End of Days

Of the several venues that I frequent in my practice I began to consider a nursing home that I visit on occasion. On this unit the residents are all hooked up to ventilators or breathing machines. They are all incapable of breathing on their own so a trachesotomy is placed which is a hole in the front of the neck and a tube is placed into their windpipe which then gets attached to a breathing machine. Periodically the tube wears down and that is where I come in to change it. These patients are fed through a tube that goes through their abdomen into their stomachs, are completely unaware of their surroundings and are essentially kept alive through artificial means. They have absolutely no quality of live and in fact are likely suffering. I suspect if they had the chance to express their views they would elect to have the machines removed and allowed to pass.

The problem is that the majority of these patients experienced a sudden, unexpected and significant brain injury. Whether a large stroke, traumatic brain injury or an aneurysm that ruptured they succumbed to an event that placed them in this unit without the ability to have planned for their desires. Some live for years in this situation with absolutely no chance of recovery and the costs to maintain these individuals is enormous. Only the families can elect to withdraw treatment and their families for whatever reason demand that they be kept alive on machines. I cannot understand why the families cannot make the most humane decision for their loved ones which is to allow them to pass. Maybe there are religious reasons or feeling of guilt, and I am not saying these are easy decisions, but to maintain a body with no cognition for years and years is wrong. Unfortunately for these patients, they did not have an advanced directive which would have expressed their desires prior to their injuries.

I agree with the Obama administration that end of life planning should be a critical part of the reformation of healthcare. Everyone should be required to have an advanced directive to clearly state what their wishes are. The document should express the desires of the individual not to be maintained indefinitely by artificial means and to be allowed to die. It is clear that many families cannot make the appropriate decision and that is why the document lets the family off the hook, so to speak. Not only will this allow for the more humane treatment of these patients but another benefit is the savings of an enormous quantity of money that is currently being wasted.

The attack by the right on this part of the health care reform is not fair. People have the option of expressing their desires precisely on the advance directive and the government cannot mandate specific language. It is very important for everyone as part of their individual and civic responsibility to have these forms completed. There should be no barrier for individuals to fill out these forms and there should be no cost to the individuals. This will ultimately save a tremendous amount of money in health care costs. But more importantly, it will allow all of us to express our desires to die in a dignified manner with minimal suffering and with the least burden to our families and to our country. It will release our families from the responsibility of making end of life decisions for us that seem so difficult.