Whatever god you believe in or what church you go to, fine. But I should be able to make that decision and I find it highly offensive that any religion can tell me this is a sin. Highly offensive.”

— Jennifer Hopkins McDowell

The hardest part for Jennifer Hopkins McDowell isn’t the  isolation that will consume her — not the physical decline, not the cognitive deterioration and not the stripping away of the simple things that now give her life joy.

What really scares her as she looks ahead to the end of her life is not being able to see her young grandchildren grow. If not for them, she said, “I would be OK with it.”

She doesn’t know when that end will come. But the Little Compton resident saw hereditary spastic paraplegia (HSP) take her father, her brother, her aunt and her cousin. She knows the rare genetic disorder is coming for her too and is resigned to her fate — what she wants most now is to enjoy what she has and, when the time comes, the right to die with dignity.

“For those of us who have diseases like this, we should get to make the decision. I get to decide.”

Year in, year out

McDowell, a direct descendent of Stephen Hopkins, Rhode Island’s first governor, finds herself in the middle of a debate that has been raging in the Ocean State for more than a decade — should the terminally ill get to decide how and when they die, and should physicians be allowed assist them?

For her, the answer has always been clear, she said Friday, looking out to Cuttyhunk and the islands from the deck of her home just down from South Shore Beach.

“Whatever god you believe in or what church you go to, fine,” she said. “But I should be able to make that decision and I find it highly offensive that any religion can tell me this is a sin. Highly offensive.”

So about three months ago, she got in her beat-up 2016 Tesla and drove to Providence to testify on behalf of the Lila Mansfield Sapinsley Compassionate Care Act.

Co-sponsored by Portsmouth, Little Compton and Tiverton Rep. Michelle McGaw, House Bill 5219 and its companion in the Senate, Bill 0151, would legalize a resident’s right to end his or her life under the care and supervision of a doctor (see bottom of story). It has been filed yearly for more than a decade, and every year it is tabled or passed over.

Similar ‘death with dignity’ laws are on the books in Connecticut, Vermont, Oregon, Washington, New Mexico, Colorado, California and Maryland, among others. But in Rhode Island, where the Catholic church still holds significant sway over state politics, the legislation has never gained much traction.

McGaw said Monday that she has supported the bill ever since she won her first election to the House, and will continue to advocate for and support it until it is codified into law here.

She acknowledged the tough road the legislation has faced in past years, and hopes that if it doesn’t pass this year, opposition will continue to decline:

“When you listen to the testimony, it is just heart-breaking to hear some of the stories,” McGaw said. “But for some reason, different people are coming at this issue from different places in their lives, and there are a number of my colleagues who can’t get comfortable with this.”

That’s why stories like McDowell’s are key, she said:

“I think the testimony is very compelling, and I think the more people that tune in and listen, or read the testimony, I think the more comfortable they become. Unfortunately, we’re not there yet.”

Testify

McDowell’s testimony before the House Judiciary Committee came on Tuesday, Feb. 11, a date known to Catholics as World Day of the Sick.

As she walked in, she mentioned that her ancestor, the state’s first governor, was known as a heavy drinker in his day but she wonders now whether he might have had the same progressive genetic disorder instead.

HSP, which often afflicts younger patients, is not well-known and seems to hit members of her family in their late 60s or early 70s. It is a progressive wasting disorder and there is no cure.

McDowell first noticed symptoms late last year while on a family vacation in Puerto Rico, and realized the significance of the tiny tell immediately, having seen it in family members who are now gone — “I noticed I was dragging a foot.”

It starts with that, she said Friday, and goes from there, “progressing into more physical disability and mental disability until you’re bedridden, not verbal.”

“I don’t know how long I’ve got,” she told legislators. “But it’s always been important to me that I have the choice to decide how long I want to live with this. And my family has the choice to decide when they’re willing to let me go.”

She wasn’t the only one to testify. Apart from another supporter who regularly works with the terminally ill, written testimony from Father Bernard Healey of the Rhode Island Catholic Conference was also entered into the record.

The bill, he wrote, amounts to “the intentional taking of a human life (that) violates the most basic tenet of our belief in the dignity and sacredness of human life.”

“Physician-assisted suicide endangers the weak and marginalized in society, especially the poor, minorities, elderly, mentally ill, disabled and terminally ill,” he wrote.

Alternatives?

Two and a half months removed from that testimony, McDowell said Friday that while she hopes the compassionate care act will one day prevail, she knows it faces significant odds in Rhode Island. Until then, she will continue to advocate for it and is trying to keep her options open. She sees many difficult conversations coming with family members.

“When my family and I decide we’ve had enough, I need to give them instructions ahead of time because I will not be able to make that decision,” she said.

She sometimes daydreams of going to Switzerland in her final days, where such physician-assisted suicide has long been legal. Or she could go to Vermont, which also has laws on the books. But she hopes change will come to the Ocean State, with her family and the law united around her.

“That’s what I want,” she said Friday, looking out past her deck to the blue sea stretching off to the islands and beyond.

About the legislation

The Lila Manfield Sapinsley Compassionate Care Act, if passed into law, would allow patients over the age of 18 to request "aid-in-dying medication." If passed, those eligible must:

• Have been diagnosed with a terminal condition that will end their life within six months, and must be mentally capable of making and communicating health care decisions;

• Must make two verbal requests to their doctor, at least 15 days apart, for medication;

• Must make a written request to the doctor, which must be signed by two qualified adult witnesses;

• Must have their diagnosis and prognosis confirmed by their prescribing and one other doctor, who determine that the patient is capable of making a medical decision. Further, the prescribing doctor must confirm that the patient is not being coerced or unduly influenced by others, and must inform the patient of any feasible alternatives, including treatment options

• The patient must be able to take the medication on their own.
The legislation is filed as House Bill 5219 and Senate Bill 0151.