Terminally ill New Yorkers cannot get help from doctors when they want to die

Margaret Craven Snowden

The Enterprise — Elizabeth Floyd Mair 
Retired obstetrician/gynecologist Margaret Craven Snowden holds up a watercolor of the New Jersey home where she was raised and where her father died. She fought the doctors who made it difficult for her to take him home to die. 

Two women — both retired local doctors — believe terminally ill patients should have more control over how and when to die. They are fighting for state laws that would allow that.

The sponsors of those bills, both women, both Democrats, realize the issue is divisive but hold out hope of passage although they can’t say when.

Meanwhile a pivotal suit made it to the state’s top court last year, which rejected the three plaintiffs’ quest to allow mentally competent, terminally ill patients the right to receive a prescription for a lethal dose of drugs from a physician. Two of the plaintiffs are dead; the third, who underwent cancer treatments, now says he’s healthy.

Against this backdrop, Margaret Craven Snowden of New Scotland, who has retired from her work as an obstetrician and gynecologist, see a clear course. She believes that birth and death are part of one natural cycle, and that the medical profession in the United States has become too commercialized and too unwilling to talk openly about death.

She is an advocate for bills currently in the New York State Assembly and Senate that would make it possible for terminally ill patients to request and receive medication to allow them to take their own lives at the time and place of their choosing, when their suffering becomes “simply unacceptable,” she said.

Craven Snowden believes in giving patients the right to make decisions for themselves.

“I think people are the only ones who know how to responsibly live within the circumstances that fate has dealt them,” she says. “You can’t really be in someone else’s shoes. And what’s right in one set of circumstances may be torture in another.”

Hospice is a “wonderful organization,” she said, noting that she helped care for her mother, father, mother-in-law, and father-in-law through their declining years and deaths, and all of them were in hospice care at the end.

But there are some people, she says, for whom hospice is not sufficient. “Some people have awful, intolerable pain. That’s what this medical aid-in-dying bill is about — give people a way out when all else fails,” she said.

Mary Applegate of Delmar spent her career in public health at the New York State Department of Health and the University at Albany School of Public Health — as she puts it, “not taking care of people one by one, but by the thousands.”

She echoes Craven Snowden in her thoughts about patient rights to control how much suffering they will endure.

“If other measures like hospice aren’t sufficient, it’s important for people to have control over how life ends, in a quiet and peaceful way, surrounded by family if they want to,” Applegate said.

Applegate says she is a longtime admirer of the hospice movement and thinks that it is an extremely important part of end-of-life care. But, she says, “Hospice doesn’t have a bag of tricks that solves every problem.”  

She describes the death of a close friend, a few years ago, from amyotrophic lateral sclerosis, or ALS. “For him, it wasn’t so much pain that was the issue, as losing the ability to swallow. So he would choke and, losing the ability to breathe effectively, he had to be suctioned out. It was just a slow, steady, increasingly difficult decline.”

He was “completely aware” of what was happening at every stage, she said, and since he was a member of an ALS support group, he had seen others’ decline, “so it was kind of a preview of what was in store for him,” she said.

He wound up controlling his own death through the only means open to him: voluntarily refusing all food and drink. “He starved himself to death,” Applegate says, which was “awful for him and even more awful, I think, for his family.”

Applegate herself has lived with multiple sclerosis for 40 years and survived colon cancer about a decade ago. “But from my own perspective, this isn’t an immediately urgent issue for me,” she says. “I’m doing very well and for all intents and purposes am quite healthy.”

End-of-life is not an issue for her personally right now, she says, adding, “But we should all be living our lives aware of the fact that life and good health are not guaranteed forever.”

 

The Enterprise — Elizabeth Floyd Mair 
Retired public-health doctor Mary Applegate had her Delmar home made wheelchair-accessible when her mother-in-law, who used a walker, came to live with her family. On her back deck, with a ramp visible behind her, Applegate talks about hospice, saying that, for some patients, it is not enough to ease their suffering. 

 

Death with Dignity

Both Craven Snowden and Applegate are members of a group called Death With Dignity-Albany.

That group’s director, Bonnie Edelstein, says she decided to fight for this right in New York State when she saw her mother and her aunt go through “prolonged and agonizing” deaths involving “one procedure after another to prolong their lives, which they really didn’t want.”

“What we find,” Edelstein says, “is that people explore every other option first. They want to live. They fight, struggle to stay alive, to have as good a life as they can. Sometimes they just feel they need another option,” she said.

The “other option” is a prescription from a doctor for a medication that would allow them to have a “peaceful death” if and when their suffering becomes “simply unacceptable,” Edelstein said.

Edelstein says the group started in 2015 and now offers about two dozen educational programs a year, each bringing in about 45 to 75 people. Topics range widely, she said, from legal issues such as creating an advanced directive to practical advice on how to talk about with family about preferences for the end of life as well as “more mundane things like decluttering your house to make things easier for your heirs.”

