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Why Not the Best? It's up to each of us.

Posted by Dr. Lachlan Forrow January 28, 2013 06:00 AM
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.

It's NOT about the money

Posted by Dr. Lachlan Forrow January 16, 2013 10:29 AM

A recent op-ed in the NY Times by Dr. Ezekiel Emanuel, titled "Better if not Cheaper Care", reminded me how tragically misguided it is that so many discussions of care near the end of life focus on costs.  As Zeke so clearly stresses, and as we underscored in the Report of the Massachusetts Expert Panel on End-of-Life Care, the central issue -- I would say the central moral issue -- isn't cost, it is patient-centered quality.  It is unconscionable that our health doesn't take the quality of care near the end of life as seriously as it should -- with the single most important "quality measure" being whether the care provided was what the patient really would have wanted.  

Money is, of course, an important dimension of everything in health care, and a legitimate concern.  But the most fundamental and urgent "money issue" -- in all of health care, not just at the end of life -- has nothing to do with so-called "rationing" of expensive but beneficial medical interventions.  The urgent money problem is that we are so often spending so much money on things of little or no value to the patient, and sometimes on things that are foreseeably harmful.  In the last phase of life, this sometimes includes vast sums on expensive, often highly-burdensome, and often ultimately ineffective interventions.  The worst of it is when patients and their families would not even want these interventions, if they knew about and had better (and much earlier) access to other options, ones focused on palliative care and hospice, and maximizing time at home.

A disturbing article documenting this problem appeared in the NY Times a few years ago, with a front-page quote from the CEO of UCLA medical center, who said --  apparently with pride -- that 'If you come into this hospital, we're not going to let you die."  So I checked, since I suspected that even there human beings are mortal.  In fact, over 1,000 patients die every year in his hospital.

Part of the problem is that doctors and hospitals get paid far, far more for intensive hospital-based care than they would if they referred a patient to hospice. So in today's fee-for-service system what often ends up happening?  

As I wrote in a letter that the NY Times published:

Dr. David T. Feinberg, chief executive of the U.C.L.A. Medical Center, promises that if you go to his hospital, "we're not going to let you die."  Why would a well-intentioned doctor say this to potential patients, violating the most fundamental ethical standards of informed consent?  

Guaranteeing hospitals and doctors almost limitless Medicare dollars for intensive-care interventions, however burdensome and unlikely to succeed, may be a quintessentially American affirmation of the sanctity of life -- even if the same resources could be improving the education of our children.

But today's Medicare rewards dishonesty about death.  Since the vast majority of Americans would prefer to die peacefully at home, this deprives patients and families of the possibility of informed choice about their last sacred moments together.  This is un-American and worse than expensive -- it is morally unconscionable.

The 2009 article about UCLA included a patient care story that I wish I could say wouldn't happen here in Massachusetts, but I know it does:

Dr. Bruce Ferrell, who helps lead the palliative care program [at UCLA], recalls a patient two years ago who got a liver transplant but developed serious complications afterward and remained in the hospital for a year.  "He had never, ever been told that he would have to live with a ventilator and dialysis," Dr. Ferrell said.  "He was never told that this is as good as it's going to get."

Dr. Ferrell talked with the patient about whether he might want to leave the intensive-care unit to go home and receive hospice care.  But when the surgeon overseeing the case found out, he was furious.

"We do not use the h-word" -- hospice -- "on my patients," the surgeon told Dr. Ferrell.  "Don't ever come back."

The patient chose to leave.

Massachusetts has led the nation in health care reform, with much work still to do.  Currently a major focus is "cost control".  But money must never be the first concern.  First, middle, and last, we need to ensure that every penny is used only for things that are truly of value to the patient. 

In the next phase of Massachusetts health care reform, we can set a model for the nation of how to think about money in end-of-life care.  A starting point might be the principle that the Massachusetts Expert Panel said should guide payment reform for the care of all patients with serious advancing illnesses:

Payment for medical services requires adequate documentation that they are based on the well-informed wishes of patients (or appropriate surrogates), including understanding of life-prolonging and palliative care or hospice alternatives.


Why would you pay for medical services unless you knew that they were what the patient wanted?



About the author

Lachlan 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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