When William Hanley of Ligonier, PA learned that his prostate cancer had spread to his bones, and had become incurable, he did a most unusual thing. He lived his life to the utmost for as long as he possibly could.
William was a devil-may-care man who always affixed tractor-trailer horns to his cars, in order to blast anyone foolish enough to cut him off in traffic. Upon hearing the bad news, one of his first acts was to mix a pitcher of gin and tonics. Then he made a plan: He would work with a medical team to get his pain under control. He would spend the summer enjoying a favorite pastime of his younger days – the shooting game of skeet – and he would under no circumstances die in a hospital.
William spent that summer traveling the south and west in skeet competitions. In one meet he won by scoring 25 straight clays, the equivalent of bowling 300 or batting 1.000. Then he went home into the arms of hospice, where he died a champion.
Skeet may not mean much in the grand scheme of things, but it meant a great deal to William – and his story means even more to the people of Pennsylvania. With the Rendell administration’s release of “Improving End-of-Life Experiences for Pennsylvanians,” the state now has a plan for making dignified endings like William’s far less rare http://www.post-gazette.com/pg/07036/759548-85.stm.
The need for this plan is acute. America’s health system was built to respond to the primary causes of death 30 years ago, all of which were sudden events like heart attacks and strokes. But today most people die slowly, of cancer, Alzheimer’s disease and the like. The health system has not evolved to reflect that reality.
The results are threefold: The first is avoidable suffering. People encounter a health care system that does not know how to treat pain, that does not understand how precious every second is to a person whose life is ending, and that is better at intervening with unwelcome technology than it is as listening to the needs patients and families express.
The second result is financial distress. Medical bills have surpassed credit cards as the nation’s leading cause of personal bankruptcy, even among people with health insurance. Meanwhile each year about one-third of the Medicare budget goes to the care of people in their final weeks.
The third outcome, and perhaps the worst one, is that so many people miss the opportunity for a fulfilling final chapter of life. If a person’s pain is under control, and he can take a decent breath, he can attend to all kinds of non-medical priorities: getting his financial affairs in order, mending relationships, expressing and receiving love, perhaps even attaining a measure of spiritual calm.
What would Gov. Ed Rendell’s report do about today’s problems? Give patients a greater voice in their care, through advance directives. Require doctors and nurses to know how to treat the dying. Pay medical professionals fairly for their work with terminally ill people, which takes time to do well. Educate Pennsylvanians about resources to them turn a challenging time into a fulfilling one – palliative care, which assures their comfort while in a hospital, and hospice, which enables those who wish to conclude their lives at home among family.
In all the new report has 160 recommendations, nearly all worthwhile. A growing number of states are showing similar initiative. California required doctors to learn how to treat pain. Oregon sanctioned a doctor who ignored patients’ suffering. New Hampshire, which holds the first presidential primary, is now home to a grassroots group that intends to make every candidate describe what ought to be done to make dying peaceful and pain-free. This is all great news, because we will all walk this road someday.
At the end of William Hanley’s memorial service, there were no mournful tolling bells. Instead his son drove William’s car to the front of the church, and let loose a blast from those infernal truck horns. The congregation laughed.
With 128,000 Pennsylvanians dying every year, constructive ideas to improve life’s last chapter likewise deserve to be trumpeted.

Posted by Stephen P Kiernan at 12:51 PM | Permalink | Comments (0) | TrackBacks (0)

