Easing life at the end of a life
“It’s very comforting to be home,” said Anna Lamb, a hospice patient with the Glenwood Springs-based Roaring Fork Hospice. “One of my daughters is coming in from Texas, and we’re all going to have Thanksgiving here.”
Lamb, who has lung cancer and a brain tumor, recently moved from her longtime Grand Junction home to her daughter Catherine’s home, just south of New Castle, due to her health. She has been in hospice care for nearly a year, first with a Grand Junction care provider and now with Roaring Fork Hospice (RFH).
“They’re all nice and friendly, and very helpful,” Lamb said. “The nurses come out to the house, take my blood pressure, and give me my medication, and check up on me. They’re a comfort to me and the family. I’m very pleased with the hospice.”
Lamb is among a dozen RFH patients who live in the greater Roaring Fork Valley.
But with hospice and home-health-care providers on the decline nationally and locally – the result of recent Medicare reforms – fewer and fewer alternatives exist for individuals experiencing the final phase of life, aside from traditional hospitalization or nursing-home care.
“We’re pretty much it around here,” said RFH director Sue Jones.
Jones explained that Medicare’s hospice benefit is $87.60 per day – to cover all facets of care – though RFH provides hospice care regardless of a patient’s ability to pay. Per patient, RFH’s hospice care amounts to about $120 per day, a disparity that must be covered through donations and fund-raisers, such as the Loving Tree lighting ceremonies.
On Nov. 30 at 5:30 p.m., an Aspen Loving Tree will be lit outside The Little Nell hotel, and in Glenwood Springs, a Loving Tree will be lit Dec. 7 at 7 p.m., at the Hotel Colorado. Ornaments to decorate the trees can be purchased for $25, with proceeds going to RFH.
“We usually have between ten to twelve hospice patients at a time,” Jones said. “It doesn’t seem like a lot, until you learn that one’s in Snowmass, another’s in Parachute, another’s in Rio Blanco County, and another’s in Sweetwater. I’ve had staff travel hundreds of miles in a day, just to see the patients we need to see.
“That’s why we do the fund raising we do, because I don’t want to tell a patient we can’t see them because they’re too far away, and Medicare or their insurance won’t cover it,” Jones said.
Typically, hospice services are provided for patients who expect to live less than six months, she said.
“They’re no longer looking to get better,” Jones said, “they’re looking to be comfortable. At that point, patients typically decide: no more radiation, no more chemo, no more hospitals.”
Ninety-five percent of RFH’s care is provided to patients at their homes. And typically, the services provided to patients are quite different from traditional health-care practices.
“Health care today takes away your choices,” Jones said. “In hospice care, we try to give those choices back to you … if you want more pain – to be more alert – we can do that, but if you want less pain, we can do that too.”
Furthermore, about half of RFH’s energies are devoted toward the families of the patients, before and after death. “Because as the patient becomes less alert, we hold the hand of the families as they’re going through it – we’re available twenty-four hours a day, seven days a week,” Jones said.
RFH’s staff includes seven full-timers and a corps of 40 volunteers.
Joy Beeding, clinical coordinator for RFH who, with Jones, helped launch the hospice in 1997, used to run a large hospice in San Antonio and had intended to retire when she moved to Marble.
“Really, I was retired, but I love hospice so much – I love the challenges and the rewards – when I heard they needed some help, I decided to give up my retirement,” Beeding said.
Death is a reality of hospice work, a reality that the RFH support staffers, like social worker John Lutgring and clergymen, help families and patients cope with together.
“Periodically, we go through a series of deaths,” Beeding said, “and I suppose for hospice staff, we want to provide a comfortable death that has some meaning.
“The nurses and physicians usually address the physical pains, but the spiritual pains aren’t so easily addressed,” Beeding continued. “That’s why we have an interdisciplinary team.”
Lutgring, a 27-year social worker, plays an active role in the entire hospice-care process, from assisting families with end-of-life planning to leading families in bereavement counseling after the death of a loved one.
“I’m the WD-40 for the family – getting patient and family to communicate with each other,” Lutgring said. “Fostering open communication is the key to making hospice work.”
“The number-one rule of working with families and patients is to always start where they’re at,” he said. “People aren’t going to broach the issue of death and dying until they feel safe, and to create safety, you have to listen and encourage, and you have to look for hope, you have to redefine hope.
“We avoid the idea of getting older and eventually dying, and yet some of our best moments in life that matter are at the end of life – people have total clarity,” Lutgring said. “They know what matters to them … they’re not distracted by wealth or possessions – usually the only thing that matters is their family and friends. It’s an exceptional time.”
RFH certified nursing assistant Sherree Moore visits hospice-care patients regularly.
“When I get a letter, telling me what a difference I made, from a family, it’s very rewarding, because the job is difficult. It’s not easy dealing with death and dying all the time … we take a lot for granted when we’re healthy; here I’m reminded I have a lot to be thankful for.”
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