Thursday, October 2, 2008
The second one about race and end of life care in JAGS is about using 'enhanced information' as an aide in end of life decision making. It involves surveying 78 older community dwelling adults about their treatment preferences in several scenarios (e.g. advanced dementia is described, they are asked would you want tube feeds, CPR, mechanical ventilation, etc.). The intervention is that some patients were given 'enhanced information' which involved detailed descriptions of the interventions and the study was designed to see if that info had any effect on treatment preferences as well as if it decreased 'decisional conflict' within the subject.
I'm not going to belabor the findings other than to say that the enhanced information did have effects, and in fact the enhanced information attenuated African Americans' desire for life-prolonging treatments in the setting of a terminal illness. Interestingly the enhanced information nudged white Americans' towards more life-prolonging treatments. I thought to myself 'that's interesting' and then I read the appendix which contained an example of this enhanced information. Here it is, for mechanical ventilation.
Ummm.... Helps maintain quality of life? Tracheotomy? The 'alternative' to mechanical ventilation basically says you won't be able to breathe and die. They might as well have said 'YOU WILL SUFFOCATE AND DIE A HORRIBLE DEATH.' I have to admit I'm perplexed by the content of this enhanced information, and still sit here wondering if there's something here I'm missing. Was this an excerpt? Seems like saying 'they hook you up to the breathing machine like in the movies' would have been equally illuminating....
Treatment option—mechanical ventilation Mechanical ventilation (MV) can be used to assist you to breathe when you can no longer breathe on your own. MV can provide your brain with needed oxygen so that you can maintain your thinking skills and quality of life. The procedure This procedure requires surgery called a tracheotomy and a varying period of time in the hospital. A tracheotomy provides surgical access to the trachea to allow oxygen to flow into your lungs. You may have to have a tracheotomy in order to be able to use a mechanical ventilator for weeks, months, years, or even the rest of your life. Benefits (1) MV can either assist you to breathe or they can take over breathing for you completely and keep you alive. (2) Your family may feel better knowing that your breathing is being assisted or controlled by MV. Risks (1) Some types of tubes inserted may cause coughing and pain. (2) Infections (pneumonia, for example) may occur as a result of MV for patients who use MV for an extended period of time. Alternatives If you do not choose to have MV, you may not be able to breathe on your own. Lack of oxygen to your brain will cause brain damage that will harm your thinking skills and make your quality of life worse. Eventually, if you do not begin to breathe on your own, you will die.