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About nine months ago, John Polanowicz was in a hospital room at Brigham and Women’s watching his 44-year-old brother-in-law Bobby struggle to breathe. Bobby had advanced lung cancer. Now, with a tube down his throat, he was trying to respond to questions about his end-of-life wishes using a marker on a white board.
"We were all trying to decide," Polanowicz recalled, "would we keep him trached and vented, and hope against hope that there would be some change in the disease process?"
Bobby was losing the battle with cancer. He had wanted to fight to the end, but no one had talked to Bobby about how to deal with the end.
"It would have been much easier for the family to have had some of these conversations before 4 in the afternoon on the day that he passed," Polanowicz said.
On Friday, Polanowicz, Massachusetts' secretary for health and human services, posts regulations designed to help patients like his brother-in-law avoid describing their final medical wishes with an erasable marker. Doctors, hospitals, nursing homes and other health providers in Massachusetts are now required to offer end-of-life counseling to terminally ill patients. The requirement, part of a 2012 law, takes effect Friday with the posting of rules about how it will work.
It's believed to be the first such rule in the country. A similar proposal in 2009 for Medicare patients triggered claims that the government was trying to create "death panels."
In Massachusetts, hospitals are to identify patients who are in their last six months of life — something state regulators acknowledge is not an exact science.
"Nobody has a crystal ball, so it can be challenging," said Dr. Madeleine Biondolillo, an associate commissioner of public health. "But there is plenty of evidence in the literature that can guide the providers."
A nurse or physician caring for the patient will then ask if they want to discuss care options. Do they want to be kept alive by any means possible, are they ready to stop treatment, or do they want to consider some options in between?
The state has a sample brochure that providers can give patients, available in nine languages.
Biondolillo says the hope is that asking patients if they have an end-of-life plan will become as routine as checking their meds.
The state will review whether hospitals are following the rule and compliance could become an issue in a facility's licensing review. But the state is not focused on enforcement right now.
"This is new, this is important," Biondolillo said. "It’s ground that hasn’t been covered by all these organizations before. We’re going to learn as we evaluate what’s going on on the ground."
The Massachusetts Hospital Association does not expect opposition to the requirement. Vice President Tim Gens says hospitals are already having end-of-life conversations with appropriate patients, and that rules will help standardize efforts across the state.
State regulators say patients will not have to choose between continuing treatment and talking to their doctor about how they want to die. "There's nothing in the regulations that will slow down treatment for a disease," Polanowicz said.
Some doctors may worry that the government is interfering with the physician-patient relationship by imposing these rules. Providers can skip the requirement if talking about death conflicts with a patient’s religion or if the patient has said they aren’t interested. But there is widespread agreement in Massachusetts that more end-of-life planning is a good idea and that this requirement will help.
"This is going to be a major step forward in preventing the problem we have, which is we know we ought to talk about these things but it’s always too early until it’s too late. And now it’s going to start happening earlier when it needs to," said Dr. Lachlan Forrow, who chaired an expert panel on end-of-life care in 2011.
Andrew Beckwith, president of the Massachusetts Family Institute, has one caveat in his support for end-of-life counseling. If assisted suicide becomes law in Massachusetts at some point, Beckwith wants to be sure doctors are not required to discuss that option with their patients.
"We know that the vast majority of doctors want to help their patients die a natural and dignified death, not to include this ethical Pandora’s Box of assisted suicide," Beckwith said.
Of course, offering counseling is not effective unless patients take up the offer. So we’ll see now how many of us are ready to have that very difficult conversation.