Hospices widen care services
Patients with terminal illnesses are seeking hospice care far too late to get the full benefits of in-home nursing, counseling, and pain control that can provide a comfortable death, according to doctors and hospice providers.
More than one-third of US hospice patients die within a week of enrolling, according to the National Hospice and Palliative Care Organization. The delay results most often from patients' unwillingness to give up on a cure, as last-ditch treatments for cancer and other terminal diseases become more available and tolerable. Traditional hospice programs require that patients forgo life-extending treatment; in addition, because of tight funding, some programs will not accept patients getting expensive treatments.
To reach more patients, hospices are providing more medical treatment, and other programs are forming that offer some hospice-style support while patients continue life-extending medical treatment.
''More hospices are moving beyond the days of giving morphine and holding hands," said D. Rigney Cunningham, executive director of the Hospice and Palliative Care Federation of Massachusetts. ''We're trying to take care of more patients with more complicated treatments."
Nationally, hospice use is growing, reaching 950,000 people in 2003. But the median length of time in hospice care declined from about a month in 1995 to three weeks in 2001, according to the national hospice organization. In Massachusetts, Cunningham said, the median is just 16 days.
The national number rebounded slightly in the past two years, which hospice specialists said may reflect the agencies' efforts to change.
Patients and their families get the most from hospice if they enroll months, not weeks, before death, many end-of-life specialists believe.
But many new treatments have fewer side effects than older drugs and can be taken at home. That is reinforcing a common longstanding reluctance to accept that death is imminent, doctors said, and encouraging more patients to pursue treatment longer before seeking hospice care.
In addition, some of the same treatments that can extend life also are effective for easing pain in dying patients, blurring the lines between cure and comfort care. As a result, some doctors delay referring patients to hospice in the belief that hospices will not cover these treatments, even if they are used solely to relieve discomfort.
''It's a big problem," said Dr. Jennifer Temel, a thoracic oncologist at Massachusetts General Hospital who researches the importance of symptom management in patients' quality of life.
Temel said she has delayed referring patients to hospice at least 10 times this year so that patients could try Iressa, an oral chemotherapy drug that shrinks tumors in about 10 percent of patients with advanced lung cancer who have not responded to other treatments. One patient saw a dramatic turnaround, but most do not, and would benefit from simultaneous hospice care, she said.
Boyd Arnold was one of her patients who delayed enrolling in hospice care. In July 2003, Arnold was diagnosed with lung cancer that had spread to his brain, bones, stomach, and lymph nodes. The grim prognosis -- three to six months -- qualified him for hospice, which is typically restricted to those with six months or less to live. But Arnold hoped ''to be in the 2 percent who survived the disease," said his wife, Jackie. Together for five years, they hurriedly married on the day he got the bad news.
Boyd got radiation and standard chemotherapy, but that did not stop the cancer's march, Jackie said. So he turned to experimental chemotherapy. That shrank the brain tumor and stabilized the tumors in his lungs, allowing him to surpass the expected six months. But then the drugs began to cause complications. At 11 months, he learned the cancer had crept into his liver.
Temel, his doctor, suggested hospice, but the couple were not willing to give up hope. They postponed calling hospice while Boyd tried Iressa. After three weeks, he was still deteriorating, but again they delayed hospice to get a month's refill of Iressa. Finally, with Jackie physically and mentally sapped from caring for her 56-year-old husband at home, they called in hospice -- just eight days before his death, as it turned out.
Hospice workers brought a hospital bed, a wheelchair, and a shower stool to the Arnolds' home. They sent an aide to help bathe Boyd, and provided several different nurses that week to check on him. But in just a week, the Arnolds did not have time to use the full range of nursing, social, and spiritual services available through hospice to prepare for Boyd's death.
While the nurses provided morphine for Jackie to administer, for example, she was not sure how much to give in his last days and erred on the low side, leaving him in some pain, according to Temel. And on July 25, when Boyd's breathing became shallow and quick, he died before a hospice nurse arrived to help Jackie.
''It was as if someone threw you a lifeline, but didn't tell you how to use it," said Jackie.
Hospice officials say they are trying to reduce barriers to hospice care and adapt to the change in end-of-life medical treatments.
A survey two years ago by the state hospice federation indicated that 14 percent of the state's 44 hospice agencies would not admit patients on palliative chemotherapy or palliative radiation, treatments designed to reduce pain and other symptoms, according to Cunningham. But nearly all now say they accept at least some of these patients on a case-by-case basis.
''Historically, someone who was receiving radiation was working more in a curative bent," said Diane Bergeron, executive director of Hospice Care Inc. of Stoneham, which accepts patients on Iressa or palliative radiation but gets few such referrals from doctors. ''Now, that's not necessarily true."
The cost of the treatments remains a hurdle, however. Medicare and most private insurers pay hospice a flat daily fee for all care of a patient -- Medicare's payment in Massachusetts is $133 a day. Drugs such as Iressa can eat up half of that, according to doctors and hospice providers. And Medicare has not changed the program much since it was established as a benefit in 1983.
To help families such as the Arnolds, patient advocates are beginning to press for a change in the Medicare hospice benefit to allow more treatment in parallel with comfort care. Doctors and hospice officials are pushing for an increase in the daily fee Medicare pays to hospice programs.
In addition, many hospitals and home health organizations are developing programs that bridge the gap between cure and hospice by offering home nursing care and support services while patients are still getting aggressive treatments. Medicare and many insurers cover these programs for homebound patients.
At MGH's cancer center, referrals to such bridge programs are increasing as hospice referrals fall, said oncology care coordinator Beverly Hudson.
''Ultimately, the system is not at all set up to support what patients need at the end of life," said Elizabeth Liebow, an official at Partners Healthcare who is working with the doctors and insurers to change that. ''It's not keeping pace with where the current treatments are."
Alice Dembner can be reached at dembner@globe.com.
