Hospice Explained

Many people are familiar with this way of caring for the dying, but misconceptions abound.

The modern hospice movement began in Britain, but “going into hospice” has become an increasingly American way to die, despite this country’s love affair with expensive medical technology. The number of Medicare beneficiaries receiving hospice services doubled between 2000 and 2005 (the last year for which figures are readily available), and Medicare spending on hospice services tripled in that time.

Demographics are a partial explanation for the trend. The American population is both larger and older, so more deaths occur each year — 2.4 million of them in 2005. Longer life expectancy may be a factor: people who have lived into their late 80s or 90s are perhaps more likely than younger people to forgo curative efforts with a low chance of success. It is difficult to quantify, but patients, their families, and physicians may be more open to the central, humane proposition of hospice care: it’s no kindness to medically extend a life when the person living it must make steep concessions to illness and frailty.

Few, if any, would argue that the growing use of hospice services is a bad thing. And in a country that can’t seem to get its medical bills under control, hospice services may save money — or, more precisely, save the Medicare program money. The cost studies have gone back and forth, but in 2007 Duke University researchers reported findings that showed that hospice services reduced Medicare spending by $2,300 per patient on average during the last year of life.

The profit motive enters in

Even if Medicare is saving money, hospice services have emerged as a profitable line of business in the last several years. About half of 3,000 or so Medicare-certified hospice agencies are now for-profit companies. Some of the traditional nonprofit providers complain that the for-profit providers “cherry-pick” patients who are less expensive to care for. The proprietary organizations may also have an incentive to skimp on services. Medicare pays — to both non- and for-profit alike — a flat daily rate of about $135 per patient for most hospice services, with some regional adjustments to account for differences in labor cost. Providing fewer services is one way to fatten up the margin between that flat rate and expenses.

Another problem: hospice services evolving into a form of long-term health care. Patients must have a doctor certify that they have six months or less to live to be eligible for the Medicare hospice benefit. When Medicare first started covering hospice in 1983, most of the patients had cancer. The prognosis was pretty predictable, and the six-month limit wasn’t a problem.

But now people with less predictable conditions — Alzheimer’s disease, chronic obstructive pulmonary disease — are going into hospice and living much longer than six months. Occasionally, the provision of hospice services can improve people’s health so they end up living longer. Study results published in 2007 showed that terminally ill patients who received hospice services lived 29 days longer than similar patients who didn’t get the services. The study was paid for by the National Hospice and Palliative Care Organization, a trade group of hospice agencies.

People who live longer than six months won’t necessarily lose Medicare coverage: doctors can ask that coverage be extended. But, legitimately, some hospice providers and experts worry that these long hospice stays are being used to patch over the gaps in American long-term health care — and that care intended for the dying is turning into care for the frail and chronically ill. Medicare’s complicated system for capping payments means some providers are having to pay back to the federal government money they received for taking care of these long-term hospice patients.

If you want to know more about Medicare regulation and coverage of hospice services, we’ve posted additional information on our Web site atwww.health.harvard.edu/health.

Clearing up the misconceptions

Hospice services have been available for decades, so many Americans have some sense of the core idea that hospice involves a shift away from treating disease and prolonging life, and toward ensuring comfort. Two notable books on hospice care have been published in 2008, Two Weeks of Life by Newsweek contributing editor Eleanor Clift and A Healing Touch: True Stories of Life, Death, and Hospice, a collection of stories edited by Richard Russo, a Pulitzer Prize–winning novelist. Proceeds from the sales of Russo’s book go to support a hospice in Maine, the state where he lives and teaches.

Still, hospice administrators, doctors, and nurses say many Americans have misconceptions about hospice services. The advent of for-profit hospice complicates matters. The buyer-beware radar goes on, although it’s unfair to cast all the for-profit companies as “bad guys.” Many provide excellent services.

Below are a few of the important things you should know about hospice care. Dr. Michelle Weckmann, medical director of the Iowa City Hospice and a staff physician at the University of Iowa Hospitals and Clinics, was especially helpful with preparation of this list.

Hospice is primarily a service, not a place… Dame Cicely Saunders started the modern hospice movement when she founded the St. Christopher’s hospice in south London in the 1960s. A quarter of Americans gets hospice care in hospitals or dedicated hospice facilities, but in this country, hospice is increasingly organized and financed as a service. About half of hospice patients get the services at home, and about a quarter get them in nursing homes.

