The Cost of Dying: End-of-Life Care

This story was originally published on Nov. 22, 2009. It was updated on Aug. 6, 2010.

Every medical study ever conducted has concluded that 100 percent of all Americans will eventually die. This comes as no great surprise, but the amount of money being spent at the very end of people's lives probably will.

Last year, Medicare paid $55 billion just for doctor and hospital bills during the last two months of patients' lives. That's more than the budget for the Department of Homeland Security, or the Department of Education. And it has been estimated that 20 to 30 percent of these medical expenses may have had no meaningful impact. Most of the bills are paid for by the federal government with few or no questions asked.

Now you might think this would have been an obvious thing for Congress to address when it passed health care reform, but as we reported last November in the midst of the debate, what use to be a bipartisan issue has become a politically explosive one - a perfect example of the rising costs that threaten to bankrupt the country and how hard it is to rein them in.

Caring Connections
National Hospice and Palliative Care Organization
Full Segment: The Cost of Dying
Web Extra: Comfort and Costs
Web Extra: At Home, At Peace

Marcia Klish is either being saved by medical technology or being prevented from dying a natural death.

She is 71 years old and suffering from the complications of colon surgery and a hospital-acquired infection. She has been unconscious in the intensive care unit at Dartmouth-Hitchcock Medical Center in Lebanon, N.H., for the better part of a week.

One of her doctors, Ira Byock, told "60 Minutes" correspondent Steve Kroft it costs up to $10,000 a day to maintain someone in the intensive care unit. Some patients remain here for weeks or even months; one has been there for six months.

"This is the way so many Americans die. Something like 18 to 20 percent of Americans spend their last days in an ICU," Byock told Kroft. "And, you know, it's extremely expensive. It's uncomfortable. Many times they have to be sedated so that they don't reflexively pull out a tube, or sometimes their hands are restrained. This is not the way most people would want to spend their last days of life. And yet this has become almost the medical last rites for people as they die."

Dr. Byock leads a team that treats and counsels patients with advanced illnesses.

He says modern medicine has become so good at keeping the terminally ill alive by treating the complications of underlying disease that the inevitable process of dying has become much harder and is often prolonged unnecessarily.

"Families cannot imagine there could be anything worse than their loved one dying. But in fact, there are things worse. Most generally, it's having someone you love die badly," Byock said.

Asked what he means by "die badly," Byock told Kroft, "Dying suffering. Dying connected to machines. I mean, denial of death at some point becomes a delusion, and we start acting in ways that make no sense whatsoever. And I think that's collectively what we're doing."

A vast majority of Americans say they want to die at home, but 75 percent die in a hospital or a nursing home.

"How do so many people end up in the hospital?" Kroft asked Dr. Elliott Fisher, a researcher at the Dartmouth Institute for Health Policy.

"It's the path of least resistance," Fisher said.

The institute did a detailed analysis of Medicare records for patients in the last two years of their lives. Fisher says it is more efficient for doctors to manage patients who are seriously ill in a hospital situation, and there are other incentives that affect the cost and the care patients receive. Among them: the fact that most doctors get paid based on the number of patients that they see, and most hospitals get paid for the patients they admit.

"The way we set up the system right now, primary care physicians don't have time to spend an hour with you, see how you respond, if they wanted to adjust your medication," Fisher said. "So, the easiest thing for everybody up the stream is to admit you to the hospital. I think 30 percent of hospital stays in the United States are probably unnecessary given what our research looks like."

And once someone is admitted to the hospital, Fisher says, they're likely to be seen by a dozen or more specialists who will conduct all kinds of tests, whether they're absolutely essential or not.

Meredith Snedeker's 85-year-old mother spent her last two months shuttling between a nursing home and community hospital in New Jersey, suffering from advanced heart and liver disease.

Dorothy Glas was a former nurse who had signed a living will expressing her wishes that no extraordinary measures be taken to keep her alive. But that didn't stop a legion of doctors from conducting batteries of tests.

"I can't tell you all the tests they took. But I do know that she saw over 13 specialists," Snedeker told Kroft.

Asked what kind of specialists, Snedeker said, "Neurological, gastroenterologists. She even saw a psychiatrist because they said she was depressed. And she told the psychiatrist, 'Of course, I'm depressed. I'm dying.'"

When we reviewed the medical records, we discovered that there weren't 13 specialists who attended to her mother: there were 25, each of whom billed Medicare separately.

The hospital told 60 Minutes that all the tests were appropriate, and an independent physician said this case was fairly typical.

Among the tests conducted was a pap smear, which is generally only recommended for much younger women, not an octogenarian who was already dying of liver and heart disease.

"In medicine we have turned the laws of supply and demand upside down," Elliot Fisher said. "Supply drives its own demand. If you're running a hospital, you have to keep that hospital full of paying patients. In order to, you know, to meet your payroll. In order to pay off your bonds."

"So, the more M.R.I. machines you have, the more people are gonna get M.R.I. tests?" Kroft asked.

"Absolutely," Fisher said.

"There are people that would argue this is great medicine. You get tested for every conceivable, possible malady you might have," Kroft pointed out.

"Often the best care is saying 'Let's see how you do on this particular treatment for a couple of days. And see if you respond.' Not necessarily doing a lot of tests," Fisher said. "The best care may well be staying home with a trial of a new medication, rather than being admitted to a hospital where you can be exposed to a hospital-acquired infection. We have a system that rewards much, much more care."

In almost every business, cost-conscious customers and consumers help keep prices down. But not with health care. That's because the customers and consumers who are receiving the care aren't the ones paying the bill.

"The perverse incentives that exist in our system are magnified at end of life," David Walker, who used to be the government's former top accountant, told Kroft.

