IT DOESN'T HAVE TO BE THIS HARD by Stephen Kiernan, author of Last Rights
William Hanley was a dapper man with a devil-may-care attitude toward life. His children said he was like Jay Gatsby, but without all the money. Still, he always customized his cars by adding the largest air horns he could find, the giant ones made for tractor trailers. All around Ligonier, Pa., people recognized the blast of his car horns. And heaven have mercy on anyone who cut William off in traffic.
Then he was diagnosed with prostate cancer. Despite surgery and chemotherapy, the disease spread. Eventually William’s doctors told him they could do on more; he was irrevocably dying. William did an unusual thing. When his family gathered to say goodbye, he announced that he was not ready to go quite yet. As a young man he had flirted with – but never attained – a national championship in skeet shooting. Now William had turned 70, putting him in a new age category. He wanted to try for the title again.
He worked with his medical team to find pain control that did not dull his quickness during events. He won a local shoot in Pennsylvania, then a regional contest in Virginia, then competed down the east coast before turning west as far as Arizona. In his final meet he shot 25 straight clays, the equivalent of bowling 300 or batting 1.000.
William went home a champion, into the arms of hospice. He took to bed, but still lowered the pain medicine every afternoon so he could entertain friends. He died at home with loved ones at his side. After his funeral, there were no mournful tolling bells. Instead his son drove William’s car to the front of the church, and gave a long blast on those infernal horns.
The humor in that moment signifies a profound shift in American health care. The good news is that today people’s ability to fulfill last wishes has never been greater. The bad news is that too few people capitalize on this opportunity.
Thirty years ago, most Americans died suddenly – of heart attacks, strokes and accidents. Society mobilized at virtually every level.
The first step was bringing medical care to the patient. There are now 900,000 EMTS rolling in 55,000 ambulances, dispatched by the multibillion dollar E-9-1-1 phone service. Defibrillators once required 220-volt power and skilled technicians to operate them. Now they’re the size of a laptop computer, and can be found in executive suites, health clubs and bus stops in Disney World.
The second step was to achieve medical advances. From early screenings and preventive medicines, to the two million stents placed in Americans’ blood vessels last year, medical science led the charge against sudden death.
Third, the public joined the fray. People spent a Saturday learning CPR. They pushed Washington to create new agencies like the Consumer Product Safety Commission. Nobody welcomes a visit from OSHA, until they hear that in the 1990s workplace fatalities dropped 13 percent.
The amazing thing about this threefold effort is that it worked. In 1907 the average American lived to be 47. Today he lives to be 78, and she lives to be 82. With two-thirds of this gain achieved since 1960, the rate at which Americans’ lives are extending is accelerating.
Unfortunately, everyone is still mortal. Today, though, people do not drop dead in an instant. They succumb by degrees, over months or even years. Deaths from respiratory disease have increased 77 percent since 1980. Some 24 million Americans now have Alzheimer’s disease, their illness lasting an average of eight years. AIDS, unheard of 30 years ago, remains a leading killer of young adults. The worst is cancer, taking 550,000 Americans’ lives annually.
Statistics aside, most people know these trends from personal experience. They have watched loved ones reckon with chronic illness day upon week upon month. They have seen, too, that the medical system that is so incredibly expert remains unskilled at listening.
That flaw is a major problem, for this reason: Poll after poll has found that if people are not going to die quickly, they have strong preferences for how they want to spend their life’s last chapter: pain free, able to get a decent breath, at home, among loved ones, affairs in order, problem relationships resolved, modest last wishes fulfilled, and some measure of spiritual calm attained. Two things are important about that list. One, only the first two items are medical. The others are distinctly non-medical. But it’s difficult to repair a troubled relationship if you are in pain. It’s harder to prepare spiritually if you are struggling for breath. The medical care must be effective if people are to achieve their non-medical goals.
The second thing is that the health system has virtually ignored these poll findings. About half of Americans die in hospitals – where 48 percent suffer untreated pain. Excessive interventions and the intensive care approach prolong patients’ suffering, prevent families from caretaking, and gouge the finances of both families and the Medicare system. Another 30 percent of Americans die in nursing homes. One eighth of them are in restraints that have nothing to do with their medical condition, 30 percent of homes have too few medical personnel, and in one-third of homes, patients experience physical, verbal or sexual abuse.
There is a better way. It is called hospice. Developed in Great Britain in the 1960s, hospice cares for patients at home and makes comfort the top priority. The clinical plan also addresses non-medical needs. Families both receive care and are part of the care-giving team. Only two percent of hospice patients experience under-treated pain, while 99 percent of families afterward say the care was satisfactory or excellent.
The hospice philosophy can be found in some hospitals too, through a clinical program known as palliative care. The key difference between the two, other than where care is provided, is that palliative care may occur while patients still seek a cure, whereas hospice is designed for people who are never going to get better. Otherwise, similar principles remain: comfort is a top priority, while emotional, familial and spiritual needs are paramount.
Why don’t more people receive hospice and palliative care? Medical education ignores end-of-life issues. Hospitals depend on high intensive care revenues, so only one-fifth of them offer palliative care. Federal policy precludes people entering hospice care when they still might attain a cure. Doctors under-treat pain for fear of prosecution for drug crimes. When it comes to the delicate and time consuming task of helping people prepare for future medical decisions, doctors are woefully underpaid.
More than anything else, though, the medical system has not shifted because consumers have not demanded it. Unlike the outcry over dialysis access in the 1970s, or the backlash against HMOs’ “drive-by deliveries” in the 1990s, the American public has not yet pressed health insurers, hospitals, doctors and the government to make the end-of-life as calm and pain free as it can be. Yet attaining that goal, compared with challenges like mapping the human genome or heart transplants, is far less costly and complex.
What America needs is a mobilization across society, just like the one against sudden causes of death, to make certain that people entering the most vulnerable days in their lives receive the greatest support and comfort in their lives. Like William Hanley’s great car horns, we need to trumpet the opportunity that now exists for people to conclude their days in an atmosphere of family love, fulfillment and peace.
