Give the gift of planning
Bringing the community together for Advance Directives
Many people don't and Joanna Rueter MSW, Advance Care Planning Coordinator for Brattleboro Area Hospice is passionate about fixing that. Back in 2014, BAH hosted a staged reading of "Vesta: A Family's Story at End of Life"; it opened up the conversation about death and dying with a discussion following the play. In an expansion of that initial event, Taking Steps Brattleboro began in the Fall of 2015 with a grant from The Thomas Thompson Trust, funds from Brattleboro Memorial Hospital, Brattleboro Area Hospice and United Way of Windham County. Rueter has organized two weeks of events, from April 16 through 29, that includes another staged reading of "Vesta" as well as a film, panel discussions, Brown Bag Lunch informational talks, and more to educate the public about their options in Taking Steps Brattleboro, an Advance Care Planning Project. Rueter's goal is for people to see Advance Care Planning from a different perspective and understand the importance of doing it.
In 1991 the federal Patient Self Determination Act was passed giving people the right to decide what they do or do not want for end-of-life decisions. In situations when a patient is unable to speak for his or herself an Advance Directives advises doctors and family members what to do. According to Rueter, when families haven't talked about this, there is confusion and families are often torn apart, sometimes permanently. When proposing the subject, oftentimes the adult children feel that parents might think they are trying to get rid of their parents and parents think their adult children don't want to talk about it. But when families have these conversations a deeper connection develops. Rueter called the Advance Directive, "A gift to the people you love."
Doctors and hospitals are obliged under the law to keep a patient alive. With the miracles of modern medicine, they have gotten pretty good at that and will unless there is an Advance Directive indicating what the patient's wishes are, made while in a sound state of mind. However, it is good to know if a patient can speak he or she can change the directive verbally. Since dementia can alter a person's judgment, the Dementia Advance Directive, a three-step plan, was recently made legal as a way to document health care decisions at different stages of dementia.
At what point would you want to be just kept comfortable, to allow a natural death? What will be the quality of life be after treatment? Taking Steps Brattleboro has an array of events to help answer these questions and more about end-of-life and help in making decisions.
Rueter said half the battle is getting people to think about it because it is about more than procrastination. "I was brainstorming ways on how people can cope with different aspects of the subject. These events offer options to enter from any doorway. The goal here was to have more doorways," she said.
On Monday, from 7 to 9 p.m., the Brattleboro Museum & Art Center will host a film screening of "Being Mortal," a "Frontline" documentary with author Atul Gawande MD. He realized he had made a big mistake with a patient when he created interventions to keep a young mother alive instead of just letting her live out her life with her family. The film will be followed by a discussion and light refreshments with trained volunteers on hand for one-on-one questions about Advance Directives.
On Wednesday, from 7 to 8:30 p.m. "Where Why When How What? Ask anything you want — this is your chance!" at the Brooks Memorial Library, 224 Main St., on Main Floor After a brief discussion by a panel which includes Attorney Ed Burke, Dr. Robert Tortolani, Cindy Jerome, executive director of Holton Home and Bradley House, and ER Nurse Shabir Kamal, about the benefits of Advance Directives from their particular perspective, the floor will be open for questions. No question is too silly or dumb.
For some light entertainment, a Rock Voices concert on April 20, at 7 p.m. at Centre Congregational Church, 193 Main St.., featuring the song "Keg on My Coffin."The Advance Care Planning Project has been chosen as the beneficiary of the 50/50 raffle.
A week of Brown Bag Lunches at the River Garden, 157 Main St., from noon to 1 p.m., April 23 through 27, offer a range of subject matter: Green Burial and Other Choices for the environmentally conscious on April 23; "Getting Clear about Rescue" on April 24; About the three local Hospices (VNH and Bayada) including BAH on April 25: Grief and Your Own Experience on April 26; and How to Write Your Own Obituary on April 27.
Also at the River Garden on April 29, at 3 p.m., there will be a panel of speakers from diverse traditions who will speak about the beliefs and practices that guide them regarding the end of life. Ask questions and explore your own thoughts.
Because it was such a great response in 2014 there will be a repeat staged reading of the play "Vesta" at the Brattleboro Museum & Art Center on April 27, at 7 p.m. directed by Burt Tepfer again. It is a compelling story about Vesta, a feisty, independent woman who has to come to grips with the loss of her independence and the changes that her illness has brought over a five-year period, and the impact that these changes have on her daughter and granddaughter. Vesta is a force to be reckoned with as she and her family accept and adjust to these changes with tender and poignant moments as they deal with mortality amidst unresolved issues between mother and daughter, running the gamut of emotions.While an emotional subject, there are moments of humor that deal with the difference of opinions and conflicts that arise on what should be done. Although a couple of the cast members are different from the first production, Tepfer said it is a great cast and in a new and better staging area. As in 2014, there will be a facilitated discussion following the play with the cast and hospice staff.
According to Tepfer, the idea of the discussion is to reflect after seeing the play. He said, "It's easier for people to see a play of this sort rather than thinking about dying, they can absorb it a little bit by a little bit when presented in this form." He added, "We are hoping to reach a broader audience from 2014 and to push for the Advance Directive. It's about planning."
BHA is a non-medical, all-volunteer, free service serving Windham County and bordering towns available to terminally ill patients and their families. The office on Canal Street has the Advance Directive forms as well as an informative "Taking Steps" booklet to read, a list of resources, and a library.
According to Rueter, all states have an Advance Directive form available. Vermont's online version is at vtethicsnetwork.org. Another source for information is theconversationproject.org.
Rueter said, "We all need to do this. It won't be as hard as one thought it would be. Don't let the family be left in the lurch. If you haven't stated what you want done, it won't be done. This is the only way to do it. " She continued, "An Advance Directive is like a seatbelt."
"I'm hoping people will go learn things, and get educated, to know they have options," Rueter said. There will also be an informational table on Taking Steps Brattleboro in the Richards Building Lobby at the Brattleboro Memorial Hospital, Monday through April 20 from 7:30 to 8:30 a.m., and noon to 1 p.m.
As posted on theconversationproject.org, "It's always too soon until it's too late."
For more information, call 802-257-0775 or visit brattleborohospice.org
Cicely M. Eastman may be reached at 802-254-2311, ext. 261
TALK TO US
If you'd like to leave a comment (or a tip or a question) about this story with the editors, please email us. We also welcome letters to the editor for publication; you can do that by filling out our letters form and submitting it to the newsroom.