The day that Terry Shinkle died of lung cancer, he fancied himself on a journey, driving with his teenage grandson from their home near Kansas City to visit Purdue University. “Are we there yet?” he asked his wife, Susann Shinkle, a retired intensive care nurse. She was taking care of her 71-year-old husband at home with hospice care – a bed, oxygen, a wheelchair, medications for pain and comfort, and books on tape about Terry’s favorite topic, the Civil War, all provided by a company called Kansas City Hospice.

Several years earlier, when Terry and Susann were healthy and still in their sixties, they sat down with their two adult children and made it clear they did not want heroic care when they were dying. “We made a decision not to die hooked up to machines,” says Susann.

Terry underwent chemotherapy for a few months after his diagnosis, but the cancer had spread throughout his body. “One day Terry said: ‘you know, I think it’s time to stop this,’” recalls Susann.

On November 3rd, 2006, the day he died, his daughter Stacey was at his bedside telling him about her son’s road trip to Purdue in Indiana, where he was applying as a freshman for the next year. “Terry died thinking he was on the trip, too,” says Susann. “He died in peace.”

Polls suggest that the vast majority of Americans would prefer to die like Terry Shinkle – at home, or in a hospice facility with no fancy machines and with family nearby. Yet that’s not where most end up. Three-quarters of Americans die in a hospital or nursing home, with one out of five in an ICU hooked up to machines.

"Do not cast me off in old age; when my strength fails, do not forsake me!"
-- Psalms 71:9

The Mid-Death Crisis

The gap between people’s desires for how they want to die and what really happens at the end of life is vast and affects people from every religion and ethnic group. “No one should die in an intensive care unit who doesn’t want to be there,” says pro-life author and commentator Wesley J. Smith.

The universality of this desire gap might provide one important solution to the dilemma of too much care at the end by both giving people what they want and saving money.

As reported in Part 1 of this series, a study authored by health care analyst Donald Taylor at Duke found that patients in the U.S. who use hospice and palliative care each save $2,300. That’s a modest savings off the $50,000 spent per patient by Medicare for the last year of life, but it’s a start.  “This is one of the few cases where money is saved and it improves quality,” says Taylor.

Yet only about one in five Americans end up in hospice care, and out of these, one-quarter of them use hospice for five days or less. “Most people go to hospice in the last week of life, when the end was clearly coming for a long time, and they could have gone two months earlier,” says bioethicist Daniel Callahan.

“Educating more people to choose hospice will both save money and improve quality – and give people what they say they want,” says Taylor.

The Hospice Solution

“The concept of hospice initially came from England in the 1970s and was considered by many at the time to be a flawed notion,” he says. “We cure disease here, not give into it.”

Some physicians still oppose it. At the University of California at Los Angeles Medical Center, Bruce Ferrell, one of the heads of the palliative care program told the New York Times about a surgeon that became furious when a patient of his was told about hospice. “We do not use the h-word on my patients,” the surgeon told Ferrell, referring to the word “hospice.”

Some people also fear that palliative care is another name for abandonment of the old, or that it is a euphemism for putting unwanted patients on a slippery slope to euthanasia.

Yet most people who die an unwanted high-tech death do not demand heroic care because they are afraid of being euthanized. Most have either not planned ahead like the Shinkles in Kansas City, or no one laid out the options for them. “Too many people face death with no one having counseled them on palliative care and other options,” says Earl Blumenauer, U.S. Representative from Oregon. That’s why he sponsored legislation in the House to have Medicare pay for voluntary counseling – the provision that led to claims of government death panels.

Communication, says New Hampshire geriatrician Dennis McCullough, is key, preferably far in advance of illness. “You need time to talk things out. Old people need time to make decisions. Families, too, need to adapt. Sometimes just talking to patients seems to calm the situation, and it tends to cost less.”

Studies bear this out. In the March issue of the Archives of Internal Medicine researchers reported that patients with advanced cancer who talked about their end-of-life wishes with their doctors had significantly lower health care costs in the last week of life.

Rick Kodish, a pediatrician and the chairman of the department of bioethics at Cleveland Clinic, links his hospital’s record of less expensive but high quality care with providing patients as early as possible with the option of integrating palliative care when the time comes. “It’s not about pushing for life but alleviating suffering,” he says.

The tricky part comes when a slow, careful decision has not been made – which continues to be the majority of cases in the U.S. – and when people demand access to any and all care, expecting Medicare or Medicaid to pick up the tab. The decision can also be complicated by religious beliefs.

