Dying With Dignity

Death be not proud, though some have called thee / Mighty and dreadful, for, thou art not so,” wrote John Donne. The great poet drew strength and solace from his belief in heavenly salvation. Weeks before he died, in 1631, he delivered his own funeral oration, a sermon entitled “Death’s Duel,” in which he described life as a never-ending but ultimately hopeful struggle against suffering and death.

So here’s this month’s question: 378 years later, why aren’t we dying any better?

Obviously, we are living longer—human life expectancy has doubled since Donne’s time—and, even amid this recession, better than ever. But as modern, optimistic, technology-loving, forward-looking Americans, we not only hate to talk about death; we love to spend our time and money as though we will live forever. As a result, we tend to handle the end of life pretty terribly—financially as well as physically and emotionally.

Here’s what we want as we approach death, according to a wide variety of research conducted over many years: the chance to plan our final days in advance, doctors and nurses who manage our illnesses so that we’re not in terrible pain or out of our minds, and spiritual peace, however each of us might define it.

Here’s what we often get: aggressive, amazingly life-extending treatment—but also uncontrolled symptoms and persistent pain, depressive isolation and existential confusion. End-of-life care is still stuck where it was a dozen years ago, when a U.S. Institute of Medicine report stated: “People have come both to fear a technologically over-treated and protracted death and to dread the prospect of abandonment and untreated physical and emotional distress.” We also get huge bills. One in 20 Medicare recipients dies every year, but about 30 percent of all Medicare expenses are devoted to beneficiaries in the last year of their lives.

The fundamental problem with the way our health care system treats people at the end of their lives is that medical and long-term care are not integrated with palliative care, services that ameliorate suffering and focus on quality of life for elders and their families. There is a model for delivering palliation: hospice, which was developed in the 1960s by Cicely Saunders, a British nurse, social worker and doctor who treated terminally ill cancer patients, and which emerged in the U.S. about a decade later. Hospice is explicitly designed to ease the final days—caregivers manage clients’ pain, offer them ongoing spiritual support and involve their families in treatment decisions. And it’s usually administered at home, which is where most people want to die. More than 3,000 hospices around the country provide end-of-life care, and Medicare—and, in 47 states, Medicaid—covers a wide range of hospice services. But millions of Americans who need palliative care don’t get it because of bureaucratic and legal roadblocks.

For one thing, the federal government has standards for measuring how well nursing homes perform, but those measures do not focus on the prevention or relief of pain. Most people find this out the hardest way: They arrange for a parent to receive the best care they can afford, only to learn the facility doesn’t address the parent’s actual suffering. That’s partly because these institutions’ ability to accept Medicare and Medicaid doesn’t hinge on meeting that goal.

For another, to qualify for Medicare’s or Medicaid’s hospice benefit, a patient must have a doctor’s certification that he or she has a life expectancy of six months or less and must agree to stop “curative treatment.” But life expectancies are hard for physicians to estimate and even harder for families to talk about. And pitting “curative” against quality-of-life care presents patients with a false choice of prolonged life versus quick death. Research shows that, on average, aggressive treatment (more doctor visits, hospital stays and invasive procedures) doesn’t extend patients’ lives. Overall, too many people who need palliative treatment can’t get hospice care, and those who do can’t afford to live too long.

Finally, Medicare pays hospices a flat, daily per-patient rate. But hospice care isn’t routine; it’s often very costly. And state governments, which administer Medicaid, continually put hospice payments on the chopping block when they face budget crises. (People near death don’t form a powerful lobby.) As a result, many hospices are short on cash, which can lead them to cut back on treatments and shun potentially expensive patients.

It’s not even clear that these regulations are saving the federal government any money. As a 2003 report by AcademyHealth, a health care think tank, stated: “The relative cost of caring for patients at the end of life through hospice versus traditional care has not been calculated definitively.” Palliative care has its price tag, but connecting more people to it could well avoid many of the huge costs run up by the extreme treatments many patients receive in the very last days of their lives. We don’t know what the final net tally would look like if we encouraged more nursing homes and assisted-care facilities to develop end-of-life plans, boosted reimbursement rates and got more people into hospice. But at least the right power players are starting to ask these questions. The Health Care Financing Administration and the Office of Management and Budget are looking at how to use the federal government’s purchasing powers more rationally.

In the meantime, there are a few steps you can take to protect your family’s finances as you plan end-of-life care for your loved ones and yourself. First, stay healthy. Avoiding chronic disease makes it more likely that you will live longer and less likely that you will experience a prolonged illness leading to pain and death.

Second, talk explicitly with your family and doctors about how you want your life to end—what kind of treatments you’re willing to undergo, for how long and where. If you don’t, it will cost you. Terminally ill cancer patients who didn’t have end-of-life conversations with their physicians had health care expenses 55 percent higher in the final week of their lives than those who did, according to a study released in March by the Dana-Farber Cancer Institute.

Third, find a caregiving institution that matches your views and values. Thanks to a free, easy-to-use online tool called the Hospital Care Intensity Report, you can get an idea which hospitals near you are aggressive in treating chronically ill patients and which are conservative. The differences can be staggering. For instance, at East Orange General Hospital in New Jersey, patients spend an average of 30 days in the hospital and have an average of 96 physician visits in the final six months of their lives, and only 8 percent die in hospice. In contrast, at Ogden Regional Medical Center in Utah, patients spend just eight days, on average, of their last six months in the hospital and get 18 doctor visits; 47 percent die in hospice. Obviously, you also need to weigh other quality indicators and the advice of doctors you trust, but the hospital intensity report is an excellent way to gauge how much intervention a hospital will undertake after you check in.

When it comes to end-of-life care, the medical establishment and the government have their work cut out for them. But clear conversation and good planning can make death a little less proud.