On a winter day in 2023, Joan Cenedella turned to her partner of almost 30 years, Fran Volkmann, and said she would like a bowl of chocolate ice cream. Volkmann said she could get it for her, “but you know it will slow down what you’re trying to do.”

“Oh s***!” Cenedella exclaimed, turning away.

The exchange between the two women was on the fifth day after Cenedella’s decision to voluntarily stop eating and drinking. She died on the 11th day, surrounded by loved ones who had gathered to be with her and support her throughout the process.

“It was very empowering, and she never wavered,” Volkmann said. “Joan loved her life, she didn’t want to give it up. But she felt like that decision had already been made for her.”

Dying is one of the only assurances in life. Most people have no control over when and how it inevitably arrives. But in the past decade, a growing “death with dignity” movement has been helping people regain some autonomy in death. Some people may decide to stop eating and drinking with the support of loved ones keeping them comfortable. In the growing number of states that are passing laws allowing medical aid in dying, other people might work with their doctor to receive life-ending medication.

For many terminally ill patients, these options allow them to take control over their deaths from a disease that has controlled so much about the last moments of their lives.

“It’s about alleviating suffering, and it’s about ensuring that adults who have lived by their own values their entire lives have the option and the autonomy to bring those values into how they plan their death,” said Melissa Stacy, the Northeast regional advocacy director for Compassion & Choices Action Network, a nonprofit that advocates for improving and expanding end-of-life options.

Cenedella, who took control over her death after being diagnosed with Alzheimer’s disease in 2021, was afraid of losing herself.

“We had Post-Its all over the house,” Volkmann recalled. “She wanted to continue to do her stuff in the house. She wanted to be able to make her contribution.”

It had always been Cenedella’s job to make coffee in the morning, so there was a Post-It in the kitchen with steps for making the coffee. On Cenedella’s CPAP machine, a Post-It listed the steps for cleaning it. Another Post-It reminded her of things to take while leaving the house.

Alzheimer’s had already taken Cenedella’s choice from her. She would die. In choosing to voluntarily stop eating and drinking, she was taking back control over the when and how.

Laws surroundingautonomy in death

Autonomy in death and laws around it are increasingly discussed globally, nationally and in Massachusetts. In the United States, 11 states and Washington D.C. have laws that allow for medical aid in dying, also called physician-assisted death. Voluntarily stopping eating and drinking, or VSED, is legal in all 50 states.

VSED typically takes around two weeks. Patients slowly begin to sleep more as their body shuts down and ultimately die from dehydration. It is not painful, though there can be uncomfortable symptoms to manage, like a dry mouth, Dr. Jeffrey Zesiger, medical director at Hospice of the Fisher Home in Amherst, explained previously.

Medical aid in dying is another option available to patients with terminal illnesses, wherein doctors prescribe life-ending medication. Legislation differs slightly between states, but generally, patients need a six-month prognosis confirmed by two doctors; they must request the medication, with a waiting period; and the patient must have full decision-making capacity, often requiring assessment from a mental health specialist.

Medical aid in dying is not legal in Massachusetts, though it is in nearby Vermont. Legislation to legalize it has been introduced in the Massachusetts Legislature frequently since 2008, and in 2012, a ballot question that would have legalized it was narrowly defeated.

“I long believed that people should have the ability to decide to end their lives when they’re suffering from a terminal disease,” said state Rep. Lindsay Sabadosa, D-Northampton, a co-sponsor on the House version of the bill and member of the Joint Committee on Health Care Financing. “I know that when people are at the end of life, and they really are in a place where they no longer have any quality, this is something that should be available for those who decide to take the step.”

In the 2023-2024 legislative session, the bill progressed out of both the Joint Committee on Public Health and the Joint Committee on Health Care Financing, the furthest it has ever made it in the legislative process. The bill, “An Act Relative to End of Life Options,” has been introduced again this legislative session, and lawmakers are optimistic about its chances.

