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.

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

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)