Stephen P Kiernan

Living Longer As Well As Better

2007-03-22T15:10:41Z

Do you want to live longer? New research shows a surprising way how: by using hospice.

The current issue of the Journal of Pain and Symptom Management http://www.jpsmjournal.comincludes a study that finds hospice care may extend the lives of people who are terminally ill. The research involved nearly 4,500 cases from 1998 to 2002, patients whose illnesses were among the most common causes of death (congestive heart failure, or cancer of the breast, lung, colon, pancreas or prostate).

For most of the diseases, people in hospice care lived longer. Patients with pancreatic cancer lived three more weeks, and with lung cancer lived 39 more days. The biggest winners were people with heart failure, whose survival was 402 days (compared with 321 days for people not in hospice care).

There are three important things about this information. The first is that attending to people’s non-medical needs (their emotions, their spirituality, the effect of the illness on their families) – all of which hospice does so well – can extend their lives. We all know the potential that can be unlocked in our lives when we are free from worry. We know intuitively that good emotional health supports good physical health. This study shows objectively that it’s true for people who are dying too.

Second, when people are spared the needless interventions, when they avoid the risks of infection and complications associated with high tech medicine, they have more energy for living.

Third, this study refutes the common misconception that involving hospice is akin to giving up. Instead, engaging the patient-oriented disciplines of hospice enables people to survive longer. They’re less worried about burdening their families. They receive interdisciplinary treatment that attends to their comfort and personalizes their care.

These few gained weeks are beyond precious. As the end of life approaches, every moment increases in value – each meal, each conversation, each opportunity to resolve conflicts or fulfill wishes or express love. Hospice already has legions of fans for making these deeds possible.

The full study is available at the website of the National Hospice and Palliative Care Organization http://www.nhpco.org/14a/pages/Index.cfm?pageID=5145. It’s worth a read. Now we know that people in hospice both live better and live longer.

Pennsylvania makes progress

2007-02-15T17:51:15Z

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.

A Lesson from the Audience

2007-02-07T14:12:17Z

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?

Art Buchwald's lesson

2007-02-02T15:08:47Z

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.

Two examples of a loving finish

2006-12-04T14:52:43Z

Ed Bradley and Steve Arnold died of the same thing on the same day. Their experiences also reflect similar changes in how life ends now, and the new opportunities for a meaningful final chapter.

Ed was the award-winning “60 Minutes” correspondent who launched his career covering the Vietnam War. Steve lived just down the road from me, and had been my sons’ wrestling coach. Ed had leukemia, which he’d kept private until shortly before succumbing to a related infection. It’s hard to keep a secret in a small Vermont town, so everyone around here knew that Steve had leukemia. His life ended when his heart stopped, after a long struggle and even a year or so when we all thought he’d beaten the disease.

Entirely different communities of people grieve these losses, yet they have something important in common. Both Ed and Steve had a chance to visit with friends and family in their last days. Both died in the embrace of loved ones. We should all be so lucky, when our time comes.

That sentiment can be more than a dream, however. Until a few years ago, most people died suddenly – of heart attacks, strokes and accidents. Society mobilized to combat those causes of mortality, with amazing success. Now most people die slowly, of things like Alzheimer’s disease, Parkinson’s, organ failure, AIDS, and of course, cancer.

Slow dying can be a terrifying prospect, forcing patients and families to look mortality in the eye. But it can also offer incredible opportunities, enabling people to settle their affairs, mend relationships and work toward a spiritual peace. It makes possible the potential for ending life in an atmosphere not of medical panic but of loving calm.

Ed and Steve both achieved those ends to some degree, which must have eased their passing and been a comfort to their families and friends.

Steve’s family prepared a slide show for his wake and funeral, shots ranging from early childhood to recent adventures, and the last photo is of him standing in a river, soaking wet, smiling, his arms spread wide as if to embrace all that life has to offer. I’m glad to have that image of him in my mind for all time. I’m glad, too, for the example he and his family provided for facing life’s end with such courage. What better way to leave this world than in the warm embrace of love?

who should decide?

2006-10-11T16:58:18Z

It is astonishing that the period of time after which a person’s heart stops often receives more attention than countless more important moments leading up to that instant of stillness. Yet it happens again in an article in this week’s Science Times. “The Last Word on the Last Breath” http://www.nytimes.com/2006/10/10/health/10dnr.html attempts to shed light on whether or not doctors should try to restart a stopped heart. Instead it repeats the mistaken view that this decision belongs with MDs rather than patients. It also places the focus in the wrong place – away from what to do while a person is still alive.
The article’s first mistake is in the headline. The last breath, for a person whose heart has stopped, has already come and gone. The question is whether restarting a person’s heart at that point is compassionate or abusive. It’s not an abstract concern: CPR, which has some efficacy when performed on an otherwise healthy person experiencing a heart attack, is minimally effective when performed on a terminally ill person whose heartbeat is completely arrested.
The article frames the dilemma as a power struggle. Who decides whether CPR is welcome or wanted – the doctor, the patient, the patient’s family? State laws conflict, the article says, but actually the answer ought to be plain. The life belongs to the patient, no one else. Of course concerns arise when the patient’s views are not clearly known, but that raises the real underlying issue: A person dying slowly has many opportunities to weigh the options, to become informed, and to express his or her wishes in documents that guide doctors and protect families from having to make wrenching choices in a moment of crisis.
If you tell a dying cancer patient that he will receive all appropriate care while he is alive, he may thank you. If you tell him that he can choose to receive CPR if his heart stops – which may break his ribs, require forced intubation, lead to countless needle jabs into his groin in order to obtain blood diagnostic information from vessels gone flaccid from the absence of blood pressure – he will say no thank you. He’ll especially make that choice if you inform him that CPR (unlike TV shows where it succeeds 67 percent of the time) enables hospital patients to recover as little as two percent of the time, with half restored only to a vegetative state.
The Times story leaves a clear impression that doctors are best equipped to make CPR decisions. At least that is an improvement over the end-of-life care report from the President’s Commission on Bioethics http://www.bioethics.gov/topics/end_of_life_index.html which felt judges ought to make these calls (a la Terri Schiavo). Nonetheless, doctors’ role should be circumscribed. As the experts, both in care and in assessing a person’s prognosis, doctors have a responsibility to raise the difficult issues – in advance, when the patient can competently consider. Doctors need to educate patients on the difference between caring for a living person and trying to revive a dead one. They need to teach patients what the CPR recovery rate actually is. And then they need to follow orders.
By the way, it wouldn’t hurt if states enacted laws protecting doctors from lawsuits for following a patient’s wishes over family members’ protests. By the way, too, there are countless caregiving opportunities that arise before the patient’s heart stops. If families and doctors set their sights on maximizing the quality of those moments, they might do a better job of accepting the inevitable when it finally arrives.