Walker used to be the head of the Government Accountability Office. He now heads the Peter G. Peterson Foundation, which is a strong advocate for reducing government debt. He says that 85 percent of the health care bills are paid by the government or private insurers, not by patients themselves. In fact most patients don't even look at the bills.

"Does that make any sense to have, I mean, most things you buy, the customer has some impact," Kroft remarked.

"We have a system where everybody wants as much as they can get, and they don't understand the true cost of what they're getting. The one thing that could bankrupt America is out of control health care costs. And if we don't get them under control, that's where we're headed," Walker said.

With end-of-life care, there are also delicate cultural and political considerations.

Patients, with their families' support, want to cling to life, and it is often easier to hope for a medical miracle than to discuss how they want to die.

When we met Charlie Haggart, he was 68 years old and suffering from liver and kidney failure. He wanted a double transplant, which would cost about $450,000. But doctors have told him he's currently too weak to be a candidate for the procedure.

At a meeting with Haggart's family and his doctors, Dr. Byock raised the awkward question of what should be done if he got worse and his heart or lungs failed.

Byock told him that resuscitation rarely works on someone in Haggart's condition, and that it could lead to a drawn out death in the ICU.

"Either way you decide, we will honor your choice, and that's the truth," Byock reassured Haggart. "Should we do CPR if your heart were to suddenly stop?"

"Yes," he replied.

"You'd be okay with being in the ICU again?" Byock asked.

"Yes," Haggart said.

"I know it's an awkward conversation," Byock said.

"It beats second place," Haggart joked, laughing.

"You don't think it makes any sense?" Kroft asked the doctor.

"It wouldn't be my choice. It's not what I advise people. At the present time, it's their right to request it. And Medicare pays for it," Byock said.

Haggart died a few months later. A family member told us that his condition deteriorated so much they decided to let him go peacefully.

But when it comes to expensive, hi-tech treatments with some potential to extend life, there are few restrictions.

By law, Medicare cannot reject any treatment based upon cost. It will pay $55,000 for patients with advanced breast cancer to receive the chemotherapy drug Avastin, even though it extends life only an average of a month and a half; it will pay $40,000 for a 93-year-old man with terminal cancer to get a surgically implanted defibrillator if he happens to have heart problems too.

"I think you cannot make these decisions on a case-by-case basis," Byock said. "It would be much easier for us to say 'We simply do not put defibrillators into people in this condition.' Meaning your age, your functional status, the ability to make full benefit of the defibrillator. Now that's going to outrage a lot of people."

"But you think that should happen?" Kroft asked.

"I think at some point it has to happen," Byock said.

"Well, this is a version then of pulling Grandma off the machine?" Kroft asked.

"You know, I have to say, I think that's offensive. I spend my life in the service of affirming life. I really do. To say we're gonna pull Grandma off the machine by not offering her liver transplant or her fourth cardiac bypass surgery or something is really just scurrilous. And it's certainly scurrilous when we have 46 million Americans who are uninsured," Byock said.

"Every other major industrialized nation but the United States has a budget for how much taxpayer funds are allocated to health care, because they've all recognized that you could bankrupt your country without it," David Walker told Kroft.

Asked if he is talking about rationing, Walker said, "Listen, we ration now. We just don't ration rationally. There's no question that there's gonna have to be some form of rationing. Let me be clear: Individuals and employers ought to be able to spend as much money as they want to have things done. But when you're talking about taxpayer resources, there's a limit as to how much resources we have."

But if recent history is any guide, rationing has become the third rail of American politics, even though Elliot Fisher says we already limit health care based on income and whether people have insurance.

After analyzing Medicare records for end-of-life treatment, Fisher is convinced that there is so much waste in the present system that if it were eliminated there would be no need to ration beneficial care to anyone.

Multiple studies have concluded that most patients and their families are not even familiar with end-of-life options and things like living wills, home hospice and pain management.

"The real problem is that many of the patients that are being treated aggressively, if you ask them, they would prefer less aggressive care. They would prefer to be cared for at home. They'd prefer to go to hospice. If they were given a choice. But we don't adequately give them a choice," Fisher said.

"At some point, most doctors know that a patient's not likely to get better," Kroft remarked.

"Absolutely," Fisher agreed. "Sometimes there's a good conversation. Often there's not. You know, patients are left alone to sort of figure it out themselves."

That's what Meredith Snedeker says happened to her mother. Though she received $40,000 worth of care in her last two months of life, not one of her 25 doctors sat down with Dorothy Glas and her family and discussed how she wanted to die.

Marcia Klish might have lingered for quite some time in the intensive care unit at Dartmouth-Hitchcock Medical Center. But Dr. Byock and his team had a number of meetings with her closest friend, Barbara Menchin. She said Klish would not want to be kept alive on machines if there was no meaningful hope of recovery.

It was decided the doctors would not try to resuscitate her if her condition worsened, which it soon did.

"Her heart has just flipped into a rhythm that doesn't allow it to beat effectively," Byock told Menchin.

Klish died a few moments later.

"This is a hard time in human life. But it's just a part of life," Byock said.

"Collectively, as a culture, we really have to acknowledge that we're mortal," he said. "Get over it. And start looking at what a healthy, morally robust way for people to die looks like."

If you are wondering whether the health care reform legislation passed in March addressed any of the end-of-life issues raised in our story, the short answer is no.

The new law is designed to slow the growth of Medicare expenses, and includes a pilot program to reward doctors for the quality of care they provide rather than the quantity. But it also reduces Medicare payments for hospice programs that studies have shown to be very cost efficient.

Produced by Andy Court