…and it doesn’t mean full-time nursing. In emergencies (the caregiver gets sick, or pain suddenly increases), some agencies offer four-hour allotments of so-called continuous care. But for the most part, hospice services in this country don’t mean full-time nursing. So if the patient has difficulty bathing or going to the bathroom on his or her own, many families pay out-of-pocket for additional nursing or home health aide assistance. And if the patient is in a nursing home, Medicare doesn’t cover the room and board charges of the home. Families either have to pay these costs themselves, or have insurance that does.

Offering access to services is not the same as providing them. Medicare-certified hospice providers must have the services of registered nurses, home health aides, hospice physicians, and chaplains available to patients. But aside from the requirement that a nurse visit once every two weeks, Medicare doesn’t regulate how often those services are actually provided. In most cases, this works out fine. Every patient is different, and giving hospice agencies some flexibility makes sense. On the other hand, patients and their loved ones should be aware that a hospice agency has a lot of latitude in determining the services it provides and should ask (and push, if necessary) for more services if they think they’re needed.

Every patient is required to have a care plan. One way to keep tabs on the services that will be provided is to ask for a copy of the “care plan.” Medicare requires that each patient have one, and it should spell out, for example, how often a home health aide will come. Medicare also requires that hospice agencies keep records showing that the care plan has been followed. The plans should be reviewed every two weeks and adjusted as the condition of the patient changes. Families can ask for a copy of the care plan.

Patients don’t have to give up their doctors. Sometimes patients are hesitant about hospice because they think it will mean that they can’t keep their doctors. Similarly, doctors may balk because they think they are going to lose control over their patients’ care. But the Medicare benefit encourages doctors to “follow” patients into hospice, with hospice medical directors like Dr. Weckmann remaining in the background, serving as consultants.

Hospice doesn’t mean the end of medical care, even if it prolongs life. Under Medicare, patients in hospice agree not to get curative treatments for their terminal condition. But treatment related to the illness may continue if it’s keeping the patient comfortable, as may treatment of conditions unrelated to the terminal illness. Dr. Weckmann says hospice patients sometimes receive life-prolonging treatment for its own sake, unrelated to pain or other physical symptoms, if the extra time alive would serve spiritual or emotional needs — say, giving a loved one time to visit.

Care related to the admitting illness is the responsibility of the hospice provider. Hospice jargon for a patient’s terminal illness is “the admitting illness,” and the hospice provider must cover the costs of any care related to that illness. For conditions not related to the admitting illness, regular Medicare coverage kicks back in. Doctors and patients often think that choosing hospice means opting out of conventional Medicare coverage entirely, and that’s not the case.

Still, the split coverage can be confusing. The arrangement puts some pressure on the hospice agencies to keep expenses related to the admitting illness down, which is usually appropriate but may cause some friction if the patient’s doctor wants a test ordered or a procedure done that the hospice must pay for.

Don’t underestimate the importance of volunteers. Many community hospices have large groups of volunteers who can be especially helpful in giving families an occasional break from caregiving duty so they can run an errand, take a nap, or attend to a child. One advantage some nonprofit programs have over their for-profit counterparts is their volunteers.

Morphine is still a mainstay. A complete discussion of the drugs used in hospice is beyond the scope of this article, so we’ll touch on just a few points.

  • Nurses provide advice and guidance, but families actually give the drugs. This is a big, somewhat frightening leap into hands-on medical care for many people.
  • Morphine remains an important drug. In addition to being a potent painkiller, it acts in the brain to relieve the panicky sensation of “air hunger” as the breathing of dying patients gets faster and shallower. Morphine is used partly because it’s short-acting, but that can also be a disadvantage. Some hospices use longer-acting methadone instead.
  • Anticholinergic drugs like atropine are used to dry up airway secretions that make breathing difficult, but they can worsen the confusion that’s often part of the “active dying” process. Dr. Weckmann says glycopyrrolate (Robinul) is a good alternative for some patients because it doesn’t cross the blood-brain barrier and therefore doesn’t contribute to confusion.
  • Hospice patients often become agitated and anxious, so anti-anxiety medications like lorazepam (Ativan) can be helpful.

Bereavement counseling is supposed to be available. Hospice services shouldn’t end when the patient dies. Medicare requires agencies to provide bereavement services to families for up to a year after the death. Bereavement itself can have debilitating consequences. There’s little oversight of the bereavement requirement, so hospice agencies may not always provide the services that they should.