A Dilemma for the Informed Patient |
An ESUN Article
In his article, "Participatory Medicine: an End to Rational Ignorance in Medicine," Gilles Frydman states:
"Informed patients no longer want to be passive recipients of care. On the contrary, they want to be engaged in the medical decisions affecting their wellbeing. They want access to all the information that can help them understand their medical problems and manage their care. They want to feel free to ask their doctors questions, voice concerns and expect that these will be answered, without fearing retribution from this questioning." [1]
How do you go about becoming an "informed patient"? What does it mean to be informed when dealing with rare diseases such as sarcoma, where much of the information about diagnosis, staging, treatment options, and treatment side effects is either in medical journals or presented at specialty conferences? While journal articles and conference presentation slides are becoming easier to access and circulate among patient communities, it is difficult for the average lay person to know which portions of these materials will be useful to them when interacting with their medical team. The problem of understanding (i.e., being informed) is complicated by the fact that there are over 50 or 60 subtypes of sarcoma. Scientific knowledge of the biological mechanisms in the genesis, growth, metastasis, and death of these tumors is rapidly changing.
So it appears that the average lay person is attempting to understand a complex, dynamically evolving field where specialists may or may not agree with one another. Each person attemtps to do this in a unique situation: while raising a family, going to school, going to work every day, entering the golden years, enjoying youth, or struggling with the fifth round of chemo after a third surgery while battling an insurance company. What time is left in our day to get informed? The dilemma: If I can’t find the time to get informed, how can I be my own advocate? How can I advocate for my wife with uterine LMS, my daughter with Ewing's sarcoma, my husband with MPNST, my son with rhabdomyosarcoma, my cousin with liposarcoma, or my grandma with MMMT?
Some of the potential solutions to the dilemma are to become involved in online support groups, to use web sites that provide peer-reviewed information about sarcoma, and to employ a cancer care navigator. But I will not discuss these options in any detail, because I feel the nature of the dilemma must first be personally addressed by each reader. When dealing with a rare and dangerous cancer, how much information do you need in order to establish trust an integral part of your relationship with your medical team? Seek out how that level of knowledge so that trust is the center of the participatory medicine process. Trust can improve your mental and physical condition and can even lead to better treatment and prognosis. Without trust between patients, caregivers and the medical team, a great deal can be lost - even if the long-term results of treatment are good.
References
[1] Participatory Medicine: an End to Rational Ignorance in Medicine, Gilles Frydman, V5, N3, ESUN, June 2008.
V6N5 ESUN Copyright © 2009 Liddy Shriver Sarcoma Initiative.