Living All the Way
Cost of Dying: Discovering a better way for final days
By Lisa M. Krieger
Posted: 12/29/2012 04:00:00 PM PST
January 5, 2013 4:27 AM GMT Updated: 01/04/2013 08:27:57 PM PST
Almost a year ago, we started a profoundly personal conversation about the sorry state of dying in America.
The discussion, inspired by my frail 88-year-old father's expensive hospital death, has taught me that too much drama and desperation consume our final days, lending them too little dignity.
Today, I want to build on our conversation and prescribe a cure -- a new way of considering end-of-life medicine -- in the final installment of our yearlong examination of the emotional and financial Cost of Dying.
It is not a drug or a device, a test or therapy. It is a different way of organizing our ending -- so that we live our last days better and pass more gently.
Powerful lessons have emerged from the stories of suffering and triumph we have shared -- not only through the reporting but from dozens and sometimes hundreds of emails and phone calls from readers. Together, we've met Bay Area people like Ray Brown, who showed how agonizing it can be when a loved one's end-of-life wishes are unknown. And doctors like Jessica Zitter, who insists it's the doctor's job to help families decide whether it's time to quit. We admired the resolve of Bill Newman, who wears his end-of-life wishes on a homemade "Do Not Resuscitate" badge, and marveled at caregivers like Susan Meyers who sacrificed her own well-being to allow her beloved husband, John, to die at home.
And we were privileged to share Gayla Caliva's own goodbye, as the retired hospice nurse from San Jose chose to enjoy stargazing and spicy foods with friends instead of exhausting and painful dialysis.
The real miracle? Places as different as a community in Wisconsin and Oakland's Highland Hospital are showing the way to a death that is kinder and less expensive. Medicare has become the single biggest contributor to the country's long-term budget deficit, according to the Congressional Budget Office. And a quarter or more of Medicare costs are incurred in the last year of life.
"Everyone says they don't want to die in a hospital, with tubes in every orifice," said U.S. Rep. Jackie Speier, D-San Mateo. She saw the two paths of medicine when her parents died. She lost her 92-year-old mother after an angioplasty meant to improve her life instead led to intensive care and nine months of decline. Her father, in contrast, died after five days in hospice, his pain controlled.
If we want to improve end-of-life care, "there are ways to do it -- but we have to commit to it," she said.
Some of the solutions can start at home tonight, at the dinner table. Others are more formidable, requiring doctors, hospitals and federal health policy to change.
Our conversation has taught us that, yes, there is a cure for the cost of dying in America. It will reduce suffering and expense, and here's how we begin:
Cure 1: Take charge of our deaths by putting wishes in writing
While 82 percent of Californians say it is important to have end-of-life wishes in writing, only 23 percent of us have done so, according to a poll by the California HealthCare Foundation.
And that changes with you.
Newman, an 87-year-old double bypass survivor from Capitola, taught us it's our responsibility to participate in decisions about our care and to delegate someone to represent us. Not only does he wear a DNR badge, he posted the same message on his refrigerator and shared it with his doctor and 10 children. Like him, we have a responsibility to speak up, before our voices weaken and fail.
You -- not doctors, not nurses -- are the expert on your wishes about end-of-life care. First, tell your loved ones. Secondly, appoint someone to act as your bedside advocate. Many new online resources can help you get started, such as The Conversation Project, advance care planning videos by the Coalition for Compassionate Care of California, and advance care directive forms at www.mercurynews.com/cost-of-dying.
If you or your loved one is seriously ill, frail or very elderly, ask your doctor for a POLST (Physician Orders for Life-Sustaining Treatment) form. The bright pink form turns your treatment wishes into a medical order.
Cure 2: Involve entire communities in commitment to planning
Doctors who don't know our wishes can't honor them. That's why one entire Wisconsin community set out to make sure its residents' end-of-life decisions were as much a part of their personal medical records as their blood pressure medications and peanut allergies.
The physician-led nonprofit Gundersen Lutheran Health System in La Crosse hired a facilitator whose sole job is to discuss advance planning with every patient -- even young, healthy people -- so that their wishes appear in electronic medical records easily transferred from facility to facility. This system, called "Respecting Choices," required an investment of time, money, training and organization. But the result? A stunning 96 percent of the community's adult residents who died during a seven-month period in 2010 had documented their wishes -- and end-of-life medical costs are low. "Respecting Choices'' has since been replicated in more than 60 organizations in the United States, as well as nationally in Australia and Singapore.
