Next year we’ll spend $17 billion in Medicare dollars on an oxymoron: preventing inevitable death. So forget for a moment the plans coming out of Washington. Curing healthcare is not a question of Obama’s blue pill or Obama’s red pill. The answer may be no pill at all.
At the end of our long and increasingly longer lives, when we are terminally ill and in the last months of life, we must accept our bodies’ decline, face our own mortality, gather our families and say goodbye. Say no to feeding tubes, ventilators, resuscitators, the isolation of ICU.
End-of-life care eats up 12 percent of U.S. healthcare dollars; next year, we’ll spend $135 billion on it. That’s not money spent getting well and extending life, that’s money spent preventing and easing death in terminally ill patients. Indeed, 40 percent of Medicare dollars are spent in the last 30 days of life.
Where does the money go? Hospitals. Half of us die in hospitals, 20 percent of us in their ICU beds, which cost 10 times as much, on a daily basis, as hospice care. ICU costs $1,500 daily; on average, $10,900 the first day.
Don’t blame hospitals or physicians. We check in, we ask to be saved. Doctors provide care; they’re not supposed to cut off or limit care. Besides, they might get sued.
We are the problem. We are Harry and Louise, the fictional suburban couple who keep cropping up in TV ads, paid for by health industry groups. In 1994, they criticized government involvement in Clinton’s healthcare plan, and now in 2009 they support government reform in Obama’s plan. In each case, Harry and Louise embody and fan our fears about limiting care. They want it all, every choice, every procedure. They want doctors to “do everything possible.” Harry and Louise must die.
How did we get into this mess? The 30 percent end-of-life spending rate hasn’t changed since the 1970s, when Medicare began tracking it. We’ve been dying poorly — at great expense — for decades.
We did this to ourselves. We moved death out of homes and into hospitals, and once there, left poor or no instructions.
Besides, accept death? We’re Americans! We’re hard-wired to live fully and richly. We certainly will not go gently into that good night. Every day we cheat death. We buy automobiles with airbags on all sides, wear helmets when we bike and face infants backward in car seats. Many of us feel most alive flirting with death: We jump out of airplanes, surf with sharks and ski off-piste. We expect to be rescued from an avalanche and miracles to happen in the E.R. How do we know? We’ve seen it on TV.
That we fear death is understandable. Among human experience it’s the sole unknown. No matter where or how we live — in cities or countrysides, extreme skiing or sunning by the pool — death is the only part of life we can’t know.
But when it comes to dying, we act the same: We call 911 and leave decisions to medical professionals. We do everything medically possible to prevent death. We get hooked up. Do we fend off death? Nope.
In a study of terminally ill patients, one group received preventive care until death. The other group chose to be treated for pain with drugs, typically morphine, in a hospice setting. Which group lived longer? Patients treated only for pain lived 29 days more.
Hospice focuses on comforting the terminally ill patient and family, at a health facility or at home, the last six months of life. If a terminally ill person in hospice stops breathing, they die. If their heart stops, they die. If they stop eating, they’ll die within weeks.
If a terminally ill person who’s hospitalized stops breathing, they’re intubated. If their heart stops, they’re resuscitated. If they stop eating, a feeding tube is implanted. Death is prevented, life is extended — but the person is still terminally ill with cancer, or kidney disease, or heart disease or diseases of the brain.
Medical experts say feeding tubes extend life for those who, in the past, would die naturally, without medical intervention. When people near death, some can’t swallow, some with dementia don’t recognize food, others aren’t interested in eating. In many nursing homes, when a patient doesn’t eat, the choice is to accept end-of-life hospice care or be fitted with a feeding tube.
Loss of appetite is simply a stage in dying. Dying patients who stop eating drink water, sleep a lot and typically die within two weeks, of dehydration. It can be a gentle death.
Why should we care which path people take? Well, it comes out of our pockets. Medicare is funded by Social Security payroll taxes, and 75 percent of those who die each year are 65 or older, enrolled in Medicare. If we died more gently, we’d cut spending.
How? We ask terminally ill people how they want to die.
Asking doesn’t happen often enough, say medical experts who specialize in care for the dying. Terminally ill patients and their families need to make end-of-life choices, but they’re often not asked to make them in a hospital setting. When no one asks, and no one answers, guess what? Hospitals provide aggressive, life-extending care.
That kind of care for the terminally ill hospital patient “is a preventable category of expenditure,” says Julie Goldstein, M.D., section chief, Clinical Ethics and Palliative Medicine, at Advocate Illinois Masonic Medical Center. “It’s a preventable tragedy to the patient, and to the system.”
Goldstein says many patients, when asked by physicians whether they want to die in a hospital or at home with loved ones, “have of course chosen home.” That’s not always the case, she says. But what’s important is that families be given the choice before being bound to a hospital in those final days.
Let’s look beyond the financial cost: If you spend your last days in ICU, you’re necessarily cut off from most people because of risk of infection. There’s no sofa or extra bed for those who want to be with you as you die. You die alone.
If you spend your last days in hospice care, your family can come and go. They can sit beside your bed and read to you, or tell you a story, play music, watch TV, hold your hand. Is it messy to die at home? Yes. So is birth. We give birth at home; we YouTube births. We need to do the same for death. We need to welcome it again into our homes and our lives.
For 20 years, Loretta Downs, president of the Chicago End-of-Life Coalition, helped people die in a hospice setting. When her mother was settled into a Chicago nursing home in 2000, Downs noticed the residents either went off to the hospital and never returned, or died quite publicly, in shared rooms. Downs envisioned a private place within the nursing home for residents in their last days of life, with enough space for family to gather, an extra bed for overnight visits, space for residents in wheelchairs to come by.
Nursing home directors agreed, and provided dedicated space: a double room outfitted with one hospital bed and cozy furnishings for visitors. Downs named it the Chrysalis Room, for the transformational place caterpillars create before turning into butterflies. Chrysalis Rooms have been replicated in a dozen nursing homes in the U.S., says Downs, and more are in the works.
Downs used the room she helped create in 2006 when her mother was dying. “I moved in. It felt like home. I photographed my mother’s last eight days, so I could share the experience later.” Residents visited; so did nursing home staff, family and friends. “Visiting the dying helps others die,” she says. “We’ve hidden death.”
Better deaths, better parties?
When I was a little girl, I went with my family to a lot of wakes. Most of my very large family — I have 50 first cousins — lived within a few hours drive, from D.C. to Boston. French, Irish, Catholic: There were a lot of us, and some of us died. For three days and nights, we waked the dead. The coffin was open, and there was a stepped platform beside it, so little tykes like me could view the dead. I was never afraid: I thought the dead looked regal, laid out in their finest clothes, on a bed of off-white satin.
My cousins and I would dare each other to touch the body. Usually the hands. Dare you to move his fourth finger. Just a little. Or we’d stick coins in the lining. We’d plot and plan, and giggle. The only admonition I ever recall hearing was from my Grammy, a New Yorker through and through: “Oh, youze kids.”
Was there sadness? Of course, especially when it was one of us, one of the cousins, laid out in the box instead of outside plotting intrusions. But what I remember, fondly, was being in the embrace of family for several days and nights, celebrating the dead, comforting the grieving. My uncles told stories, my older cousins brought us along to the neighborhood bar. I can still remember the feeling of my scratchy dress on my legs as I swung them from the high bar stool. “Youze again?” the bartender would tease.
We can change. We can die with dignity and love, less expensively. We can put our fears to rest. Fill out a living will; say no to excessive care. Own the way you die. And die as you lived, surrounded by family and friends.