Yale Study Finds Many Terminally Ill Not Referred For Hospice Care

NEW HAVEN (AP) — Many terminally ill people who may be able to benefit from hospice treatment and counseling are not referred for such care, a study found.

A survey of 231 doctors around Connecticut found that an average of 55 percent referred their terminally ill patients for hospice care. Twenty-seven percent of the doctors surveyed referred less than a quarter of their patients.

Most doctors said they were knowledgeable about hospice care, but many did not know facts, such as the life expectancy needed to be eligible for hospice.

Doctors also reported that some patients or their families did not want hospice care, or they did not refer patients because hospice was not appropriate or because the patient died suddenly.

Researchers said more work is needed to help doctors better manage the tough job of telling terminally ill patients about their prognoses and discussing their options.

“The crux of it lies with the doctor-patient-family relationship. Eventually the very difficult discussion of terminal illness and death has to take place,” said Elizabeth Bradley, an assistant professor at the Yale School of Public Health, who studies end of life care.

Hospice is a philosophy of end-of-life care that provides terminally ill patients and their families with comfort, companionship, and spiritual and emotional support. Patients get help to alleviate physical pain and stress in the last months of their lives.

Connecticut is a leader in the hospice movement in the United States. Connecticut Hospice in Branford opened in 1974 as the first hospice in the country.

Because of Connecticut’s long connection with hospice care, the survey found doctors here were more knowledgeable about hospice than doctors surveyed in small studies in other states, Ms Bradley said.

Still, she said, many Connecticut doctors did not know facts about who was eligible for hospice. Patients can be eligible if they have six months or less to live, but many doctors in the survey thought the life expectancy was only two months.

Terminal illnesses are complex for doctors to handle, and what is good for one patient may not be right for another, said study collaborator Dr Terri Fried.

“I was not surprised at all by these results, but as a practicing clinician, I think the general response to the survey could be dismay; but I also recognize that not every patient is at a point in their disease where they are ready for referral, and not every family is set up and ready for hospice care,” said Dr Fried, a geriatric specialist at the Veterans Hospital in West Haven who teaches internal medicine at Yale Medical School.

First, doctors must be able to tell terminally ill patients clearly but sensitively that their illnesses cannot be cured, but that treatment is available to improve quality of life.

Also, doctors must have a clear idea of patients’ goals for the rest of their lives so they can recommend hospice care or other treatment, Dr Fried said.

This is a delicate business, Dr Fried said. Doctors do not want to wipe out any hope patients have that they might survive, and they have to gauge when patients and their families are ready to understand the prognosis.

“We’re not taught this,” she said.

Another problem with referring people for hospice care arises when doctors cannot predict how long a patient has to live.

In the study, a terminally ill patient was defined as someone with six months or less to live.

Many cancer patients are referred when they have only a few weeks to live, and they could have benefited from more time under hospice care, said Rebecca Hoyt, the manager of community outreach for Connecticut Hospice.

But, many people with congestive heart failure and other non-cancerous illnesses are referred too soon, Ms Hoyt said.

“Education is a key factor in referral, and educating physicians who is appropriate for hospice and who isn’t,” she said.

Connecticut Hospice operates a 52-bed inpatient facility in Branford and a home hospice care program. Other hospitals around the state also have inpatient and outpatient hospice services.

The survey included internists, family physicians, oncologists, pulmonologists, and cardiologists who had admitted at least five patients to the hospital in the preceding year.

The study was published in the December 22 issue of the Journal of Palliative Care.