Hospice Gives 'Gift': Peace of Mind
'Hospice Is Alive and Well in the Sandhills'
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The second of two parts.
Hospice has become a vital force in caring for Moore and Montgomery residents with life-limiting illnesses.
In the past 10 years, FirstHealth Hospice and Palliative Care has served nearly 4,000 patients in homes and nursing facilities. Medicare and most insurance plans include a hospice benefit. Grief counseling for hospice families and the general public is ongoing and free.
Hospice House, an 11-bed acute care facility off U.S. 15-501 in Pinehurst, broke ground in December and will open next summer.
The message is clear: Accepting hospice does not mean imminent death.
"Hospice is about allowing the natural process of a terminal illness to be managed with medication and take its course," says nurse/case manager Joy Maynor.
Often, patients experience an improvement which enables them to enjoy weeks, even months, at home with family and friends.
Dr. Ellen Willard, oncologist and medical director of FirstHealth Hospice and Palliative Care, confirms the goals of her profession: "If you're in this for science, if it doesn't work (and the patient dies) you've failed."
Physicians are often perceived as distancing themselves from these "failures," Willard says.
"The way you survive without burning out is to change your goals," she says. "If I can no longer cure and probably can't prolong life then, OK. How can I make this the best process possible?"
Contrary to popular belief, only about half of hospice patients have cancer. Early in a terminal diagnosis for heart-lung disease, end-stage Alzheimer's, ALS, cancer and other diseases, the hospice social worker makes arrangements and helps sort out details, Willard says.
As the patient gets sicker, the nurse assumes the primary role. Physicians - Willard and others involved in the case - work closely with hospice nurses to control symptoms.
Pain is a primary fear, as is shortness of breath. Chemotherapy wears people down. After discontinuation, the side effects abate and patients may actually feel stronger.
"You have to know what patients want to hear and what they don't," Willard says. "There's a difference in the way patients perceive how treatment is working. They may overestimate results."
Willard continues to see patients who can travel to her office, but she rarely makes home visits. This will change when Hospice House is complete, since government regulations require regular rounding on patients in the acute care facility.
"Then I'll be needing help," Willard says.
The physician's decision to discontinue aggressive treatment must be made with great delicacy, tempered by knowledge of family dynamics. Often, Willard finds, families turn to the doctor, not wanting the responsibility of "giving up." Others lack the emotional fortitude to live with a terminally ill loved one.
"They need reassurance - to know it's all right not to be doing anything," she says.
And to know that help is available for what still needs to be done, Willard adds.
Equally delicate is broaching the hospice issue. Some patients inquire, while others are aware of the option but wait for the doctor's cue.
"There is still a certain finality when you say the 'hospice' word," Willard says.
She observes the pull-back reactions but stresses, "It doesn't mean you'll be dead in two weeks."
Often, Willard senses relief.
"Bad things can happen in hospitals," she says.
Still, some hospice recipients prefer to die in the -hospital rather than have family attach the event to their home.
"We respect those wishes," Willard says. "Nothing is worse than being sent to a nursing home to die. That's tragic."
Charlotte Patterson, director of FirstHealth Hospice and Palliative Care, possesses the aura common to her staff. Thirty years in the movement do not prevent tears from welling up when she explains her calling.
"You can't do this job for a paycheck," she says. "There has to be a passion involved."
The paycheck comes from overseeing a staff of 46 employees, which includes 11 nurses, a volunteer coordinator, office staff and social workers in a homelike building near the hospital. Eighty-three percent of her nurses are certified in hospice and palliative care, as opposed to 25 percent nationally, Patterson states proudly.
She must be cognizant of all government and insurance regulations. According to these regulations, the prognosis for patients is a disease that runs its normal course in six months. Patients will be eligible after six months under specific government guidelines.
"There needs to be a decline, rather than chronic disease," says Paterson, who is also involved in reviewing cases seeking admission.
Anybody can refer a patient to hospice. Patterson has seen patients walk in off the street. She reports that the average daily census (ADC) has grown from 14 in 1989 to 108 currently. There is never a waiting list. Nurses are hired as needed.
Most patients are 75 or older, but hospice has served young adults and children with life-limiting conditions. No one is turned away. Indigent patients and those without insurance are funded through FirstHealth, not a national hospice organization.
"They receive exactly the same treatment," Patterson says.
Grief counseling is a vital component, which starts as soon as the patient is admitted and continues for an unlimited time after death occurs. Counseling is available free to the community at large. Sometimes, Patterson says, survivors return to counseling for a "refueling."
Patterson's background as an intensive care nurse who has also treated neglected and abused children accounts for her passion.
