Today I’m pleased to have a guest post from Lois Shepherd, author of If That Ever Happens to Me: Making Life and Death Decisions after Terri Shiavo. Shepherd was a lawyer living in Tallahassee during the sensational days of the Schiavo case. Her book strips away the politics and semantics that tend to oversimplify the complex ethical issues at stake in caring for loved ones at the end of life. Shepherd now teaches law and public health in Virginia. In this post, she brings her expertise in end-of-life decision making to the debate over health care reform. Her proposal would lower overall costs, empower patients and families, and compensate care givers fairly.
Many Americans agree that much of the aggressive medical care provided at the end of life today is unhelpful and can even be burdensome. Much of it is costly and wasteful. But can we agree on the specifics? What should happen in this case or that? More importantly, do we need to agree?
When President Obama spoke recently about the medical care his grandmother received before she died, he put it in the context of health care reform. His 85-year-old grandmother, diagnosed as terminally ill with cancer, received a hip replacement after a fall. While the idea appeared to be that the new hip would make her remaining life more comfortable — and therefore worth the discomfort and risk of the surgery — what happened instead is that she died two weeks later as a result of it. President Obama said that, had the surgery not been covered by Medicare, he would have paid for it himself if need be, but that the situation did raise the question whether asking society to pay for such treatment is a “sustainable model.”
Was President Obama suggesting the rationing of health care services? The comment was made in the context of health care reform. Conservative commentators latched on to the idea, raising the specter of capricious governmental intrusion into private decisions.
Others, like Ellen Goodman, were more thoughtful, pointing out that more aggressive treatment is not always better treatment. Many times what is needed is simply more conversation among doctors and patients and families about the goals of treatment. We might then save both money and heartache. Avoid the chaos and confusion that accompanies last-ditch efforts to do something. Allow the “peaceful” deaths we all want — maybe even at home.
The essential idea here is that better end-of-life care can cost less and this less costly care can be achieved without government intrusion into private decisions.
But government is already deeply involved in our health care in ways we don’t see or understand. With its heavy reimbursement hand (the government pays for 45% of Americans’ health care costs), it incentivizes performing procedures for which a provider might be paid thousands of dollars rather than engaging in careful conversations about whether to do them, for which one may be paid nothing. This further incentivizes medical students to become specialists who do expensive procedures, rather than becoming internists or geriatricians who might coordinate care to ensure that the health care goals of the patient are honored. Once in the hospital, it’s difficult for the patient to know who his doctor is. There are at the same time so many and no one. How can this patient have a conversation with a doctor who doesn’t exist?
As our country approaches health care reform, we don’t have to decide that an 85-year-old terminally ill patient should or should not have a hip replacement, either in a specific case or as a rule. We do need to learn more about the probable outcomes of such procedures and what patient characteristics make certain odds more or less favorable — knowledge with such obvious value it’s curious why there isn’t more of it. The Obama administration is already putting money into such research and plans to emphasize it in the future. But to what use might we put this information? Not rationing. Health care decisions are not simply calculations of physical well-being, discomfort and vulnerability. These decisions also involve emotional calculations of an intensely personal — and interpersonal — nature.
Policy makers can’t decide whether a hip replacement should be undertaken so that a woman might attend her grandson’s inauguration or whether it would carry too much risk of resulting death prior to his election. We don’t want them making these decisions, and we likely don’t need them to.
Who needs this information the most are physicians and their patients. Even more important, they need the freedom and the invitation to talk together about the options before them. We’ve known this for a long time. But we haven’t yet created a system to provide it — in fact, the current financial incentives work against it. Expensive tests, procedures, and hospital stays are the norm even when unwanted and unhelpful.
As we move forward with health care reform, let’s put our money where our mouth is. Let’s create financial incentives — rewards even — for conversation and consultation and coordination. A lot of the wasteful and unwanted care should fall away.
University of Virginia