01:00 AM EST on Saturday, March 13, 2004

Over the past half-dozen years, Americans have engaged in a nationwide push to improve care of the dying. But a new, exhaustive study built on interviews with family members suggests that dismal failure continues. According to the study, large numbers of the dying still do not receive adequate pain medication, emotional support, or simple respect in the days before they expire.

The study, the largest of its kind, and the first to broadly examine family members' perspectives, looked at deaths in the year 2000. It involved interviews in 22 states with relatives of more than 1,500 people who died of non-traumatic causes. Reported in the Jan. 7 Journal of the American Medical Association, it was led by Joan M. Teno, of Brown University, who is also an associate medical director of Home & Hospice Care of Rhode Island.

Overall, family members reported much greater satisfaction with hospice care than with loved ones' treatment in hospitals and nursing homes. Yet 70 percent of the deaths surveyed occurred in institutions. Of those who died in institutions, more than half did not get sufficient emotional support, relatives said.

Among all the dying, one in four did not receive enough pain medication. And the problem was reported to be worse in nursing homes. While hospice care generally received a much more favorable response than nursing homes or hospitals, it too came in for criticism. For instance, in more than a quarter of hospice cases, the dying did not get enough help with shortness of breath, relatives said.

That family members were so eager to tell their stories, even at the cost of reliving considerable anguish, underscores the urgency of this problem. A society as rich as ours must not consign so many of its dying to pain, loneliness and fear.

Several solutions present themselves; they start with expanding and improving hospice care. One failure continues to be the shortfalls in nursing-home funding, which lead to high staff turnover, and hence spotty care. Some nursing homes now contract with hospice agencies to provide end-of-life care. But they receive less in Medicare reimbursements when they do, a disincentive that must end.

Most of the more obvious remedies can only go so far. As long as this country hangs on to a health-care system that does not provide for everyone, end-of-life care will be delivered on the same incoherent basis as regular care. A system that looks at the most rational way to care for health from cradle to grave stands a much better chance of fostering so-called good deaths than the current fragmented one.