The simple view is that medicine exists to fight death and disease, and that is, of course, its most basic task. Death is the enemy. But the enemy has superior forces. Eventually, it wins. And in a war that you cannot win, you don't want a general who fights to the point of total annihilation. -- Atul Gawande, On Being Mortal
We all know death will win in the end. Yet talking about death, especially when to stop fighting it, rarely happens. In my work with people diagnosed with dementia, I have seen what happens when we avoid unpleasant conversations and end of life issues sneak up on us. Not making any decision becomes a decision of its own -- the decision not to have control over your end of life experience. Then a guessing game ensues and the burden falls on loved ones.
Thankfully, we do have some control over our end of life experience. We can put our wishes into writing so that one day, if we are unable to communicate, our wishes are known. No matter what age you are now, having clear wishes can drastically increase quality of life in your final chapter.
First: Decide when you believe life ends. For many years the adage "blood goes round and round and breath goes in and out" was used to determine if a person was alive in the medical paradigm. Now machines can carry out these tasks and a new definition of death is emerging -- brain death.
Philosopher Peter Singer gives a thorough overview of this dilemma in his thought-provoking book "Rethinking Life and Death." One important distinction Singer makes is the difference between a body and consciousness. Paraphrasing Dr. Neil Campbell, he wrote:
"What we really care about -- and ought to care about -- is the person rather than the body. We may respect a dead body, but our concern should be for a conscious being."
Second: Research the laws in your state and get the appropriate documentation to ensure your beliefs are respected. Decide who you want to make your final decisions -- medical, financial etc., if you are unable. You may want to select someone who is not closely tied to you emotionally, but who you still trust. Having to make these decisions may prove difficult and burdensome for those closest to you. A lawyer can help and there are many organizations created for this purpose. For example, I recently used CompassionateChoices.org, which has links to each states' end of life care paperwork.
Finally: Write "Care and Handling" instructions for yourself. Imagine you are in a state (physically or mentally) where you cannot communicate your wishes. How would you like to be treated? Think about things in your daily ritual, and what brings joy and comfort to your life.
Do you always like to have a drink before dinner?
How do you take your coffee?
How do you like to sleep? On your back, side etc.?
Are there certain songs which elicit strong emotions for you?
Are there scents that bring back certain memories?
Do you prefer a shower or a bath?
How often do you wash your hair?
Many times when I was called for psychological consultation because a resident was upset we found the culprit to be not "agitation or aggression," which are often labeled as symptoms of dementia but rather some little thing in their routine which was easily adaptable. Again, write these things down and make sure they are kept with your other wishes
We each have rights over our own life and it's quality. We each have the responsibility of examining end of life issues and coming to an opinion we can stand behind.
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