Almost everyone has known or will know the helplessness of caring for - or overseeing the care of - a sick loved one. That such situations are often mired in chaos raises the anxiety level for both the patient and others trying to do the right thing.
Should the dying be rushed to a hospital? If they're already there, should they undergo invasive procedures that may prolong life but may not - while causing new pain? If they want to stay at home, is it ever our duty to contradict them? And when the emergency medical technicians rush into the bedroom to pound on the failing person's chest, may we stop them?
There is no easy or healthy escape from stress here. But palliative care can help all involved manage the situation with more competence and more calm.
In palliative care, teams of doctors, nurses, social workers and clergy offer guidance on course of action. They listen, as well as talk. Thus, decisions made are informed not only by medicine but by religion, culture, psychology and even economics.
This can take place in a hospital or another institutional setting, but palliative care is moving more and more to the home. The problem may simply be that the patient can't manage the piles of pills. Or no one is doing basic household chores.
Bringing order medically, socially and emotionally to the home may prevent return trips to hospitals that are very expensive but also expose patients to new risks. Medicare and Medicaid are now encouraging more home care, and forward-thinking hospitals are themselves investing in it.
Which brings us to a barrier for wider acceptance of this and other logical approaches to caring for the very ill. Many Americans are so conditioned to associate money spent on big-gun medicine with quality of care that proposals to do less are immediately suspect.
A hospital executive told me of a case where a family insisted on administering a grossly expensive drug with awful side effects to an elder with no hope of lasting more than a few weeks. Medicare was required to pay for it (leading us to wonder how adamant the family members would have been had the bill gone to them).
Some of it, we agreed, may have been the mentality that the more spent the better the care and the greater the love. Or, more primitively, family members may have seen the Medicare-provided drug as something they should get because it was "free."
Palliative care is not the same as hospice services for the dying. It can include a cure. It can actually extend life by helping patients avoid medical treatments that would make them feel worse or expose them to unnecessary risks. Many people can live a long time with a serious medical condition, if it is well-managed.
Basically, the approach helps patients and their loved ones understand the lay of the land and avoid careening from one crisis to another. If sick people are unable to make sound medical judgments, as is often the case with elderly patients, palliative care aids others in deciding for them.