Taking the Issues to Congress

2006-09-06T16:36:49Z

When they heard that the Schiavo family is continuing its battle over end-of-life care, many people may have spontaneously groaned. After all, last year the nation recoiled from the husband vs. parents war over whether to remove the feeding tube sustaining poor Terri Schiavo. Congress compounded the disgust by using the family’s tragedy in the culture wars. Now that Terri’s husband has formed a political action committee, and her parents and surviving siblings created a foundation, plenty of people might wish to cry, “Enough.”

But there is another way to view these developments. It is possible that the family’s continued engagement provides constructive energy. At the least, the struggle for better end-of-life care has at last become a campaign issue. If this debate lands in Congress, that is potentially good news for every living American.

A quick history: Terri was a vegetable, wholly dependent on a feeding tube to survive. After more than a decade, her husband Michael wished to remove the tube and let her die. He said Terri never wanted to be kept alive by such means. Her parents objected, saying she recognized them and responded to stimuli. They also prayed for a miracle. The dispute went to court. Outsiders objected, but when two parties cannot agree in America, a courtroom is where they belong. The courts in Florida, where Terri lived, were remarkably consistent. From the celebrated cases of Nancy Cruzan and Karen Ann Quinlan to lesser known disputes, there were ample precedents to draw upon. In each venue, judges found that a husband would be more likely to know a grown woman’s medical desires than her parents would.

That is when Congress intervened. For the first time in the nation’s history, the House and Senate convened in a special session concerning a single individual. The bill that passed on Easter weekend 2005, which President Bush signed into law that Sunday evening, brought the case before federal courts. But of course those judges were also versed in the existing case law; they sided with Michael Schiavo in every instance. The U.S. Supreme Court, when approached to hear an appeal, did not even deign to take up the case. There was no nuance to be parsed; the law is clear. In all, the courts were informed where Congress was ignorant.

Medical workers removed the tube, and Terri died days later. An autopsy found her brain utterly atrophied. Both her husband and her parents deserve condolences and sympathy.

Of course, the need for better end-of-life care did not die with Terri. For people who are terminally ill, overly aggressive clinical interventions, bankruptcy from medical expenses, and unnecessary suffering remain commonplace.

Now, the New York Times reports, Michael Schiavo has formed a political action committee (www.nytimes.com/2006/08/16/washington/16schiavo.html). The PAC has raised $26,000 without making solicitations, contributing most of the money to Democrats running in Florida, Colorado and Texas. “Politicians in Washington, D.C. and Florida abused their public trust by forcing the government in the middle of my family tragedy,” Michael says on the PAC’s web site (www.terripac.com).

Meanwhile Terri’s other family members raised far more money, establishing a foundation (www.terrisfight.org) to guard “the rights of disabled, elderly and vulnerable citizens against care rationing, euthanasia and medical killing.”

From their promotional materials at least, both sides are right: Congress did inject itself inappropriately, and people in vulnerable medical conditions do need better help.

About 6,300 people die in this country every day. Around 3,000 of those lives end in hospitals – where pain is routinely under-treated, where unconcern with the patient’s emotional condition and disregard for the patient’s family are the norm, where advance directives are often ignored, and where most lives end following the withdrawal of excessive and futile medical technology. About 2,000 more lives end each day in nursing homes, where again untreated pain is common, where boredom is fact of life, where food is substandard and care insufficient, and where too many residents are subject to neglect or abuse.

Hospice and palliative care offer ideal antidotes for these woes, and provide fulfilling completion to about 1,200 people every day. But these programs are underfunded, hard to gain access to, and not available to everyone who could use them. It will take a consumer-driven uprising – something like 100,000 Schiavo survivors – to make these remedies as ordinary as they ought to be, as everyday as aspirin.

Yet this level of change is possible. Once upon a time, penicillin was miraculous. Once upon a time, smallpox was a major cause of mortality. Improving end-of-life care does not require inventing new drugs or building new hospitals. All it takes is an engaged public.

Imagine if Americans demanded dignified and compassionate end-of-life care from their doctors and hospitals. Imagine if they treated care of people in their lives’ penultimate moments as a serious and substantive campaign issue. Imagine if Congress, instead of passing a bill to exacerbate one family’s suffering, met to expand the existing patients’ bill of rights – adding decent pain management and guaranteed access to hospice. Imagine if President Bush, instead of signing the Schiavo bill with a flourish, stood before the cameras and inked his own living will – thereby leading the nation in embracing this important tool for maintaining control at the end of life.

The decisions by people who loved Terri to participate in the political process is merely an exercise of citizen engagement, a fundament of democracy. However, both sides’ involvement also makes another important point: End-of-life care in America will only improve when the public demands it.