MIDDLEBURY — On a sunny afternoon last week I had the distinct privilege of hosting eight professionals in the conference room at the Addison Independent to talk about dying.
Not my own death, necessarily — I am a 32-year-old with no known reason to consider my own imminent demise — rather, to learn more about the process of dying and what kinds of choices and considerations there are along the way. Not exactly your average Wednesday.
My guests were invited from five area organizations that support individuals and families through the final days (and weeks and months) of life. They included Maureen Conrad, who is director of development, and Hospice Director Marcia Wheeler from Addison County Home Health and Hospice (ACHHH). From Hospice Volunteer Services we were joined by Program Director Priscilla Baker, Program Assistant Laurie Borden and volunteer Dorothea Langevin. Daphne Diego was with us as well; she’s president of Addison Respite Care Home (ARCH). Dr. Diana Barnard also joined the conversation as a palliative care physician who works with both UVM Health Network’s Porter Medical Center as well as ACHHH. Our final guest was Matthew Wollam-Berens, who is the chaplain at Porter Medical Center and Helen Porter Health Care and Rehabilitation.
Together, Porter Medical Center, Helen Porter, ACHHH, Hospice Volunteer Services and ARCH provide exceptional end-of-life care to the people of Addison County, helping to make the final phase in life comfortable and as full of love and care as all the other phases.
And while many of us may have heard the praises sung for these local professionals in the pages of the obituaries or from friends or contacts who have used their services, still a good many of us probably wouldn’t be able to paint a very clear picture of what exactly they do.
Why? Because death terrifies us.
We don’t know what it’s going to look like and can’t tell what it’s going to feel like. We are scared of the scar it will leave with our loved ones and never feel like we’ve done enough living to be ready for dying.
With modern medicine such as antibiotics, technical innovations and chemical treatments, we have moved away from the acceptance of death as a normal part of the life cycle, says Wheeler.
“We’re working so hard to keep people alive that we forget that it’s OK and reasonable to choose death,” she said.
Barnard agrees, saying that too often medical professionals are encouraged to pursue every avenue to keep patients alive and steer them through lengthy, painful and excessive treatments, sometimes despite a terminal prognosis. Unfortunately, many make the mistake of seeing death as a failure to meet their expectations, when in fact sometimes it can be the best course of care for that person.
“There is a cost to trying for too long to keep someone alive,” Barnard said. “What we do in palliative care is assess the benefit versus the burden of care and help the patient and their families navigate quality of life considerations and treatment options.” That’s when the guided conversations about death are most critical.
Faced with these epically heavy choices, it is clear why you would need a carefully trained and thoughtful team of people helping along the way.
Langevin joined the team of more than 100 volunteers at Hospice Volunteer Services following the early death of her husband last year. While she had known little about the end-of-life services prior to the detection of her husband’s aggressive cancer, she had been inspired by the grace and support of the health network throughout his four-year battle and especially by the hospice team that ultimately helped them through the final phase.
So what does that final phase look like? Well, the short answer is it’s different for everyone.
“Just the same as every birth being different, every death looks a little different,” Wheeler said. But the process — one that Wheeler argues is both philosophical and programmatic — is one of careful attention to the wishes of the patient so that they can die in relative comfort, peace and with a calm mind.
“Dying doesn’t have to be a terrible, horrific event,” she said. “We want people to know that whatever goals they or their family have can be met.”
Doctors, nurses, social workers, volunteers, chaplains and other religious and community leaders all work collaboratively at each of these local institutions, doing the legwork on behalf of individuals and families nearing the end of life. They help individuals consider the things that matter most, like those covered in a book by palliative care leader Ira Byock called The Four Things That Matter Most. Byock says that four simple phrases — “Please forgive me,” “I forgive you,” “Thank you” and “I love you” — carry enormous power to mend and nurture our relationships and inner lives, preparing us to say goodbye.
TALKING ABOUT DEATH
The conversations about death, however, can never start too early, says Borden. In fact, there is a collective effort among these five local organizations to inspire a broader and more commonplace conversation about death and dying.
“It’s called Advanced Care Planning,” Borden said, “and it’s never too early to start becoming familiar with the language, options and considerations for what’s most important to you about life.”
Advance directives (sometimes called living wills) are formally considered legal documents that specify the course of action that should be taken in the event of a life-altering scenario that renders it impossible for a person to speak or act on their own behalf. According to Barnard, it’s an important tool not just for thinking about specific choices, but for considering what values in life you consider most crucial to be happy.
According to Conrad, an advance health directive is one of the greatest gifts parents can give to their children.
“If you have spent the time to really think and consider what’s important to you and have identified a course of action that you’re comfortable with, then the end of life can be more simply about spending that time living your last days,” she said.
Barnard agrees, saying that leaving some of these tough conversations until critical moments can cause stress, anxiety and emotional reactions to challenging news.
Baker chimed in, “The secret, however, is that most people find that when you start thinking about death as real and truly are willing to stare it in the face — that’s when you actually start living.”
The group hopes to inspire these conversations through a series of public workshops, film screenings, published information (hint: keep your eye on the pages of the Addison Independent for details) and they are striving for a generally open-door policy for anyone wishing to learn more about end-of-life options and hospice care in Addison County. They will continue to work independently as well as collaboratively to support and provide care services to individuals and help as family members open themselves to having these tough, but loving, conversations about how to live each day to its fullest.