The recent death of Brittany Maynard, a 29-year-old woman with terminal brain cancer, sparked a national debate on the end of life and the right to “death with dignity.”
Eschewing aggressive treatment for her illness, Maynard chose when to end her life, using medication legally prescribed under Oregon’s Death with Dignity Act. Over the course of her illness, she became an outspoken national advocate for the so-called “right to die” movement.
But even apart from the debate over the ethics and legality of assisted suicide, Maynard’s life and death prompt an even more fundamental question: Does the nation’s health care system adequately account for patients’ wishes at the end of life?
Third Way Senior Fellow David Kendall says the answer is no. Rather, he says, the current system incentivizes intensive – and costly – intervention at the end of life. In 2006, slightly more than a quarter of all Medicare payments was spent on treating patients in their last year of life.
Kendall argues that simple steps can help ensure that more patients’ wishes are expressed and respected.
R3.0: What impact do you think Brittany Maynard had in sparking the right debate around end-of-life?
Kendall: The most important lesson from her life is the way she took control of it.
But let’s understand that the desire for control by a younger person [like Maynard] is the same as what older people also want. It’s natural to assume that younger people want control of their lives but that as you get older, you somehow lose that desire. In fact, the desire to keep control increases as you get older.
R3.0: Does our current health care system do enough to give people that sense of control, especially as they age?
Kendall: No. A survey of older Americans shows that 86 percent would prefer to spend their last days at home, instead of at a hospital or a nursing home. But in fact, only 24 percent of people do. Our health care system today is not giving people what they want.
R3.0: Why not?
Kendall: Our incentives are aligned to pay doctors a fee for every service, so they have a strong incentive to do as much as possible with as much technology as they can. But there’s very little incentive for doctors to step back and listen to what patients want.
People who are asked their preferences and who express those preferences are generally more satisfied with the care they receive – provided that patients’ preferences are made clear to doctors in a way that they can act on it. They also end up receiving less care as a by-product of having more control.
R3.0: What are some of the best ideas you’ve seen for ensuring that patients’ preferences are expressed and respected in the appropriate way?
Kendall: Making advance directives better and more available would go a long way toward helping patients. There’s nothing more powerful than having a video recording of what your mom wants that you can listen to and get an understanding of what she wants at the end of her life.
Advance directives should be online, available 24/7 and should be included in any electronic health records. That’s a simple step.
Doctors also have to have the time to understand what patients need and then coordinate the care to make sure that’s what received. In organized systems of care, this happens without an act of Congress. For example, the Gunderson Health System in Wisconsin, led by nuns, has pioneered the highest use of advance directives – and it also happens to lower costs.[In terms of specific legislation,] there’s a bill sponsored by [Sens.] Tom Coburn and Chris Coons, the Medicare Choices Empowerment and Protection Act, which gives Medicare beneficiaries a one-time incentive payment for creating an online or paper-based advance directive. What this would do is recognize that patients’ preferences do matter and that we have to provide those instructions to doctors in a way that’s acceptable.
Another bill, which [Sens.] Mark Warner and Jonny Isakson have introduced, would create a Medicare and Medicaid benefit for doctors who have end-of-life discussions with their patients. It’s a crazy example of how in our fee-for-service system, we have to provide a payment for doctors to have that conversation. It should be the most natural thing in the world.
Another important development in laying the groundwork for a broad-based approach to end of life is the work being done by the Coalition to Transform Advanced Care. It’s a broad-based coalition of health plans, consumers, doctors and hospitals who are all trying to identify best practices in this area and then offer those best practices up.
R3.0: Politically, how do you have this discussion the right way? How do you avoid talk of “death panels,” especially since cost is an issue?
Kendall: The emphasis needs to be on what patients want and how they generally don’t want as much intensive high-technology care as they’re given.
Beyond that, we need a bipartisan approach to improving health care quality and lowering costs. What we have to do is get to the point where both parties realize they have a lot at stake in improving quality and reducing the costs of health care.
R3.0: Physician Ezekiel Emanuel also wrote a much-talked-about essay on the end of life in which he said he “hopes to die” at age 75. That seems awfully young. Can public policy accommodate personal and subjective judgments about what “quality of life” means?
Kendall: I think Dr. Emanuel was expressing his personal preference, and in doing so, he was telling people that you, too, can decide on this issue for yourself.
Public policy has to allow people to have some control over their health care, and we have to remove the obstacles that prevent them from exercising that control. But beyond that, we shouldn’t be telling people when is the best time to die.
David B. Kendall is Senior Fellow for Health and Fiscal Policy at Third Way. Follow: @DavidBKendall