Wow! This is harder than I expected. Let me explain. It’s time to write a living will. I am 70 years old and live with Parkinson’s, a disease that will progressively attack my nervous system. As Parkinson’s attacks, my abilities to walk, talk and even think will diminish. Along with the loss of function comes a progressive loss of the quality of life.
There are treatments for Parkinson’s but all current day treatments, while restoring some abilities and quality of life, are only temporary. In March, I am going to have a deep brain stimulator placed deep within my brain. The surgeon will bore a whole in my skull and thread an electrode into the area that Parkinson’s affects. The hope is that the procedure will improve the quality of my life by restoring functions previously lost. Hopefully, I’ll be able to reduce or come off of some of my meds as well.
As with all surgical procedures, there are risks. While the risks are fairly rare, they can be devastating and include stroke, infections, bleeding and even death. Being a physician, I fully understand the risks and consequences should something go wrong. I also understand that, in the real world, the risk of anything going wrong is 50%. The surgeon may tell you that statistically the procedure has a 2% chance of causing injury in the general population. However, in the individual’s case, it either will happen or will not happen (50-50).
My “why” for writing this article should now be readily apparent. I thought that the hard part of creating a living will was already done. I was wrong. While I have had multiple conversations with my wife and children regarding letting me go if something adverse happens during surgery or from any other event, putting my wishes in writing is extremely difficult. This morning I searched the internet for living wills written by physicians. I found one helpful article. “ We should strive for a good death that occurs at the proper time and place,” by ALLEN FRANCES, MD and published on KevinMD on April 27, 2015, is worth reading.
While a document that tries to anticipate future problems and leaving instructions for each scenario is impossible, setting a goal of a “good death that occurs at the proper time and place.” A good death occurs at home with family and friends, not in a hospital or nursing home. A good death recognizes the importance of quality of life and that death is a natural occurrence. Fighting death is often associated with pain and suffering (tubes in every hole, respirators, nursing homes).
Families want everything possible done to salvage their loved one. Often, the one thing loving families could but don’t do is let their loved one die a good death. Likewise, physicians see death as an enemy to be defeated, without recognizing the damage caused by defeating their foe.
I will leave the decision making up to my wife, my children and my physicians with the understanding that, if I cannot reasonably expect to regain my independence, enjoy my family, joke about sex and cruise the back roads of North Carolina with the top down, then I want a good death.