Last week I spoke at a medical school. I do a lot of talking about end-of-life care these days, but I saw this invitation as a special opportunity. After all, only six medical schools in the U.S. require training in end-of-life care. Only two percent of their textbook pages even refer to the fact that patients die. The same is true of nursing books. I typically hammer medical education as inadequate when it comes to giving patients a dignified final chapter. This seemed like an excellent occasion to engage students in the potential that exists now that most people’s lives end slowly.
The lecture hall was brand new, handsome, with audio/video equipment as up to date as any I’d ever seen. Students filed in, a few professors, end-of-life care advocates, several people in long white coats (docs on lunch break, I assume). The dean himself introduced me, an act of either courage or class but welcome either way.
Still, I didn’t hold back. I spent the better part of an hour trying to explain the difference between a patient and a person, how a dying human being is so much more than a set of medical problems that refuse to be solved, how making a person pain-free enables all sorts of potential for mending relationships and spiritual calm. I showed data about how expensive the current approach of high-tech, futile interventions had become. I told stories of people dying well, surrounded by forgiveness and love. I exhorted the students to seek end-of-life care in their training, regardless of what specialty they might pursue, because it would give them a deeper sense of their patients’ humanity.
Truth be told, I laid it on pretty thick. There were comic moments too, though. When I mentioned that President Reagan had signed the hospice benefit into law in 1981, I asked the students how many of them had not been born yet. Quite a few hands went up. I can’t say it made me feel especially young.
I closed the remarks with a study done at the Thomas Jefferson School of Medicine, in which students spent two days with a hospice nurse. Afterward their comments were profound – humble, wiser, appreciative of the predicament dying people and their families find themselves in.
Then I asked if there were any questions. You all know this moment, the few seconds of awkward silence before the real dialogue begins. To me that is often the most rewarding part of the talk.
But this time there were no questions. Maybe the students were afraid to speak in front of their profs. Maybe the docs had to appear cool in front of the students. The silence stretched out. But I did not rush to fill it. I knew people had things to say. It was just taking time to begin.
Then a man at the back raised his hand. He looked to be about 65, had a grey goatee and glasses, and he was sitting on the aisle in the very last row. “I’m just a civilian,” he said, not a medical person, and he made some crack about feeling like a chicken among foxes. Everyone laughed. The dean made a joke in response. Then the man’s face grew serious. “I have something to say to the students.” He held up a copy of Last Rights. “I have read this book twice, and I just have to tell you …”
And then his voice broke, and he began to weep. The room went completely silent. I told him to take his time, to take a breath. He tried to collect himself, but his throat was closed and he only cried harder.
I looked around that handsome lecture hall, and I wondered if tears had ever been shed in there before. Then I realized something: This man’s grief was making my point in ten seconds better than I had in 45 minutes. It didn’t matter why he was crying. It mattered that these students, amid all of their lectures and labs, textbooks and tests, were receiving an undeniable reminder of the humanity that comes to them in times of deep vulnerability.
Medical students, are you listening? Do you hear the lesson in that man’s tears? And practicing physicians and nurses, does he touch your hearts too? Do you remember why you chose this profession all those years ago?

Posted by Stephen P Kiernan at 09:12 AM | Permalink | Comments (0) | TrackBacks (0)

Art Buchwald was a most remarkable man, funny and unique, and his death is a loss to legions of fans. Much as he has been hailed for his courage in the face of mortality, however, his predicament was far from uncommon. The reality is that every day, thousands of Americans watch the end of their lives approaching. They just don’t have nearly as dignified an experience.
In recent years, the manner in which Americans die has changed utterly. The leading causes of death used to be sudden – heart attacks, strokes and accidents topped the list. Between prevention programs, emergency tools like E-911 and portable defibrillators, and enhanced safety of products and workplaces, these sudden causes have fallen dramatically. Now most people die slowly – of Alzheimer’s disease and AIDS, Lou Gehrig’s disease and cancer.
This shift from fast to slow creates an opportunity for people to shape the end of their lives in a way never before possible. In polls, most people say they’d like to spend their final days among loved ones, their pain managed and affairs in order, hopefully with some degree of spiritual calm. That sounds a lot like Art Buchwald, who spent his last months among family and friends. He kept writing, even authoring a new book. He maintained his optimistic, hilarious personality right to the end.
Most people are not so fortunate. They encounter a medical system that exerts life-prolonging technology even when it is clearly futile. They deal with doctors who are experts at everything but listening. They endure untreated pain and needless emotional suffering. They discover that health insurance and Medicare set frightening limits on how much end-of-life care they can receive. They reckon with backbreaking expenses; indeed health care costs are now the nation’s leading cause of personal bankruptcy, even for people with insurance. And they realize to their chagrin that the advance directive they hoped would spare them from unnecessary interventions actually carries no legal weight.
A lucky few find themselves in hospice and palliative care, which focus on comfort and involve the patient’s family in caretaking and decision-making. These people experience a dignified and fulfilling final phase of life. But that’s a rarity. Three-quarters of Americans do not end their lives in such a warm medical embrace.
It will take a revolution among health care consumers, when they decide they have seen enough of their loved ones’ preventable suffering, to make every person’s final months as peaceful and humane as Art Buchwald’s. It will take better end-of-life training for doctors and nurses, as well as reformed insurance and Medicare rules. It may even require expansion of the Patients’ Bill of Rights to include such things as pain control and access to hospice. With these steps the nation will save money even as it improves the quality of care.
Twenty years ago my father was inexplicably seated beside Art Buchwald at a fund-raising dinner. I’d just been admitted to graduate school in writing, and my conservative banker dad told Art he was worried I would never make a decent living. In reply, Art regaled him with story after story from the rich and rewarding life he had led as a writer. The message worked. When I went off to grad school my father was still concerned, but he gave me his blessing. After I published a book last year, Art was kind enough to write me a note saying he’d bet my dad would be proud.
It was an incredibly touching gesture, but that’s not all. His letter also manifested what is possible when a dying person has the twin benefits of a loving family and good medical care. There is time for all kinds of meaningful final actions.
As we now praise Art for how generously and entertainingly he wrote his life’s final chapter, we should also advocate for health care policies that make his achievement as everyday as aspirin.

Posted by Stephen P Kiernan at 10:08 AM | Permalink | Comments (0) | TrackBacks (0)