Medical Aid in Dying: Long Island woman with incurable disease considers using law

Joseph and Kim Willen shared a gentle embrace on their back porch as the sun set over Northport Harbor, a moment of respite as they faced an incomprehensible yet rapidly impending decision.

Joseph Willen wiped a tear, steadied himself and took a deep breath as he explained why his wife of 36 years, diagnosed with progressive supranuclear palsy, a rare and untreatable neurological illness that's stripped her of the ability to walk, speak and care for herself, could potentially choose to end her own life.

"She took care of us for about 30, 40 years," he said. "And she doesn't want anyone to take care of her. It is never something she would have wanted. But now it's our situation."

An impossible decision

The Willens find themselves part of a widening national debate about doctor-assisted end-of-life decisions as they consider whether a new state law offers Kim Willen an option she may want to take when her disease runs its course.

Last month, the Medical Aid in Dying Act went into effect across New York State. The law allows terminally ill patients with less than six months to live to request that a doctor prescribe them lethal medication to end their own lives. New York is now the 13th state, along with the District of Columbia, to legalize the practice.

To date, conversations about the bill, which was signed into law in February, have largely been dominated by legal, medical and ethical arguments from the act's most strident critics and proponents.

But behind those debates are countless families staring down an impossible choice, and its multitude of consequences. 

Last week, Newsday sat down with the Willens, along with their daughters, Hannah, Rachel and Grace, at their home on Suffolk's North Shore to discuss the illness that's upended their formerly idyllic life. Kim Willen, now severely limited in her ability to speak,  mostly uses hand gestures, such as a thumbs up or down, to indicate her intentions. 

She has decided, her husband explained, that when she's unable to communicate in any fashion and becomes permanently bedridden — "trapped in her own body" — she will consider using the MAID Act to end her life.

And while her body has begun to shut down, her cognition will remain intact, he said.

"When she gets to that point, there's no quality of life," Joseph Willen said. "I don't think a human being should have to bear that, nor their family." 

Several doctors on Willen's care team, he said, have agreed to provide her with the pills to end her life if they seek that path, and all members of the family support her decision.

Rachel Willen, 33, of Northport, said her mother has always been fiercely independent and determined to chart her own path.

"So the idea that a disease that steals so much control and autonomy from you — that she gets to make a decision that takes some of that control and autonomy back — it felt like a very 'her' move," she said.

An ugly disease 

Joseph and Kim Willen, both 63, met at Ithaca College in 1982 when they were both on the crew team. The couple dated for several years before marrying in 1990.

Joseph Willen formed the Melville-based Advantage Title, a title insurance company, while Kim Willen started her career as a speech pathologist before changing paths and going to law school, working for a number of years as an attorney in the private sector. 

When Kim Willen decided to stay home and raise their three daughters, she continued with her philanthropic efforts, volunteering at her children's schools, at the family's temple, including serving meals to the homeless, and helping to build homes in Nicaragua. 

"Our life prior to the diagnosis was basically a dream," Joseph Willen said. "We were very lucky, and we always knew that we were lucky."

That all, however, started to change in 2019 when Kim Willen began having difficulty with her balance and started slurring her words.

She was twice misdiagnosed before physicians at NYU Langone confirmed the final diagnosis about four years ago: progressive supranuclear palsy,  or PSP, a neurodegenerative brain disease affecting between six and 10 people per 100,000 that affects movement, balance, vision and swallowing. 

"That was a day I will always remember," Joseph Willen recalled. "It's not like you have cancer and you get stage 1, 2, 3 and 4. You're just told there's nothing we can do. This is going to happen and they're sure of it."

Dr. Nick Fitterman, president of Huntington Hospital, who has consulted with the family about Kim Willen's care, said PSP is a particularly cruel disease.

"You couldn't invent a more horrible disease," Fitterman said. "If you wanted to combine Parkinson's disease and ALS into one ugly disease, you'd have PSP. There's no treatment. No cure. And it is just progressive. People usually succumb to the disease in somewhere between six to eight years."

The disease progresses

Within the past year, the progression of the disease has begun to accelerate, family members said.

Kim Willen's ability to speak is now nearly completely gone; falls have become common, and she now requires round-the-clock care for basic needs such as feeding and bathing.

In addition, Kim Willen, who prior to her illness had taken up photography, shooting family portraits and landscapes, now also requires use of a wheelchair; her facial muscles can appear rigid and she frequently wears sunglasses because of vision issues. 