Opponents of medical aid in dying include people from the disability community who have concerns over possible exploitation of the bill, and the Catholic Church, which believes that life is from conception to a “natural death” — the same belief that leads them to oppose suicide and abortion.

The Center for Disability Rights, a New York-based nonprofit, mentions on its website concerns that people will be coerced by caregivers to end their lives, that it will be used by insurance companies to cut costs, and that physicians may misjudge quality of life and that can impact the “within 6 months of death” requirement in medical aid in dying bills.

In the U.S., medical aid in dying is not available to patients with Alzheimer’s or dementia in any state because the medication must be self-administered by a “mentally capable” person, and patients with dementia do not usually have that capacity within six months of death. In countries such as Switzerland, the Netherlands and the Canadian province of Quebec, Alzheimer’s and dementia patients may access medical aid in dying.

Taking control of death

Cenedella had decided she wanted to be in control of her death. But before settling on voluntarily stopping eating and drinking, she and Volkmann considered other options to end her life.

Initially, the two turned to nearby Vermont, which legalized medical aid in dying in 2013. A 2023 court case made it available to out-of-state patients. However, they quickly discovered that Alzheimer’s and dementia are not qualifying illnesses for medical aid in dying within Vermont law.

Volkmann was “surfing the web” for options, with Cenedella considering many. When an acquaintance offered to get her fentanyl, Cenedella was appalled and did not want to break the law. They considered collecting pills, but when a doctor friend pointed out the importance of knowing exactly what they were doing or risk ending up in a vegetative state, they threw them out.

Switzerland permits medical aid in dying for Alzheimer’s patients, and Cenedella and Volkmann looked into Dignitas, a nonprofit group that brings people to Switzerland for “accompanied suicide.” Dignitas requires that patients have “sound judgement,” but patients in the early stages of Alzheimer’s and dementia have been accepted before. Yet, that wasn’t what Cenedella wanted.

“Joan said, ‘Why would I go to Switzerland? I want to die right here in my home,’” Volkmann recalled. Cenedella ultimately did not think medical aid in dying was the right choice for her.

Volkmann remembers Cenedella saying, “‘How would I say goodbye to everybody if I just died all of a sudden? I think I just like the idea of just fading away and having my friends around me and the people I love.’

“For her, I think VSED really was the right thing to do. And she felt that way,” Volkmann said.

Doctor does about-face

When Dr. Shelly Berkowitz, a family practice physician for more than 40 years, first heard about medical aid in dying, she was against it. As the daughter of two Holocaust survivors, Berkowitz had grown up “exquisitely sensitive to and hyper aware of the ethical issues that could lead, or that lead, in the right circumstances, to the loss of human dignity, both in life and in death.”

The Nazis had a “euthanasia program” that systematically murdered people with disabilities, and “with this image that was really indelibly inscribed in my childhood memories,” Berkowitz feared the possibilities of the law.

Yet, today, Berkowitz is a staunch supporter of legalizing medical aid in dying in Massachusetts.

“I started looking at the bill and looking at the wording of the Massachusetts Act Relative to End of Life Options, which has been tweaked to be even more narrow and adding even more safeguards because of reservations. It became even more foolproof in terms of unintentional consequences,” Berkowitz said.

As a daughter, Berkowitz said she worried over possible exploitation of the bill, and as a physician, she was “squeamish” over possibly being asked to participate by a patient. However, as a human being, she understood the importance of having options at the end of life that preserve “personal dignity and personal choice.” After watching her parents die through prolonged, painful illnesses and investigating the law and the safeguards further, Berkowitz became a strong supporter of legalizing this option.

“No one’s being coerced, and no one else is expected to believe this or necessarily want this or access this for themselves. It is truly choice,” Berkowitz said.

