The following first appeared in the New Jersey Star Ledger on November 13, 2018.
My sister and I are nurses who are disabled by life-shortening diseases. As a result, we know from first-hand experience about both the limits of modern medicine at life’s end and the challenges of living with disabling medical conditions.
I’m 61 and have suffered from rheumatoid arthritis for 30 years. It has invaded my lung tissue and requires me to wear an oxygen tank most of the day to breathe. I’ve had 18 surgeries. I plan to fight my illness for as long as I can. I enjoy life. But at the end stage of my disease, I do not want to suffer through air hunger in the very last days of my life.
My younger sister, Melissa, suffers from small cell lung cancer, the most deadly of all lung cancers. She has two small, small grandchildren that she loves beyond measure.
Neither of us wants to die, but we know we are going to die long before the end of our natural lives. When that time is imminent, and if our suffering becomes unbearable, we both would like to have the opportunity to die in our own way, at home, with our family and friends around us.
It would provide terminally-ill New Jerseyans with six months or less to live the option of medical aid in dying to peacefully end intolerable suffering. Medical aid-in-dying laws promote and supplement, rather than compete against, hospice, improving end-of-life care for many people who may never need or ask for this option.
Oregon’s 1994 Death with Dignity Act has helped spur the state to lead the nation in hospice enrollment, according to the report published in the New England Journal of Medicine. More than 90 percent of those who have used the law since it took effect 20 years ago were enrolled in hospice, according the Oregon Health Authority.
The harsh reality is even the best hospice and palliative care cannot relief suffering for every patient. Recent peer-reviewed studies show pain and suffering at the end of life is at an all-time high, despite a doubling of the use of hospice and palliative care over the last decade.
According to a 2015 Annals of Internal Medicine report about symptom trends in the last year of life:
“Pain is one of the most prevalent and troubling symptoms, and patients and families fear it and wish to avoid it near the end of life … Despite national efforts to improve end-of-life care, proxy reports of pain and other alarming symptoms in the last year of life increased” from 53 to 61 percent.
Contrary to claims by some disability rights groups outside New Jersey, polling shows most New Jerseyans with disabilities (63 percent) support medical aid in dying by nearly the identical percentage of all New Jerseyans (62 percent).
It’s worth noting that Disability Rights Oregon says it “has not received a complaint of exploitation or coercion of an individual with disabilities in the use of Oregon’s Death with Dignity Act” that is the model for New Jersey’s Aid in Dying for the Terminally Ill Act.
In fact, the New Jersey legislation has more than a dozen safeguards to prevent abuse and coercion. For example, two doctors must confirm the terminal prognosis, that the requesting person is mentally capable of making their own medical decisions and is physically able to self-ingest the medication, the person must make two oral requests for the medication, as well as a written request witnessed by two people who can confirm the person is voluntarily making the request.
The reality is there will never be enough safeguards for some people who oppose medical aid in dying. All my sister and I ask is that our lawmakers not allow a minority of New Jerseyans to deny this option to a majority of their constituents like us who want it.