In another era, death was a family affair. The sick lay in their beds at home, surrounded by relatives, maybe some close friends and a clergyman. There was no sanitizer smell, no hum of medical equipment. It was ordinary life, ending.
Then doctors got really good at saving lives, and Americans got used to taking even their sickest into the hospital, hoping against hope.
When the miracles ran out, the sick died not at home, not with family, but in a strange place, surrounded by medical staff. A University of Pittsburgh study in 2004 found 20 percent of Americans died in intensive-care units, and almost as many died in other hospital units.
The hospice movement has been trying to change that for years now, trying to make death a little more human again, more personal – and not just at the very end, but for the weeks or months leading up to it, if the patient knows it’s coming.
The problem is, because hospice care normally involves ending treatment and focusing just on pain control, comfort and psychological and social support, it has long been viewed as a tradeoff: Die sooner, but live better in those final days.
New research is challenging that notion.
A study published in the Journal of Pain and Symptom Management’s March issue, based on a review of survival times for 4,493 Medicare beneficiaries with six types of terminal cancer and congestive heart failure, showed hospice patients lived, on average, 29 days longer.
Some did far better than others: Hospice only added four days to prostate cancer patients’ lives, but 39 for lung cancer patients, and 81 for those with congestive heart failure.
The latter is particularly striking, the study noted, because while many terminal cancer patients are referred to hospice, few congestive heart failure patients are. And because the impact of hospice is so substantial, the researchers wrote, doctors should consider a referral to hospice for any patient with these conditions whom they expect to die within three years.
“We believe that this is a fairly strong statement,” wrote the researchers, who were based at the National Hospice and Palliative Care Organization and Milliman Inc., a New York-based health care consultancy. The average patient studied, they noted, was in hospice for 43 days.
For longtime believers in hospice, this new research is not only a validation of their work, but a powerful tool to help persuade more people to embrace hospice care, and not just when death is imminent.
Medicare covers hospice care once a doctor certifies that the patient is likely to die within six months – though the benefit can be extended as needed. Private insurance covers it as well.
“The hospice benefit is very rich, very well funded, and very comprehensive,” said Dr. James Burrill, a geriatrician and a medical director for Blue Cross & Blue Shield of Rhode Island. Hospice care includes not just medical care, but psychosocial, mental and spiritual care, he added, but that takes time. If a patient only enters hospice shortly before dying, “it’s not really giving a chance for that benefit to do what it can for the family.”
And in the Rhode Island, even with a major provider and expert resource, Home & Hospice Care of Rhode Island, operating in the state since 1976, hospice care has not been widely embraced. A national study found that as of 2003, Rhode Island was “the worst state” for use of hospice care, Burrill said, with a median length of stay of only 12.5 days.
(Most patients don’t actually “stay” in a hospice facility; Home & Hospice Care’s inpatient center only has 10 beds, and most patients are cared for in their homes, but that time is included in the statistics.)
Recent figures from Home & Hospice Care suggest things may have improved: While the median stay is 13 days, the average length of stay rose from 35 to 46 days between 2005 and 2006. And the number of patients has steadily grown, from 2,287 in 2003 to 2,610 last year.
Another positive trend, said Dr. Edward Martin, medical director for Home & Hospice Care, is that Rhode Islanders are seeking hospice care for a wider range of terminal conditions. Oncologists have always referred patients to hospice, he said, but now patients are coming in with everything from Parkinson’s disease, to Alzheimer’s, to heart problems.
Hospice care providers also have become more flexible, Martin said, to encourage patients to seek services earlier and to help them ease into the mindset that they’re going to die. That might mean not asking for a do-not-resuscitate order for several visits, for example, or not objecting to a hospitalization if it will help the patient and death is not imminent.
In addition, Martin said, some treatments are now viewed as forms of palliative care: A cancer patient might still get radiation, for example, to control pain, and a congestive heart failure patient could still take drugs to manage the condition.
Yet by definition, entering hospice means accepting the likelihood, if not certainty, of death, and that’s the biggest obstacle to patients’ starting early, when they can benefit most.
Dr. Fred Schiffman, director of cancer services at Lifespan and a strong believer in hospice care, said even for doctors, it’s very hard to tell when it’s time to give up.
“One of the most difficult things for any physician … is where that boundary is between doing everything and recognizing that it’s futile,” he said. “That boundary is often a very difficult one to discern, and it can’t be done casually.”
Burrill, who was involved in a Blue Cross-funded study from 2004 to 2006 that sought to increase referrals to hospice, said it’s also difficult to judge just how long a patient might survive. Once the doctor has told a patient he’s going to die, however, a referral to hospice care is “probably the most valuable resource” he can offer.
The Blue Cross study didn’t actually find a way to get doctors to refer patients to hospice earlier, Burrill said, so he’s hopeful that this new study might help raise public awareness. The insurer has been working to educate doctors about end-of-life issues and persuade them to discuss those issues with patients when they’re still healthy.
“You can’t discuss hospice with someone if you haven’t even discussed what you want to do if things turn bad in the future,” he said.
