BRATTLEBORO — According to the Centers for Disease Control and Prevention (CDC), 70 percent of people say they would prefer to die at home.
However, the CDC says 70 percent of people die either in a hospital or a nursing home.
Why is there such a gap between those two numbers?
To Joanna Rueter, it is mainly because people shy away from talking about death.
Rueter is an advanced-care planning coach, a trained hospice volunteer, and the owner of Sustainable Aging, a local business that helps people plan their final days so that, in her words, they can be “more comfortable with the idea of living well until your last breath.”
With the help of Brattleboro Area Hospice, Rueter will be leading a series of free, interactive workshops about the idea that everyone has choices and possibilities at the end of their lives, and that advanced planning is something that is not just for old people.
It wasn't so long ago, Rueter said, that people died at home rather than in a hospital. Only the indigent, or victims of sudden trauma, died there.
But from the 1950s on, medicine improved and diseases that once were virtual death sentences became merely chronic conditions to be managed.
“So many things could now be cured, so death could be kept at bay,” she said.
And today's medical personnel are focused on making people well, no matter what it takes.
As a result, said Patty Dunn, hospice program coordinator for Brattleboro Area Hospice, “people are living longer and sicker.”
And hospice care is seen by many as something one gets at the very end of life, when all medical means are exhausted.
“It shouldn't be a last-minute thing,” said Rueter. “Hospice care is much more effective the earlier it is employed.”
But Dunn thinks that hospice has become “the 'H' word, just like cancer used to be the 'C' word.”
“Talking about death doesn't mean you're [about] to die,” said Rueter.
Rueter said that a growing trend is something known as “slow medicine.” As described by Dr. Dennis McCullough in his 2009 book, “My Mother, Your Mother,” it is an approach that anticipates the changing needs of elders, rather than waiting for a medical crisis to intervene.
Standard medical protocol is to extend life, even if it means sacrificing one's current quality of life. Slow medicine, of which hospice is a part, focuses instead on helping people with illnesses enjoy the fullest-possible life now. The emphasis is on maintaining a patient's freedom, comfort, and dignity - not on prolonging life.
“It's hard to embrace the idea that the end is going to come,” said Dunn. “But what we do is more useful and more effective when we begin months in advance, instead of a few days before death. Asking for hospice care isn't giving up on life; it's about putting your quality of life first.”
“It's pretty simple,” Rueter said. “People who make end-of-life plans and communicate their wishes to their families generally live longer. Their families are less depressed. And the medical costs are about half of what they would be otherwise.”
How does one define quality of life? Rueter admits this is a deeply personal definition, but for her it comes down to the ability to do the things one enjoys the most for as long as possible.
Preparing an advanced directive - a written document that states one's wishes at the end of life - is crucial to ensuring an easier death.
Communication is key, Rueter said. “If families talk about it, everyone is on the same page, and there are fewer conflicts. But you have to have the conversation first.”