Oregon created a statewide electronic registry for POLST advance care directives in 2009. In 2011, the registry's second full year of operation, there were more than 200 instances when 911 medics racing to an emergency knew a person's medical wishes before they arrived.
Hospitals in California, like those in Wisconsin, could ensure that patient electronic records include an advance directive or POLST order, assuring rapid access to patients' end-of-life choices. Ultimately, a statewide registry, like Oregon's, could be created.
Cure 3: Encourage doctors to talk more frankly about choices
Doctors are adept at describing blood pressure, kidney function or cardiac output. But hospitals and medical schools need to do more to train doctors to answer questions about the effectiveness and necessity of treatment.
"It's scary for doctors to talk about," said Zitter of Oakland's Highland Hospital, who meets with families of ICU patients at least twice a day, often in tense circumstances. "It's much simpler to just keep treating the kidney problem, or the lung problem, without talking about it."
"But if people really understood the truth about their medical situation, they will make educated choices," she said. "They are less likely to get carried along this train ride of intensive care."
UC San Francisco and other schools are starting to train doctors how to break bad news and outline hard choices.
We can help, by asking critical questions: Is a cure still possible? What do you expect in the next few weeks or months? Is there treatment to prolong life? What kind of life will it be?
Cure 4: Pay doctors to help patients decide what's best for them
Doctors are paid to operate and prescribe drugs or radiation, but they aren't paid to talk to families.
Medicare and insurance companies need to reward doctors to guide families through essential medical decisions -- especially because these conversations can help us get the right care when it matters most, with big cost savings.
These are time-consuming dialogues. If another round of chemotherapy is attempted, what are the side effects? Will a feeding tube be temporary -- or permanent?
But the system discourages such engagement.
"Insurers, Medicare and Medi-Cal more readily pay for diagnosis and treatment than anything else that doctors do," said Dr. Ira Byock of Dartmouth-Hitchcock Medical Center in Lebanon, N.H.
Early legislation to reform the nation's health care system tried to pay doctors for these conversations. But remember "death panels"? That partisan label torpedoed the idea by conjuring up images of bureaucrats deciding which patients were worthy of care.
But the idea is back, as U.S. Rep. Earl Blumenauer, D-Ore., plans to reintroduce HR1589, the "Personalize Your Care Act" in the new session.
Cure 5: Avoid costly care that won't prolong or improve life
Medicare stimulates the creation of new tools to combat death -- even where effectiveness is questioned. That's because its reimbursement rules virtually guarantee that drug and device manufacturers have a market for any product aimed at people older than 65. And who profits? U.S. drug companies and device-makers who ring up hundreds of billions of dollars in domestic sales annually and make up a powerful lobby.
Since Medicare was established in 1965, it has precluded consideration of cost in coverage decisions. Changing the law could fix that.
For example, Medicare covers the $80,000 to $100,000 cost of the lung cancer drug bevacizumab, despite uncertain benefits in patients older than 65. It also pays for a $100,000 heart pump -- the ventricular heart assist device -- even though three of four recipients die within two years.
A feeding tube helped sustain Fran Cole's beloved mother when Parkinson's disease took away her ability to swallow. But as the disease progressed, and her mother became unresponsive, the tube's forced feeding became a curse.
Medicare should restrict payment for certain aggressive interventions in some dying patients, said Dr. Muriel Gillick, a geriatrician at Harvard Vanguard Medical Associates.
So, if the National Institutes of Health determines that comfort care is the best approach to advanced Alzheimer's disease, Medicare shouldn't pay for ICU, CPR, dialysis or other interventions, according to Gillick.
Doctors, too, should be better gatekeepers. Blind application of rapidly developing medical technologies "to any and every patient is not good practice of medicine," said Dr. Jeffrey Stoneberg of Alta Bates Summit Medical Center in Oakland.
They have a responsibility to use treatments on patients who will best benefit from them, he said, and to withhold therapies when the risks outweigh the benefits.
