Hospice: It's about living, not dying
Hospice. It’s a word that brings hopelessness to mind for some people. It’s
who you call when there’s nothing left to do but “make them comfortable.” In
celebrating November as National Hospice Month, Compassionate Care Hospice would
like to change that image by reminding people that hospice is about how you
live, rather than how you die.
“People think, ‘Hospice, oh, they’ve got to be on their dying breath,’” said
Cathy Stauffer, senior vice president of Compassionate Care Hospice and
president of its Compassionate Care Foundation.
That’s simply not true, Stauffer said. Calling in hospice sooner means
getting started sooner on planning life-improving strategies, getting pain under
control, making the patient comfortable, addressing his or her physical, social
and spiritual needs and perhaps even extending life.
“Our mission is to access people who need the care and educate them about
quality of life and end of life issues,” Stauffer said. “We try to have a lot of
humor. It’s so wonderful to be able to laugh with a patient. We try to help them
still live. We encourage them to go out to dinner or take a ride in the car if
they’re able to,” she added.
Hospice also isn’t limited to cancer patients, nor is it the same as home
healthcare, which is designed for the chronically ill.
“If you have a life-limiting illness which is measured in months rather than
years, you need to talk to hospice,” Stauffer said, noting some of the illnesses
hospice sees include cancer as well as cardiac disease, renal disease and
neurological illnesses such as Parkinson’s and Alzheimer’s.
“They’ve gone through treatment. Nothing else curative can be done. They want
to have the best quality of life that’s available to them and their families.
And they don’t want to have to wait for their doctor,” Stauffer said of the path
some families take to hospice.
Many doctors suggest hospice, while others may not think of it, Stauffer
added, noting hospice care can be used in nursing homes as well as in home care
situations.
“We just wish that people would access it more and sooner. Most of the time,
doctors call us way too late. We could do so much more if we were called
sooner,” said registered nurse and CCH assistant director Linda Ricci, who
oversees Compassionate Care’s interdisciplinary team of nurses, chaplains,
social workers and home health aides.
Each team member has his or her role, getting to know patients and their
families and their needs, including their unique cultural conventions and family
traditions. Nurses take care of medical care. Aides do personal care, from
bathing to respite care. Social workers tend to the psycho-social needs of
patients and their families. Chaplains handle their spiritual needs. Volunteers
help out with respite care.
“There’s a lot of coordination of care,” Ricci said, noting the patient’s
personal physician is at the core of the team. In addition, CCH also has a
physician as its medical director, Dr. Timothy Wozniak.
Stauffer said CCH encourages patients and their families to take the first
step themselves and contact hospice. The process begins with an interview to
evaluate needs, a review of medical records and the patient’s doctor’s
recommendation. Then the patient and family can pick and choose what services
they want to use, and an individual care plan is tailored to meet their needs.
“They have choices. We don’t hear people say, ‘Well, you came in and took
over.’ It’s a partnership,” Stauffer said. “Every family unit has a different
plan of care.”
Some may not need all the services of home health aides, for example. “Some
spouses, they want to do that personal care themselves,” Stauffer said.
“Most patients who are terminally ill are very adjusted to their prognosis.
The family, however, often is not ready, so the nurses wear a lot of hats,”
Ricci said.
The role of CCH’s social workers also varies, according to Teri Busch,
licensed clinical social worker.
“We visit as needed,” Busch said, noting that means seeing some patients
weekly and others monthly. Many of their issues involve the caregiver.
“The caregiver is exhausted,” Busch said, adding with both patients and their
families, the most important parts of the job are listening and validating
feelings.
Another myth about hospice is that patients without insurance must pay for
services. CCH accepts most insurance, plus Medicare and Medicaid, but for
patients with no insurance, there’s never any charge, Ricci said.
“What’s also special about our hospice is that we have a foundation in which
100% of our donated dollars go back out to the families and patients,” Ricci
said.
Those funds can be used to help with non-medical bills.
“There’s lots of things the [Compassionate Care] Foundation will do to
improve the quality of life … We’ve paid mortgage payments, utility bills,”
Stauffer said, noting they also bought a new VCR for a patient who enjoyed
watching tapes of I Love Lucy and just received a request for dentures so
another patient can enjoy eating.
CCH also is on call 24 hours a day, seven days a week. “We’re never
closed,” Ricci said, noting they respond as quickly as possible any time of the
day or night. “We’re out there within an hour, which is very crucial when
someone is in crisis.”
Dispelling another myth, Stauffer said hospice care doesn’t end when the
patient is gone.
“We follow them at least three months or longer if needed,” she said, noting
bereavement services lasting up to 13 months range from cards and calls to
support groups and the annual memorial services attended by staff alongside the
families they served that year.
“That gives them extra closure,” Ricci said, adding, “Around the holidays, we
really double up on bereavement calls.”
Again, the family chooses what they need and want.
“Some people don’t want anything. Others need a lot of support,” Stauffer
said.
Article Published in HEALTH Section, November 10, 2004
About Compassionate Care Hospice
Compassionate Care Hospice, which has had offices in Delaware for more than 10
years, is a regional service with branches in New Jersey as well as parts of
Pennsylvania and New York. It currently serves about 150 families in Delaware.
For more information about Compassionat Care Hospice, call 800-219-0092
