October 29, 2013

Our Last, Dying Days: How Will We Spend Them?

The New York Times' excellent blog The New Old Age featured a review yesterday of a new memoir that offers “yet another lesson in the barely noticed ways sick old people slide onto the conveyor belt of contemporary medicine, even if . . . they have always said they don’t want aggressive treatment.”

The book is The Fifth Season: A Daughter-in-Law’s Memoir of Caregiving. Author Lisa Ohlen Harris shared a household with her mother-in-law Jeanne for seven years. When Jeanne’s health deteriorated from COPD, Harris became one of 65 million American family caregivers.

Harris helped Jeanne file an advance directive declining extraordinary measures to preserve life. As they navigated the healthcare system during Jeanne’s final months, however, the two women realized that Jeanne's "final exit" wasn't playing out as she had specified in the written document.

The Fifth Season tells a story I’ve heard too often: how the evasiveness of doctors, the hopefulness of patients, and the reluctance of families to let their loved ones go all swirl into a tragic perfect storm, exposing sick, frail people to continuing and futile procedures they never wanted.

Jeanne got scans, infusions, drugs, a port. Her daughter-in-law received incorrect information about hospice eligibility. Then she saw the doctor’s notes about Jeanne’s poor prognosis.
I finally realized that the experts, all these specialists, the ones who are supposed to be the educators of their patients, have been looking at Jeanne and seeing a dying woman. But they kept sending us all over Fort Worth on wild goose chases, despite the mass of physical ailments signaling that Jeanne is at the end of her life. Why the hell didn’t anyone speak up?
Jeanne finally died after 31 days in home hospice care. But she and her family should have received that simple support much sooner. Those "wild goose chases" only made Jeanne's last days much more difficult, and created needless expense.

Another Familiar Story
I’ve heard many stories like Jeanne's, but the one I remember best came from my pal Hugh Yarrington.

Hugh’s father had been in good health into his 80s. Then he developed a serious heart ailment and died two years later. It was clear from the beginning that he would not recover.

Hugh's father spent most of those last two years in hospitals, undergoing expensive and uncomfortable treatments. Only in his final few months was he allowed to spend quiet, peaceful time with his family in hospice.

Executor of his father’s estate, Hugh tallied up the medical bills: nearly $1 million, 90% from those final two years. Hugh had worked for several years in the Netherlands where, he said, a case like his father’s would have been reviewed by a group of doctors (call them a “death panel” if you want) who'd determine the best course of treatment. Hugh was sure they would have chosen hospice care from the start, avoiding cost and the terrible distress of aggressive treatment.

Hugh later described his feelings to me in an email:
You brought us together there last week, too, when you wrote "The Best Way to Die." I loved that piece, and it brought back lots of memories -- wonderful and horrible -- of my father's last days ten years ago. Most of us want simple, painless, dignified deaths at home or in hospice (thank God, my Dad's last days in hospice were -- oddly -- pretty happy for him and for us). Tragically – in a way that is fiscally unconscionable, as well as contrary to our most earnest (and usually unexpressed) wishes – we will instead die in hospitals, plugged into machines that aren’t helping us. All the while, the meter is RUNNING. It makes me crazy!
Me too!

Tomorrow, I’ll discuss an interesting new approach that brings more sanity to end-of-life treatment.

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