Tuesday, September 23, 2014
One day in mid-June, Lee Hawkins awakened when an aide arrived to rouse her, get her showered and dressed, and prepare her breakfast. At age 90, Lee, a tiny woman with white, wispy hair and an infectious smile, could no longer complete these tasks on her own. But the helper left after an hour or two, and Lee was alone for the rest of the day.
Lee had a wheelchair but preferred her walker, which glided over wooden floors and carpeting equally well. She made her way slowly around the house, pushing the walker, taking small steps, resting in between. It was outfitted with a basket holding important items — house phone and Rolodex, church directory, pens and pencils, combs, magnifying glass, remote control for her TV, roll of duct tape, a device to pick things up. She kept her cellphone in her pocket and an emergency call button around her neck at all times. These were the things that allowed Lee to continue living the way she wanted, alone in her own home, long after her children began wondering if she was safe.
She had fallen so many times that she had grown fond of the EMTs who arrived when she pressed the emergency button to summon help. But she always argued the point when they wanted to take her to the emergency room.
Lee was nearing the end of her life and she was well aware of this. She had no terminal illness, other than the one we all suffer from — human mortality — but she felt her time to die was imminent. And she had a plan.
Lee Hawkins died Sept. 2 after carrying out that plan. It was a peaceful death, brought about because she stopped taking in food and water, a method now common enough to have its own acronym: VSED, which stands for voluntarily stopping eating and drinking. Neither Lee nor her doctor saw this as an act of suicide, but something far more natural. Today, the Gazette launches a three-part series chronicling Lee’s decision to bring about her death and the health care workers, family members and friends who accompanied her on a journey of her choosing.
A vibrant life
Born in 1924, Eleanor “Lee” Hawkins was raised in Carmel, California, the only child of a teacher and a grocer. After graduating from the University of California at Berkeley, she bicycled by herself around Europe in 1948 and 1949 and settled in New York City. There, Lee married Roger Hawkins, a man 13 years her senior who had been divorced, a fact that did not please her mother.
They married in 1950, and moved to Staten Island in 1955, where they raised their three children, Sue, Jeremy and Rebecca. Roger Hawkins commuted to the city for his job as project manager for a commercial art shop.
Their large Staten Island home was a bustling hive. Lee earned her master’s degree in 1962 and once her children were in school, she embarked on a career as a public school teacher. She was active in the Unitarian Church, where she found like-minded people. She organized Camp Fire Girls troops for both daughters that lasted for many years; Sue’s group was so tight it had reunions in 1976 and again in 2012. Birthday parties were often themed affairs with activities coordinated with elaborate cakes.
Even as she embraced life, Lee always felt comfortable talking about aging and death, subjects many treated as taboo. Even years back when she was the picture of health, she discussed her thoughts about death and the tendency of people to live long past the time when they could care for themselves. She read a lot and held strong opinions about the money spent on medical care for people at the end of life, which she felt was a waste of precious resources that could be devoted to people in poverty.
“It’s a social justice issue,” she’d say.
The family had a summer cottage on a lake in Sturbridge. After retiring, Lee and Roger decided to leave Staten Island to move closer to their cottage and their children, who had settled in the Northeast. Her longtime best friend, Grace Ilchuck, and her family also bought a cottage on the lake, where the families summered together for many years. While searching for their new home, Lee and Roger attended a Sunday service at the Unitarian Society of Northampton and Florence on Main Street. They loved the sermon and the people they met. Somebody told them about the Lathrop Retirement Community under construction off Bridge Road. After the service, they drove to look at the complex and put a deposit down on the spot.
They moved to the new unit at the end of Goldenchain Lane in 1991. The Unitarian Society became the hub of Lee’s and Roger’s life in Northampton. Both made connections through committee work, circle dinners and other social activities. Roger joined a men’s group where the men once decided to try being more like women by calling each other for no particular purpose, an experiment that quickly went by the boards. But the connections were strong.
When Roger died at age 94 in 2004 — in his obituary, his daughter Sue attributed his death to pneumonia and “a well-worn body” — members of his men’s group spoke at his memorial service. After his death, Lee continued with her deep involvement. She was on the social justice committee and for many years was co-chair of a group that provided meals and other help for society members who became ill. When she entered into a period of increasing frailty and old age, members rallied to help her with rides to services and trips to the grocery store.
But that help wasn’t enough as she aged and grew more frail. Though not one to talk about physical ailments, Lee found herself in constant pain. She was not a complainer, but there were many ways life was hard; she endured the loss of things many people consider vital to a good life. She’d stopped driving four years prior, at age 86. She’d lost the focus and energy to read a good book and could no longer reach down to take her shoes off before bed. She was rapidly losing the ability to hear, to get herself out of bed, or to easily open the refrigerator door to ponder lunch options.
She had always told her children that under no circumstances would she move into a nursing home. Her children lived in New York and Vermont, each at least two hours away. Lee did not want to leave her life in Northampton, nor did she want to move in with them. She told them, as she had before, that a planned death, in her mind, was an acceptable option if she couldn’t care for herself or do the things she most enjoyed, like church on Sundays. Her plan was to stop eating and drinking, a method that seemed — to her, at least — natural and peaceful.
In June, four months after Lee turned 90, she told her daughters and some friends she’d decided the time had come to implement her plan. She felt she’d lived a good, fulfilling life, and had recently finished up some projects and gotten certain affairs in order. She still did not consider this suicide. August, she said, seemed a convenient time, easier for her children to spend time with her while she died. Her children repeatedly said they supported her, but they didn’t want their lives to be a factor in her decision. With a mix of cheerful bravado and sadness, her daughter Sue told her, “Your death will never be convenient.”
