In Anne Scitovsky's 1984 review of end-of-life health care costs she too wondered why the issue was receiving increased attention just then. Perhaps, she thought, the impetus was that health care expenditures had recently risen to 10 percent of GDP. But it was more than that. Hospice coverage under Medicare was introduced just a year earlier, many papers looking at escalating end-of-life costs for cancer patients were being published, and professional and popular books and movies on death and dying were appearing almost monthly. The tone was clear: If only patients were told the truth, they would never choose treatments that were worse than the disease.
A decade later, Congress passed the Patient Self Determination Act with high hopes that requiring hospitals to ask patients if they've thought about their care preferences would cause undesired and unplanned intensive health care utilization to diminish. However, to the disappointment of many, paper compliance became the rule rather than the exception.
The current resurgence of discussions about end-of-life care is characterized by a broad-based interest in the end-of-life care as evidenced by "the Conversation Project" (also 'Death Café' movement) that columnist Ellen Goodman began with many associated state and community level adherents; state "right-to-die" legislative efforts; a demonstration mandated by the Affordable Care Act that allows hospices to provide palliative care to patients still receiving disease-specific treatment; and, of course, the National Academy of Medicine report, "Dying in America," published in 2014. While the recent focus on end-of-life care is partly rooted in concerns over costs, much of it reflects a desire to ensure that the care people receive is consistent with their preferences.
Each historical wave of interest in end-of-life care has attributed much of the high and undesired health care costs associated with that care to a culture that denies the inevitability of death. Perhaps this is why, in spite of the ebb and flow as well as the intensity of these discussions since the beginning of the hospice movement in the late 1970s, the medical arms race has continued apace with persistent growth in the number of intensive care unit (ICU) beds, increases in the numbers of dying patients using post-acute care, and increases in the proportions of the "oldest old" receiving open heart surgery or pnuemonectomy. At the same time, the proportion of Medicare beneficiary decedents receiving the Medicare hospice benefit has grown. This suggests a tendency for patients to demand and for providers to comply by offering more and more services of all sorts. Whether the supply of aggressive treatments arises in response to the public's demand for them or to health care reimbursement incentives that induce providers to offer such treatment continues to be hotly debated.
Regulatory and reimbursement system responses to underlying concerns about end-of-life care preferences, ranging from the introduction of the Medicare hospice benefit to the passage of the Patient Self Determination Act, have been easily absorbed into the bureaucratic health care delivery system. Despite good intentions, these regulations enable patients, families, and their multiple physicians to avoid having real conversations about the things that they don't want to imagine: having a terminal illness, failing the second line treatment, not having a standard treatment option available, or—more to the point—facing death. Despite the implementation of initiatives ranging from the Patient Self Determination Act to the recent coverage decision that pays physicians to discuss advance care planning, there doesn't seem to be much change in the likelihood that frail older patients enter ICUs.
The introduction of the Medicare hospice benefit, praised as a major advance in offering patients' choice (I was there from the beginning so have a unique perspective on its evolution), had the unintended consequence of divorcing end-of-life care from the rest of the medical care system. It became a separate silo. Patients referred to hospice tend not to be seen by their regular physicians, and the hospice becomes fiscally and clinically accountable for virtually all care the patient receives, reinforcing hospice's isolation from the rest of the health care system. This lack of accountability (and by implication, continuity) across the period of advanced disease management and end-of-life care creates impediments to smooth care coordination.
Dying patients discharged from the hospital often elect to receive the skilled nursing facility benefit in a nursing home rather than the hospice benefit. They do this to avoid having to pay privately for the room and board costs of being in a nursing home while also receiving the Medicare hospice benefit. Under Medicare, one can't receive the skilled nursing facility and hospice benefits at the same time, even though hospice may be more consistent with patients' end-of-life needs.
Since the Medicare hospice benefit is capitated with respect to the patients' terminal diagnosis, by electing hospice patients must make the terrible choice to forgo disease-directed treatment and embrace "comfort care." Concurrent hospice care and disease modifying treatment may actually improve outcomes at no increased health care costs, but evidence of this is limited to a small number of controlled studies in unique health care environments. Advocates hope that, on average, allowing people to have both treatment and palliative and hospice care at home would not increase costs. Whether this is wishful thinking probably depends upon the payment incentives and not just patients' wishes.
Here are the challenges: How do we restructure our health care financing and delivery system to offer patients choice without inducing either excess utilization that has virtually no chance of positively influencing outcomes or consigning them to end-of-life "specialists"? How do we avoid looking back in 2030 when the next wave of interest in end-of-life care bubbles up and wondering how and why our current fixes didn't address the fundamental problems? How can we care for people who opt out of high-intensity, low-yield care without putting them on the proverbial ice floe to drift alone toward death? What needs to happen to improve coordinated care and offer care that goes fully through the life cycle rather than diverting the dying to a different system?
Over the next several years as Medicare and private insurance plans grapple with this issue, policymakers will have to make choices ranging from requiring hospice to be included in Medicare Advantage benefit plans to including hospice services under all accountable care organizations. Indeed, creative health care systems could even begin to break down the walls of the silos that our idiosyncratic reimbursement system have created. Then we might see the day when referral to a palliative care specialist would not be seen as "giving up" on the patient but caring for the whole patient regardless of the immediacy of a limited prognosis.
In July of 2017, Health Affairs will be publishing a special issue supported by the Gordon and Betty Moore Foundation that will focus on end-of-life care and serious illness. In anticipation of that event, I'll be writing several more Blog entries devoted to reflections on the policy challenges that underlie our discussions of such care. Ranging from the difficulty of measuring end-of-life care quality to the difficulty of ensuring continuity of care just when the need for specialized advice and management is at its highest, these blogs will call attention to the contradictory system of incentives and requirements that makes it so difficult for our health care system to meet patients' needs in the last stages of life. As one who has been examining these issues for nearly 40 years, I'm delighted that Health Affairs has chosen to highlight this theme.
from Health Affairs BlogHealth Affairs Blog http://ift.tt/2h3ketZ
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