Congress first created the Medicare hospice benefit in 1982. During the first full year after the law went into effect, only 200 Medicare patients enrolled in hospice, accounting for less than one-half percent of the deaths that year. By 1986, seven percent of Medicare patients who died were enrolled in hospice at the time of death; in 1998, it was 19 percent and in 2013 it reached 47 percent. A new report from the National Hospice and Palliative Care Organization shows this percentage has remained fairly stable: in 2017, it was 48 percent.
The length of time that Medicare patients are actually enrolled in hospice remains woefully short, particularly for some diagnoses: while the average length of stay is 71 days, reflected a few very long stay patients, the median length of stay is only 24 days. In fact, fully 28 percent of individuals got between one and seven days of care, far less than most clinicians regard as optimal. Patients enrolled in hospice because of a cancer diagnosis tended to have the shortest lengths of stay in the program. Nonetheless, the historical shift towards hospice as a reputable and popular approach to end of life care demonstrates that we can introduce a new Medicare benefit package and expect it to catch on. The same happened with Medicare Part D, the drug benefit (though this was an add-on rather than a substitution), with enrollment going from 52 percent in 2006 to 71 percent in 2016. Medicare Part C, the partially privatized HMO-style benefit now known as Medicare Advantage, has also taken off: in 2003, only 13 percent of Medicare beneficiaries opted for such a plan but by 2017, 33 percent did.
The time is ripe for adding a new alternative benefit package to Medicare’s offering: whether we call it Medicaring, the name preferred by Joanne Lynn, Director of the Elder Care and Advanced Illness division of the Altarum Institute,
or Intermediate Care, my term, or something else, it would provide enhanced home care services for frail elders and others with advanced illness in exchange for limitations on access to intensive, expensive, burdensome, and seldom beneficial treatments such as bone marrow transplantation or open-heart surgery.
Americans tend to dislike or at least be very skeptical about any kind of limits to care. But often the problem is that we focus on what people cannot have rather than emphasizing what they can have—and what they often need and want. In fact, I think one reason that patients only enroll in hospice very late in the course of their illness is that hospice is presented as the withdrawal of care, the discontinuation of care, rather than as the substitution of one approach to care for another. Many patients may be unwilling to forgo treatment altogether, which is how hospice is frequently presented, but are eager to choose a less invasive, less burdensome form of care: infusions of very toxic chemotherapy drugs in the physician’s office every week or two may be rejected if there is an oral medication they can take at home that has far fewer side effects. But if the only alternative is certain death, chemotherapy looks far more attractive.
Important and interesting work has been done on developing and implementing programs to care for people with advanced illness or frailty, such as the Coalition to Transform Advanced Illness Care's 2017 report. The way forward is now to create a Medicare benefit to accommodate this approach.