Dr. Don Berwick often speaks of the Affordable Care Act as a “majestic” law. Yesterday afternoon the former Centers for Medicare & Medicaid Services administrator spoke during the annual conference of the Cambridge-based Institute for Healthcare Improvement, which he led for nearly 20 years, about experiencing majesty.
Berwick told a story about the steady pace of progress, about visiting the Lincoln Memorial as a 12-year-old and again last week, on his last night in Washington. He noted the addition of Dr. Martin Luther King’s name to the monument and the date he delivered his famous speech there.
“When I first stood at that spot, the Montgomery Bus Boycott was only three years in the past, and Dr. King’s speech lay five years in the future,” he said. “I thought, standing there, of something I once heard Dr. Joseph Juran say: ‘The pace of change is majestic.’ And I mused about that majesty, and its nature.”
Berwick outlined five principles to guide change in health care:
1. Put the patient first.
2. Among those, put the poor and disadvantaged first, “those in the beginning, the end, and the shadows of life. Let us meet the moral test.”
3. Start at scale. “There is no more time left for timidity. Pilots will not suffice.”
4. Return the money. “It is crucial that the employers and wage-earners and unions and states and taxpayers – those who actually pay the health care bill – see that bill fall.”
5. Act locally. Every community must mobilize, he said.
Below are a excerpts from his prepared remarks, including his take on the “death panels” debate, rationing, and a call to act.:
The time at CMS has been a privilege. I got the chance to work with thousands of career public servants, and to learn how much these people do for us all, unsung and too often unappreciated. These are the people who translate laws into regulations and regulations into deeds. In CMS these are the people who keep the lights on – they see that providers get paid, they protect the public trust, they help the most vulnerable people in America, and make sure that they get the care they need.
And, I got the chance to help pilot toward harbor the most important health care policy of our time – the Affordable Care Act. A majestic law. I learned that a law is only a framework; it’s like an architect’s sketch. If it’s going to help anyone, it has to be transformed into the specifications that regulations and guidance documents. Only then can become real programs with real resources that reach real people. On my expedition, that, mostly, was what I was doing.
I would have loved to keep at that job longer. But, as you know, the politics of Washington, and especially the politics of the United States Senate, said, “No.” But, overall, I don’t feel an ounce of regret. What I feel is grateful for the chance I had to serve, and for the generous support I felt, including from so many of you.
I want this afternoon to share with you a little of what I learned on the expedition; and what I think it means for you – for all of us. It’s a sort of good-news-bad-news situation. The good news: the possibility of change has never been greater – not in my lifetime. The bad news: if it’s going to be the right change, the burden is yours.
. . . .
Cynicism grips Washington. It grips Washington far too much, far too much for a place that could instead remind us continually of the grandeur of democracy. . .
Cynicism diverts energy from the great moral test. It toys with deception, and deception destroys. Let me give you an example: the outrageous rhetoric about “death panels” – the claim, nonsense, fabricated out of nothing but fear and lies, that some plot is afoot to, literally, kill patients under the guise of end-of-life care. That is hogwash. It is purveyed by cynics; it employs deception; and it destroys hope. It is beyond cruelty to have subjected our elders, especially, to groundless fear in the pure service of political agendas.
The truth, of course, is that there are no “death panels” here, and there never have been. The truth is that, as our society has aged and as we have learned to care well for the chronically ill, many of us face years in the twilight our lives when our health fades and our need for help grows and changes. Luckily, palliative care – care that brings comfort, company, and spiritual and emotional support to people with advanced illness and their families – has grown at its best into a fine art and a better science. The principle is simple: that we can and should offer people the very best of care at all stages of their lives, including the twilight.
The truth is, furthermore, that patient-centered care demands that the ways in which a person is cared for ought always to be under his or her control. The patient is the boss; we are the servants. They, not others, should direct their own care, and the doctors, nurses, and hospitals should know and honor what the patient wants. . . It is one of the great and needless tragedies of this stormy time in health care that the “death panel” rhetoric has denied patients the care that they want, denied caregivers the information they need to give that care, and denied our nation access to a mature, open, informed, and balanced discussion of the challenge of advanced illness and the commitment to individual dignity. It is a travesty.
If you really want to talk about “death panels,” let’s think about what happens if we cut back programs of needed, life-saving care for Medicaid beneficiaries and other poor people in America. What happens in a nation willing to say a senior citizen of marginal income, “I am sorry you cannot afford your medicines, but you are on your own?” What happens if we choose to defund our nation’s investments in preventive medicine and community health, condemning a generation to avoidable risks and unseen toxins? Maybe a real death panel is a group of people who tell health care insurers that is it OK to take insurance away from people because they are sick or are at risk for becoming sick. Enough of “death panels”! How about all of us – all of us in America – becoming a life panel, unwilling to rest easy, in what is still the wealthiest nation on earth, while a single person within our borders lacks access to the health care they need as a basic human right? Now, that is a conversation worth having.
And, while we are at it, what about “rationing?” The distorted and demagogic use of that term is another travesty in our public debate. In some way, the whole idea of improvement – the whole, wonderful idea that brings us –thousands – together this very afternoon – is that rationing – denying care to anyone who needs it is not necessary. That is, it is not necessary if, and only if, we work tirelessly and always to improve the way we try to meet that need.
The true rationers are those who impede improvement, who stand in the way of change, and who thereby force choices that we can avoid through better care. It boggles my mind that the same people who cry “foul” about rationing an instant later argue to reduce health care benefits for the needy, to defund crucial programs of care and prevention, and to shift thousands of dollars of annual costs to people – elders, the poor, the disabled – who are least able to bear them.
When the 17 million American children who live in poverty cannot get the immunizations and blood tests they need, that is rationing. When disabled Americans lack the help to keep them out of institutions and in their homes and living independently, that is rationing. When tens of thousands of Medicaid beneficiaries are thrown out of coverage, and when millions of Seniors are threatened with the withdrawal of preventive care or cannot afford their medications, and when every single one of us lives under the sword of Damocles that, if we get sick, we lose health insurance, that is rationing. And it is beneath us as a great nation to allow that to happen.
And that brings me to the opportunity we now have and a duty. A moral duty: to rescue American health care the only way it can be rescued – by improving it. I have never seen, nor had I dared hope to see, an era in American health care when that is more possible than this very moment. . .We can do this, we who give care. And nobody else can. The buck has stopped. The federal framework is set by the Affordable Care Act and important prior laws, such as the HITECH Act, and, quite frankly, we can’t expect any bold statutory movement with a divided Congress within the next year or more. The buck has stopped; it has stopped with you.
Now comes the choice. To change, or not to change.