Who's your person? What's your plan? An Advance Directive can help
BRATTLEBORO — Volunteer Karen DeSerres sits at a table at Brattleboro Memorial Hospital once a week, encouraging visitors to complete advance care directives. "It's been quieter recently," she says with a smile. "In January, people were like 'take-a-number.' For many it was their New Year's resolution."
An advance directive is a legal document to guide physicians and family in choosing the kinds of treatment you want, or don't want, if you can't speak for yourself. "Like wearing a seat belt," says the Taking Steps Brattleboro website, "having a completed advance directive gives you a better chance of living the life you want." It also lightens the burden and uncertainty of decisions about your care for doctors and family members.
Susan Parris, executive director of Brattleboro Area Hospice, remarks, "Having an advance directive is a gift for your family. Both my parents completed them, and I was their agent. An accident left my mother unconscious, and her completed directive made a huge difference in my comfort level as I made decisions with the doctors."
"More and more physicians are asking their patients to complete a directive," adds Suzanne Weinberg, a volunteer herself, who will be training new volunteers this spring to assist others with their directives. "People sometimes think of an advance directive as an end-of-life thing, though it needn't be," she says. "Anyone over 18 should have one. And you don't have to have someone help you fill it out. But it can be helpful, and if you're uncomfortable with doing it, or just want someone to bounce ideas off, a conversation with a volunteer can help you look at wider options you may not have considered."
In communities where advance directives are on record and being used, the whole atmosphere surrounding health care changes. The topic is easier to introduce, people understand their options better, important conversations happen more easily, and the range of available services is shaped by growing community awareness. In Vermont, nearly 40,000 people have already completed advance directives, and the number is growing each year as word spreads.
Volunteer Lucy Gratwick agrees. "The culture is shifting, depending on where you are, and who your people are. And just talking about it - that's really the baseline," she says.
"Who's your person? What's your plan?" reads a brochure describing advance care planning. An advance directive encourages you to choose an agent, a person you trust to see your wishes carried out. The plan is just that - your wishes and desires in legal form, witnessed and - if you choose - registered with the state of Vermont.
Gratwick notes, "I always make clear from the get-go that a directive isn't written in stone. You can look at it again, and make changes. And you probably will make changes over the years.
Maybe after several years your agent is no longer available, or a partner dies, or you get a life-threatening diagnosis. It makes it easier knowing you can always change it."
The state website (http://www.healthvermont.gov/systems/advance-directives) reminds visitors that they can always "suspend, revoke, replace, edit or delete an advance directive." Vermont provides a free advance directive Registry for its residents.
Registering your directive isn't required, but the Registry gives worldwide access to hospitals and other health care providers in an emergency. Vermont's Registry also helpfully sends you an automatic reminder each year if you wish to change your directive in any way.
Weinberg had a directive in the early '90s in another state, she says. "I've long been skeptical of heroic medical treatment, and always in the back of my mind, I didn't want to end up in a situation where any treatment wouldn't align with what I wanted."
Volunteers can help with information about completing a directive. Weinberg comments, "It's our job to tease it out and make it more specific, but often we also
advise people to see their doctor or talk to their clergy person for those aspects of their situation that are beyond our expertise."
One of the rewards of volunteering is that in the planning conversations, Suzanne observes, "You're cutting to the chase. In some ways, you get to know people quite quickly - what's really important to them." Gratwick reflects, "I got interested in the training by talking to the coordinator. I backed off from some other volunteering, because this one felt especially right for me."
As far as the training itself goes, Weinberg notes, "It's as thorough as we can be in 12 hours. We each have our own interests and passions, what we're reading, our conversations with other people, so there's different tracks that volunteers can follow" in suggesting perspectives for others to consider.
"We do a lot of listening, too," DeSerres says, "because the directive is about their choices, not my choice." And Gratwick agrees. "There's a huge range in what others say in these discussions."
"Becoming an ACP volunteer," says Parris, "is a wonderful way to give back to your community. By spending a few hours with your neighbor helping them complete their directive, you are helping improve their quality of life, because when the time comes their families and doctors will know exactly what kind of care they want."
If you're interested in requesting a volunteer, call the advance care planning coordinator at 802-257-0775 (Brattleboro Area), or 802-460-1142 (Greater Falls Area). The coordinator will arrange for an advance directive volunteer to assist you in thinking through your advance care planning and completing your directive. And if you're interested in becoming a volunteer yourself, call the number above. A short application and interview will get you started.
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