NYT: Dementia Complicates End-of-Life Care for Patients

This is another thought provoking article from The New Old Age blog at The New York Times. When hospice-eligibility hinges on a “six months to live” prognosis, what do you do about adults with advance dementia? Individuals with advanced dementia can live years, but because their prognosis is less certain than, say, someone with heart failure, many are not being enrolled in pain-management care. Learn more about the issue below and share your thoughts in the comments. -SP

End-of-Life Care for Patients With Advanced Dementia
By PAULA SPAN
It’s hard for physicians to determine with much precision how long anyone with a terminal disease can expect to live, but it’s particularly challenging when the disease is advanced dementia.

“People with dementia get sicker inch by inch,” said Lin Simon, director of quality at Gilchrist Hospice in Baltimore, the largest hospice organization in Maryland. “Trying to say, ‘Now, she’s ready for hospice’ is much harder.”

Yet doctors serve as the gateway to hospice, which provides palliative care for the dying and support for their families. Medicare regulations require a physician to certify that a patient entering hospice is likely to die of his or her disease within six months. Doctors are more likely to do so when the disease is cancer or heart failure, which have more predictable trajectories.

That’s the major reason that dementia patients — who can benefit from the better pain control, fewer hospitalizations (so often associated with aggressive treatments that confer no measurable benefit) and greater family satisfaction that hospice has been shown to provide — are under-enrolled in hospice programs.

Read the whole article here at The New Old Age blog at The New York Times website.

NYT: Palliative Care Extends Life, Study Finds

From the New York Times.com

In a study that sheds new light on the effects of end-of-life care, doctors have found that patients with terminal lung cancer who began receiving palliative care immediately upon diagnosis not only were happier, more mobile and in less pain as the end neared — but they also lived nearly three months longer.

The findings, published online Wednesday by The New England Journal of Medicine, confirmed what palliative care specialists had long suspected. The study also, experts said, cast doubt on the decision to strike end-of-life provisions from the health care overhaul passed last year.

“It shows that palliative care is the opposite of all that rhetoric about ‘death panels,’ ” said Dr. Diane E. Meier, director of the Center to Advance Palliative Care at Mount Sinai School of Medicine and co-author of an editorial in the journal accompanying the study. “It’s not about killing Granny; it’s about keeping Granny alive as long as possible — with the best quality of life.”

In the three-year study, 151 patients with fast-growing lung cancer at Massachusetts General, one of the nation’s top hospitals, were randomly assigned to get either oncology treatment alone or oncology treatment with palliative care — pain relief and other measures intended to improve a patient’s quality of life. They were followed until the end of 2009, by which time about 70 percent were dead.

Read the full article here at the New York Times.com

NYT: What Broke My Father’s Heart

When medical technology advances by leaps and bounds almost daily, sometimes grey areas remain in regards to care for loved ones when they can no longer advocate for themselves. Read the whole article here.

By KATY BUTLER

One October afternoon three years ago while I was visiting my parents, my mother made a request I dreaded and longed to fulfill. She had just poured me a cup of Earl Grey from her Japanese iron teapot, shaped like a little pumpkin; outside, two cardinals splashed in the birdbath in the weak Connecticut sunlight. Her white hair was gathered at the nape of her neck, and her voice was low. “Please help me get Jeff’s pacemaker turned off,” she said, using my father’s first name. I nodded, and my heart knocked.

Upstairs, my 85-year-old father, Jeffrey, a retired Wesleyan University professor who suffered from dementia, lay napping in what was once their shared bedroom. Sewn into a hump of skin and muscle below his right clavicle was the pacemaker that helped his heart outlive his brain. The size of a pocket watch, it had kept his heart beating rhythmically for nearly five years. Its battery was expected to last five more.

After tea, I knew, my mother would help him from his narrow bed with its mattress encased in waterproof plastic. She would take him to the toilet, change his diaper and lead him tottering to the couch, where he would sit mutely for hours, pretending to read Joyce Carol Oates, the book falling in his lap as he stared out the window.

I don’t like describing what dementia did to my father — and indirectly to my mother — without telling you first that my parents loved each other, and I loved them. That my mother, Valerie, could stain a deck and sew an evening dress from a photo in Vogue and thought of my father as her best friend. That my father had never given up easily on anything.

Born in South Africa, he lost his left arm in World War II, but built floor-to-ceiling bookcases for our living room; earned a Ph.D. from Oxford; coached rugby; and with my two brothers as crew, sailed his beloved Rhodes 19 on Long Island Sound. When I was a child, he woke me, chortling, with his gloss on a verse from “The Rubaiyat of Omar Khayyam”: “Awake, my little one! Before life’s liquor in its cup be dry!” At bedtime he tucked me in, quoting “Hamlet” : “May flights of angels sing thee to thy rest!”

Now I would look at him and think of Anton Chekhov, who died of tuberculosis in 1904. “Whenever there is someone in a family who has long been ill, and hopelessly ill,” he wrote, “there come painful moments when all timidly, secretly, at the bottom of their hearts long for his death.” A century later, my mother and I had come to long for the machine in my father’s chest to fail.

Read more at The New York Times.

Webinar: Supporting People with Intellectual Disabilities through Illness, Grief and Loss

Registration is now available for HFA’s new webinar program, Supporting People with Intellectual Disabilities through Illness, Grief and Loss with Claire Lavin, PhD and Kenneth J, Doka, PhD. To register, please click here. Register early as limited space is available!

Tuesday, September 15, 2009: 1:00pm – 2:00pm ET
Registration options:
• Individual registration: $25 per registration, 1 CE certificate will be granted
• Organization registration: $75 per registration, unlimited CEs will be available to your viewers
• Bulk registration: Purchase 5 or more registrations and get 10% off the price of individual registrations, 1 CE per registration will be granted (Use this option if you want individuals in your organization to access from their personal computers)
Each registration allows only one computer to access the webinar. More information on the content of the webinar can be found at http://www.hospicefoundation.org/education/webinars/.