BRATTLEBORO-"Our culture has a way to go in talking about death," said Shari May, the advance care planning coordinator at Brattleboro Area Hospice (BAH).
Death and end-of-life care remain subjects that many don't want to talk about. BAH's Advance Care Planning program has done a lot to get people thinking about how they can take the burden off the shoulders of their family and friends and have control over what kind of death they would like to have.
The program celebrates its 10th anniversary this year, and Joanna Rueter has been there since its inception.
A decade ago, Rueter had been running her own business, Sustainable Aging, where she worked as a coach to help people draw up their advance directive - the document that enables one to communicate their wishes in the event of a medical emergency or serious illness that leaves them unable to make such decisions themselves.
She wanted to find an organizational home for her work. BAH had been offering similar help, but had no formal program. In 2015, BAH was able to get a grant to start Advance Care Planning as an official project, and Rueter became its first coordinator.
Ten years later, the program continues to serve the Brattleboro area with free help for individuals as well as workshops and community presentations as part of BAH's Taking Steps Brattleboro initiative.
Brattleboro Memorial Hospital has also promoted BAH's services and sometimes calls on the agency to work with their patients.
As a result, Rueter says, "the awareness of advance care planning has grown majorly."
Rueter retired from the coordinator role in 2018 but is still involved with, and passionate about, making sure people make out an advance directive.
To mark the first decade of its Advance Directive Program, BAH is teaming up with Brooks Memorial Library for an event on Wednesday, April 16, from 6:30 to 8:30 p.m, to celebrate National Healthcare Decision Day. The event will feature Dr. Tim Shafer, attorney Amelia Darrow, and Rev. Lise Sparrow.
Reducing the drama
Rueter said while medical technology has become more sophisticated and health care has generally improved, the science hasn't always lined up with questions of quality of life.
She cited two cases that attracted nationwide attention that illustrate what can happen when an individual's wishes aren't made explicit.
Karen Ann Quinlan slipped into a coma in 1975 and was in a persistent vegetative state for 10 years while her parents had to go to court to get her off the ventilator that kept her alive.
Terri Schiavo, a Florida woman, suffered irreversible brain damage after a massive heart attack in 1990 and lingered in a persistent vegetative state for 15 years while her husband fought a prolonged legal battle with her family over whether to continue the artificial life support that kept her alive.
The ethical, moral, and legal debates over prolonging life in these cases, Rueter said, helped start the conversation over the need to clearly state in writing one's choices for end-of-life medical care, and to let family members know about those choices.
That is why the "advance" part of the advance directive is so important, May said, because it "allows for thoughtfully making plans without the stress of being in a hospital."
And it's not just for old people. Both Quinlan and Schiavo were in their 20s when they were stricken.
Rueter believes every adult should have an advance directive, and likened having an advance directive to wearing a seat belt when you are in your motor vehicle.
"It doesn't guarantee you'll survive an accident, but it certainly improves your chances," she said.
Starting the conversation
A Vermont advance directive form may be obtained at vtethicsnetwork.org/forms/advance_directive_short_form.pdf. Alternatively, the form can be found at BAH, where one-on-one help to fill it out is available. The agency will even make house calls.
Once the form is filled out, it becomes part of the Vermont Advance Directive Registry, as well as part of a national registry that can be accessed by health care providers outside the state.
The form can be updated at any time for changes, such as adding or removing people who should be notified, or changes in one's health.
The whole process, May and Rueter said, entails talking with people and getting them to focus as much on their lives now as well as on the end of life, and where the line is drawn between continuing care and deciding to end treatment.
The gist of the conversation, Rueter says, is asking how one makes a life, with the circumstances and resources one has, as good as possible.
"The beauty of those conversations is they can be joyful, creative, and inspiring," May said.
There have been about 1,000 of those conversations over the past decade, Rueter said, facilitated by dozens of trained volunteers over years.
"It's the ultimate quality of life conversation," said May. "It's about appreciating life, and savoring our time here."
For more information on Taking Steps Brattleboro, call 802-257-0775 or visit brattleborohospice.org.
This News item by Randolph T. Holhut was written for The Commons.