Hospice House, on a wooded campground, a partial gift from James and Michelle Kirkpatrick, fulfills her dream.
"Seeing it go up on such a beautiful, peaceful place for end-of-life care couldn't be more perfect," Patterson says.
However, because the 11 private rooms with patios, recliners, sofa beds and flat-screen televisions are designated acute care, they will be reserved for patients suffering intractable pain or other extremes.
Projected stay: five to 10 days. Some will return home, some will be hospitalized, and some will die.
Patterson drives the short distance from her office to the construction site daily. Her feelings outpace the numbers-crunching.
"I miss contact with the patients," Patterson says. This will be re-established when Hospice House opens adjacent to the new administration building. "You have to have an emotional involvement."
'Peace of Mind'
Grieving takes many forms. Some survivors shut down after a death experience. Others, like Diana Santilli, of Pinewild, help themselves by helping others.
"I was miserable, depressed before we called hospice," Santilli says. "You can't enjoy (the last weeks of) life if you feel like that."
Her goal now is to use her positive experience to advise prospective patients.
Diana and her husband, Walt Santilli, an IBM executive in excellent health, retired to a gracious Pinewild home in 2000 hoping to play golf, tennis, take walks and enjoy the good life.
In 2007, Santilli was diagnosed with stage 4 prostate cancer that had metastasized to his bones.
The Santillis elected not to go to extremes. Walt received radiation for the pain but remained home and active for six months. Then, he worsened.
Diana was Walt's primary caregiver.
"It is extremely excruciating to see someone you love go through agony when you can't do anything about it," she says.
A nurse suggested hospice.
"Mentally, we both knew that was the best thing, but I was more ready than he was," Diana says.
She was worried how her husband would relate to a nurse, whether the nurse would find the key to his personality.
Within a week or two the hospice team had handled Walt's meds, dealt with the side effects and had him back on his feet - playing golf.
"Within a month, Walt looked and felt so good that we thought maybe this was all a terrible mistake," Diana recalls.
She describes that last Sunday morning tee time, exactly three weeks before her husband's death.
"There was a mist ... the grass was wet," she says. "Walt was weak but he was doing exactly what he wanted to do."
The reprieve implemented by hospice gave the couple time to prepare for the eventuality. Walt's decline was rapid. Hospice arranged for a hospital bed in their home and a wheelchair; a nurse was needed daily, sometimes more often. Diana, unlike most spouses, was interested in the process of dying and turned to hospice for explanations.
At the end, Walt went back to the hospital.
"He was protective and proud," she says. "He wanted to spare me. He said, 'What's taking so long. Let's get this show on the road.'"
Diana looks back on hospice care, however, as a comfortable time, a time when meaningful things came out.
"We were amazed at the difference (hospice) made in Walt's comfort level and my peace of mind," Diana says. "That's the gift hospice gave us."
Diana - an articulate communications industry professional - debated on participating in grief counseling, which hospice offers to their clients and the public, free of charge, in several forms.
After six months, she decided to attend.
"I met other widows, women I would not have known otherwise," she says. "We went out to dinner. At first we talked about death - you can say anything to them."
Conversations progressed from the pain of death to getting on with life.
'In the Trenches'
A year after Walt's death, Diana decided to take volunteer training.
"Until you're down in the trenches, you may have the intellectual understanding but not the practical knowledge," she says. It was that knowledge she sought to disseminate.
FirstHealth's 60 volunteers are carefully interviewed, screened and receive 20 hours of instruction. Some prefer patient contact, others office work. About half have had a hospice experience.
Respite volunteers are taught to take cues from the patient: Some want to chat about ordinary topics, others about their illness, says volunteer coordinator Susanne Martinez. Some just want a friendly body in the room for an hour or two.
Volunteers are mostly women. Martinez would like to see more men take training. She also predicts a need for Spanish-speaking volunteers.
Diana does respite care and, with Martinez, has established the Hospice Volunteer Advocate program, an ancillary service which pairs Diana one-on-one with people approaching or in the midst of what she experienced. Diana hopes to help families choose hospice sooner rather than in the last days of life.
Without hospice, Diana believes, her husband might have died much sooner. As it happened they had a golden and glorious relatively pain-free interlude to enjoy life, their children and granddaughter, and each other.
"I get something back by sharing that," she says.
Dr. Ira Byock, past-president of the American Academy of Hospice and Palliative Medicine, writes in "Dying Well, Peace and Possibilities at the End of Life":
"I ... hope for a future in which nobody has to die alone or with their pain untreated. When people are relatively comfortable and know they will not be abandoned, they frequently find ways to strengthen bonds with people they love and to create moments of profound meaning to their final passage."
Contact Deborah Salomon at firstname.lastname@example.org
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