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).