Trying to Figure the Beginning of the End
American medicine knows what death is. Dying, however, is an enduring mystery.
When dying actually begins is more than just a philosophical puzzle. It is a crucial question facing sick people and their families, doctors and policymakers, as the nation struggles to redefine the end of life in an era of shrinking health care resources.
Do you send a sick woman to a hospice? Do you take an ailing man off a ventilator? Where physician-assisted suicide is legal, who do you decide is eligible for this most final care? When do you forge ahead with aggressive measures, and when do you back off, give comfort, let go?
Each of these scenarios would be far less thorny for everyone involved if doctors could only tell whether a patient was dying. The problem is that most of the time it is impossible to know when people turn the corner from being terminally ill to actually dying.
For we die differently now than we did 100 years ago, when the American life expectancy was 49 years, not 76, before antibiotics and beta blockers, CT scans and MRIs. Dying today is a long, slow process; medicine has been slower still to adapt to the change.
As a result, there are growing cries for more research into just what dying really looks like for people with chronic killers such as Alzheimer’s disease and congestive heart failure--ailments whose end stages remain uncharted. Correspondingly, there is increased interest in the dusty art of prognosis--predicting how a disease will progress and what the result will be.
“To the extent that we were able to predict when life ends, it might help us to enhance the quality of care that patients get,” said Dr. Nicholas Christakis, associate professor of medicine and sociology at the University of Chicago. That knowledge could also help “to rationalize the quality and cost of care we deliver. . . . But it is difficult to predict the timing of death, and doctors are extremely loath to do that.”
At the same time, debate is brewing over just how helpful more information about the dying process could be. Some critics argue that patients would be better served if doctors, instead of learning more about the physiology of dying, were taught to be flexible in the face of death’s uncertainty--if they could manage serious pain more skillfully without abandoning treatment that could keep patients alive.
There are efforts across the country to try to give both palliative and life-prolonging care in tandem to the terminally ill. Most people, however, still get one or the other, largely because of the way doctors have been educated and most insurance is structured.
So people at the end of life are forced to make what medicine calls “the terrible choice”: to fight the disease or die without pain.
“I think what we need to learn everywhere in our society is tolerance for uncertainty,” said Dr. Diane Meier, director of the palliative care program at Mt. Sinai School of Medicine in New York. “People don’t die on schedule. We should stop expecting them to. We should prolong life as long as we can if it’s not burdensome to the patient and leave the rest up to the heavens.”
The question “How long will I live, Doc?” with its myriad ramifications comes up every day in every American hospital. Not all patients ask the question or even want to know the answer; for those who do, though, such information is often the key to a better end.
“How you wrote your will, structured the finances for your family, these are enormously practical issues that people who die suddenly may not have addressed, leaving their family bereft in many ways besides emotionally,” said Dr. Kathleen Foley, attending neurologist at Memorial Sloan-Kettering Cancer Center in New York City and director of the Project on Death in America.
Beyond sorting out practicalities, finding out that you are dying creates what Foley calls a “teachable moment” for opening a family discussion that is at once “touching, moving, compassionate and caring and enormously powerful.”
And very, very complicated.
A Road Map for Dying
Anna, a New York painting conservator, describes the knowledge that her artist partner, Joseph, was going to die as a sort of road map to dangerous and unexplored territory. Their names have been changed at Anna’s request.
Joseph was diagnosed with cancer of the esophagus in the spring of 1996, after several months of heartburn and difficulty swallowing. To remove the malignant tumor, he underwent a risky and complex surgery during which his ribs were severed and his heart moved aside.
When the cancer came back six months later, he turned to a variety of experimental therapies. They were followed by remission, reoccurrence and finally a bone growth in his skull that affected his nervous system.
Throughout the painful treatment and discussion, Foley, his doctor, offered “a platform for him to think about [death] out loud,” Anna recalled. “It is difficult for some patients to talk about this. It was difficult for him.”
And it was, perhaps, more difficult for Anna. Always in command, Joseph managed to face his death head on and act. Anna, whom he described as “relentlessly optimistic,” could take only an occasional peek at the prospect of his death or she could not function.
“I very slowly moved to the fact that he was really going to be dying,” she said. A pause, then tears. “Our talking about it was like looking at a map. It helped me in terms of orienting myself, having a sense that if the situation got unmanageable, I could look at the map and know. It was a way for me to protect myself.”
