HealthLawProf Blog

Editor: Katharine Van Tassel
Concordia University School of Law

Wednesday, October 31, 2012

Dying in the US--still problematic

Today is Halloween, all Hallows Eve, the eve of All Saints Day.  And last night, my father-in-law died peacefully at the age of 96.  So I thought, amidst all the turmoil of death panels, that it might be useful to call attention to the continuing evidence that hospice is underutilized in the US, that changes in the hospice benefit found in the Affordable Care Act may not help, and that the controversy over physician-assisted suicide continues. 

One of the persistent problems with hospice in the US has been its utilization too little and too late.  Joan Teno among others has studied the use of hospice extensively. According to one of her most recent papers, "It Is “Too Late” or Is It? Bereaved Family Member Perceptions of Hospice Referral When Their Family Member Was on Hospice for Seven Days or Less" (Teno et al.2012),, of the over 1.4 million patients receiving hospice care each year in the US, 34.4% are enrolled for seven days or less and over half for less than 30 days.  In many of these cases, the study found, earlier referral would not have been possible because either the patient refused hospice or the patient's downhill course was quite rapid. But in other cases, the late referral was attributed to poor provider-patient communication or to a failure in prognosis, both long-standing problems in US health care.  The study concludes that many patients do not receive the full benefits of hospice services and that there is also need for better end of life services for those patients who receive hospice for only a very short period.

So what might ACA do?  The flip side of the criticism that hospice referrals come too late is that they come too early or for patients who do not qualify because of financial incentives created by the Medicare hospice benefit, as the Medicare Payment Advisory Commission (MedPAC) argued in a report in 2009. Section 3132 of ACA, in response, requires a face-to-face encounter with the patient by either a physician or a nurse practitioner prior to hospice re-certification after 180 days and each subsequent recertification. After delaying implementation of this requirement, CMS announced that it would expect full compliance after the second quarter of 2011,  A particularly difficult aspect of this requirement is its application to patients who have received earlier hospice services, as admitting hospices must consider the patient's earlier receipt of hospice services and may have difficulty in getting the required information. The Center for Medicare Advocacy raises the concern that this may limit hospice access, albeit possibly improving the quality of care for those who do receive services, .

In Massachusetts, voters will address a ballot measure allowing physicians to prescribe lethal medication to certain terminally ill patients.  If the Death with Dignity measure (Question 2,,_Question_2_(2012)) passes, Massachusetts will join Oregon and Washington in permitting the practice.  Current polling suggests that the measure is ahead but that support for it is slipping.  In a recent New York Times opinion piece, Ezekiel Emanuel argued that the debate is confused and that while it might benefit those with money and the ability to control their lives, it might also put those who are more vulnerable at risk,  Whether risks to the vulnerable are merely hypothetical or actual remains controversial, however; see my colleague Margaret Battin's analysis of the evidence from the Netherlands and Oregon, arguing that the risks are largely hypothetical,; the most recent report from the Netherlands also indicates that use of the practice remains stable with a decrease in the frequency in which life was ended without an explicit patient request, doi:10.1016/S0140-6736(12)61484-6.

To me, it is a shame that careful consideration of how best to support patients and their families in dying as they would wish, including with physician aid, has been caught up in concerns about costs, in political cross-fire, and in ideology.  Joan Teno's call for integrated support systems, whether within or outside of hospice, is an important one.  Fortunately, even though my father-in-law declined too precipitously for hospice to be a possibility for him, we received a great deal of support from the skilled nursing facility where he was a patient.  But the evidence remains compelling that in the US this is too often not the experience of patients and their families at the end of life.



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