BRATTLEBORO — Talking about death and end-of-life care can be complicated, confusing, and scary.
It is often avoided for these reasons, or it is addressed belatedly.
As a result of avoidance or delay, families are often left with the responsibility of making health care decisions for their loved ones in critical condition, which can rupture relationships.
Joanna Rueter, Advance Care Planning coordinator at Brattleboro Area Hospice, is working to ease this burden for families.
She believes much of the drama that comes with making these decisions can be avoided if people fill out one simple, accessible document: an advance directive.
“[Completing an advance directive] means a lot of turmoil on the family [can be] spared,” Rueter said. “It's a gift to those who love you.”
To raise awareness about this issue, Taking Steps Brattleboro - an Advance Care Planning program of Brattleboro Area Hospice - is hosting a series of forums and events during National Healthcare Decision Week, which runs from April 16-23.
Not just for terminally ill
Advance directives are not just for people who are terminally ill or elderly, but for everyone at any stage of life and health.
Rueter noted that this is a common misconception that has led to many problems for family members of young adults who ended up in critical condition and never completed the form.
As an example, she cited the widely-known case of Terri Schiavo, a young Florida woman who 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 document used to be called a living will,” Rueter explained. An advance directive is used to inform how a person's end-of-life care will be performed and under what circumstances.
“It gives more responsibility [to a person] to say [for example]: 'under this circumstance, allow natural death: I don't want to be kept on life support if I can't talk to people, if I don't know who I am” - and any other criteria defined by the person filling out the directive.
On the back of the advance directive is a list of the people who should have the document in their possession once it is filled out.
“And you can list anybody else you want to give it to,” Rueter said. “In Vermont, you can actually write a letter [to serve as an advance directive].”
However, she said the advance directive form is particularly helpful to people to have a chance to look at all angles of the decision-making process.
The Vermont Ethics Network has attempted to make advance care planning as accessible as possible by simplifying the advance directive and making it easy to use. If a person wants to further elaborate, a narrative may be attached to the form.
It also doesn't require a person to jump through hoops to find a legal representative to make the form official.
“Now all you need is two adult witnesses who are not related, because you want someone who is not emotionally invested in the process in one way or another,” Rueter said.
The Advance Care Planning approach
A Vermont advance directive form may be obtained at www.vtethicsnetwork.org/forms/advance_directive_short_form.pdf.
Alternatively, the form can be found at Hospice, where Rueter matches a person with a volunteer to begin an Advance Care Planning conversation.
Taking Steps Brattleboro has derived much of its approach from an Advance Care Planning program called Respecting Choices based in LaCrosse, Wisconsin.
Respecting Choices places a strong emphasis on the role of conversations and relationships in the process of end-of-life decision making. In addition, it mobilizes healthcare resources at a local level and is highly personalized, while ensuring the accessibility of medical records.
At Brattleboro Area Hospice, human connection is a top priority in the Advance Care Planning process.
“Part of our method is to spend time talking with people about what they've seen or experienced, and what kinds of beliefs, wishes, fears, and worries they might have,” Rueter explained. “There's time and space to have somebody just listen to them. It's a clarification [of the function of the advance directive] and a time to be heard.
“And sometimes it is just being willing to be the coach who calls and says, 'Hi, I remember you were going to talk with your uncle about this... Have you done this?' and we serve as the Jiminy Cricket for folks,” Rueter said.
For more information on Taking Steps Brattleboro, call 802-257-0775 or visit www.brattleborohospice.org.