Commentary: A clinician’s perspective on medical aid in dying

Suffering at the end of life isn’t theoretical to me. It’s not ideological nor philosophical.

In my 30-plus years practicing clinical neurology in Dover, I’ve seen hundreds of patients suffer from neurodegenerative diseases that are certain to end their lives, sometimes under excruciating circumstances.

ALS (Amyotrophic Lateral Sclerosis, or Lou Gehrig’s Disease) is a prime example. ALS is a progressive disease of the nerve cells in the spinal cord which control voluntary movement. Their cognition, however, is unaffected and thinking remains intact. They are fully aware of the effect ALS is having on their body and the fact that progression is inevitable.

As the end stage of ALS approaches, patients lose the capacity to swallow and ultimately to breathe.

With ALS and other neurological diseases, the trajectory is predictable. Each additional loss of motor function over time indicates advancing, untreatable disease leading to an inevitable death.

After cancer, ALS is the most common diagnosis of those who utilize medical aid in dying in Oregon, Washington, California, Colorado and Vermont. These people are not suicidal. They want to live, but the disease is killing them.

Medical aid in dying provides relief from the suffering that accompanies the final stages of their disease. 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.

As a physician, I know that better management is needed at the end of life. Our state should encourage and expand access to hospice and palliative care. However, even the best palliative care cannot completely alleviate pain and suffering for every person.

Multiple studies report that more than half of terminally ill patients experience pain at the end of life, with the prevalence of pain increasing in the last four months of life to as high as 60 percent in a person’s final month.

One of the many reasons why Delawareans should support this bill is that it is optional. No physician, health provider or pharmacist is required to participate. This process is voluntary for the mentally competent terminally ill individual and can be withdrawn at any time in any manner.

Individuals with cognitive impairment are not eligible for medical aid in dying. HB 140 has clear safeguards in place to avoid many of the concerns and pitfalls of other countries which simply do not apply in the nine U.S. jurisdictions where medical aid in dying has been authorized.

It is also important to clear up any misinformation about death certificates for those who utilize medical aid in dying. In these instances, the underlying terminal illness is listed as the cause of death. This is consistent with how doctors routinely report end-of-life choices on a death certificate.

For example, doctors don’t list “disconnecting the ventilator” or “suffocation” as the cause of death for a person who had a massive stroke and was ultimately removed from life support. They list “stroke” or “cerebrovascular accident.”

Medical aid in dying provides relief from the suffering that accompanies the final stages of a terminal illness and has the support of many of the state’s medical professionals. In fact, after careful study, the American Academy of Neurology withdrew its opposition to medical aid in dying, instead leaving the decision of whether to practice medical aid in dying to the individual physician in the context of the doctor-patient relationship consistent with their values and beliefs.

Once New Jersey’s Aid in Dying for the Terminally Ill Act takes effect on Aug. 1, 21 percent of Americans will reside in a state where medical aid in dying is authorized.

And while not all Delaware residents would choose medical aid in dying at the end of life, it certainly should be an option for those facing a torturous death.

EDITOR’S NOTES: Dr. 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. He is a member of the American Medical Association and the American Academy of Neurology. His opinions expressed here his own and not necessarily those of the listed organizations of which he is a member.

After the House Health & Human Development Committee heard testimony from speakers on House Bill 140, the main sponsor Rep. Paul Baumbach, D-Newark, requested the committee hold no vote on it.

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