Health-care week at the Supreme Court has raised a nightmarish possibility: We could be back at square one, having screaming matches about the best health care in the world that isn’t.
But it would be worth the agony if we could revisit the phase in the debate that stuck out as the most irrational — the point at which we lost focus on issues surrounding end-of-life care. And perhaps the second time around, “death panels” will not induce mass hysteria.
In the news last week, while broccoli was taking a star turn at the court, there was a report about a husband and wife found dead in their home somewhere on the East Coast. The police considered the incident a murder-suicide. The husband shot the wife. Then he shot himself in the head. Both were in their 80s. The wife had a diagnosis of Alzheimer’s. The man had been her caregiver. Family members expressed their shock at the tragic turn. They recalled a loving couple and how attentively the man had taken care of his wife of many decades.
There are several such stories every year, each case poignant. Yet the broad strokes trace a familiar scenario: An ailing spouse; an aged caregiver, his or her own health (or perhaps finances) failing; overwhelmed by the suffering and the burden of care; distraught about what might happen if he or she were to die first; sees no other option but to take the extreme measure while he or she is able.
There is some comfort in the fact that this extreme doesn’t happen more often because even if they think about it, not many can or will summon the nerve to carry out such a desperate act. All the same, there are a few facts to contend with. Demographic trends show Americans in the 80s are the fastest-growing segment of the population. Much as we learn that age in itself is not a disease, there’s no denying the body does wear out, and certain illnesses (dementia, for instance) and chronic conditions (arthritis) emerge with advancing age. Medicare, which covers 65-year-olds and above, is sagging with rising costs as it is.
The realities would suggest that with advancing age, a great many elderly Americans worry how they would cope with whatever physical and mental limitations might haunt their remaining years. Health-care experts have said for years this is a worry that can be reduced to a large degree with honest talk and informed decisions — as a society and especially as individuals — about end-of-life issues. Honest discussion was side-tracked during the last go-round by disgraceful scare-mongering. The need can grow only more acute as the elderly population rises along with spending on chronic illnesses. The hope I had three years ago was that a new health-care law would include a provision that would encourage physicians to engage elderly patients and their families in the delicate conversations about dying, the physicians reimbursed for the service.
The hope was that the medical profession would help the elderly — everyone, in time — walk a difficult terrain: To make peace with the fact that longevity doesn’t approach eternity; to accept that there are limits to the wizardry of medical technology, that often the best care is that which eases a patient as gracefully as is possible into death; to help patients and families recognize and plan for when that time rolls around.
But “honest” is a tricky word when the matter at hand is a dying.
“Doctors don’t tell the truth,” I have heard a man respond bitterly, his relative dying slowly and painfully in a hospital bed. Each time his relative took a turn for the worse, his doctors had something else lined up they would suggest could be done. Always the hope that one more this or that might pull him back. They never come out and tell you what’s what. They let you figure it out on your own, he said.
He felt robbed. Of time to say goodbye while hope was still active. Robbed of decisions the family might have made had they understood how little time was left.
But we are creatures with expectations, too. Sometimes we are not ready for the truth doctors have to tell any more than they are eager to tell us. Often, we are party to the hope that one more surgery, that one more intervention may avert what otherwise would be inevitable. We expect some heroics, if not of physicians, then of the technologies that have dramatically lengthened our lives. You could say that individually and collectively we are victims, in a way, of our medical successes if doctors seem not to have the language or inclination to carry us past our denials.
Maybe, before too long, we will have the patience to hear out ideas that aim to create the space for us to talk, heart to heart, about out dying.
Ofobike is Beacon Journal chief editorial writer. She can be reached at 330-996-3513 or by email at lofobike@thebeaconjournal.com.
