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Behind the political issues and the deep emotions is the reality that the United States must overhaul end-of-life care
On a radio talk show in July 2009, New York Lieutenant Governor Betsy McCaughey asserted that the Affordable Care Act (ACA) would mandate that Medicare beneficiaries must have “a required counseling session that will tell them how to end their life sooner.”
The following month, Alaska Governor Sarah Palin warned that ACA would lead to rationing of healthcare and a federal “death panel” that would determine patients’ right to healthcare based on their “level of productivity in society.” The “death panels” falsehood was named the Lie of the Year for 2009 by PolitiFact.com-and it reverberates still.
Last December, for example, the journal Otolaryngology – Head and Neck Surgery reported that, of 647 surgeons responding to a survey about ACA, 27% believe the law includes a government panel that “makes end-of-life care decisions for Medicare.”
As if there weren’t enough emotionalism pumped into policy debates about end-of-life care, high-profile cases have added to the ferment: Specifically, Terri Schiavo, the 41-year-old woman with brain damage who became the centerpiece of national discussion, and more recently, Marlise Muñoz, who was 33 years old, 14 weeks pregnant and declared brain-dead after a pulmonary embolism. Each case involved costly life-sustaining medical treatments and families that wanted to honor their loved ones’ wishes.
Cases like these do pose difficult legal and ethical questions, but they are not the typical case, says Lee Goldberg, vice president of health policy at the National Academy of Social Insurance.
“Tackling those doesn’t mean we’ve addressed the issues that face most people,” he says.
Another difficulty with the notion of “end-of-life care,” from both policy and clinical standpoints, is that in most cases, a patient simply receives necessary care, and only in retrospect does it become clear that the care was delivered at end of life. Classifying care can be tricky.
“Most of us die within a few weeks of being stable in poor health,” says Joanne Lynn, MD, a geriatrician and director of the Altarum Institute’s Center for Elder Care and Advanced Illness.
The cost issue is not so much a function of end-of-life care, as it is chronic diseases, says Diane E. Meier, MD, professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai and director of the Center to Advance Palliative Care.
“The term ‘end-of-life care’ has a way of deforming debate,” she says.
Experts agree that the most costly 10% of patients account for two-thirds of medical costs, and 5% account for 50% of medical costs. Of the most expensive 5% of patients, Dr. Meier says, 40% have a short-term, high-cost illness and will return to their baseline health status after treatment, such as a bone marrow transplant or heart surgery. Only 11% in the high-cost group are in the last year of life.
About half of the high-cost group are “persistently high cost” patients, she says, typically with a functional impairment, often cognitively impaired and often with multiple chronic conditions, such as diabetes or arthritis. They are often, but not always, within five to 10 years of death. This category also includes children with genetic disorders who can survive into adulthood, albeit at very high financial costs.
“Of course we spend money on the sickest people,” many of whom are elderly, Dr. Meier says, but that doesn’t imply that the money is wasted. “Policy-makers haven’t started thinking rationally about this.”
And end-of-life policies are particularly applicable for women. Women live about five years longer than men-although the difference is narrowing-and women average about seven years of widowhood, according to Dr. Lynn.
“The man, on average, gets built-in caregiver and income from both people’s retirement pensions,” says Dr. Lynn. “The woman has no built-in caregiver and a greatly diminished income. So women get the tough deal: caregiving, then poverty. Thus, last I saw such figures, about half of women end up relying on Medicaid, and the rate is much, much less for men. Women do also have more years of disability, largely because we have a higher rate of arthritis, and simply live longer.”
As for a hard number to quantify the cost of end-of-life care, “It’s large, but we don’t know what it is,” says J.D. Kleinke, healthcare economist and MHE editorial advisor. He adds that estimates of care costs are “all over the map.” For example, a February 2010 study published in Health Services Research indicates that the share of Medicare payments allocated to beneficiaries in the last year of life was 25.1% in 2006.
“We’re not going to address end-of-life care by asking, ‘How can we cut costs?’” Dr. Goldberg says.
Similarly, Ken Brummel-Smith, MD, a professor of geriatrics at Florida State University College of Medicine, believes that the cost curve can’t be bent downward without reforming the fee-for-service model, in fact, “without changing the entire system of reimbursement.”
Markets that tend to handle end-of-life care best are likelier to have capitation, he says.
Dr. Brummel-Smith also points to a study, by University of Michigan researchers and published in JAMA on Oct. 5, 2011, which found that when advance care directives that specify limits in care are used in high-cost areas of the United States, they save money, but they don’t save money in low-cost areas. Advance directives were also associated with more use of hospice services higher spending areas. Improving quality of care will lower costs, he says, but only over a period of decades.
“People who are dying are getting poor-quality care right now,” he says.
One problem emphasized by many elder-care experts is that the assumptions and conditions around which Medicare was designed nearly 50 years ago are hugely out of date and are getting more so all the time.
