This article originally appeared for the Delaware News Journal
Sam was a 42-year-old patient of mine with ALS, or amyotrophic lateral sclerosis — also known as Lou Gehrig disease. He was relatively vibrant when he first came to me, but eventually became weaker and had to use a wheelchair to get around.
He began having trouble forming words and spoke in a whisper. He even had difficulty swallowing his saliva. He was rapidly losing weight, both in muscle bulk and in overall body mass.
Sam and I had heartfelt conversations on his disease state and prognosis. His mind was clear throughout the course of his disease — ALS does not affect memory or cognitive function.
He didn’t want a stomach tube for feeding or a tracheostomy to help him breathe. Sam wanted an option as to how he would die.
One day, I got a call from his wife. Sam had died from aspiration pneumonia —not the option he would have chosen. He wanted the option that could now be provided by House Bill 160.
As a physician who has practiced medicine in Delaware for over 33 years, I help my patients make decisions about their health every day. Educating patients and discussing diagnoses and treatment options may be the most important thing I do.
Sometimes decisions are easy; many times, the decisions are difficult.
Patients with terminal illnesses that have no curative treatment are extra special in my eyes. They face something for which none of us is ready.
I strive to respect each patient’s wishes and listen to what they and their family tell me. These honest conversations about how people want to be cared for at the end of their lives are incredibly important.
Patients should make decisions regarding testing and treatment based on their personal values and beliefs. It is for this reason that I support Rep. Paul Baumbach’s bill, HB 160, which is positioned to deliver to terminally ill Delawareans the freedom to live out their final weeks and days as they see fit, by authorizing an additional end-of-life care option known as medical aid in dying.
Medical aid in dying is an end-of-life practice in which a terminally ill, mentally capable adult who has a prognosis of six months or less to live requests, obtains and — if his or her suffering becomes unbearable — may self-ingest a physician-prescribed medication that brings about a peaceful death.
Medical aid in dying has been extensively discussed in the medical community. A 2017 Medscape poll shows that 57 percent of U.S. doctors support medical aid in dying, backing the rights of patients with an incurable illness to seek a dignified death.
The Massachusetts Medical Society recently announced that it has dropped its longstanding opposition to medical aid in dying and adopted an informed view of neutrality after surveying its members. The physicians surveyed supported medical aid in dying by a 2-to-1 margin.
Other recent physician surveys in Colorado and Maryland have similar results.
Paradoxically, by having an aid-in-dying statue on the books, patients may feel more at ease discussing end-of-life options with their physician, which would give caregivers and family more insight and higher utilization of hospice and palliative care. As documented for over 20 years in Oregon and more recently in California, patients are profoundly relieved by the simple fact that medical aid in dying is available.
California Governor Jerry Brown encapsulated the issue best for me when he signed the “End of Life Act” in 2015, stating: “I do not know what I would do if I were dying in prolonged and excruciating pain. I am certain, however, that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”
The guidelines outlined in HB160 are supported by thousands of Delawareans whose voices deserve to be heard. It’s time for our state lawmakers to pass the End of Life Options Act so that as we each face the inevitable end of our lives, we are offered autonomy and decision-making authority over how we die.
Robert Varipapa is a board-certified neurologist in private practice in Dover. He is the Chairman of the Department of Medicine, Bayhealth, Kent Campus and Secretary and Board Member of the Medical Society of Delaware (the views expressed here are his own and do not represent the Society’s). He is a member of the American Medical Association and the American Academy of Neurology.