As a palliative care physician, I’ve been fascinated, amused, shocked and embarrassed, in more or less equal measure, by the myths that have circulated about end-of-life care in the past few months. I’ve been fascinated, for instance, by how outlandish some of them are. (Death panels? Really?) And I’ve been amused that a few people seem to take them so seriously. But I’ve been shocked at how vocal those people have been. And I’ve been embarrassed that instead of engaging in a thoughtful dialogue about how we die, and how we should die, we’ve been immersed in a shrill shouting match about issues that bear no relation to the reality that my patients and I face every day. The most prominent myth, about death panels, has been effectively debunked. But there’s a larger misunderstanding that is a barrier to much-needed dialogue about end-of-life care, and that is that end of life care offers a valuable opportunity to cut health care costs.
First, we need to stop thinking about expenditures in the last year of life as being “wasted.” As a rhetorical device, this argument is quite compelling, and commentators have used it to good effect. The idea is that we’re spending far too much money on people who are dying. If we could just restrict treatment for those people “who are going to die anyway,” this argument goes, the resulting cost savings will be substantial.
And it’s true enough that the numbers are impressive. For instance, we hear that 25% of Medicare expenditures are in the last year of life, and that 10% of spending occurs in the last six months. Faced with these figures, it’s easy to conclude that those Medicare dollars could be better spent elsewhere.
But this conclusion ignores the fact that very few of us will know that we’re in our last year of life until that year ends. Even the most sophisticated models predict survival with very wide confidence intervals. In fact, one study of hospitalized patients found the most stringent criteria correctly predicted 6-month survival only about half the time. And those criteria were so narrow they could only be applied to 2% of patients.
So if this argument is a rhetorical success, it’s a logical failure. Adding up costs in the last year of life is a little like calculating how many minutes you’ve spent running for trains that you didn’t catch. That number is meaningless, because of course you don’t know that you’re going to miss those trains until they glide away from the platform.
Instead, we should be thinking about other ways to control costs that don’t require an oracular prediction of the future. We should look carefully, for instance, at tests and treatments that aren’t effective. And we should examine conditions like advanced dementia or Stage IV lung cancer for which most treatments don’t offer significant benefits. But the focus should be on effectiveness and cost, not on specious logic.
Nor should we look to hospice to save money. Hospice does save an average of about $2300 per patient, according to one estimate. But there are three problems with that simple statement.
First, $2300 is not very much. What will $2300 buy? An MRI, perhaps. Or two days in a hospital. Maybe one day in an ICU if you’re lucky.
Second, those costs savings are very small in relative terms. Typical Medicare expenditures for someone in the last year of life are $25,000 or more. So cost-savings attributable to hospice are unlikely to have a major impact on overall health care costs.
Third, even though a month in hospice costs less than a month spent in an ICU, hospice isn’t cheap. High quality care costs money, and hospice care is no exception. When we pay for hospice, for instance, we’re paying for an interdisciplinary team of a nurse, a physician, a chaplain, a social worker, a home health aide, and others as needed. And for many patients, the cost of hospice includes continuous nursing, or care in a dedicated hospice unit that is designed for the comfort of patients near the end of life and their families.
We’ll all need end-of-life care eventually, and so we all have a stake in ensuring that care is the best it can possibly be. That’s the goal of hospice care, and that’s what we should all be focusing on. Not cost savings, but quality. Not dollars, but outcomes.
Most importantly, we need to avoid the trap of thinking that rationing care at the end of life is a painless way to reduce health care costs. Implicit in many conversations about cost savings and end-of-life care is the argument that no one will miss care that is withheld at the end of life. There is a sense that these cuts will be painless and therefore politically expedient. However, nothing could be further from the truth.
If we fail to provide good end-of-life care to a patient, that patient’s family will never forget it. My research team has done interviews with more than 5,000 families of people who have died in hospitals, nursing homes, and hospices across the country. In those conversations, we’ve heard some stories of good care, but far too many stories of bad care. And what’s most striking about those bad stories is how firmly they remain embedded in families’ minds.
That’s certainly true of a treatment that was withheld or a diagnosis that wasn’t made in a timely way. Years later, families obsess over these events, and they wonder whether things could have been different. They blame themselves, and of course they blame the health care system that failed them.
Families also remember a patient’s suffering. For instance, in these interviews, families are often tearful as they describe vivid images of a father’s uncontrolled pain or a grandmother’s terrifying delirium. We’ve learned that a single bad experience can indelibly color memories of a loved one’s last days.
So cutting costs at the end of life is not as painless as it might seem. Whether it’s life-sustaining treatment or hospice, the care that people receive today will leave families with memories that will last a long time. And that is care worth paying for.
