of those times where feeling foolish should be your lowest priority; it’s better to feel a little foolish now than to wake up on the operating table with your right leg amputated (this is obviously an extreme example). Here is a list of questions you should be positive you can answer before consenting to a serious medical procedure:

• What is the exact purpose of this procedure, and how will that purpose be fulfilled?
• What exactly can I expect to gain by undergoing this procedure?
• What risks are associated with this procedure?
• What alternatives do I have? Furthermore, what happens if I don’t do anything?
• How likely is it that this will work?
• Any other information you feel is pertinent.2

Medical decisions as a cancer patient are more important than decisions most other people will face in their lifetime, which is why careful and reasoned consideration is so important. Think of purchasing a home: your real estate agent is often an invaluable part of the process, and you will likely acknowledge that he or she is much more knowledgeable about the homes you are considering and real estate in general. At the end of the day, however, you are the one who will be forced to live there and make the payments, and it is prudent to make an informed and carefully considered decision. This analogy is not meant in any way to demean or downplay the role that doctors play in your care, clearly a real estate agent is not a physician. Nevertheless, I believe considering it will be helpful in keeping the immensity of your numerous options in mind. A few final considerations:

• A useful list of questions to ask your doctor: http://www.oncologychannel.com/questions.shtml
• Ask for numbers, not just words. You may have a very different opinion of what it means for something to be ‘rare’ or ‘probable’ than your doctor does.
• Try to communicate effectively to your physician what your specific aims and goals are, in addition to what you value. It is easier for your physician to make ‘good’ recommendations if the two of you are in sync. I’ll be discussing the doctor-patient relationship in a future post.

And lastly, some additional resources for your consideration:

American Cancer Society on Informed Consent

University of Washington School of Medicine on Informed Consent



1 Annas, George, "The Rights of Patients" p 116
2 Annas, George, "The Rights of Patients" p 116

Introduction

Your Rights: A Guide to Self-Advocacy

It is easy to feel disempowered following the diagnosis of a serious illness, particularly a rare cancer such as carcinoid. While such reactions are natural, it is important to remember that many things are still in your control. This is important for many reasons, your health not being the least among them. Helplessness is related to depression, which has been shown to have a relation to adverse health effects (see "Post-infarction depression and incomplete recovery 6 months after acute myocardial infarction"), so simply the act of taking a proactive role in your care may reap benefits for your health.

Being a cancer patient does not mean that you give up the rights you had before being diagnosed, and in fact those rights may become more important as you encounter new settings, including ones specific to health care you may not have considered before. Over a series of posts, I will cover a broad range of topics detailing ways in which you can proactively make decisions regarding your care and treatment, because the key is to remember that it is your body. In addition, I will touch upon advocating beyond your own personal care to policy considerations which you, as both a patient and a citizen, have a right to participate in.

I will be drawing upon a large number of sources for these entries, certainly not the least of which will be “The Rights of Patients” by George Annas. It has been referred to as “the Bible of patient rights” and I highly recommend anyone who believes they may need to seek health care one day to read it.

Please direct any questions or comments to Daniel.joo@caringforcarcinoid.org. Please consider anything in these posts that are not backed up by some clear fact (such as a court case or statute) to be a matter of opinion. I also encourage you to use them as a starting point to do your own research (feel free to share that as well).