Naomi’s post (below, January 5) says everything that should be said about the administration’s decision to reverse its position on end-of-life planning. She nailed the story (thank you, Naomi).  

I’m tacking on a postscript only to report that tonight (January 5), Boston surgeon and New Yorker writer Dr. Atul Gawande talked about the turnaround, calling it “a tragedy” in an interview with Chris Hayes on MSNBC’s “Countdown with Keith Olbermann.” (This evening Chris Hayes was filling in for Olbermann.) 

As Gawande explained, research shows that when patients have more time with their doctors to discuss end-of-life care, they are less likely to die in a hospital or in an ICU.  

Most of us want to die at home. In a hospital, we are tended by strangers. Many may be kind, but, still, we are subject to the hospital’s schedule and hospital rules. As one physician who worked in an ICU explained when I was writing Money-Driven Medicine: “The patient becomes part of ‘the system.’” When she said that, I couldn’t help but think of criminals entering our prison system. Most of the time, hospital patients, like inmates, are told what will happen next. Rarely are they asked: “What would you like to happen next? Would you like to see your children this evening?”

In an ICU, visits from family and friends are even more limited, and some patients wind up strapped to their beds. Admittedly, this can be necessary. Otherwise, when patients are delirious or in pain, they may try to leap out of bed or tear out the tubes that are keeping them alive. Hospitals cannot station a nurse at the bed of each patient 24/7. And they don’t want to be sued because a patient hurt himself.

 At home, relatives and close friends can take turns being at the patient’s bedside–especially if the family has help from hospice or palliative care workers taking on other tasks.  

Palliative Care–How Many Patients Know That They Should Ask For It?

It’s not just that patients who receive palliative care or hospice care are more comfortable during their final weeks or months.  As Gawande pointed out tonight, a recent study published in the New England Journal of Medicine  (NEJM) showed that lung cancer patients who have an opportunity to talk to palliative care specialists about end-of-life care are more likely to wind up getting hospice care –and actually live longer than patients who stay in the hospital.

But most patients don’t even know what “palliative care” is. They don’t realize that it is for any patient who is seriously ill–whether or not she is dying. Palliative care experts are specially trained in controlling pain. And they also know how to talk to a patient about her options, if the current treatment doesn’t go as well as expected. At the same time, palliative care specialist let patients take the lead; they don’t push them to talk about end-of-life care.

       Why Do Doctors Need to Be Paid For End-of -Life Conversations?

The regulation that has just been changed stipulated that Medicare would reimburse primary care doctors for talking to patients about end-of-life care during an annual physical.

Critics ask: “If this dialogue is so importantly, wouldn’t most primary care physicians be willing to discuss end-of-life care with Medicare patients even if they aren’t paid for their time?"

No doubt, many would have the conversation with a few patients. But if 30% or 40% of a doctor’s practice are on Medicare, she cannot afford to have long discussions that require great tact and time with all of those patients. She wouldn’t be able to make her overhead. And a doctor can’t just introduce the subject, then look at her watch after giving the patient an extra 10 or 15 minutes and say “Sorry, time’s up.”

Earlier this week, talking to Democracy Now, Gawande explained: “Emotions get opened up .  . . Having really careful discussion about people’s fears and concerns” takes time." Meanwhile, “neither doctor nor patient is comfortable . . .   Getting that cost-barrier out of the way, that’s crucial,” he added. 

Candid as always, Gawande acknowledged that “learning to get good at these conversations” won’t happen overnight. But if Medicare encourages physicians to initiate such discussions by paying them for this service, Gawande suggested that they will begin to feel that talking about end-of-life issues is part of their “responsibility.” And with practice, they will become much more comfortable–and better able to help their patients.

Gawande should know. He has had some experience in this area. Tonight, on Countdown, he said, “I’m a cancer surgeon. I have conversations with my patients about their end-of-life frequently.”  (As a surgeon he is much better paid than a primary care doctor, and can afford the extra time.) But, he points out that it can be far more difficult to broach the subject when a patient is dying.

“Recently I wrote about a young cancer patient who was diagnosed while pregnant with her first child–and, as it turned out, her only child,” Gawande recalled..(See this New Yorker article, “Letting Go.”  I wrote about “Letting Go” in a recent post on palliative care.

Many doctors were involved in the case, and a “variety of errors” were made, Gawande acknowledged. “It wasn’t that lack of payment was preventing us from having end-of-life discussions,” he explained. When a patient is dying, but still undergoing treatment, and in a state of denial, these talks are extremely sensitive, and extraordinarily difficult–not just for the patient, but for a caring doctor.

“I avoided it with this patient,” Gawande admitted. The other doctors also ducked the conversation. “The result, she died in a place where she didn’t want to –spending her last days in the hospital rather than at home with her still not one-year-old child. . . . We are in a system of care that does not provide great care for terminal illnesses.”

This is why it is so important for primary care physicians to be paid for the time it takes to discuss end-of-life options with a patient before he is seriously ill. This doesn’t mean that a physician should push a patient to make potentially upsetting decisions about whether he would want a feeding tube, or whether he would choose to be put on a ventilator. Just explaining what palliative care is (many patients have never heard of it), and that if a patient is in the hospital he has a right to ask for a palliative care consult  (some surgeons and oncologists will never tell him about it) could make all of the difference between dying alone, in pain, in an ICU, and dying at home, pain controlled, holding the hand of a loved one.