This is how Joseph spent his last months, knowing that he would die: He considered suicide and changed his mind. He got his estate in order. He reached out to the friends and family members he loved. He created the kind of death he needed--at home, dignified and as pain-free as possible. He and Anna were married.
“I cannot imagine that the knowledge [of impending death] is not helpful,” Anna said.
Instead of being felled fast by turn-of-the-century killers like influenza, pneumonia and tuberculosis, these days we are living far longer, and near the end of life, lingering with complicated combinations of chronic maladies such as heart disease, lung disease and strokes.
As a result, the practice and culture of medicine have changed. Until the middle of the 20th century, doctors used to focus on figuring out if and when a disease was likely to kill.
Now that they are armed with better drugs and new technologies, now that they can do something more often than not, their efforts have shifted to diagnosing and treating disease. Death is now the enemy.
“One hundred years ago, when we didn’t have a lot of therapeutics and our diagnostic skills were somewhat limited, one of the most valuable things a physician could provide was, ‘Will this get better or will this kill him?’ ” said Dr. James M. Gilchrist, professor of neurology at the Brown University School of Medicine in Rhode Island and author of the recent text “Prognosis in Neurology.”
“You read stories where the doc goes in and comes out and says, ‘Your father’s dying.’ That doesn’t happen anymore,” Gilchrist said. “We’re afraid to say they’re dying.”
In a recent study of doctors’ views about prognosis, Christakis--whose book “Death Foretold” will be out this winter--found that physicians not only dislike prediction, but they are afraid of it and feel ill-schooled in its intricacies.
In addition, a kind of magical thinking pervades many doctors’ views, because many believe that their prognosis will affect what happens to the patient. Many doctors believe that if they make an optimistic prediction, the patient is more likely to survive, according to Christakis’ research.
The problem, experts say, is that death is no longer viewed as a natural outcome. Instead, it must be fought at all costs or ignored. Not only has this cultural bias impacted patient care, it also has affected what research is done--and not done.
We don’t know more about dying “because we haven’t looked,” said Dr. Christine Cassel, chairman of the Department of Geriatrics and Adult Development at Mt. Sinai School of Medicine. “The culture of medicine and hospitals is a very strong one, and it is very difficult to get people to look at death as a positive outcome. Those are failures, so why look at them?”
Cassel led an Institute of Medicine committee that spent 1996 assessing what is known about dying and proposing measures to improve American medicine. In a book-length study called “Approaching Death: Improving Care at the End of Life,” the group made seven recommendations, including a call for “more research on the physiological mechanisms and treatment of symptoms common during the end of life.”
Certain ailments are far from mysterious. For about two-thirds of all cancers--particularly malignancies of the lung, colon, brain and pancreas--doctors know what the last few months look like and are pretty good at estimating when death is likely to occur.
By the time solid-tumor cancers have invaded a patient’s body, doctors have no means of preventing or reversing physical problems such as weight loss, extreme fatigue, loss of appetite and anemia.
“The problems are very obvious,” said Dr. Brad Stuart, who wrote guidelines for the National Hospice Organization to help determine the prognosis of people with ailments other than cancer. “You can see them happening. In most cases, within two to three months of death it’s fairly clear that people are going downhill.”
But cancer is only the No. 2 killer, after heart disease. The majority of the other ailments that fell Americans are far more elusive, diseases such as strokes and Alzheimer’s.
A landmark 1995 study surveyed more than 9,000 patients with nine chronic illnesses, including a large number who died of congestive heart failure. The researchers looked at what clinical data said about the patients the day before they died. The median prognosis? One day before death, the patients were given better than a 50-50 chance of living six months.
Most congestive heart failure patients--plagued with a terrible shortness of breath--end up dying suddenly of new heart attacks or arrhythmia, a sudden irregularity in the way the heart beats that is nearly impossible to predict.
“Most of us will die suddenly in the course of chronic disease,” Lynn said. “We may know the disease that will take us, but we don’t know when.”
This lack of clarity about when someone is dying complicates the use of hospice services. The first American hospice opened in 1974 to care for terminally ill patients. Medicare began paying for hospice care in 1983, but only for patients whose doctors concluded that they were expected to live six months or less.
Hospice rules require the dying to give up treatment that will make them live longer in exchange for greater pain control, a team of nurses and physicians available at all hours, spiritual and emotional attention to both patient and family, and the chance, more often than not, to die at home.
But 15% of all hospice patients die within a week of admission, 25% within two weeks, and in general, the length of stay in hospice is shrinking. Some hospice providers are pushing for the six-month requirement to be changed, largely because it is so hard to tell when anyone but a cancer patient has six months to live.
