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Wednesday, September 1, 2010

Informed Consent: A Medical and Political Myth

Since I became an adult I have signed many informed consent forms before medical procedures. I consider these informed consent forms "lawyer flotsam"--they have virtually no bearing on being informed, consenting to a procedure, or being truly aware of what is going to take place. I have signed informed consent forms handed to me seconds before a procedure began that were many pages long. Could I have read the form? Sure, but the social expectation was to sign the document and not put the doctor behind schedule. I have also been overly informed--long ago a resident that did an IVP went into great detail about all that could wrong during the procedure. The fact I had many IVPs before did not deter him from giving me a litany of possible mayhem. Had I not been a veteran of many hospitalizations I would have been very scared, convinced the procedure was a high risk.

Informed consent has been on my mind as when I had surgery weeks ago I signed a boat load of informed consent forms. In fact I signed many forms, a stunning number, that were in my estimation utterly pointless. The paper work involved in getting to an operating room is indeed impressive. Are you William J. Peace born 2/21/60? Yes, a question that was repeated by many others. I also signed a form that stated exactly what surgery I was going to have. Did this mean I was truly informed? In a word, no. However, I was a well informed patient. Why was I well informed? Because I knew the surgeon for 25 years and had spoken to him multiple times about what was going to take place. We had extended discussions about the pros and cons of surgery, the inherent risks, and post surgical care. I also read various medical journals about what was being done and knew my surgery was highly specialized and required a unique skill set. I was and still consider myself very lucky.

My level of Informed consent is not the norm. The vast majority of people that undergo medical procedures, including surgery, have a poor understanding of what they are about to experience. How for instance can a person who has been healthy their entire life and never had more than a yearly physical be truly informed when given a devastating diagnosis and told they need immediate surgery? This person will sign the same forms I did but be far from informed. What about the parents of a child that is a car accident and is seriously injured? This parent will also sign informed consent forms but be far from informed. The point I am trying to get at is medicine has a culture unto itself that few who work outside the industry can begin to understand. Sure veterans such as myself of many hospitalizations get the culture of medicine. Many people with disabilities get the culture of medicine as well. But we are not the average citizen. Complicating maters further is the fact the Catholic Church is in the business of medicine. In the USA the Catholic Church operates 624 hospitals and 499 long term care facilities. A spokeswoman for the U.S. Conference of Catholic Bishops reported "When your mission is rooted in Jesus who healed the sick, only the top quality care will do". What a great line and wonderful sentiment. Don't be fooled by such pleasant sounding words. The Catholic Church is an institution with a checkered past (the same can be said of all organized religions). What sort of informed consent takes place at a Catholic Hospital or Hospice? A very unique type in my estimation, one tied to the doctrines of the Church. For instance in Bellingham a widow is trying to force a Catholic hospice to inform patients about the Death with Dignity Act. The hospice in question, Whatcom, a Catholic owned facility, chose not to participate in the law, part of the law's opt out provision. While I am forcefully opposed to assisted suicide, I am in favor of informed consent. To me that informed consent means knowing the social and political positions of any medical facility. Thus I would never consider entering the doors of a medical facility operated by the Catholic Church. According to Ross Fewing, director of ethics at PeaceHealth, the operator of Whatcom, "Our belief is that life is sacred and that intentionally ending one's life is not something that we would support. It's being consistent with Catholic teaching. Under Catholic moral theology, it would be direct participation in the act". Again, these are nice words provided you share the same moral theology--note the use of the word theology. Religious theology should have no role whatsoever in medical decisions or the running of medical institutions.

So what would truly informed consent involve? A good relationship between medical professionals and the patient that transcends the traditional doctor patient relationship. Ideally a person and his or her doctor should share a bond of some sort or at least a mutual understanding of what is important in life. A patient should know about the doctor's strengths and weakness as well as his or her standing in the medical community. A patient should know exactly where any possible surgery and hospitalization will take place. They should also visit the institution and know what is specializes in. A doctor should also truly inform a patient about what will take place. This requires social skills few doctors possess. For instance, I want to know everything and expect a high level discussion replete with references, an expectation that was met by my surgeon. For me this is the ideal but for others this might not be what they expect or want. Hence, informed consent is myth in my estimation. It is dependent upon complex variables that differ from person to person and institution to institution. I believe hospital administrators and bioethicists truly do the best they can to create informed consent--I just believe it is not possible to generalize with regard to informed consent.


Claire said...

**The point I am trying to get at is medicine has a culture unto itself that few who work outside the industry can begin to understand.**

This is something most people do not understand. Informed consent always falls under this culture and its parameters. What they consider to be informing patients, rarely actually serves the patient. We signed our forms two minutes prior to surgery just yesterday Bill!! We do, however, have an excellent relationship with the surgeon..acquired over 10 years. How many people have that sort of track record with a physician outside of their family docs?

william Peace said...

Yes, hospitals and institutions have unique cultures. And institutions do not like those that have the audacity to question how things are run. One must pick and choose one's battles carefully. Informed consent signed minutes before surgery is a farce. How about give people the form 5-7 business days before a procedure and a packet of information about what will be done. Like me, I bet you did not even read many of the forms you signed. It never ceases to amaze me how much ink is spilled over the idea of informed consent among bioethicists. It is a myth that needs to exposed.

FridaWrites said...

This may vary from dr. to dr. I am a little exacting about whom I see, so for my 3 recent surgeries and my other medical procedures, I was given packets of information well in advance, plus the doctors verbally gave me good information about what success to expect, what complications could occur, etc.

Hospital's informed consent process, however, is always a farce. I do read all the forms, even there (I read quickly)--and often there is blanket authorization for anything, covers their rears but actually removes informed consent. I.e., informed consent=we *could* do anything we want. Plus you automatically sign that you agree to videotaping, medical residents, etc.--there is no way in the process to object, even when you say verbally, "I don't agree to this!" At a surgery center that was not a hospital, there were check boxes for such consents, but one nurse changed my answer! Now everything there is computerized in a way that you can't read the whole form--you sign the electronic copy of a form that you can only partially visualize.

FridaWrites said...

I meant "hospitals' "