TOWNSHEND—Most people agree that doing advance planning for one’s medical treatment is a good idea.
Unfortunately, like so many good ideas, everyone talks about making out an advanced directive (AD), but few do so.
An advance directive, as defined by the Vermont Department of Health, is a written document, signed by an individual and two witnesses, that outlines the individual’s wishes for future medical treatment if he or she no longer can make decisions about how to proceed.
Since the state’s advance directive registry began in 2007, 11,000 people have filled out the forms, according to Charon Goldwyn, the health department’s overseer of the registry. That represents about 2 percent of adults in Vermont, based on 2010 census figures.
The health department contracts with the Vermont Ethics Network, a private nonprofit, to administer the registry. The forms are available from most medical establishments such as clinics and hospitals and often from doctors, as well as from the Department of Health. The forms, process, and filing are free.
So why are so many Vermonters reluctant to make out advance directives?
According to social worker Carol Vandertuin, who just began her 31st year at Grace Cottage Hospital, people don’t want to confront their mortality.
“We live as if we are immortal, until we get sick,” she said.
Vandertuin, a strong proponent of advance directives, is the go-to person for forms, for help, and for information at Grace Cottage. She will offer assistance in filling out the forms and will answer questions. Her advance directive services also are free.
Recently, to prepare for a presentation about advance directives that she was to deliver to the Grace Cottage Foundation, Vandertuin did an informal survey among the staff at the hospital.
Called “Advance Directives, Why Bother?,” the survey posed a dozen questions. It also offered a few answers.
The survey covered the possibilities of what can go wrong when a person is close to death and unable to speak for himself or herself.
For example, without an advance directive, conflict might arise when multiple children must decide how to care for a parent.
Then there is the grief that a surviving spouse might feel before and after making end-of-life decisions. Or the possibility that there is nobody around who will care what treatment you receive.
Not to mention that your family members might not know what you want, or that their speculation about your wishes frequently is incorrect.
Vandertuin told of a study she’d read, which took 100 couples and divided the men and women into separate rooms and asked each to list what kind of care their spouses would want.
It turned out that the majority of these surrogates erred on the side of over-treatment.
Vandertuin also included a story about a man whose directive made his niece his agent, because his wife had kept all their pets alive at all costs and he was not in favor of that.
Another study concluded, according to Vandertuin, that surrogates were found to suffer all sorts of post-traumatic issues after making unilateral decisions about their dying loved ones.
She told the story of a woman named Dee.
“I have been on the end of having to make decisions about when to stop food and water after my dad had a stroke,” Dee said.
“He had never discussed his wishes with any of us. He thought he would never die, or that he would live to be 100,” she said.
“It was horrendous,” Dee said. “It has been over 15 years, and I still wonder if I made the right decision.”
According to Vandertuin, a doctor at Grace Cottage tells another story about a man who was confronting these issues.
“When [his] father was hospitalized and was asked about CPR [cardiopulmonary resuscitation], he glanced to his son for advice. The son said, ‘Well, you are 87 years old and you have had a full life, haven’t you?’ His father replied, ‘Not yet!’”
Vandertuin also cited some statistics about life expectancy and causes of death.
The most current U.S. statistics from the Centers for Disease Control and Prevention indicate the average age at death is nearly 78, and the top causes of death are heart disease, cancer, stroke, chronic lower respiratory diseases, accidents, Alzheimer’s disease, diabetes and influenza, and pneumonia.
She pointed out that 25 percent of all health-care costs are generated by people in the last years of their lives.
She also emphasized how important it can be for the younger population to file ADs, citing the much-publicized case of Terri Schiavo, who languished in a persistant vegetative state for 15 years as her family and her husband fought over withdrawing life-support sytems.
Schiavo’s husband finally won his many court appeals to have her feeding tube removed in the face of political and religious opposition, and she died a few days later on March 31, 2005.
Vandertuin cites what she calls the “five Ds” for when people should review their ADs with their doctors and families: death of a spouse, divorce, decade birthdays (age 40, age 50, etc.), diagnosis of a life-threatening condition, and decline.
“The advance directive goes into effect when you are terminally ill and cannot speak for yourself,” she said. “The AD lets your doctor and your family know your values and preferences for care.”
She said it is easy enough if everyone agrees on the goal when there is a standard treatment available.
“But many conditions require close collaboration between physician and patient to look at options, risks, and benefits,” she added.
She mentioned emphysema, for example, when a determination must be made about intubation, or heart problems that might require CPR.
And to bring home the point, she cites a Spanish proverb
“The appearance of the bull changes when you enter the ring,” she said.