As her condition began to deteriorate, the Willens met with Jennifer Cona, an elder law attorney who advised them about advanced medical directives, incapacity, long-term care, end-of-life wishes and the potential use of MAID.

But determining how Kim Willen's case fits in with the law, and its very strict parameters, is not easy, Cona said.

For example, determining exactly when she would be declared to have six months to live is a challenge, both Cona and Fitterman said.

Meanwhile, to qualify for MAID, patients must be able to communicate — either verbally or in some other manner — that they want to take the pills, which also must be swallowed on their own.

Kim Willen's physical decline, Cona said, could take the decision out of her hands if the disease progresses faster than her ability to meet the law's parameters.

"The most important thing to understand is that this is not physician-assisted suicide," Cona said. "They request the medication themselves, and they have to self-administer. So there's no one that's forcing you to do this. No one can request it for you, and no one can give it to you."

Critics of the new law argue that it violates the oath taken by physicians and that the suffering outlined by families like the Willens can almost always be alleviated by adequate pain management and palliative care.

State Health Department officials declined to provide details about how many New Yorkers have used the MAID Act since it went into effect on Aug. 5, noting that data on utilization will be released next year in an annual report.

"Decisions about end-of-life care are deeply personal and best reached on an individual basis in consultation with a person's doctor, family and loved ones," State Health Commissioner Dr. James McDonald told Newsday in a statement. "The department has worked diligently and thoughtfully to establish guidance and to propose regulations designed to provide dignity and comfort to those who choose to use Medical Aid in Dying, while providing the necessary protections to ensure the law is not misused or inappropriately applied."

The Willens, family members said, have long supported the right of terminally ill patients to end their own lives with the assistance of physicians and had considered traveling to Switzerland, where the practice is less heavily regulated, if New York had not passed the MAID Act.

Finding joy 

Life for the Willen family now involves squeezing as much joy into whatever limited time she has left.

Joseph Willen said his wife continues to fight the disease in her own way, through physical and speech therapy and yoga. 

"We committed ourselves to find whatever joys we can, whatever moments we can, for whatever time we have left," he said. ... "Her spirit is so admirable and inspiring to all of us that we can't give in. We can't because she isn't."

In June, the family hosted an intimate wedding at their home for their daughter Hannah Willen, 30, and there is hope the family matriarch is healthy enough to travel to Florida for a celebratory party in November. 

Rachel Willen, meanwhile, is set to get married in April and said her mother indicated she plans to be there. 

"Our lives are completely different from what they were before," said Hannah Willen, who lives down the street from her parents. "We almost have a hard time remembering what our lives were like before this happened and how they've changed. We were close before but we are all as close as you can get now. We need each other and we need our parents."

Grace Willen, 25, said she's still in the "acceptance process" of knowing that her mother has limited time left.

"I honestly can't remember when I came to terms with it," she said. "Because I think sometimes I still haven't."

Grieving the living

The Willen children concede they've begun grieving their mother while she's still alive.

Grief for the weddings she won't attend. The births of grandchildren she'll never meet. The moments where they will rush to call their mom with news she'll never hear.

"It's a weird experience to have somebody here but also miss them at the same time," Rachel Willen said. 

Joseph Willen said he recognizes that everyone may not understand their decision, but urges those who may be tempted to criticize to "walk in our shoes before you judge."

"To go through something like this, you have to give her the respect of being the one to make these decisions," he said. "This has nothing to do with legally or ethically or morally. This is her life. Yes it's our life and it's our family. But it's her life. So do I want to lose her before she would go naturally? Hell no. But if she determines that she doesn't want to live that way and it's not worth it anymore ... it doesn't matter what I feel about it."

In the quiet moments late at night, Joseph Willen acknowledges he's envisioned those final moments, picturing his wife surrounded by her loved ones in the family home.

It would be easy to be bitter and angry, but Joseph Willen said he's grateful for the time he's shared with his wife, and any moments left to come.

"She has lived a very full life," he said. "She's impacted so many people in such a quiet and dignified way. She has a legacy. She has a wonderful legacy. That helps, and I know it'll help our kids. And when she could communicate, she was able to accept that she's really done a lot of good in this world in her own small way.

"We can all feel cheated, and we are going to," he said. "But what she's done in her years is worth many lifetimes compared to some other people."