Dying in America is more frightening and often more terrible than it ought to be, and those who know say it’s the fault of doctors.
So increasingly, medical and mental health societies, hospice-care organizations and in-patient advocacy groups are flagging attention to current problems with “end of life care,” as it’s called.
These engineers of change are attempting to coax physicians and the public to revise their thinking and radically alter the American way of death.
The American Medical Association fosters the effort.
With support from the Robert Wood Johnson Foundation, the AMA is offering physicians special end-of-life-care training. Course offerings deal with such topics as “advance care planning,” “communicating bad news,” “pain management” and “last hours of living.”
Also, New York’s Open Society Institute is funding an educational program called the Project on Death in America. The initiative enlists nurses, social workers, teachers, economists, artists and other nonprofit organizations in the attempt to “understand and transform the culture and experience of dying and bereavement” in the United States.
A recent Journal of the American Medical Association article indicates why these efforts are being made. Dr. Daniel R. Tobin and psychologist Dale G. Larson write, “Patients are dying after prolonged hospitalization or intensive care, often in unrelieved pain.”
The authors note that patients’ preferences for medical care “are not adequately discussed, documented, or adhered to” and “referrals to hospice and home care, which could address these shortcomings, occur late or not at all.”
Dr. Tobin is a surgeon turned palliative care physician, meaning he specializes in using medicines and medical technology to reduce the pain of illnesses that cannot be cured. He serves on the staff of the Veterans Administration Hospital in Albany, New York.
Mr. Larson chairs the Department of Counseling Psychology at California’s Santa Clara University.
Like others, the two are calling for doctors, nurses and others on the medical teams to get added training in end-of-life care. They want physicians to learn communications skills. They want “end-of-life conversations” with patients to become “a routine part of health care delivery” and they want the talks to occur earlier rather than later in a patient’s terminal illness.
Importantly, the pair are pushing for creation of a new kind of medical specialist trained extensively in treating the dying. Such specialists would lead interdisciplinary teams able to meet the varied needs of dying patients and their families.
In an interview, Mr. Larson stresses the need for such change, saying, “The problem [dying patients face] is enormous … bad things are happening.”
Among those bad things is what occurs when even aged patients with killer ailments move into crisis and verge on death.
In “Peaceful Dying,” a guide to end-of-life care that he wrote, Dr. Tobin provides an illustration. He recalls the last days of a hospitalized, fearful, 88-year old man, “dying of multiple diseases, all very advanced.” The man actually said he wanted “no more tests” and pleaded to return to the nursing home where he lived.
Yet: “For six days, doctors performed various tests. The gastroenterologist passed tubes up and down both ends to search for tumors. The respiratory specialists were taking blood gases an extremely painful blood test in which the blood is taken from arteries in the wrists. The primary care doctors ordered daily blood tests to determine medication changes.
“Finally, [the patient’s] heart gave out. A full-scale code blue… . The senior staff [pumped] stimulants into his veins, then [placed] a large intravenous catheter into his neck. An eager and strong young doctor … placed his hands on the old man’s chest, and began vigorously pumping his entire upper body … his ribs cracked… . A breathing mask with a hand pump forced air into [the patient’s] lungs. Then … a ventilator was rushed into the room, and someone threaded a breathing tube into his mouth and down his windpipe… . Electrical paddles were placed on his chest … his body [jumped] off the bed with each application of the electrical paddles.”
After 10 minutes, the team determined the man had died during the process.
Then, Dr. Tobin continues, “Respiratory therapists, five doctors, three nurses and three medical students all looked down at the floor, dejected. They had failed in the one thing their training had told them mattered they had not prevented death.”
The final week of that old man’s life might have been different if his wishes had been honored and appropriate arrangements made.
He might have gone home. There, he could have been medicated to relieve pain.
At his nursing home, skilled palliative care practitioners could have relieved or soothed the nausea, fatigue, lack of appetite, shortness of breath, swallowing difficulty, and other comparatively small torments that tend to occur during the weeks, months or more that it can take for the body to finally shut down.
The old man might have had highly skilled counseling to help him eradicate the dread and depression that initially descends on patients who realize their end is near. And instead of enduring the frantic and brutal code blue, he could have spent his final minutes tranquilly, being reassured by friends or spiritual advisers.
There is overwhelming evidence that most people want a serene, pain-free death. That’s evidenced by the legalization of physician-assisted suicide in Oregon and by the Gallup Organization’s findings in a series of national polls in the past three years. The surveys reveal that between 57 percent and 61 percent of Americans favor physician-assisted suicide under certain conditions.
