End of Life Care
Today I had the opportunity to offer testimony in support of Massachusetts House Bill 2381, an act relative to End of Life Options. Physician assisted suicide is a loaded topic. For some, it comes into conflict with religious or political beliefs. For me, it comes down to personal choice that respects the rights of an individual to know their path to peace. Here’s what I had to say about it:
In 2014 my husband, Arthur Shirk, was diagnosed with Idiopathic Pulmonary Fibrosis or IPF. IPF is a progressive, incurable disease in which the lungs fill with scar tissue and eventually become unable to transfer oxygen to the bloodstream. It is akin to a prolonged suffocation.
Art was a brilliant, courageous, and enthusiastic man. His life’s work was helping people reach their full potential. He travelled the world facilitating leadership development and personal growth programs. He held three master’s degrees and a doctorate not because he cared about degrees but because he had endless curiosity about the world and the people in it. He had been a professional skater and a state diving champion. After being diagnosed with heart disease years earlier, he took up mini triathlons and hiked the Inca trail in Peru. He took up the trapeze at age 50. He was relentless and grateful for every moment of his life. He lived it all without fear until the day of his diagnosis.
After his IPF diagnosis, Art feared a prolonged, painful and degrading death. He wanted to be able to live his remaining days fully and freely but couldn’t do so until he knew he had a way to end his suffering if it all became too much. In the absence of physician assisted suicide, Art had to find other means and combed over articles about ways to end his life without pain. Art had friends gather helium tanks so he could create a helium tent that would stop his breathing. He also acquired drugs from Mexico that would slowly stop his heart.
Art spent his limited days planning a way out. He did all this alone, fearful that I could potentially be held criminally responsible for helping end his life if I was involved in any way. As if it isn’t tragic enough to have to plan one’s own death, he did it behind closed doors alone – another consequence of the absence of physician assisted suicide.
In November 2016, we had our one and only fight during his illness. Art felt that he would soon need to end his suffering but couldn’t tell me where or when due to his continued effort to protect me legally. Despite our abiding love for another, the law was driving us apart at the most tender and vulnerable time in our life.
Imagine the person you love most telling you that you may come home soon to find them dead at their desk or in your bed. Imagine your husband, wife, child or parent dying this way. Imagine your beloved alone at the time of their death only because the law made that necessary. No law and no culture that values human dignity should create such inhumane circumstances.
In the end, IPF claimed his life before Art implemented either of his plans. Art and I had no choice but to accept his death, as we all must eventually do. However, we do not need to accept an undignified death or an end of life that lacks compassion. Dignity is a human right that supersedes religious, social or political beliefs. We cannot have lives with dignity without death with dignity.
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