Better care for the dying.

What do you think of the quality of care for the dying that's being given in nursing homes today?

Lynn: Some nursing homes have, for one reason or another-an inspired leader, a long tradition, religious roots, or whatever-extraordinarily good care for people as they die. There's nowhere you'd rather be. And then there are places where, as soon as a person appears to have the least bit of trouble, they're sent to a hospital.

Most nursing homes have no particular expertise in taking care of patients in their death, but you can find every situation in between. There is also great variance in the use of pain killers in nursing homes. Some use opiary drugs only exceedingly rarely, even when it would be appropriate to do so.

Don't providers sometimes transfer dying people to hospitals so that their homes don't get accused of causing the death,' even if it was inevitable?

Lynn: I think [such explanations] are more coherent than what people are actually feeling. They are sort of overwhelmed.

It's also the case that under the new [prospective payment] provisions, ordinarily nursing homes will take a financial loss in taking care of persons with short-term complications. But once a person leaves the nursing home for a hospital, Medicare pays for them-and often will pay for care when they come back to skilled for a short time. [Medicare's new] RUG system does not especially value the additional services needed as people come close to dying.

That's how well we manage not to notice the problems of the dying. It's amazing how we put all these people in nursing homes who are almost certain to die there or after a short transfer to a hospital, and yet we never think about a policy with regard to how their dying should happen.

Do the frontline caregivers in nursing homes receive enough training in end-of-life care?

Lynn: There have been some efforts to improve it, and there are some resources available. But it is not widely valued.

I think there have been some other efforts by some large chains. I think it's nascent and growing, but it's not reliable.

How can caregivers help family members after a death?

Lynn: Families need a support nemesis. They need help sorting out the practical details-the funeral home and that sort of thing.

There's fairly good data that most people handle bereavement better if they've had a chance to see the person in repose in death. So we need a way for the family to be brought into a nursing home to see the body in a relatively comfortable setting. It shouldn't be in a garage or a storage vault. And yet you also don't want the person staying in a floor room for long. I've seen some nursing homes make marvelous adaptations, using their chapel for a piece of time or having another room that's used for other things for other times. They've realized how awful it is to send a family down to a dank basement room that has no decorations, or to say: "You can't see the body until the funeral home." Often the accommodations are fairly easy to make.

In our book, we recommend you consider autopsy. Almost nobody even talks about autopsy anymore. But if we don't offer autopsy, families that are uncomfortable with what happened toward the end will never have those feelings resolved.

Could you comment on the spiritual side of care for the dying?

Lynn: Well obviously the close of a life is an important spiritual marker. Most of health care doesn't pay attention to that very much. One of the few places where we do, now, is in obstetrics care, where a family is encouraged to bond with the baby and to have some time to consider what it means to now be a family with a child. We need some of those same kinds of things at the end of life.

Sometimes it's a particular ritual-people want to die facing Mecca, or they want to have a chance to bathe the body, or something of the sort. Sometimes it's a more customized responsiveness to what people feel they need.

Joanne Lynn, MD, is the founder of the Washington, D. C-based Center to Improve Care of the Dying, a group focused on research, advocacy, and education related to end-of-life care. A former nursing home medical director, she is the co-author of A Handbook for Mortals: Guidance for People Facing Serious illness (Oxford University Press, 1999). She is also a co-author of Sourcebook on Dying for Health Care Managers, due out this fall.

Very good nursing homes also have support services for [grieving] staff. in stable nursing homes, staff end up feeling like residents' family.