Susan Boyce of Rumson was only 42 when she was diagnosed with a slow-moving, incurable disease that some day will make breathing impossible and strip her immune system’s armor.
Fourteen years later, the wife, mother and retired Microsoft manager no longer swims or sails, two of her passions. She wears an oxygen tube all the time and she keeps the wheelchair in her car in case she needs it.
This year, Boyce, 56, regained some control over her life that will let her decide how her final days will unfold.
The “Medical Aid in Dying for the Terminally Ill” law takes effect on Thursday, permitting residents with a terminal illness to request a prescription for medication to end their lives.
Boyce was among a cadre of people led by the national nonprofit Compassion & Choices who wrote letters and testified at legislative hearings to convince state lawmakers that patients and their doctors should be trusted to make these intimate decisions.
“I firmly believe in this law, and I had the ability to speak out, to represent a group of patients who are terminally ill and don’t have the strength,” Boyce said.
“This law provides incredible peace of mind to people in my situation, knowing they have this option within reach,” Boyce said. “It does a lot to counteract the fear and uncertainty about what the end is going to be like, and are you going to be able to stand it.”
Advocates lobbied nearly eight years to pass the law in New Jersey. Their cause went from near hopeless to hopeful after Democrat Gov. Phil Murphy took office in January 2018. Murphy signed the law in April.
Lewis Cohen, a psychiatrist in Massachusetts and author of the recent book, A Dignified Ending, credits Brittany Maynard with energizing the right to die movement five years ago.
Five states including New Jersey have passed aid in dying laws since 2014, when the 29-year-old newlywed publicized her decision to move from California to Oregon, where the law allowed her to end her life rather than endure a prolonged painful death from brain cancer, he said.
“She is the Joan of Arc of this movement,” said Cohen, a palliative care researcher. “Adding to the horror (of her terminal diagnosis) was the fact that it can happen to anyone of any age. We expect older folks to die. We don’t expect someone who is young and vibrant."
Death with dignity laws in California, Colorado, Hawaii, Oregon, Vermont and Washington have enabled 3,478 people to die, according to the states’ health departments. The District of Columbia and Montana are right-to-die states but legal challenges remain an obstacle and no deaths have been reported. Maine just passed its law in June.
The law’s momentum hasn’t swayed the largest physician industry groups in New Jersey and the nation. But this year, they adopted ethics policies that give doctors the leeway to follow the law to support their patients’ wishes and honor their own personal beliefs.
The American Medical Association in May wrote: “Physician-assisted suicide is fundamentally incompatible with the physician’s role as healer, would be difficult or impossible to control, and would pose serious societal risks.”
But the AMA also noted that “physicians should have considerable latitude to practice in accord with well-considered, deeply held beliefs that are central to their self-identities.”
The Medical Society of New Jersey also reinforced its opposition to the law after taking a vote in May, but adopted seven guiding principles, such as respecting patient choice and reducing suffering, to help doctors make the process as “patient-centric” as possible, Executive Director Larry Downs said. They’ve shared it with doctors and hospitals across the state.
“While it’s legal, the profession is not there yet," Downs said. “It’s not appropriate for doctors to engage in anything that hastens death.”
To prepare the health community for questions from patients, Compassion & Choices has met with physician and hospital associations since Murphy signed the law in April — and has encountered misconceptions about what the law actually requires doctors to do, said Corrine Carey, the senior campaign director for New Jersey.
Some did not know, for example, that the law does not require or expect them to witness their patients taking the life-ending prescription, she said.
“It’s very difficult to have these conversations,” Carey said, adding that the discussions have been "transformational. Not a single (official from a) hospital system or doctor has walked away saying, 'I am against this.’ ”
Carey said the organization is working on a video to instruct patients on how the law works, because they are the ones who will broach the subject.
The law in other states helped trigger sorely needed conversations about treatment and end-of-life options, such as hospice care, said Matt Whitaker, director for Integrated Programs at Compassion & Choices. A study based on the law’s impact in California and Oregon found that for every 25 people who began the process of getting a life ending prescription, only one followed through, he said.
“What they found is when the person made their request, it was the first time they had an open conversation about what they feared and what they hoped for their final months,” Whitaker said.
The New Jersey Hospital Association, which also represents nursing homes, has provided a “tool kit” explaining how the law will work, what is expected of physicians willing to write the prescription and how facilities may “opt out."
The law applies to adults who have received a terminal diagnosis — defined as an incurable, irreversible and medically confirmed disease that will end the person’s life within six months.
Patients will have to ask their doctor twice over the span of 15 days and submit a request in writing stating they had been “fully informed” of palliative care, pain control and other alternatives. A second physician would need to verify the diagnosis. A mental health professional may be called in to consult.
The law includes recommended language for the written request.
“I understand the full import of this request, and I expect to die if and when I take the medication to be prescribed,” according to an excerpt. “I further understand that, although most deaths occur within three hours, my death may take longer and my physician has counseled me about this possibility."
The written declaration must be witnessed by two people who attest that the patient is acting voluntarily. One of the two witnesses cannot be a person who stands to financially gain from the patient’s death or the patient’s doctor or nursing home employee.
These “stop-gaps” should ensure no one feels pressured to die and no one rushes into making such an important decision, said Thomas Ziering, a family physician in Morristown. He said he has already begun discussing the law with some of his patients.
“My patients with cancer have always said to me over my 30 years of practice, ‘Please don’t let me suffer, please don’t let me be in pain.’ Now I can say you can choose when you want to exit," said Ziering, a Fellow of the American Academy of Family Practice.
He said the law gives patients the right to experience “a good death.” He defines this as the “absence of pain” and “being as clear-headed as you can, and having loved ones around you, or not if you prefer privacy.”
Ziering said he understands why many doctors reject the concept of helping patient die.
“We are supposed to heal people and keep people out of pain. Some doctors feel losing a patient is tantamount to not doing your job properly," he said. Ziering disagrees, as do a growing network of doctors who will make it known they will accept referrals to help carry out the law’s intent, he said.
“The ultimate job of physician is to relieve suffering,” Ziering said.
People too often writhe in pain or hover on the brink of unconsciousness. It’s that “last bit of suffering” Susan Boyce said she wants to avoid.
“I have so many friends who have come and thanked me — friends from the community, from church. So many have undergone the experience of seeing a loved one have a horrible end-of-life," Boyce said.
Living as long as she has with the auto immune disease, Alpha-1 antitrypsin deficiency, Boyce has had time to explain to her family, including four children and her stepson, why the aid in dying law is so important to her. She said her mother struggles the most because her illness is genetic.
So instead of swimming in the ocean and sailing, her husband “who figures out ways the world can change, has put in a pool for me."
“I have a very rich, full life...I have no intention of missing out on it," she said.
All she wants, she said, “to end that last bit of suffering.”