Plea for more effective care at the end of life
There is no shortage of jaw-dropping numbers associated with health care in the United States, but some numbers leave the mandible resting more squarely on the clavicle than others, as the latest edition of the Dartmouth Atlas Project makes abundantly clear. The executive summary from the 2008 edition of the Dartmouth report states that depending on where one lives, the number of visits to a doctor's office for the terminally ill may run as high as 60 in the last six months of life, compared to only 15 visits over the same period in other areas of the United States.
This variance, which correlates with costs, exhibited no improvement in care. This kind of disparity was the impetus behind the recent discussion of the cost of end-of-life care, sponsored by the Hastings Center (Garrison, NY). While the perspectives offered were from an advocacy group and two employees of the federal government, the consensus was clearly that end-of-life care, as currently delivered in the United States, makes little or no sense.
CMS officer speaks out
Joanne Lynn, MD, a medical officer at the Centers for Medicare & Medicaid Services, said she appeared in an unofficial capacity at the gathering, but nonetheless said her mission was "to convince everyone here to do a little more in this next week" on the issue.
"Sudden deaths are very uncommon now," Lynn said, compared to the year 1900, when the average age at death was 46 in the United States. Thanks to the fact that death came much more quickly 108 years ago than it does now, "there was very little disability either," she said.
Now the average age at death is 78, and "the usual course of the last period of life will be living with a serious illness," Lynn said. In contrast, she said, "we built a health care system in the '50s and '60s" when the fear of heart attacks was the principal driver of health care investment. Modern health care doesn't offer continuity of care] or electronic records, Lynn said.
"You can't keep your hernia, even if you want it," Lynn said of Medicare beneficiaries, but "we never went back and redesigned the care system for those whom it serves" in reference to the increasing millions whose care takes place at home. And because highly expensive chronic care often takes place at home, the "things we live with are the things that are expensive."
"The average transfer from hospital to home appears to include a medication error," Lynn said. She referred to some of the high-cost procedures that now seem the norm in medical care, saying that the health care dollar is now "paying for sports cars when what we need are Hondas."
Lynn also addressed the idea of death as an irrational outcome. "We don't want to acknowledge that there's death in store" for us, said Lynn, adding that each of us can prevent "everything you can, and you're still going to get bad diseases and die."
She also pointed out that the older we get, the more expensive our care becomes. Cancer kills on average at age 65, heart disease in the mid-70s, but infirmity and dementia much later and at much greater cost because of the labor-intensive nature of the care, which often is provided by family members at a cost that is hidden to society. The same can be said of care in clinical and institutional settings, which is "what makes it so expensive, that you have to have ongoing care," she said.
Lynn cast the undertaking in terms of legendary exploits. "We are in many ways like Lewis and Clark, setting out toward the West," said Lynn, adding that the pursuit of the Northwest Passage "took two or three times as long and was ten times more expensive than anyone anticipated," but urged that such an outlook should inform the search for a solution to end-of-life care.
Lynn said the incentives for providers are upside down, stating "right now, doing it right guarantees you will not make a good living." She made the case that "it has to be possible to make a living doing it right and probably [should be] difficult to make a living doing it wrong."
Lynn said the patients often have profound fears of the last days of their lives. "I've had elderly patients tell me, 'I don't want to die like that girl in New Jersey,'" in reference to Karen Ann Quinlan, the young woman who spent 10 years in a deep coma before finally passing away in 1985. Her parents successfully sued to have her life support withdrawn after one year, but she lived in a persistent vegetative state for another nine.
The question, however, is how can change happen? "We have to make it safe for politicians to lead" on the issue, Lynn said, and public and private payers should "pay well for only continuity of care" in a way that will make physicians more accessible. "You need to be able to call someone Friday at 9 p.m." and get care at home from a provider, she said. The care should go to the home when the patient no longer is realistically able to get to the doctor's office instead of a "doc-in-a-box" model of care, Lynn said.
"Where is the political force to make it plausible to make those reforms?" she asked. Lynn pegged family caregivers as the most plausible source of such political momentum, but she said that members of this segment of society "do not see themselves as a political force."
Nonetheless, she asserted that such a movement needs a grass-roots political origin because there are relatively few extant businesses that will be able to make a living on this kind of model of end-of-life care. "In 15 to 20 years, we will either learn to abandon old people, or we will learn to let them kill themselves" if a drastic change is not undertaken, Lynn said.
There is no shortage of jaw-dropping numbers associated with health care in the United States, but some numbers leave the mandible resting more squarely on the clavicle than others, as the latest edition of the Dartmouth Atlas Project makes abundantly clear.You have reached your article limit for the month. Subscribe now to access this article plus other member-only content.
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