A matter of choice

The process centers around ensuring that a patient not only has a diagnosis of a terminal illness, but has agency in the decision process.

The window of opportunity for those who go through the legal process to use the prescription is sometimes very small, and some participants miss their window of opportunity, due to the stringent legal safeguards embedded in the law. Others hang on to the prescription as a future option but they ultimately don't follow through.

"My mother lived to the age of 102 and had to be in a wheelchair for many of those last years of her life," Hazelton said.

"I don't want to live to 102," he continued with calm conviction. "And I don't want to have a long death after lying in bed for years. I'm a farmer. I belong outdoors."

Jeanette Hazelton Fairhurst, Hazelton's youngest daughter and his healthcare proxy, said that her father had come "so close to dying when he had little ability to breathe a few months ago during a bout of pulmonary edema, after a resurgence of congestive heart failure."

"It was tortuous to know how he struggled," said Fairhurst, a retired scientist. "When he got through the treatment and recovered, he was clear that he didn't want to have that experience again," she said.

'It's not for everyone'

"Act 39 is not designed to be a quick decision," said Joan Martin of Brattleboro, whose life partner, Joe Thompson, died of pancreatic cancer on April 29. "The process can take months."

Thompson was diagnosed in October, "and we didn't receive the prescription until late December," she remembered. "The process is a thoughtful one."

The qualifying criteria for medical aid in dying under Vermont's Act 39 includes that a patient must be at least 18 years of age or older, have a terminal illness with a prognosis of six months or less to live, be capable of making their own health care decisions, be able to make an informed and voluntary request to their physician, and be able to self-administer the medication.

That's not all.

"Act 39 is not a decision that happens quickly. Dad researched it well," said Fairhurst, "and took his time in learning about it."

Those who wish to qualify for Act 39 must also make a written request that must be signed in the presence of two witnesses who are at least 18 years old. They sign the document to affirm that the patient appeared "to understand the nature of the document and to be free from duress or undue influence at the time the request was signed."

Further, the two witnesses cannot be the patient's physician or relative or otherwise have a conflict of interest or connection.

A second physician must confirm that the patient meets the required qualifying criteria.

"There is also a lot of paperwork to fill out," Martin said. "That took a lot of care and time as well."

Jeanette Hazelton Fairhurst agreed.

"Dad also took his research many steps further than he was required to," she said. "He also considered his pastor's opinion and discussed his thoughts with many more family members and close friends before he made his decision. And he did this over a long period of time."

She observes the irony that she has spent her whole life "working on biology, medicines and pharmaceuticals," said Fairhurst.

"Over 35 years, I've been working toward making medicines that make a difference, but I fully supported his decision, as did the majority of my family," she said.

Don Hazelton planned his death to the last detail, inviting The Commons to follow his last days and write this article to educate others about his personal decision and Act 39.

"It's not for everyone," said Hazelton soberly, "but we all deserve to know about all options available at end of life."

"I've had all of my papers in order for some time," he said with confidence. "My children know what I want and how I wish to have things handled. It's important to me that we've all taken the time to speak openly about my decision," he said.

Hazelton's wife of 68 years, Carolyn "Bunny" Hazelton, died five years ago.

"I don't want to leave this Earth like Bunny had to. She was in a wheelchair for years, and in the end she had to be in a nursing home," he said firmly. "I want to choose my time and place to die."

Hazelton's daughter also recognized that even though her father chose Act 39, he made other choices along the way, too.

"Dad had a cancerous tumor in his chest removed 30 years ago. He might have had two years but has lived an additional 30 years, for which we are so grateful. However, during that surgery, his diaphragm was injured, so he had pneumonia regularly."

During the last round of pneumonia, Hazelton decided to accept medical assistance.

"Act 39 is always a choice," says Fairhurst, "but at that time, he decided he wanted treatment."

She described Act 39 as "a very well thought-out law."

"The patient doesn't have to choose to use the prescription; it's simply a choice made available to the dying person to use or not," she says.

