In 1985, my grandfather, a farmer born at the end of the 19th century, asked me to promise to “drop a rock” on his head before letting anyone intubate him again.
He was not asking his recently graduated physician grandson for a crude form of physician-assisted suicide. He just knew that he didn’t want extreme measures at the end of his life. His request was a humorous way of expressing those wishes.
On July 8, the Centers for Medicare and Medicaid Services (CMS) proposed that Medicare begin paying for voluntary end-of-life care counseling by health care providers. After a 60-day comment period, a final decision will be made in early September. Payments would begin next January.
This proposal was originally included in the Affordable Care Act, but it became politically untenable and was dropped when opponents characterized it as “death panels.” The recent Supreme Court decision upholding the ACA likely convinced the administration and CMS that payment for end-of-life counseling would now have more support.
The politics of this issue are interesting and important, but a larger life (and death) reality involved affects every one of us. Every year, 2.6 million of our fellow citizens die. Eventually, we all confront that universal transition, personally of course, but also as we inevitably watch our friends and family members face death.
Since Medicare pays for the majority of care for the elderly, this decision will lead private insurers to pay for counseling as well. The Medicare proposal does not limit the number of visits billed. Some private insurers have already begun payments. The amounts currently paid range from $35 per conversation from Blue Cross Blue Shield of Michigan, to $150 for an hourlong physician conversation (and $350 for two hours) from Excellus BlueCross BlueShield of New York.
How we die has undergone profound change over the last couple of generations. Today we have many more medical and surgical care options. Mechanical ventilation, kidney dialysis and artificial nutrition are available. These options have added years of life for some. But the ability to prolong life by aggressive medical means can come with substantial human suffering and financial cost when the end is inevitable and near. This is particularly heartbreaking and tragic when the patient does not desire additional medical interventions.
Even though 70 percent of us die in hospitals, 70 percent would prefer to die at home. For some, continued acute care in a hospital is reasonable because some illnesses and injuries can be treated and recovery is possible. Intubation and ventilation means that respiratory failure is not always a death sentence. Feeding tubes or intravenous nutrition can allow time for recovery of normal food intake. However, many who die with Medicare coverage suffer from illnesses that are terminal — defined as medical problems that are likely to cause death within six months.
Even acknowledging the uncertainty of predicting how much time a person has left, it is important that options be discussed and resources made available to help individuals decide about end-of-life care. Each person has his or her own goals for life and death, ranging from extending life at all costs to forgoing treatments and support that could possibly extend life. End-of-life counseling is designed to openly discuss these individual values before treatment decisions must be made.
When counseling has taken place, it is important to formalize and communicate the personal decisions that have been made. These documents have many names — “advance directives” and “living wills” among them. In Minnesota, state law defines a “health care directive” as a document that informs others of your health care wishes and who you would like to make decisions for you if you are incapacitated.
The problem is that only 70 percent of Americans over age 60 have completed an advance directive. The percentage is much lower in minority communities. It is important to ask whether patients have advance directives and to encourage them to complete one. Hospitals and providers are measured on their compliance with making this request on registration or admission (though some pregnant women are understandably surprised to be asked about an advance directive when they arrive for the birth of their baby).
What makes for high quality end-of-life care? An excellent example is being set in La Crosse, Wis. For 15 years, the Gunderson Clinic has been sharing its Respecting Choices model of advance care planning. In its community, almost all who die have discussed and documented their wishes with their families and care providers.
In his 2014 book “Being Mortal: Medicine and What Matters in the End,” Atul Gawande describes how Respecting Choices “means that people are far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear.”
Gawande also observes that physicians are the occupational group least likely to receive heroic care at the end of life. That should tell us something.
Yet there is no universal template for high quality end-of-life care. It is much more than having a signed advance directive. A 2014 Institute of Medicine report lists core components. These include frequent assessment of a patient’s physical, emotional, social and spiritual well-being; management of pain and other symptoms, and offering hospice and expert-level palliative care when appropriate. Personalized revision of the care plan is also important as the situation changes.
Hospice care, either in the home or a residential facility, is a high-quality care alternative to the frequent default mode of death in an often impersonal and expensive hospital setting. In the Twin Cities, Allina and other organizations provide excellent hospice and palliative care. In their last days, patients (and their families) benefit from the continuous availability of pain control and support services from multidisciplinary teams. There is always a need for caring volunteers to assist in this important work.
But what about those “death panels”? Some polling suggests that 60 percent of people still believe they exist. The National Right to Life Committee has raised legitimate concern about a bias against life-preserving treatment in advance care counseling and planning. They point out that the primary focus seems to be on cost savings. These are valid concerns.
A 2013 British Medical Journal article reviewed the economics of advance care planning by looking at the available cost/benefit data as well as the ethical implications of promoting such counseling. The evidence for significant cost savings by counseling was found to be “sketchy,” and a major conflict was acknowledged between the desire for cost savings and the desire for nondirective counseling.
Openly dealing with this potential conflict will make it less likely that end-of-life counseling will be seen as a way for insurers to just encourage people to die cheaply.
Some also worry that end-of-life counseling eventually will include promotion of the option of physician-assisted suicide. Compassion and Choices is a national group that strongly supports payment for end-of-life conversations. However, it also has a vigorous “Doctors for Dignity” campaign that promotes euthanasia, using the euphemism “aid in dying” — no surprise since Compassion and Choices has roots in the Hemlock Society.
A common argument for assisted suicide says, “I couldn’t bear to see them suffer.” But while our projected personal feelings in the face of others’ suffering are real, they should motivate compassionate care rather than euthanasia. Dame Cicely Saunders, the founder of the hospice movement, said it well: “We will do all we can to not only help you die peacefully, but also to live until you die.”
Deep moral divisions exist concerning physician-assisted suicide. That debate will continue. But prolife/prochoice designations are not clear-cut on this issue of end-of-life counseling. Now-retired U.S. Sen. Tom Coburn is an ardent prolife physician whose support for end-of-life counseling was strong enough to propose legislation that would pay people to fill out advance directives. This is a complicated issue that deserves thoughtful consideration.
We are at our most vulnerable as the end of life approaches. Care options must be discussed, and payment for end-of-life care counseling is not the advent of “death panels.” This counseling is an essential part of health care that will be embraced if it promotes nondirective discussion of care options and does not become a Trojan horse for assisted suicide.
Anyone over age 60 should ask their doctor about end-of-life care counseling.
When my grandfather died 30 years ago his wishes regarding end-of-life care were honored because he had talked about them with his doctor and his family. No one needed to “drop a rock” on his head; no “death panel” decided his fate. He had lived until he died.
We all deserve such a good end.
Steve Calvin is a Minneapolis physician and co-chair of the Program in Human Rights and Health at the University of Minnesota School of Public Health.