A key reason that many oppose medical aid in dying are concerns that the legislation could be used to target vulnerable people or coerce them into ending their lives. Additionally, the Catholic Church prohibits suicide on moral grounds, and considers medical aid in dying to be suicide.

“The Catholic Church’s position on life is, life is precious and a gift from God from conception till natural death,” said James Driscoll, executive director of the Massachusetts Catholic Conference.

Driscoll has other concerns with the end-of-life options bill, too, including the possibility that doctors may be wrong about a patient’s six-month prognosis or that a patient “who may be physically disabled and depressed, or fears being a burden, may be subject to undue influence by others to take the drug mixture.”

“What I always say is, elected officials should be less concerned about ending people’s lives and more concerned about increasing access to palliative and hospice care across the commonwealth, in particular, to those underserved poor and minority communities, which often are underserved in the state,” Driscoll said.

However, some within the disability community support the bill.

Cynthia Chamberland is a retired social worker and disability rights activist who became quadriplegic after a spinal cord injury at 19. She and Berkowitz have both testified before state representatives in support of the bill.

“The criteria they have in place are good safeguards,” Chamberland said. “Why should you make someone else’s choice for them? Until we get this law passed, it’s a hardship for people.”

For Chamberland, her support for the bill stems from her belief that people should have control over their bodies. She understands what it is like to be vulnerable and in extreme pain, and wants people to have this option available to them.

Chamberland emphasized that people with disabilities receive inadequate resources at independent living facilities and in institutional care — part of why she also advocates for improved health care access and reforms. However, she pointed out that this law is for people who are terminally ill, not those with disabilities. With the strict eligibility criteria, she does not believe the bill poses a coercive risk to the disabled community.

As of 2019, Disability Rights Oregon, an organization mandated by federal law to investigate complaints of abuse or neglect of people with disabilities, reported it had never received a complaint of a person with disabilities being coerced to access medical aid in dying.

“It’s not a risk of taking advantage of or exploiting someone with a disability,” Berkowitz said. “On the contrary, it’s preserving somebody’s free will and choice.”

Choice, autonomy

Choice and autonomy in death are the goals of advocates for medical aid in dying. For Joan Cenedella, who made the choice to end her life through VSED, she was in control throughout the process, supported by her loved ones and her doctors.

The last thing Cenedella wanted to do before she died was take her beloved dog, Lucy, to the dog wash. Cenedella knew she would be spending a lot of time in bed, and Lucy would likely join her.

Her health care provider, Alison Sinkler, had a rollator — a sort of walker. On the second day of the VSED process, Sinkler drove the rollator in her car to the dog wash at the Big Y, and in their own car, Volkmann, Cenedella and Lucy went on what would be Cenedella’s last outing.

“Alison comes around with the rollator, and Joan gets on it and we process into the dog wash. Give Lucy the bath of her life,” Volkmann said. “Joan just was so pleased by that.”

For the week and a half during which Cenedella went through VSED, she was surrounded by loved ones. One of the most remarkable things about helping Cenedella do this, Volkmann said, was the development of their “core group.” Their community at the Lathrop Retirement Community supported them, too.

Volkmann said Cenedella was engaged and present throughout the first days of VSED, a “people person” who enjoyed being with the core group and other friends. Eventually, she started sleeping more.

Cenedella’s support system worked to keep her comfortable, moving her to prevent bedsores, giving her medications to prevent discomfort and eye drops to ward off the dryness caused by dehydration. She died on Feb. 2, 2023.

“The effect of all of this on me, this deep grief, but, also, I was so proud of her,” Volkmann said. “I was so just kind of overwhelmed with gratitude for all these people who helped us and the hospice and the doctor and Alison and our community, and I just felt like I was so lucky, and so was Joan.”

Naomi Scully-Bristol is a recent graduate of Smith College. She has previously interned at the Daily Hampshire Gazette and Fairfax Times, and was news editor of The Sophian. This article was written for the Smith College Journalism Capstone class advised by Dusty Christensen.