USE OF VENTILATORS: ALIVE BUT AT WHAT COST TO QUALITY OF LIFE?
An article was published in the Philadelphia Inquirer on May 28th, 2013 entitled: “Alive but at what kind of quality of life?” (pg. A-3) by Stacey Burling. The article is not available unless you are a digital subscriber to the Inquirer.
The author reports on the results of two critical care physicians who have begun to research the consequences of using breathing machines for two weeks or more on seriously ill patients. Their research (often called a ”meta-analysis”) involved reviewing 124 studies from 16 countries – an impressive comprehensive study. Results showed that 30% of the patients who had been on ventilators for two weeks or more died while in the hospital once the ventilator was removed. Furthermore, 60% died within the year. Information on the results for remaining 10% was not a part of the study.
Studies show that medical research seems to focus predominantly on how to keep patients alive and/or getting ahead of the life threatening condition. Rarely is attention given to the quality of life after an intervention. The medical field has developed powerful technologies and medicines designed to stave of dying but one of the unintended consequences has been keeping our bodies alive when there is little apparent quality of life. This is becoming a major concern among some physicians.
While medicine rightly focuses on preventing death, the reality is that we are all going to die at some point. Because of this, the use of radical or high tech interventions to keep us alive needs to be weighed against the impact of these interventions on the quality of life of the patient as well as their family after the intervention. Age will have a lot to do with choices since interventions for a younger healthy person may have a better prospect of full recovery compared to an older person.
It can be a tough judgment call.
Consideration of the use of these technologies on older frail adults is especially critical. This is especially true of both CPR and ventilators.
The following applies to all who are placed on a ventilator regardless of age.
• You will have air pumped in and out of your lungs which will keep you alive.
• You will not be able to speak.
• You may be heavily medicated.
• You may be paralyzed with drugs so you won’t “fight” the rhythm of the ventilator.
• You will be hydrated and fed liquid nutrition by tubes.
• You will be catheterized.
• You may have a rectal catheter because you will only be receiving liquid nutrition which means you will likely have diarrhea.
• You will lose the strength of muscles you use to breathe which will necessitate physical therapy at the end of treatment to regain your breathing capacity.
• You may never regain sufficient capacity to be free of supplementary oxygen which means carrying oxygen with you 24/7. (While there are exceptions, some physicians say that beyond 2 weeks on a ventilator may result in not being able to survive without it.)
• You may be intellectually compromised due to low oxygenation of your brain related to your condition either permanently or temporarily.
• Most physicians (85%) when polled said that they would not want to be on a ventilator if they were unconscious and needed ventilation.
• You may recover completely!
It is clear from this article that doctors don’t know in the long term what will happen to the quality of your life when you are placed on a ventilator. You should consider carefully under what circumstances you would want assistance with breathing and talk it over with your proxy, your family, and your physician. Include, if you wish, a statement about how to assess (as a percentage) your likelihood for survival and recovery. For example, if your family and proxy were told that you had a 10% change of complete recovery would you want to have this treatment?
Be aware that this statistic also indirectly states the reverse: that you have 90% chance of NOT recovering fully. Would you want to be ventilated? How long would you be willing to be on a breathing machine?
Remind your family that an effort to obtain an honest statement from the doctor can be compromised by his/her lack of knowledge about the long term quality of life following ventilation because there is limited research on this topic. And remind your proxy and family that many doctors do not like to give bad news. They prefer instead to instill hope because it’s less painful for them and for your family to hear.