we’re all going to die, you know…

Today’s post is the 1st of a 5-part series, “Making Peace with Mortality,” by Dr. Margaret Peterson, associate professor of theology at Eastern University.

Peterson’s Ph.D. is in theology and ethics from Duke University. She received her first education in end-of-life care twenty years ago, as her first husband was living with and then dying of AIDS. She chronicled that experience in a memoir, Sing Me to Heaven: The Story of a Marriage.

Her second husband and former faculty colleague, Dr. Dwight N. Peterson, with whom she is the author of Are You Waiting for “The One”? Cultivating Realistic, Positive Expectations for Christian Marriage, has been in failing health for some years and entered hospice care (at home) in July of 2012. Peterson blogs daily about their end of life experience at www.caringbridge.org/visit/dwightpeterson.

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Medicare recently announced its intention to reimburse doctors for time spent talking with patients about their wishes for medical treatment near the end of life.

This plan was hailed by leaders of prominent medical organizations as an acknowledgement that advance care planning is an essential element of the practice of medicine.

The plan is opposed by the National Right to Life Committee, on the grounds (as stated by a NRLC spokesperson) that “there is pervasive bias against treatment that is occurring in advance care planning that involves nudging individuals to reject lifesaving treatment.”

Let’s step back for a moment and think about what is going on here.

“Advance care planning” means conversations between patients, families and physicians about the kinds of medical treatment that a person wishes to have as his or her life draws to a close.

It involves asking questions like:

• “Are you more worried about getting too much treatment, or more worried about getting too little treatment?”
• “Do you want to have as little pain as possible toward the end, even if this means you might not be fully conscious, or do you want to be as fully aware as possible toward the end, even if this means you may be in pain?”
• “Is it more important to you to have every medical effort made to keep you alive as long as possible, even if this means dying in intensive care or on a ventilator, or is it more important to you to be in a less medicalized setting, like your home, receiving care intended to make you as comfortable as possible?”

As things stand now, Medicare does not reimburse doctors for having conversations like this with patients. Medicare pays doctors for doing things to care for patients, but not for talking with patients about the patient’s goals and values and how these might inform decisions about how to care for the patient.

It’s like paying a lawyer to draw up a trust or will or contract, but not paying the lawyer to talk with the client about what the client’s goals and values are, and what kind of trust or will or contract might express the client’s values and help achieve the client’s goals.

In the absence of such conversation, even the best lawyer would be able to provide only the most generic service, and the client’s goals would likely not be accomplished.

So also with medical care. If the doctor isn’t paid to talk with the patient, the doctor is going to go with the default option, whatever that might be.

Which brings us to the objection of the National Right to Life Committee. The objection of the NRLC is that if doctors are paid to talk with patients about patients’ wishes for the end of life, those conversations may result in patients opting to reject “lifesaving treatment.”

So better not to talk about it. If end of life conversations don’t happen, then patients will get the default option, which is “lifesaving treatment.”

What could be wrong with this?

Lots, as it turns out. “Lifesaving treatment” at the end of life can mean medical treatments that increase suffering while resulting in no benefit to the patient.

Take CPR, for example. In elderly persons with multiple chronic health conditions, CPR is not a benign intervention (meaning something that won’t hurt and might help). On the contrary: in this population CPR is virtually guaranteed to result in a range of serious and painful injuries, and has a success rate approaching zero.

And yet, if patients don’t specifically opt out, CPR is what they get. “I would be doing the CPR with tears coming down sometimes, and saying, ‘I’m sorry, I’m sorry, goodbye,” says one doctor of clinical experiences early in her career. “It just seemed like a terrible way to end someone’s life.”

Why is the default option in end of life care so brutal? And why is it that people who think of themselves as being “pro-life” are too often the most vocal advocates for such brutality?

Tomorrow: How does the language we use to describe the experiences of illness and of dying fuel the brutality of so much end-of-life treatment?