'Way too personal a medication to drop in the mail'

"I am bringing some choice to these folks who are often suffering through a great deal of pain," said Steven Hochberg, the owner of Rutland Pharmacy, the only pharmacy at present licensed to dispense the lethal medication to those approved to purchase it under Act 39, though he anticipates at least one other pharmacy will begin offering the prescription within the next few months.

For now, though, it's still just him.

"I drive all over the state to deliver this medication personally," Hochberg said. "I think this is way too personal a medication to drop in the mail."

A pharmacist for 50 years who runs his business with family members, Hochberg has seen a lot.

"I know what a terminal patient goes through," he said. "I know what their family goes through."

Hochberg said he sees a pattern in his interactions with patients who have made this difficult decision when he tells them what will happen when they drink the lethal cocktail.

"When I tell the patient that [...] they will, within minutes, be asleep and at peace, they get this big grin on their face," he said.

"They have peace, knowing that they are in major discomfort in their lives. They are ready," he says quietly, and with a great deal of empathy in his voice.

Hochberg spends as much time as is necessary with each patient, and he provides them with his contact information and all the relevant information in written form.

He also educates the patient's family on how to safely dispose of the medication should the patient decide not to use it. He welcomes phone calls and last-minute questions.

Many times, even months later, family members will call Hochberg to let him know when their family member has died.

"The family was very grateful they were no longer suffering," he said.

During his visit with patients and their families, Hochberg explains that there are three parts to the process of using the prescription.

The patient first takes a pill to alleviate nausea and vomiting, then about 20 minutes later takes a second pill that will put them to sleep.

The second pill is swiftly followed with the lethal powder mixed with apple juice. He is careful to explain that only the patient may hold the solution as they drink it.

Before he leaves each home, Hochberg reminds the patient that they are not under any pressure or obligation to use the medication.

"It's totally up to you," he tells them.

Last year, adjustments to the law added protection for the prescribing pharmacist and other health care professionals involved in the process.

"We go to school to learn how to help people," Hochberg said in an interview with Vermont Public last year. "That was always my view of what pharmacy is. And this is the ultimate help."

Joe Thompson died before he was able to use the prescription. Martin remembers that day clearly.

"The pharmacist had reminded us that sometimes the window of opportunity can be small," she said.

Thompson was unable to eat and was having trouble drinking. He thought it was a temporary setback, so he didn't consider using the prescription.

He died that night in his sleep.

He missed his chance, says Martin, but "Act 39 was one of his options."

"While it didn't work out, Joe was still comforted by knowing he could have chosen the prescription anytime he felt like he'd had enough of being in pain," she said.

'The situation is far different when you don't have any options for recovery'

Not everyone is supportive of Act 39. Those who object to it often do so for religious, ethical, or other personal reasons.

Don Hazelton was aware of the naysayers. "I realize it's not for everybody," he said.

"There are people who weren't supportive at first of my decision, but they also didn't understand in the beginning that this wasn't a snap decision," Hazelton said in the days before his death.

"Many don't know all that is required of those who choose this path," he said. "Once they did, they became more supportive."

Hazelton's pastor, Shawn Bracebridge of the First Congregational Church in Dummerston, supported him in making his own decision.

"I think it is a good and viable option for people who want to avoid a lot of pain and suffering," Bracebridge said. "There is a whole process to it, and you go through that process with your loved ones. Act 39 is not intended to be decided quickly."

Bracebridge went on to explain that "we all need to keep our own views and to take things like this into our own consideration," he said. "It's a personal choice for each individual."

Jeanette Hazelton Fairhurst brought a unique perspective to her family about their father's decision.

"I've had discussions with a couple of people who objected on religious grounds," she said. "I lost my daughter to suicide, yet I am supportive of those with a terminal diagnosis choosing when and where they die.

"I want to lend my voice to the discussion because Act 39 is so important," Fairhurst said.

She described the process as thoughtful, lengthy, and supportive of both families and their loved ones.