Hospitals need to exert their influence, not to create a financial barrier to survival, but to discourage extraordinary expenditures with little human payoff. Daly City's Seton Medical Center averts unnecessary or ineffective care through its "Medically Ineffective Care" policy. If a family insists on such care, the hospital can discharge the patient.
Cure 6: Offer better comfort care to patients in their final days
A lot of hospitals claim to have comfort, or palliative, care for dying patients. But there's no standard; at some places, such care may consist of a chaplain or part-time nurse who makes rounds to people in pain. Sometimes, patients and their families may not even know it exists.
This is a cure that hospitals can pioneer. Each facility needs a team of palliative care doctors and nurses to help us live every minute as richly as possible. The chronically ill need simple measures to control pain, ease anxiety and manage emphysema or heart failure. Give the team its own budget and make sure patients know it is available.
"If you do not know that there are other options to usual aggressive medical care, then you will never be able to choose them," Stoneberg said.
Some hospitals are even moving palliative care into the emergency room, to catch the very frail elderly before they are put on the "tube 'em and move 'em" conveyor belt to the ICU. New York's Montefiore Medical Center and Atlanta's Emory University are leading this effort, and their examples could be replicated nationwide.
Comfort care can even be moved into the community, keeping people like Marilyn Cronin, who at 58 suffers from lung disease and liver failure, in her Soquel home instead of the hospital. The Palo Alto Medical Foundation is successfully testing that approach, with old-fashioned house calls.
Cure 7: Pay families to help at home instead of using hospitals
Medicare will spend hundreds of thousands of dollars for us to stay in the hospital, but it's far less generous if we want to take care of our chronically ill loved ones at home. It does not pay for a live-in nurse, homemaker or home health aide. Your family or hired caregivers must provide months of bedside care. It pays for a nurse to visit only if you are receiving comfort care through hospice or have a "skilled nursing" need, such as changing bandages.
Federal policymakers need to expand home care benefits to ease the burden and expense on family caregivers and to support choices that are usually cheaper for taxpayers than hospital care. The National Alliance for Caregiving is appealing to Congress to boost funding for assistance, counseling, respite and other services for caregivers.
Dr. John Meyers, 84, spent his final months at home in San Mateo, only because of the careful financial planning and tireless efforts of his wife, Susan.
One of six Californians knows her struggle, as they care for a sick or elderly family member.
"As a family, we had no idea how unprepared we were to go through the process," wrote reader Debbie Gary, who helped care for her mother at home.
Cure 8: Broaden use of comfort care through Medicare, insurance
Medicare's outdated policies limit our access to cost-effective and comforting end-of-life care like hospice -- and federal legislators must change that.
Hospice was still an experiment in the early 1980s, when the Reagan administration allowed it to be covered under Medicare. Now it has been proved to reduce both costs and suffering -- but the tough eligibility requirements haven't changed.
For instance, Medicare pays for the comfort care of hospice only if we quit seeking a cure. It's a diabolical either-or choice.
There's another problem: Medicare won't pay for hospice unless we are diagnosed to die within six months. That often denies it to dementia patients, who tend to live longer than cancer or heart disease patients.
An experiment by the Aetna insurance company shows a better way. Its "Compassionate Care Enhanced Hospice" let members enroll in hospice while continuing treatment. It also accepted members with life expectancies of 12 months. The results: a decrease in costly emergency room and intensive care. In 2010, Aetna added the feature to most of its medical plans.
The new health care reform legislation includes plans for enhanced hospice with Medicare patients, but the projects haven't been funded.
Ultimately, the cure is acknowledging that pointless suffering, not death, is the foe.
Our medical resources are squandered "when death is not seen as a natural part of life, but rather something that can be prevented or at least postponed as long as possible," said Stoneberg, the Alta Bates doctor.
After writing about my father's death, I've learned what I can't change: illness, aging and death. They are painfully and inevitably the human condition.
But our conversation has shown us how we can change: better informed decisions. Wiser use of technology. More judicious spending. Greater sensitivity. Less desperation.
These lessons could cure the conflict between "do everything" medicine and our desires for a peaceful passing, making it affordable enough, and humane enough, to ease the painfully high cost of dying.