When Medicare was passed, the average life span was 68 years and the difference between life span and health span was much smaller than it is now. What were once acute causes of death have in many cases become chronic illnesses, Dr. Lynn says, leaving the nation with a large and growing population of people who are not only older, but medically frail and facing a long, slow, expensive decline.
“No one in past times died like this, because no one could stay on the tightrope that long,” she says.
More than 80% of Americans now live to age 65 or older. The average 65-year-old faces an eventual three years of basic self-care disability, and half of all 85-year-olds will have dementia, she says.
An October 15, 2011 study from The Lancet shows that of the 1.8 million Medicare enrollees who died in 2008, 31.9% had had a surgical procedure in their last year of life, 18.3% had one in their last month of life, and 8% had one in their last week of life. But, the rate of surgeries varies greatly by age and geographic region, which the researchers interpret as an indicator that providers use discretion in decisions to intervene surgically at the end of life.
And as the baby boomers age, the 21st century will see tens of millions of people in advanced old age in the United States. About 10,000 baby boomers turn 65 every day, and by 2030 about one-fifth of the U.S. population will be 65 and over.
“Those are challenges we haven’t faced before,” says Anne Montgomery, senior policy analyst with the Center for Elder Care and Advanced Illness.
In Medicare, the hospice benefit requires that a physician certify that the enrollee is terminally ill and expected to have six months or less to live. What’s more, patients are required to forgo curative care in order to receive access to palliative care services offered by hospices. That requirement creates obstacles to palliative care and can increase emergency room visits, Dr. Meier says.
“People should have access to palliative care based on need, not on prognosis,” she says.
But Medicare is beginning to examine innovations in payment for providers and service for patients.
On March 18, the Centers for Medicare and Medicaid Services (CMS) launched its Medicare Care Choices Model, which aims to develop payment systems that allow greater beneficiary access to “comfort and rehabilitative care in Medicare and Medicaid.” The program will test improvements to certain Medicare beneficiaries’ quality of life while they receive palliative services from certain hospice providers and curative services from their other care providers.
Advocates believe patients who have access to hospice alongside curative services have better experiences and their families demonstrate higher satisfaction with their loved one’s care. In any case, there’s often no distinction between treatments that prolong life and those that increase quality of life, according to Dr. Meier.
Despite the political toxicity around the issue, some lawmakers are sincerely working on improving end-of-life care. Wider use of the Physician Orders for Life-Sustaining Treatment (POLST) program could help the situation, says Dr. Brummel-Smith. Right now, POLST is a state-by-state issue, but he would prefer a federal form and registry, with 24/7 access.
“We’re a long ways from that, but it’s a goal worth pursuing,” he says.
Dr. Montgomery would like to see interstate recognition of POLST forms and inclusion of POLST in EHR, as well as POLST becoming connected to Medicare and Medicaid.
“It would be quite a step forward if that could happen,” she says.
POLST documents are intended for use for patients with serious illness or frailty, whereas advance directives are intended to make medical wishes known to loved ones. Patient wishes may be documented in a POLST form, which translates the shared decisions into actionable medical orders.
In August 2013, Sen. Mark R. Warner (D-Va.) and Sen. Johnny Isakson (R-Ga.) introduced The Care Planning Act (S. 1439), which is “designed to give people with serious illness the freedom to make more informed choices about their care, and the power to have those choices honored … It offers a patient centered approach to preplanning for care,” according to Warner’s office.
Dr. Montgomery believes the bill is a good sign that lawmakers are addressing preplanning issues.
S. 1439 would amend Medicare and Medicaid to reimburse physicians for conversations about end-of-life care, through a new benefit called Planning Services, and would direct the Department of Health and Human Services to develop metrics for the match between a patient’s values and the treatment he or she receives.
Among numerous other initiatives, the bill would also direct the Center for Medicare and Medicaid Innovation to conduct an Advanced Illness Coordination Services demonstration that would “deliver wrap-around, home-based services to beneficiaries who need assistance with two or more progressive disease–related activities of daily living.”
Earlier, in March 2013, Rep. Earl Blumenauer (D-Ore.) had introduced H.R. 1173, the “Personalize Your Care Act of 2013.” Quite a bit narrower in scope, it “would provide Medicare and Medicaid coverage for voluntary consultations between patients and their doctors about advance care planning. It would also ensure that an individual’s electronic health record is able to display his or her current advance directive and/or [POLST], so that his or her wishes are easily accessible and respected,” according to Blumenauer’s office.
Although the bill has not moved from the House Subcommittee on Health since it was introduced, a Blumenauer staffer said that as of early April, the bill had 56 co-sponsors, mostly Democrats, but also a handful of Republicans.
Although all of these measures, and others, have some potential to improve how end-of-life care is handled in this country, they likely won’t be nearly enough, given the enormous financial and demographic factors in play.
“The healthcare system that exists today will not be the one that exists in 2020 or 2030,” says Dr. Montgomery. “It won’t be a matter of making tweaks here and there.”
Dr. Lynn goes further. To really change things, she says, “It’s going to take a revolution in the public eye.”