Imagine a checklist that asks the question, “What makes your life worth living?”.
Its instructions state that it will “help you think about and express what really matters to you.” Finally, your choices for how “you would feel if this factor by itself described you” are:
- Difficult, but acceptable,
- Worth living, but just barely,
- Not worth living, and
- Can’t answer now.
You are then presented with 21 factors – at least 8 of which commonly effect people with spinal cord injuries and disorders – and asked to use the scale above to rate if your life is worth living if any one factor applies to you.
For those of you who prefer visual aids, see the checklist from the Your Life, Your Choices pamphlet produced by the Department of Veterans Affairs.
I’m a quadriplegic… I’m a veteran… More than one factor applies to me… Uh oh.
Before I get too far into this, let me assure you of a few things. There’s no need to call anyone to intercede, my life is definitely worth living. I am not a danger to myself or others. Please don’t have anyone kick down my door to rescue me. It would be a waste of time and good wood.
I am wholly in favor of advanced directives – or documents that help you express your wishes related to life-sustaining medical treatment if you’re no longer able to communicate directly with your medical provider. In fact, I have one. My wife has one. My mother, step-father and grandmother have them. We’ve seen people suffer when they were no longer able to express their wishes about life-support and palliative care. So, my family had a discussion and filled out the necessary paperwork to ensure that our respective wishes are documented and honored in the event that any of us are unable to communicate our wishes directly with our physician.
I believe that the intention behind the Your Life, Your Choices (YLYC) publication is positive. It is a tool to help guide people through a difficult and emotional discussion which culminates in a legal document. I don’t refer to it as the “Death Book” (as has been the case in some media outlets.) Such tools are necessary to encourage people to take on such a daunting task. Somewhere along the way however, the writers of YLYC lost their focus.
The focus of advanced care directives should be clear – to document my wishes about my care in the event that I can no longer do so directly with my doctors. That’s it!
YLYC however, takes on the issue of disability. Not life-threatening, I can’t communicate with my doctor disability. Disability in all of its forms. And as such, it devalues the lives of people with disabilities by causing people to question “what makes your life worth living” well beyond the intention of advanced directives.
For instance, the first factor on the checklist is “I can no longer walk but get around in a wheelchair.” Referring back to the initial optional answers to the checklist, as a healthy, young naval officer, I may well have once imagined that life in a wheelchair would be horrible and not worth living… before I found myself paralyzed at 24 years of age.
YLYC diverts itself from documenting the wishes of patients with life-threatening medical conditions from which there is no hope of recovery and who are unable to communicate with their doctors, to chronic medical, psychological, social, and financial conditions that should never be considered when formulating advanced care directives.
Factors such as “I live in a nursing home” and “I cannot seem to ‘shake the blues'” have no business in advanced care directives. In either of the situations, the patient is able to communicate and options are available.
People with disabilities have been struggling to fight misconceptions held by the general public about the quality of their lives and their value to society for generations. We’re making slow progress, glacially-slow progress, but progress nonetheless. In this day and age, when we’ve seen glimmers of progress and heard promises of change, it’s simply horrifying to have the everyday experiences of people with disabilities rated against the worth of their lives.
As for me, add a column to the checklist: “Difficult, but worth living at any cost.”