Recently, Catholic bishops affirmed the statement made by Pope John Paul II on March 20, 2004:  “It is not enough to reaffirm the general principle according to which the value of a man's life cannot be made subordinate to any judgment of its quality expressed by other men; it is necessary to promote the taking of positive actions as a stand against pressures to withdraw hydration and nutrition as a way to put an end to the lives of these patients.”  The Catholic hierarchy is calling for heroic care at the end of life based on a belief that doctors are obligated to cure if possible, always to care.

In Britain, Parliament and the National Health Service provide few options at the end of life as they encourage palliative care while strictly rationing costly, high-tech alternatives based on recommendations by their National Institute for Health and Clinical Excellence (NICE) and other agencies – a national policy that nonetheless is accepted by most of the British public.

In Belgium and the Netherlands, euthanasia is legally practiced, but not without controversy.  The fear among some is that euthanasia will be used as a premature “convenience” by families who want access to an inheritance, or by authorities who want to contain costs.

Americans, however, are unlikely to embrace euthanasia or an overt government rationing of care, removing a British-style solution from the table. One reason:  Many Americans continue to believe in the hope offered by science and technology, a hope which often leads to suspension of disbelief about one’s mortality. One near-term solution is to pass a stronger version of Earl Blumenauer’s proposed legislation about end of life counseling. The Democrat’s measure would create a national policy toward supporting hospice and towards training physicians and nurses to better understand the patterns of how people die – and how to decide when to guide patients and families towards palliative care.

Congress and the Administration can also continue to provide incentives for doctors and hospitals to use fewer futile interventions. For instance, a Medicare provision that punishes hospitals for readmitting non-emergency discharged patients for the same condition within 30 days has driven many medical centers to create home health programs that monitor patients and help keep them out of the hospital. “This has been a good incentive,” says Dennis McCullough, “the sort that should be replicated.”

“We need an array of financial incentives, to reward accountable care and penalize unnecessary care,” says Blumenauer.

Most of all, Americans need to have a thoughtful political discussion of the sort they have had in the U.K. This is unlikely to happen, however, with a sharply divided partisan Congress and politicians who don’t have the courage to challenge powerful special interests such as trial lawyers, doctors, and hospitals.

There is another solution that may seem counterintuitive given the overuse of technology at the end of life – that more of the right kind of technology might actually improve people’s quality of life and cost less money.

Geneticist and physician Lee Hood says, “The future of healthcare is predictive and preventive medicine – developing genetic and other tests that can provide clues for individuals to prevent diseases before they happen.”

Right now, a simple cholesterol test can indicate a risk factor for heart disease and motivate a patient to change his diet and lifestyle. More cutting-edge genetic tests that can determine a person’s risk for certain cancers is in an earlier stage of scientific and clinical validation. Collecting data on how drugs and treatments work, and who benefits and who doesn’t is another potential cost saver. 

“It’s ridiculous that we don’t collect this data,” says University of Southern California oncologist David Agus. “Patients are suffering and we’re making costly mistakes again and again because we don’t have this information.” President Obama has been pushing so-called comparative effectiveness by allocating funds from last year’s economic stimulus plan and this year’s federal budget to study which treatments work and which don’t.

“The goal here is not to prevent death,” says Agus, “as much as some people might like this, but to reduce the costs and suffering brought on by chronic conditions as one ages. Chronic care is far more expensive than dying.”

None of these solutions are likely to work, however, if Americans aren’t more willing to talk about mortality. “We need to discuss dying more,” says bioethicist Arthur Caplan, “in churches, doctors’ offices, in families.” He counsels people to discuss their deaths when the family gathers for Thanksgiving or Christmas. “That usually doesn’t go over well,” he says, “I get a lot of nervous laughter.”

While she was still teaching nurses, Susann Shinkle had her students prepare an advanced directive that left instructions about how much heroic care they wanted at the end of life. “They were mostly in their early twenties, and this was not something they thought about,” she says. “But each of them will face what we did with Terry. The question is, will they or their loved one die well?”

This is the final story in the five-part series. Click here  for part four (previous).  Click here for part one (previous). Click here  for part  two of this five-part series. Click here  for part  three of this five-part series.

David Ewing Duncan’s most recent book is "Experimental Man: What one man’s body reveals about his future, your health, and our toxic world."

See the whole David Ewing Duncan - Life at all Costs Series