for us to end our days
"Changing the Way We Die: Compassionate End-of-Life Care and the Hospice Movement" isn't a book I would have read on my own I generally stick to fiction and some war history but it was written by two people I have respected for many years.
Fran Smith, whom I first met at the Orange County Register about 25 years ago, and Sheila Himmel, whom I met at the San Jose Mercury News 10 or 15 years ago, are both excellent reporters and writers, and I respect both of them very much.
So I picked up this book expecting it to be well researched and well written, and was right on both counts.
And, it is fascinating.
I am old enough to remember when the idea of hospice care wasn't widely discussed. For many, it seemed like some kind of new-agey, hippie thing. Would candles and incense be involved?
But, that's not the case.
As Smith and Himmel describe in "Changing the Way We Die," hospice takes many different forms, and at its best, it's all about helping the dying person be comfortable and even happy in the final days, months or years.
"When people acknowledge that dying is not 'if' but 'when,' the essential question is: What do you want to do with the rest of your life?" they write in the Introduction.
A fine question for us all, really, whether death seems imminent or not.
But for people who know death is coming sooner than later, it becomes a bigger issue. Do they spend the last bits of their lives in hospitals, surrounded by noise, bright lights and machines, as doctors attempt every last-ditch maneuver to keep them alive, or do they spend the last part of their lives in more comfort, using palliative care to control the pain, perhaps enjoying a nice window view of a garden, and maybe with a loved one holding their hand?
That is over simplifying, to keep this review short. But Himmel and Smith have many examples of such events, in much greater detail. Case in point, Rusty Hammer, who'd been mayor of Campbell, California, when he was 21, and went on to become a successful business executive.
When he turned 50, he started having back pain. A scan found a mass of tumors. He had acute myelogenous leukemia, and only a 20 percent chance of living another five years.
He was a fighter, and of course, doctors are in the business of trying to extend life, so what followed was months of hospitalizations and a barrage of medications and treatments.
"Then came a cascade of complications, from diabetes induced by the steroids he was taking, to pneumonia, to a staph infection from a catheter."
He wanted to continue treatment, "But Pamela [his wife] was worn to the bone, he could see, and he felt responsible. 'My illness was sapping Pamela's life,' he later wrote."
So, he hooked up with Hospice of the Valley.
"With hospice care, Rusty Hammer's symptoms were kept in check. Doctors, nurses, and medicines came to the house. The doctor stayed an hour each time an hour!
"Rusty set up shop in his recliner, with his computer, printer, phone, and side table, friends and family coming and going, talking about politics. His children, Gerald and Jennifer, visited often. The living room became a salon, and he presided over it with the same charm, humor, and intellligence that had gotten him elected to the city council so many years earlier."
His last words were "I love you," to Pamela, and he nodded off.
"For a long time afterward, even as she faced her future and joined a hospice-sponsored bereavement group, Pamela could not help but look back and think about how much suffering Rusty would have avoided had they considered hospice sooner."
This fine book goes into the history of hospice from inns on the European trails to the Holy Land to St. Luke's Home for the Dying Poor in 1893 in London to Saint Rose's Free Home for Incurable Cancer in the 1890s in the slums of Manhattan's Lower East Side, to Cicely Saunders' more modern efforts in Great Britain in the 20th century, to the big business and big politics of hospice in the United States.
Where once hospice was little known, now some 44 percent of American deaths occur with hospice care. About 1.5 million Americans a year die that way.
"Clergy, nurses, social workers, doctors, and true believers drove the early hospice efforts," Smith and Himmel write. "It's likely there was not a marketer or a finance expert among them."
These days, corporations fight over market shares of dying people, although there are still smaller, more local operations across the nation.
"looking back from the twenty-first century when a partisan furor (and nonsense about death panels) erupted over a proposal by President Obama to allow Medicare to reimburse doctors for time they spent simply discussing end-of-life options it is almost impossible to imagine how the hospice benefit made it through Congress. It was the only new health service entitlement created during President Ronald Reagan's first term. It also was the only Medicare benefit crafted not only to improve patient care but also to cut government spending. In the end, advocates convinced lawmakers that hospice care would be cheaper for Medicare than paying for the aggressive treatment that so many patients received up until they died."
Of course, politicians and bureaucrats have often found ways to keep Medicare-funded hospice care from being as effective as it could be. For instance, a patient must be certified by a doctor as likely to only have six months left to live. But hospice care often extends the life and the quality of life for patients, so if the six months passes and the patient is still alive, a re-certification is needed, and over the years, the paperwork for that has gotten much worse.
"In researching this book," Himmel and Smith write, "we observed a doctor spend eight hours over the week a full day, essentially reviewing the charts of patients, reading the notes of the nurses who admitted them, and signing off on forms called Initial Certification of Terminal Illness. Doctors of course should approve hospice admissions, but at least one-quarter of the patients had already died by the time their paperwork reached this physicians' desk."
Well, corporations profiting from death is nothing new, and bureaucracy making smooth roads bumpy is also old news.
Yet, as this book demonstrates, hospice care lives on in a number of ways, from prison hospices to Hospice of Santa Cruz, which has made a point of reaching out to the Spanish-speaking farm workers of nearby Watsonville.
"The hospice system is far from perfect," Smith and Himmel write, "but the hospice philosophy has changed our country for the better. It has given us permission to talk about drying and a language to advocated for the care we want for ourselves and those we love. Hospice has shown that it is never too late to answer the question: What do you want to do with the rest of your life.
"And it is never too early."