“Six months is a meaningless time for most clinicians,” Cassel said. “Hospice experts will tell you that most people can use six months to a year or longer of total palliative effort.”
The Senate Health, Education, Labor and Pensions Committee heard testimony Wednesday on pain management and improving end-of-life care. At least one other congressional hearing on similar issues is under consideration.
Some tools already exist to help doctors make predictions, such as sophisticated computer models of expected survival. The problem, many experts say, is that they are not in common use. And research efforts are beginning to ramp up to help figure out what the end of life looks like.
The National Institute of Nursing Research announced this year that it will fund a $5-million project to investigate what dying looks like and how to treat end of life symptoms such as nausea and fatigue, pain and shortness of breath.
Dr. June Lunney, the agency’s program director, cautioned that only so much research on dying people should ethically be done, that there’s a “tension between how much we can learn and what’s appropriate to learn.”
“Some people say, ‘You can stick me and poke me to my last breath, because I want science to know.’ Others just want to go home,” Lunney said. “We have to learn when we can learn, but learn how not to intrude when we shouldn’t.”
And, sometimes, knowing more just won’t make that much of a difference. Consider the 88-year-old patient of Dr. Robert Wachter, associate chairman of the department of medicine at UC San Francisco.
The man suffered from chronic kidney failure, was on dialysis and had suffered a recent heart attack. He had undergone cardiac surgery, then developed a bad stomach ulcer and gastrointestinal bleeding. He needed between five and seven units of blood every day.
The legitimate question arose: Should the hospital be spending $3,000 to $5,000 a day to keep this man alive? His daughter was sophisticated, Wachter said, and she brought in articles every day and asked the same questions: Are you sure he’s not going to get better? There’s nothing you can do to stop the bleeding?
The decision to continue the costly blood transfusions “came down purely to a matter of how sure were we about what was going to happen to him,” Wachter recounted. How sure was he? Not very. Eventually, the man stopped bleeding, after being given 30 units of blood. Wachter had no idea why the bleeding stopped. It just did.
“I have to say my thinking about these issues [was reaffirmed] every Christmas, when I got the card with a picture of grandpa sitting at the table, smiling,” said Wachter, who is working on a paper about prognosis.
It would have been nice to be able to say to the elderly man’s worried daughter that in a study of 100 patients like her father, 12% survived, said Wachter. But in instances like that, “I don’t think more research is going to help me.”
(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)
THE THINGS THAT KILL US-THEN AND NOW
1900
1. Influenza and pneumonia
2. Tuberculosis
3. Gastrointestinal disease
4. Heart disease
5. Stroke
6. Kidney disease
7. Accidents
8. Cancer
9. Diseases of early infancy
10. Diphtheria
1997
1. Heart disease
2. Cancer
3. Stroke
4. Chronic obstructive pulmonary disease 5. Accidents
6. Pneumonia and influenza
7. Diabetes
8. Suicide
9. Kidney disease
10. Chronic liver disease and cirrhosis
*
Life Expectancy
Women:
1900: 48.3 years
1996: 79.1 years
Men:
1900: 46.3
1996: 73.1
Source: Centers for Disease Control and Prevention
(BEGIN TEXT OF INFOBOX / INFOGRAPHIC)
How We Die
“New” terminal illnesses such as congestive heart failure and Alzheimer’s disease have become more prominent now that people live longer.
Top Terminal Illnesses by Race
White
1. Heart disease
2. Cancer
3. Stroke
4. Chronic obstructive pulmonary disease
5. Pneumonia and influenza
6. Accidents
7. Diabetes
8. Suicide
9. Alzheimer’s disease
10. Kidney disease
Latino
1. Heart disease
2. Cancer
3. Accidents
4. Stroke
5. Diabetes
6. Homicide
7. Pneumonia and influenza
8. Chronic liver disease and cirrhosis
9. Chronic obstructive pulmonary disease
10. AIDS
Black
1. Heart disease
2. Cancer
3. Stroke
4. Accidents
5. Diabetes
6. Homicide
7. AIDS
8. Pneumonia and influenza
9. Chronic obstructive pulmonary disease
10. Diseases of early infancy
Note: There are insufficient data available on top terminal illnesses for Asians.
Source: Centers for Disease Control and Prevention
*
Life Expectancy
A Grayer Nation
Note: Life expectancy statistics on Asians and Latinos were not available.
Source: Centers for Disease Control and Prevention
