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."
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.
The patient chose to leave.
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?