- Susan Norton
Ginny Fry, director of the Hospice and Palliative Care Council of Vermont, keeps "lots of colorful clay" in the backseat of her car. She gives clumps of it to relatives of hospice patients, who can use it make thumbprint impressions of their loved ones.
"We bake the clay afterward and make sure everyone involved gets a piece," Fry explains.
Using art materials to help survivors cope with death is one of the bereavement services a hospice agency offers. Such consolation can continue for weeks, months or even years after a loved one's death.
The work requires dedication. Hospice caregivers may themselves be in need of bereavement counseling because they sometimes grow quite close to the clients. "It's an incredibly difficult job," Fry notes.
Surprisingly, a comparatively small number of Vermonters find physical, emotional and spiritual comfort in hospice settings. Vermont ranked 48th among the states in the rate of hospice utilization, according to 2011 data from the Dartmouth Atlas of Health Care. Only New Yorkers and Alaskans were proportionately less likely to choose this different way of dying.
"The best quality of care at the end of life is available to people enrolled in hospice," declares Ursula McVeigh, attending physician at the University of Vermont Medical Center's palliative care service. "It helps preserve energy for the things that matter. It can enable people to achieve what they regard as a good death."
"It's wonderful," affirms Patricia Allen Morgan, a 90-year-old resident of Allenwood, an assisted-living community in South Burlington, where she receives hospice care through the Visiting Nurse Association of Chittenden and Grand Isle Counties. "The people involved are so full of grace."
Morgan says she opted for hospice in part because her husband, who died in 2004, had received such care at Allenwood, their home since 2001. "I saw how good that was," Morgan recalls. "Hospice is really the best choice."
The 11 hospice-related agencies in Vermont can arrange for counselors, social workers, chaplains, home health aides and nurses to support people whom doctors certify to be in the final six months of life. These team members strive to alleviate pain and allay fear once a person has made the decision to eschew efforts to cure a terminal illness.
"Many people feel better when they get rid of a lot of the medicines they'd been taking," observes Fry. And evidence suggests that a person may live longer on hospice care than if he or she were being treated for an incurable sickness in a hospital.
Hospice services can be administered in an individual's home, a nursing facility or at Williston-based Vermont Respite House, the only standalone facility of its kind in the state. Medicare, the federal health insurance program for the elderly, covers all these forms of assistance, along with at-home use of medical equipment such as wheelchairs and hospital beds.
Approximately 5,500 people die in Vermont annually, but only 1,763 Vermonters made use of Medicare's hospice benefit in 2011, according to the Centers for Medicare and Medicaid Services. The Visiting Nurse Association of Chittenden and Grand Isle Counties estimates that about 30 percent of deaths in the state take place in hospice care. At the same time, "the vast majority of Vermonters say they would rather die at home than in a hospital or nursing facility," the VNA chapter notes.
No one knows what factors account for this discrepancy between preferred and actual settings for the close of life. But health policy consultant Kevin Veller, who is overseeing a statewide hospice study for the VNA, presents a few hypotheses.
"Vermonters are fiercely independent and feel they can take care of their own. They don't want somebody from the outside coming in," Veller says. "It's a cultural thing."
Use of hospice care may also be limited by misconceptions of what it entails or by a general lack of awareness of this alternative to dying in a hospital or in a nursing home that doesn't provide formal hospice services, according to Angel Means, Vermont director of end-of-life care programs for the VNA. It's often assumed — incorrectly — that hospice care can be provided only in an institution and that it will no longer be possible to use one's personal physician, Means notes.
"A lot of smart Vermonters wouldn't be able to say what hospice is," suggests Veller. "Nobody talks about this subject. And almost no one is going down this road with experience of what hospice is like."
Many Americans resist the conclusion that further medical interventions are pointless, adds Veller, whose study is scheduled to be completed in the spring. "We're such a culture of 'cure it, cure it, cure it,'" she says. "'Let's go back to the hospital and get another fix.'"
Some relatives of a person in life's final phase may refuse to accept that a loved one's death is approaching, Veller continues. A daughter or son may insistently ask a sibling, "'Why are you giving up on Dad? I think Dad's going to come out of this.'"
In addition, residents of a predominantly rural state may not have access to the range of end-of-life amenities available to Americans in urban areas. Vermont, for example, has only a single for-profit hospice agency — New Jersey-based Bayada Home Health Care, which operates in four states and from offices in Essex Junction, Norwich and Rutland. Competition between nonprofit providers and entities such as Bayada results in more intensive marketing of hospice services and, thus, enhanced public awareness of this type of care, Means says.
Despite its low ranking on the hospice-use scale, Vermont's ethic of compassion does ease the passage of many dying individuals not enrolled in a hospice program, suggests UVM's McVeigh, who studied palliative medicine through a Harvard University fellowship. "I don't believe we're 48th in the quality of end-of-life care," she says.
Dedicated volunteers assist at hospice agencies that depend heavily on their help, Fry says. Many are motivated to donate their time or money after experiencing what hospice meant for someone they loved, she says. Means notes that the VNA's end-of-life care programs are powered in part by 300 volunteers. Every one of them has been trained over a period of 11 weeks.
Fry came to a career in hospice care after the death of her brother 35 years ago. "There was nothing like this for him at that time," she recalls.
"Death is a great mystery," Fry philosophizes. "We're all in this great mystery together."
Hospice was initiated in part by peace activists of the Vietnam War era, she recounts. "It was politically driven. Many people who got conscientious-objector status during Vietnam did service training in hospitals. They saw many ways in which health care could be improved."
Hospice became an option at about the same time as did birthing centers, Fry says. Both emphasize the benefits of autonomy, one at the start of life and one at the end.
The onslaught of AIDS in the mid-1980s further propelled the shift to hospice, she adds. "We had lots of people dying in their twenties or thirties," and many of them wanted a setting of solace, Fry says.
Living in her home while receiving hospice services enables Morgan to spend her days writing poetry and reading books, sometimes with assistance from volunteers. "I still have most of my marbles," quips the former director of the Converse Home, an assisted-living community in Burlington.
She also gets a massage once a week, Morgan relates. "You can't believe what that does for me," she says with a sigh.
But the best aspect of her hospice care, Morgan adds, is that she can continue to enjoy the companionship of her 13-year-old cat, Tabby. "They take good care of my cat here, not just me," she says.