Life, love and palliative care

My greatly beloved sister Jane died this morning, a peaceful end to 84 years of a life extraordinarily well lived. For a few days she had been on palliative care.

Palliative care. File that term away for yourself, your parents, your friends and family. It’s the new best thing, even though for centuries it was the old best thing: keep me comfortable and let life come full circle. For centuries we believed that life was a cycle: birth, Stuff, death. Some people’s stuff was better than others, but there was a general agreement that death happened, so it made sense to ease it along when the time came. Usually it didn’t take long. Often, if ease was not to be had, the family doctor invited everyone in briefly to say goodbye, closed the door and administered a shot of morphine.

Then we invented chemotherapy and ventilators and feeding tubes and miracle drugs and adopted the national attitude that one is supposed to live forever. Plus, we invented lawsuits. So dying turned into something horrid and often painful, something one is really not supposed to do. Physician aid-in-dying for the terminally ill became illegal; even talking about it gave Sarah Palin the death panel willies.

My sister Jane was a gifted artist who told me, a few days before she died, that she’d reached the apex of her career because one of her recent paintings was stolen from a show currently on view. (She was also delighted that others were selling well.) She was a remarkable mother, hostess, book-lover, friend, and about the world’s best big sister. The day after our last conversation she had respiratory failure (quit smoking, please, if you haven’t already) and began to die.

Jane was briefly on a ventilator, which I hated as much as she, but one does what needs to be done. Very quickly she moved from that to palliative care. Her husband, four daughters and assorted grandchildren gathered around to sing songs, hold hands, administer foot rubs, report to her remaining two sisters and innumerable friends that all was well.

This is not an argument against miracle drugs or aggressive interventions when appropriate, or even against feeding tubes and ventilators — although if you catch my children approving such things after I conk my head on the curb please remind them of my explicit instructions to the contrary. But it is an argument to confront mortality, complete your advance directives, talk to family and friends about your own wishes no matter how young and immortal you feel yourself to be, support compassionate and humane dying. Advocating for decent health care for the living wouldn’t be a bad way to start.

Palliative care is a valuable new/old thing. So are big sisters like Jane, although they are hard to come by.

Obama plays the Medicare card

President Obama, with Vice President Biden and Speaker Pelosi behind him, delivers a joint address to Congress on September 9 (Alex Wong/Getty)
President Obama, with Vice President Biden and Speaker Pelosi behind him, delivers a joint address to Congress on September 9 (Alex Wong/Getty)

For almost anyone over 50, the central issue of health care boils quickly down to Medicare. Will I keep it? Will it be there when I need it? Will it change?

In his address to a joint session of Congress Wednesday night, President Obama looked straight at the camera while saying he wanted “to speak directly to seniors: Medicare has been here for four decades, and is a sacred trust that must be passed down” to future generations. Then he pointed out to those seniors that the legislators opposing his reform plan are the same “folks who voted against Medicare in the beginning” and this year voted for a budget that would privatize it. He said also that much of the plan will be paid for by reducing waste and inefficiency in Medicare and Medicaid. Anybody who’s had (and thank you, I have) Medicare coverage for more than 15 minutes knows about waste and inefficiency. So cut those, and leave the system, and we should all be happy.

We should all be happy, that is, if such care extends to everyone. And if Mr. Obama’s references to the U.S. being the only developed country that lets its citizens suffer daily for want of adequate health care didn’t communicate the moral wrong that reform will attempt to right, you weren’t listening. What we heard was outline, and the president’s throw-away line about a few details yet to be worked out got an expected congregational chuckle. Some of us are more optimistic than others about whether any substantive change for the common good will remain by the time the final bill is drawn.

The details are ahead for the devil to be in, and he/she is surely ready. Whether public support will be forthcoming seems likely to boil down to a whom-to-believe game. Obama repeatedly stressed that “nothing in our plan requires you to change what you have.” But in delivering the Republican response immediately after the speech, Representative Charles Boustany of Louisiana promised listeners that they would be in for “replacing your family’s current plan with government-sponsored healthcare.” Boustany also tossed in references to “rationing care” and to general “fear and anxiety,” giving a distinct impression that battle lines are still drawn.

About those battle lines: Republicans sat on their hands as Obama once again proclaimed the rumors about bureaucrats who would kill off senior citizens — he skipped dignifying Sarah Palin by using the death-panel words — to be “lies, plain and simple.” And although he got the other side of the aisle to stand when he insisted there must be reform of medical malpractice laws, there were no smiles when he pointed out that the cost of health reform will be less than the tax breaks for wealthiest Americans passed during the previous administration.

Somehow, what truths and certainties do exist must be kept alive in the fray: Medicare is not going away. End-of-life conversations won’t kill off grandma. (Sadly, this provision may be already dead anyway.) The plan’s not going to cover illegal immigrants or pay for abortions. Medical malpractice laws must be reformed. Nothing will adequately replace the public option. A health care plan that offers access to all, imperfect or not, is only common decency.

This senior’s trust is still in Barack Obama.