MOLST

For now, Craven Snowden said, she is very grateful for her Medical Orders for Life-Sustaining Treatment, or MOLST form. She calls this form “the best thing ever invented.”  

“Want to see mine?” she says, going to the kitchen and coming back with a hot-pink form several pages long that she keeps on her refrigerator, where she says any first responders would look for it.

The form is filled out at a doctor’s office, by patient and doctor working together, and it has the authority of a medical order.

It is much more detailed than a “do not resuscitate,” or DNR, order and spells out what the patient would want done, or not want done, in a variety of situations. The form is regularly checked and can be updated at doctor visits.

“Most people who fill one out do it when they have some condition,” Craven Snowden said. “Most people would have some idea of what they’re looking at, their future.”

She is healthy, but she’s 72, she said, adding, “In my opinion, when you’re 72, you can’t really count on what might happen to you.”

New York’s bills

Six states — California, Colorado, Hawaii, Oregon, Vermont, and Washington — and the District of Columbia allow medical aid-in-dying. (Hawaii’s statute, approved this year, goes into effect at the start of 2019.) Legislation is under consideration in many other states as well.

Among the requirements of the bills in New York’s assembly and senate are that:

— The patient must have a terminal illness, which has been diagnosed by the attending physician and confirmed by a consulting physician;

— The patient must make two requests: one orally and one in writing to the prescribing doctor;

— The written request must be witnessed by at least two adults who state that they believe the patient has mental capacity and is acting voluntarily. One of the witnesses must meet these criteria: not a relative of the patient; not entitled to any portion of the patient’s estate; and not an owner or employee of a facility involved in the patient’s care;

— A doctor, whether attending or consulting, who has any question about a patient’s mental capacity must refer the patient for a mental-health evaluation; and

— A health-care professional or other person will not be subject to civil or criminal liability for discussing aid-in-dying with a qualifying individual or for being present when the person self-administers the medication. Anyone who engages in negligence, recklessness, or intentional misconduct may be subject to civil or criminal liability.

The politicians

The lead sponsor in the State Assembly is Democrat Amy Paulin, representing District 88 in Westchester County.

Paulin said this week in an email that her bill is important because it gives people the option of dying on their own terms. She wrote, “I know this is a very challenging issue and there are very strong emotions on both sides.”

There are many people who would not avail themselves, she said, of the medical aid-in-dying option, even if it were legal in New York State.

“But many others,” she wrote, “would want the peace of mind knowing that in their final days it would be possible for them to choose to die on their own terms, in their own homes, surrounded by the people they love. I know I would want that option to face death with dignity.”

Is Paulin optimistic that the bill will pass?

Her communications director, Timothy Foley, said that Paulin is “very hopeful and very supportive that it can be passed in the future.” He qualified this with, “She thinks it is it is a tough conversation, and that sometimes these things take time.” The bill is, he said, designed very carefully to address major concerns and reflect best practices in other states.

“How long that takes?” Foley asked rhetorically. “Couldn’t say.”

In the State Senate, the legislation is sponsored by Democratic Senator Diane Savino of Staten Island.

Support for the bill doesn’t fall neatly along party lines.

Bryan Clenahan, who is of counsel to Savino, said that, while there is bipartisan support, some of the opposition to the bill is across party lines.

“It’s an issue that a lot of people have a hard time talking about,” Clenahan said.

‘Prolonged and painful’

Scott Barraco testified at a hearing in Albany at the State Assembly last month on Assemblywoman Paulin’s bill, which is currently in that chamber’s health committee.

Barraco, of Rochester, told The Enterprise he had testified about how desperately his girlfriend, Cathy Quinn, who died at age 44 in 2014, had wanted to see medical aid-in-dying legislation enacted in New York State.

Quinn’s death from tongue cancer was “prolonged and painful,” says Barraco. She had three surgeries to cut out parts of her tongue and to remove her voice box. She couldn’t speak, needed to eat and drink through a feeding tube, needed to breathe through a stoma, had an inches-long open hole in her neck from a surgical incision that wouldn’t close, and was “in a constant struggle to control her pain,” Barraco said.

Because there was no law in New York State that would allow her to decide when to end her own suffering, she spent much of the time she had left “to research and plan, secretly and alone, how to kill herself,” he said.

“To have a limited amount of time left, and to have to spend so much of it trying to figure out how to die was just cruel,” he said.

Barraco could not help her in any way or be present when she tried, because he was afraid he might get in trouble, he said.

Quinn tried once to overdose, alone on the patio of her home, using alcohol and her own morphine and fentanyl. She continued to breathe for hours, although shallowly and not very often, until eventually Barraco felt he needed to call 9-1-1. She was angry at him when she awoke in a hospital.

Next, she decided to stop eating in order to hasten her own death and had set a date for doing it. “It’s not an easy way to die,” Barraco said. “It can take weeks.”