"While he had some good days, Dad knew he would watch his body fail further until he became bedridden and in constant pain. He wanted to avoid a prolonged death. In cases like Dad's, you mourn what's gone, but you also know that the future wasn't going to be a good one. His body was giving out."

Joan Martin agrees.

"This decision to end one's suffering is a very personal one," she said.

Medical aid in dying can be difficult on surviving family members - "including some family members who weren't supportive of Joe's personal choices about his cancer," Martin said.

Joe Thompson chose "a middle-of-the-road" chemotherapy regimen, she said. One family member thought that he should have fought harder.

But Thompson, a longtime paramedic with Rescue Inc. in Brattleboro, "wanted to be able to continue working, and that [was] his choice," Martin said.

She added that the family member was also deeply against Thompson considering Act 39.

Martin said that Thompson made it clear from the beginning that he alone would oversee all decision-making concerning his health, and he proceeded with his cancer treatment as he felt appropriate.

"And that included Act 39 to end his suffering, if and when it came to that point," she said.

Thompson's daughter, Kate Boudreau, also wholly supported her father's choices.

"For me, my dad's decision wasn't that hard," she said. "The situation was hard, but that decision wasn't. I'd had cancer in the past, and there were options for me. I survived the illness.

"But there were no options for him," she added, with sadness in her voice.

"The situation is far different when you don't have any options for recovery," Boudreau observed. "All that is left sometimes is a painful death."

'I don't want to fall and have to cancel my plans'

Very few people knew of Joe Thompson's decision to use Act 39, outside of a few family members and close friends.

The situation was entirely different for Don Hazelton, who put the word out to a lot of friends and family during his last week of life.

Hazelton had planned out exactly how he wanted his final day on Earth to be, and he made his needs known to his family, who followed his wishes to the letter.

"All of us kids felt that it was Dad's story to tell. All we said to people was that you might want to call or check in because he wasn't doing well. But Dad had other ideas," Fairhurst said, laughing.

Fairhurst's brother, Ted Hazelton agreed.

"It was hard and strange because his mind was still so good," said Hazelton, who lives in Kansas. "Us kids were putting out the word that he would be gone by the end of the week. Then friends and family called him or showed up to visit and found him sitting in his chair smiling, laughing, and enjoying their company."

But Ted Hazelton also noted the changes in his father's physical body.

"I was home in July to visit him and came back again in January. He had deteriorated quite a bit in just those five months," he said.

"Dad's big fear was something happening to him so that he couldn't take the prescription" - including "a huge fear of having a stroke and not being able to express what he wanted," Ted Hazelton said.

If his father lost his ability to positively affirm his desire to end his own life, he would become ineligible for the Act 39 process. Family and friends who would knowingly aid him in his plan, would find themselves stripped of the legal sanctuary the law provides.

Don Hazelton treated himself gingerly during his last week of life.

"I've come this far," he said as he stood carefully to hug a visiting friend, the day before he would die. "I don't want to fall and have a head injury and have to cancel my plans."

His sons, Ted and Steve, are both retired paramedics.

"I fully support Act 39 and my dad's decision," Steve Hazelton said. "In my 40 years in emergency medical services, I cared for many patients who were terminally ill."

Early in his career, he said, "our protocols required us to aggressively treat anyone who became or was unconscious, even when we realized it might not be what the patient wanted - even if they had clearly stated their wishes otherwise to us moments before. If the ambulance was called, by law we had to act."

Steve Hazelton described the ability to respect a patient's wishes through legal means - including living wills, advance directives, and do-not-resuscitate orders - as "one of the best improvements I saw in emergency medicine over the years."

"We could shift our focus to supporting the family through a terminally ill patient's dying process instead of prolonging their dying process," he said, as he and his siblings were doing exactly that for their father.

'It pleased him greatly to have done things in this order'

Last July, the Dummerston Historical Society celebrated Don Hazelton Day - an event at the same one-room schoolhouse where Hazelton had attended school 80 years earlier.

A large group of friends, family, and neighbors packed the event, filling the room with laughter and appreciation for the local man and telling stories about Hazelton and his accomplishments.