A decision made
On June 30, Lee and her daughters, Sue and Becky, met for the first time with Dr. Jeffrey Zesiger in a conference room at Cooley Dickinson Hospital. They were in search of information. Lee wanted specific details about what it would be like to stop eating and drinking.
Zesiger, a hospice and palliative care specialist, is a soft-spoken man with short cropped gray hair and a quick smile. He asked Lee what brought her to the meeting.
Lee said that while she was fully engaged in life now, in a couple of months, she expected to be gone. Recently, she had said goodbye to her dentist, whom she knew she would not see again. She said she felt that she was in a chrysalis stage between a caterpillar and a butterfly, and that balancing between the two worlds felt odd, in some ways uncomfortable.
In other ways, it was comforting. Word was getting around about her plan, prompting conversations she wouldn’t have had if her death were left up to chance. She said she liked the opportunity to consciously say goodbye. She also wanted no element of deception with her death, as sometimes happens with suicide.
“It’s the sweetness of this kind of dying that I like,” she said. “It is so lovely to begin to have deep conversations and communication with people you know in a different way.” Her daughter Sue asked about the timing — how did Lee know now was the right time, as opposed to last year or even a year from now?
Lee said it wasn’t easy to actually pick a date to start the process. “I don’t know that tomorrow will be a good day or even what makes a good day,” she said. The one thing she was certain of was that she wanted her children around her when she died. “They are the most important people in my life,” she said. “It’s not going to be easy for me to leave them, and for them to leave me.” But how did she know she was ready, someone asked.
“I’m more ready now than I would have been a couple weeks ago,” she said. Lee offered a glimpse of how her life had changed, saying she felt fortunate to be lucid, but that everything was a tremendous effort. Tasks that once took an hour — like making soup stock — now stretched over several days. Her refrigerator was starting to feel like a dangerous place because to open the door, she had to let go of her walker to grab onto the handle. With that, she risked losing her balance, falling backwards, and needing to summon the EMTs.
Here, Zesiger stepped in to guide the conversation. “Lee,” he said softly, kindly, “I want to ask you how you’re feeling.” He went through a checklist. How was her eating? She said she had no appetite and it was a chore to finish breakfast. Was she in pain? Lee reported that she was in pain pretty much all the time, especially after she’d been in one position for an extended period, which meant pain often interrupted her sleep. All her joints hurt. Her mobility issues had impacted her social life — she used to walk up to Lathrop’s meeting house, and no longer could do that. How was her sleeping? She tended to sleep a few hours a night until the pain awakened her, she said. Consequently, it was hard to feel rested, so she fell asleep multiple times over the course of a day, including once while holding a cup of hot tea.
She reported no nausea, shortness of breath, depression or anxiety.
These details emerged only when Zesiger asked specifically and directly. Lee believed complaining made things worse. When Zesiger asked her to size up all her symptoms and her life to rate her general sense of well-being she said: “Great.”
But after Zesiger’s gentle probing, it was clear to everyone in the room that Lee had chosen this summer to die because physically, she was ready. In a certain way, she’d had her fill, though she wouldn’t put it that way, because that might seem like complaining.
She acknowledged that a partial answer to the “Why now?” question was that she finally had reluctantly accepted she should no longer live alone. The time to act is now, she said, simply because “I still can.” Lee asked Zesiger to describe what death by stopping eating and drinking would be like. He said it would take about two weeks, possibly less, and that stopping drinking would be the key. After a few days, she would not feel hungry, but feeling thirsty would be challenging. She could be comforted by keeping her mouth moistened with a wet sponge on a stick. After several days she would likely sleep most of the time. In the second week she might summon enough energy for a special visit but would generally wake up for only a half an hour at a time.
Pain medication would help keep her comfortable but would not hasten or prolong the process. She would need care and companionship 24/7. Hospice could provide, or the family could hire, professional caregivers for daily living and medical needs, while family and friends would be present for comfort and companionship.
Zesiger turned his attention to Lee’s daughters, asking them how they were feeling about their mother’s plan. Both said they wanted to support their mother’s wishes, but worried that with the wheels in motion, Lee might not feel she could change her mind if she had a change of heart.
Becky noted that her mother had always valued independence, choice and feeling in control of her life — and she’d never liked having things done for her. She could support Lee because she knew this was what her mother wanted, but it was painful, though she didn’t want to talk much about that for fear it would make things harder for Lee. One other thing: If her mother complained of being thirsty and asked for water, she said, fighting back tears, “I don’t think I could withhold it.” Sue said she knew that no matter how well planned her mother’s death was, there would be sadness and grieving. Yet she acknowledged that her mother’s quality of life had diminished greatly. She said she did not think what Lee wanted to do was unreasonable.
Zesiger suggested they look at this like taking a car ride, and that at any point on the ride, they could choose to take a break and get off the road. Lee would be in charge, and if one day she asked for water or juice — or champagne, for that matter — they should feel free to give it to her. She could change her mind at any point. Zesiger told them that no matter how much planning they did, there would always be elements of uncertainty and factors beyond anyone’s control.
“I don’t think this has to be perfectly done because there’s nothing perfect about this,” said the physician.
He said Lee qualified for hospice care because in his medical opinion she wouldn’t live beyond six months even if she continued to eat and drink.
This declaration ushered in a new chapter in Lee Hawkins’ life. Zesiger gave them all homework. Sue and Becky were to make an appointment with a hospice social worker. Lee should start thinking about where she wanted to die.
Coming tomorrow: With hospice lined up, help is on the way.
Laurie Loisel can be reached at firstname.lastname@example.org