Medical treatments in the weeks and days before death consume a disproportionate amount of health care spending, and can often lead to unnecessary suffering and unwanted medical interventions. But a myriad of factors makes it difficult for both practitioners and loved ones to respect patient autonomy and treatment preferences at the end of life.
"Matching our treatment goals to the values and preferences of the individual is a key part of ethically sound practice," says SPH alumnus Darin Zahuranec, MD, MS '09, an assistant professor of neurology in the U-M Health System who studies end-of-life decision-making.
Zahuranec notes that even when people attempt to give specific instructions to those who may actually make life-or-death decisions on their behalf—as with advance directives—evidence shows that such instructions typically do not account for all of the treatment decisions that may arise.
Further, different health conditions present different challenges. Patients facing a terminal illness, such as cancer, may have opportunities to discuss end-of-life treatment preferences with their families and doctors. But when a sudden unexpected illness, like a stroke, occurs, many patients and families are unprepared—especially as decisions often need to be made quickly, and the patient may be unable to communicate. This is particularly true with acute brain hemorrhage, a type of stroke with very high rates of early mortality. In about 70 percent of cases of acute brain hemorrhage, the withdrawal of life-sustaining treatment (e.g., a ventilator) precedes death. In such cases, family members are often placed in a position of making life-and-death decisions about treatment.
In a new study funded by the National Institutes of Health, Zahuranec and his team are exploring the decision-making processes that family members of people with brain hemorrhages undergo when considering treatment options. "In many cases, doctors and family members face a tradeoff between the possibility of death or survival with some disability, but our ability as practitioners to predict the impact of this disability on someone's quality of life is imperfect," Zahuranec says. " We're learning more about just how difficult this is for people, and we hope to be able to improve this process in the future."
Zahuranec's research is a powerful reminder that, while no advance decision-making can guarantee what happens near the end of a patient's life, if loved ones and practitioners address these issues ahead of time, they may find it easier to make sound treatment decisions for—and respect the autonomy of—the patient.
—Jillian Murphy, MPH '09, Project Manager, U-M Stroke Program
End-of-Life Decision-Making: What You Can Do Now
Darin Zahuranec, MD, MS '09, offers these recommendations for end-of-life planning:
- Consider your values and what is important to you. We are all going to die; how we die remains uncertain. It is fair to expect that our self-determination and autonomy as individuals be respected in all our medical treatment.
- Talk to your loved ones and doctors about your various treatment preferences, and continue to have these conversations as your health status changes.
- Take the time to formally grant durable power of attorney (DPOA) for health care to someone you trust so that person can make medical decisions for you in the event you are unable to speak for yourself.
For more information, visit Caring Connections, a program of the National Hospice and Palliative Care Organization. (Click on "Planning Ahead" for additional resources)
Since the early 1980s, Medicare has paid for kidney dialysis for any American who needs it, regardless of age. But because until recently Medicare paid a flat rate for basic dialysis treatment and associated tests and drugs, and a separate fee-for-service rate for additional medications and lab tests, costs kept going up. So Congress ordered the Centers for Medicare & Medicaid Services (CMS) to come up with a new bundled-payment system that would allow Medicare to pay a flat rate for dialysis, medications, and tests. CMS in turn asked the U-M Kidney Epidemiology and Cost Center (KECC) to develop the system.
"We looked at multiple years of claims data to determine what drugs and tests should be in the system, and we built a case-mix adjustment model as well," says Richard Hirth, associate director of KECC and professor and associate chair in the Department of Health Management and Policy. The goal was to build a cost-effective system that would provide equal access to all patients, regardless of how expensive their treatments were.
CMS implemented the new dialysis-payment system in 2011, and since then the use of injectable medications has dropped by approximately 25 percent, and Medicare payments for dialysis have gone down by two percent—or about $225 million per year. Dialysis facilities themselves are profiting because their costs have dropped by as much as ten percent. It's therefore expected that CMS will be able to reduce payments even further in the future. The new system also makes it easier for patients to receive dialysis in their homes. Hirth says the dialysis-payment system is the latest in a long-standing movement toward bundled-payment systems by both public and private payers. For more visit sph.umich.edu/kecc.