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As Kay Lazar recently wrote in "End-of-Life Care Rarely Discussed", her cover story for the "G" section of the Globe, nearly two years after the Massachusetts Expert Panel on End-of-Life Care set out a roadmap through which the Commonwealth could become a national leader in improving the quality of care near the end of life, few of the recommended steps have even been pursued.
It is not just within families that these issues are often avoided. But when they are avoided, people continue to suffer in ways we largely know how to prevent.
In the weeks leading up to the hot-button "physician-assisted suicide" ballot initiative in November ("Question Two"), almost everyone in Massachusetts was talking about the topic. And almost everyone, on both sides, seemed to agree that there are serious shortcomings in the quality of care near the end of life. But almost immediately afterward, the topic faded quickly from public view.
But only from public view.
Every day in Massachusestts, in families, in hospitals, and in private homes, the urgency of the need for improvements continues to be felt vividly.
If yesterday was an average day, nearly 150 residents of the Commonwealth died. We know that for many of them their last hours, days, or weeks were not the way they would have wanted. They may not have been home, even though they had wanted to be, because the health care system did not make that a priority, or maybe never even asked the patient (or family) whether or not it was. Their pain, or nausea, or anxiety may not have been well controlled, in part because we have not developed adequate standards for the training and availability of clinical staff in symptom management -- much less enforce those standards.
So I wish that the state had already done much more in the nearly two years since the Massachusetts Expert Panel Report was released.
But the ultimate responsibility for why we, the people of the Commonwealth, do not yet have what we need from our health care system, lies with each of us. And since each of us, and everyone we love, is one day affected directly and powerfully by this issue, we each have a direct stake. As Dr. Ira Byock has said, we need a social movement that "takes back the end of life" the way mothers -- and sometimes fathers -- succeeded in insisting on major changes in childbirth.
The nearly 150 people who died in Massachusetts yesterday are today, blessedly, at peace. But many of their loved ones are not. If, on average, each person who died had just 3-4 people intensely close to them, then over 500 people woke up this morning in Massachusetts having lost a deeply-cherished loved one. And tomorrow over 500 more will do the same. And the next day. Every day the number of people who understand from firsthand experience what is needed grows.
For every person whose loved one was cared for just the way s/he wanted, please tell everyone you know how that happened, and urge them to insist on the same for their own loved ones. For every person whose loved one was not cared for just the way s/he would have wanted, please do not be quiet about it. To make it simple for you, you can even start by commenting on this blog.
We can have the best here in Massachusetts. But only if each of us insists on it.
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About the authorLachlan Forrow, MD is Director of Ethics Programs and Director of Palliative Care Programs at Boston's Beth Israel Deaconess Medical Center and Associate Professor of Medicine at Harvard Medical School. More »
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