BRATTLEBORO — Planning for one’s last days or potential emergencies is challenging but it can also bring a sense of comfort.
“It’s a hard subject to talk about,” said Sandy Hartley, 71, of Putney. “But going through my mom and dad’s death really helped me have questions right there at the forefront.”
Hartley described feeling relieved having made decisions about medical responses and end-of-life care ahead of a crisis or later in life. She asked a nephew in Maine and local friends to sign paperwork allowing them to make choices in the event that she no longer can.
With the ongoing COVID-19 pandemic, Hartley filled out a form about whether she would want to be hooked up to a ventilator.
“I just imagine myself getting on a conveyor belt and thinking, I may not want that,” she said, “I better decide that now.”
Ironically, the number of local residents seeking help with advance directives through Brattleboro Area Hospice has dwindled during the COVID-19 pandemic.
“Quite surprisingly, we’ve seen a drop off,” said Don Freeman, coordinator of hospice’s advanced care planning program Taking Steps Brattleboro.
Prior to the pandemic, his group served about 25 to 30 people a month. Now, he said, they’re lucky if they help 10 people.
Freeman believes the reduction might have to do with people wanting to keep their social circle small out of fear of getting sick, and also generally not wanting to discuss the topic at a time when death is constantly coming up in the news. He said similar programs in Vermont have experienced the same trend.
Hospice is offering group informational sessions weekly via Zoom videoconferencing software. Individual Zoom sessions and phone conversations also are available. With new restrictions on gatherings due to the pandemic, the group is backing off in-person meetings for now.
Hartley’s mother died in 2001 after a fight with lung cancer. Through that process, Hartley had what she called her “first up-close look at someone dying.”
“It was an eye opener for me,” she said.
Her mother didn’t prepare anything about her medical wishes in writing. Her father wanted every treatment administered to prolong her life.
Hartley recalled her mother at one point saying, “I just want to go.”
“So I don’t really know what that meant,” she said. “I didn’t really get involved. I didn’t really feel it was my place but I was observing it.”
Hartley said her mother blamed radiation and other treatments for her suffering. She lost a lot of weight and had severe seizures before being moved to a nursing home where she died.
While Hartley is happy her father was with her mother through it all and she received quality care, she noted the dilemma her mother’s lack of planning created for the family. That prompted Hartley to become more interested in the subject.
Her father went on to live another 18 years. But Hartley later watched him decline, too.
In 2018, her father had what she described as “a very serious stroke.” He had survived cancer, other strokes and a heart attack, but this was different.
“I thought he was going to die,” Hartley said. “He was in assisted living but it was very questionable whether he would be able to get back to that level.”
After rehab, her father went to live at Pine Heights at Brattleboro Center for Nursing and Rehabilitation. There, he could be close to her.
Hartley said she was involved in every decision after that move, but her father had written down a lot of his desires before he died at the age of 102. He had plans for his funeral, an obituary written up and a sketch of an advance directive.
His foresight was appreciated.
“I think I was very fortunate in terms of being able to have a dad who was very reasonable and listening to doctors and also seeing what the process was,” Hartley said.
After hanging around Pine Heights after her father’s stroke, Hartley started to become concerned about planning her own future. She remembered being interested in Act 39 or the Patient Choice and Control at End of Life Act, which provides eligible Vermonters with terminal diseases the option to be prescribed a dose of medication that will hasten the end of their life, as it came into play.
Hartley and Michelle Blake of Putney organized a presentation last fall to hear from Patient Choices Vermont, a nonprofit focused on education about medical aid in dying and patient choice. They later held a book discussion group at the Putney Public Library and read “The Art of Dying Well” by Katy Butler.
Butler’s main advice, Hartley said, is to broach the subject of end-of-life care. Hartley was able to share with the group the experiences she had with her parents, learn about how to approach issues with her father, and figure things out for herself.
“I’ll be 72 next month,” she said. “At that age, I was starting to having questions and answers to things I might have had to wait until I was at a nursing home to think about.”
Hartley completed a short form version of an advance directive years ago. But she wanted one with new information and to register it with the state.
Freeman said the states of Vermont and Washington pay for their residents to register advance directives, and hospitals will recognize the documents.
After her father died, Hartley requested to speak with a grief counselor at hospice. She said the same volunteer turned out to be just as “fabulous” as a resource with end-of-life issues.
Despite Hartley being motivated after witnessing her parents’ approaching death, she still felt some reluctance when trying to complete the advance directive.
“It takes a lot of focus and concentration on a subject that in a way there’s a resistance to talking about it, thinking about it,” she said.
Now, Hartley is glad to have one. She holds a little card in her wallet with the information.
“You know,” she said, “I feel very secure about that.”
Hartley learned about a research program at the University of Vermont where she plans to donate her body for scientific study after her death. She doesn’t have children, which she believes could make such decisions more complicated.
Wanting to avoid a conflict later on, Hartley told her physician about her preferences.
“He’s supportive of that,” she said. “That made me feel very secure.”
Patients are sometimes handed an advance directive form while dealing with a medical crisis, Freeman said. His group allows conversations about difficult choices to occur over time and with consultation.
“It brings up a lot of stuff,” he said. “There’s no question about it.”
Freeman said he thinks it’s important to recognize that people’s decisions are right for them and not to judge them.
“Research shows it saves families a lot of heartache,” he said of the planning. “The fight in the hospital waiting room — ‘Dad wanted this.’ ‘No, Dad told me this.’ ‘No. No.’”
His group suggests that anyone older than 18 should have at least a sketch of an advance directive completed and name someone to speak on their behalf if they are unable to express their wishes. Freeman said advance directives don’t touch on Act 39 because the law requires the person to administer medicine themselves.
Anyone interested in getting assistance with advance directives can contact hospice at 802-257-0775.