Quinn wrote in her blog — owmytongue.blogspot.com — that it was a relief to know that she would stop eating on June 23. It was freeing.

She wrote: “Everybody keeps telling me that I should rest, and that I should take it easy, and that I should conserve my energy. My question is why? What the hell am I conserving energy for? So that I live a little longer? We all know that's the last thing that I want. My goal is to get up each day from now until 6/23 and cram as much living as my body allows into each and every day. That's the only sane thing I can think of doing!”

But things didn’t go according to Quinn’s plan. The day before she was to stop eating, she suffered debilitating seizures, became unconscious and never woke again, dying three days later in a hospice facility. “But it wasn’t the death she wanted,” Barraco says.

Myers v. Schneiderman

Eric Seiff is the only one still living of the three plaintiffs in the the landmark New York court case, Myers v. Schneiderman. This suit sought to allow mentally competent, terminally ill patients the right to receive a prescription for a lethal dose of drugs from a physician. Their argument was rejected last fall by the Court of Appeals, New York’s highest court.

“Our legislature has a rational basis for criminalizing assisted suicide, and plaintiffs have no constitutional right to the relief they seek herein,” the court decided.

Seiff, 85, is an attorney still practicing in Manhattan. He competes athletically, he says, as a runner. “Right now I don’t consider myself ill. I am so bloody lucky it’s incredible,” he told The Enterprise.

After a diagnosis of bladder cancer when he was, he said, “a kid of 80,” Seiff had his bladder removed and went on an experimental program of chemotherapy intended to stimulate his immune system to attack the cancer, which had spread to his lungs.

“It worked,”  he said. The medication was so strong that it damaged his liver, but, he says, “It knocked out the tumor,” and his liver went back to normal.

Seiff supports the medical aid-in-dying bills, although he is not involved in advocating for them.

He says that New York State is often slow to embrace what he calls “social-justice decisions that are picked up elsewhere in the country.”

New York, he points out, was the last state in the country to provide for no-fault divorce.

“Just think about that,” he says. “As urbane and well-educated and well-endowed as we are, I don’t know why that is.”

The other side of the issue  

Dennis Poust, director of communications for the New York State Catholic Conference, says that the Catholic Church opposes medical aid-in-dying, but cautions, “This is not primarily a religious issue.” The legislation is opposed, Poust says, by the Medical Society of the State of New York, disability-rights groups, advocates for the aging, and others.

Stephanie Woodward, director of advocacy at the Center for Disability Rights, said that “assisted suicide has a discriminatory, disparate impact on disabled people that is deadly and can’t be reversed.”

Data from the state of Oregon, where medical aid-in-dying has been allowed for over two decades, according to Woodward, shows that the top five reasons people choose assisted suicide have nothing to do with pain, but instead have to do with disabling conditions, like “feeling like a burden on my family,” or “feeling like you have a loss of autonomy or independence,” or “loss of bladder or bodily function control.”

Actually, in the data, these responses do not fall under a heading of reasons for wanting to die, but “end of life concerns.”

Woodward said, “These are all disabling conditions that people with disabilities face every single day, and we don’t believe that they should be a basis for wanting to die.”

The idea that they do make terminally ill people in Oregon want to die clearly shows the need for more supports and services, Woodward said, adding, “If our health care does not provide the services and support people need to live, then we cannot create an option to die and call it an option.”

Michael Burgess of Guilderland, the former director of the New York State Office for the Aging and a spokesman for the New York Alliance Against Assisted Suicide, said he likes to seek common ground; what people on both sides of this issue have in common, he emphasized, is concern for people who are suffering at the end of life.

“A lot of older people can be depressed and can feel like it’s time to go,” Burgess said, “or they feel like they’re being encouraged in that direction.”

Burgess wants to see hospice and palliative care expanded and more widely publicized, so that more people know more about it. Also key, he says, are social and spiritual support. Having a “network of care” in place that includes all of those elements, he said, even in states like Oregon that have enacted legislation, can often be enough, he said.

Difficulty of dying at home

Craven Snowden says her father, who died in 2002, loved his home more than anything. It was a “herculean task,” she says, to get him back there to die.

She encountered so much resistance, she says, from the rehabilitation facility he was staying in near the end of his life, that, she says, most people would have backed down.

But, because she was a doctor, she says, she could see how close he was to dying and knew how important it was to persevere.

When she was trying to convince the doctors in charge of his care to let her take him home, one of them took her out into the hallway and said to her, “very seriously, whispering, ‘You know he might die,’” she recalls, with a chuckle.

Her reply was: “And why do you think I’m taking him home?”

He got to spend the last four days of life at home, she says.


Corrected on May 25, 2018: The original story said the surviving plaintiff in the Myers v. Schneiderman case had believed he was terminally ill.  Actually, although he had cancer, the complaint said he wanted "to be sure that if the cancer progresses to a terminal state, and he finds himself in a dying process he determines to be unbearable, he has available to him the option aid-id-dying."

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