Then too, many people buy the hospice philosophy that yielding to the inevitability of death and calmly accepting it is healthy. They believe that palliative care can take the sting from death.
It certainly would be reassuring to believe Dr. Tobin’s contention that, “the living that you do throughout your dying can be, if you let it, some of the most meaningful and joyful living you’ve ever experienced.”
But not everyone knows about or has faith in palliative care. And Dr. Tobin’s observations defy current mainstream thinking.
Indeed, a report by the National Academy of Sciences’ Institute of Medicine notes, the “lack of consensus [on the desirability of palliative care] is evident when patients or families demand treatments that practitioners see as useless, counterproductive, or even inhumane… . Freud may have been right that ‘our unconscious does not believe in its own death; it behaves as if immortal.’ “
Yet in the late 19th and early 20th century when Freud lived, the average person knew much more about death than Americans do today. It was common then for people to breathe their last at home. Children saw grandparents, parents and siblings die.
To an extent, researchers say, the resulting familiarity diminished the fear of death, which was considered inescapable.
But life-sustaining machines arrived, doctors found ways to prolong life and researchers increasingly promised and produced cures never dreamed possible. Death increasingly occurred behind screens in hospitals. Life’s ending became for most Americans a mysterious, remote, unseen and dreadful phenomenon.
Before, when practically nothing could be done to avert the end of life, acceptance was the one logical option. Clearly that’s not so today.
It’s also clear that today patients don’t want to give up hope that they can be cured or that they can at least escape imminent death. And doctors often don’t want them to.
Moreover, the health insurance system generally pays for the expensive, desperate efforts to prolong life. That tends to bolster the common practice of whisking dying patients to the hospital, where they eventually expire while physicians are striving to save them.
In fact, just 20 percent of those who might opt for palliative end-of-life care do so. That’s so although Medicare and most private health insurers also cover such care and although it is the policy of government and of most health insurers to encourage its acceptance.
After all, palliative care actually is cheaper. And cost is an increasingly important factor because the aged population is expanding along with the number of persons dying in hospitals.
Put crassly, it’s getting too expensive to keep snatching people from the brink of death.
As Mr. Larson and Dr. Tobin see it, the chief reason that people don’t chose palliative care is that most doctors shy away from giving patients with terminal ailments the facts about their illnesses. Doctors don’t arm patients with information that lets them make intelligent choices about their fate, and don’t explain the possibility of palliative care. Even when they try to be caring and compasionate, they sometimes lack the skill to do so effectively.
Psychologist Bruce Ambuel, a professor of family and community medicine at Milwaukee’s Medical College of Wisconsin, agrees.
“It’s hard for doctors to say the D-word ‘Death.’ It’s hard for them to start discussions about it. So although doctors are in a unique position and have the background to make predictions about the outcome of treatment and have a special relationship with patients, they don’t discuss the coming death.”
Then, says Dr. Karen Ogle, when it’s clear death is coming, doctors “divorce themselves from the patient.”
There are reasons for this.
Dr. Ogle points out that many believe doctors become doctors precisely because they “have trouble with death.”
Dr. Tobin and Mr. Larson state in their article that physicians avoid end-of-life conversations because they essentially view death as an enemy to be defeated. Besides, they fear causing emotional pain and anticipate there will be disagreement with the patient or family members.
Also, many doctors lack understanding of local laws governing what’s called “advance directives,” the written orders about future medical care that are stated in living wills and health care proxies. They tend to believe incorrectly that referring a patient to hospice care requires them to give up control of that person’s care.
Additionally, while there is some insurance reimbursement available to physicians as compensation for time spent consulting with terminally ill patients, it is not considered sufficient or sufficiently available.
Beyond that, patients can make it tough on doctors.
In a publication for family physicians, Dr. Ogle writes of a 57-year-old farmer “with end-stage cancer,” who repeatedly visited his doctor because of severe pain and weakness. The article faulted the doctor’s handling of the patient, noting why his effort failed and explaining what was needed to effect a much better outcome.
But as it was, although “seething with anger” at his condition, the farmer vehemently denied he had cancer. The doctor tried to tell his patient about the finality of his situation, and offered referral to a hospice program for palliative care. But the patient refused. Repeatedly.
Finally the doctor bluntly said, “It’s the cancer … it’s killing you … please let your wife say good-bye to you.” The man told his wife, “This is nonsense.”
When the farmer died at home shortly after, his uncomprehending, unprepared wife called 911, screaming for the medics to “do something.”
The dismayed doctor reported he had simply “run out of tools” to help the patient and his family understand and deal with the inevitable. Which, of course, is exactly the point of Dr. Tobin, Mr. Larson and other end-of-life reformers.