WASHINGTON – Sharon Wollman had a hard time calling Hospice of the Chesapeake for her son David, 35, who was diagnosed with lung cancer — the call meant he was dying.
But the Annapolis resident, with 22 years of nursing experience, knew her son’s rapidly deteriorating health meant he would no longer respond to chemotherapy, and he needed pain management to provide comfort in his final days.
More than a year after his death, Wollman is thankful she made that call, grateful for the support hospice provided.
“Hospice not only helped David, it helped the rest of the family,” she said. “If we had done it on our own, it would never have been so smooth. There was an easy flow because we had trained professionals that understood all of our needs and David’s needs.”
She is one of an increasing number of Marylanders who have used hospice and would recommend it to others. But even though the state has a strong hospice system, with high customer satisfaction rates, use here is still low.
A state-by-state report card last month by Last Acts, a coalition aimed at improving end-of-life care, praised Maryland for its policies and personnel training, but gave the state a “D” for the low use of hospices here.
The report said that only 21 percent of people over 65 who died in Maryland in the past year used hospice in the last year of life, and that the average length of hospice stay was 21 days, well below the 60 days officials recommend.
But Naomi Naierman, president and CEO of American Hospice Foundation, said Maryland is not unique. Last Acts said the average length of hospice stay is declining nationwide and that only 25 percent of deaths occur at home, where more than 70 percent of Americans say they would prefer to die.
State health officials maintain that nothing is wrong with the quality of Maryland’s hospice care. Patients are simply not using it.
“We have the policy and the personnel, we just need the patients,” said Deborah Pyles, executive director of the Hospice Network of Maryland.
Pyles said state hospices get high satisfaction ratings and positive feedback from patients. From 2000 to 2001, she said, the number of patients receiving hospice care grew 13.8 percent, from 10,593 to 12,057 patients.
But even as more people get hospice care — for physical symptoms as well as psychological, emotional and spiritual needs — the average length of stay continues to drop in the state. The average length of stay fell from 21 days in 2000 to 18 days in 2001, Pyles said, with 29 percent of patients dying within a week of admission.
“We had a patient who died during the admission process,” in November, said Erwin Abrams, president and CEO of Hospice of the Chesapeake, which serves about 160 patients in Anne Arundel and Prince George’s counties.
Abrams and others say they are seeing a trend of doctors and family members delaying hospice referrals until patients are “at death’s door,” which affects the quality of care patients receive and the life of hospice programs.
“It’s a national trend that doesn’t make for good care at the end of life and reflects the physician’s reluctance to raise the option of hospice earlier,” said Naierman.
Patients are referred to hospice when life expectancy is approximately six months, the length of stay recommended by health officials so patients can benefit from the program.
But Dr. Michael Gloth, a Baltimore geriatric internist, said referring a patient to hospice is “more complex than most people realize.”
Gloth agreed physicians may make late referrals, but said it is because they have difficulty making a six-month prognosis or because they have not been trained in how to counsel family members. Also, he said, some doctors fear that telling a patient he has six months to live may cause depression.
“The hardest thing I do is tell people they’re going to die,” Gloth said. “It’s not easy and I hope it never becomes easy, but it would be better to learn how to deal with when in medical school.”
Physicians are also reluctant to refer to hospice because of the reimbursement process. Hospice care is covered by Medicare, but the doctor must give a six-month prognosis and the patient must sign a statement choosing hospice care instead of curative medicine.
Gloth said physicians may be confused by the reimbursement process, fearing that they will lose input on patient’s care and that the hospice team will completely take over.
But a spokeswoman from the Centers for Medicare and Medicaid Services said Medicare hospice coverage is one of the simplest of the program’s reimbursements, because it is a per diem schedule. And even if a patient switches to hospice care, the attending physicians can still be involved and do not have to lose control of their patients, she said.
Because of misunderstandings like this, Gloth said, “greater communication is needed with hospice and hospitals, and the same is true with nursing homes.”
While physicians ultimately make referrals to hospice care, family members and friends can initiate the process, like Wollman did. Gloth said not many people are educated about the service, particularly minorities, and the first step to good care is educating health care professionals and the public.
“We need to get the message across that how we address that final time in life is deficient in many different areas,” Gloth said. “No matter what we do, nobody is going to get out of life without dying. We all are going to need good end of life care.”