Home > End of life care, Health care > As life ends, preparing for death will challenge you

As life ends, preparing for death will challenge you

Americans provide billions of dollars’ worth of unpaid caregiving each year, tending to spouses or parents or other loved ones who are dying or seriously ill or just old. Bravo to Philadelphia Inquirer writer Stacey Burling for providing a detailed account of the challenges she faced during the final months of her husband’s life last year.

“Taking care of the dying at home is harder, uglier work than many people can manage, especially with the amount of help that our health-care system provides,” she concludes. This, from a medical reporter, who enjoyed full access to good doctors and hospitals and a pre-hospice program and, ultimately, to hospice care.

I discovered I was unprepared for what had been completely predictable – his death. I knew it would be an emotional ordeal, but the mechanics of it took me by surprise. Even after years of medical reporting, I didn’t understand how people with cancer die or how physically and emotionally demanding it is to take care of them at the end. So I, like millions before me, would learn the hard way during the worst month of my life. We put a lot of effort into helping people live with cancer, but not enough into revealing what it will be like to die of it.

Burling concludes, “I came to wish that I had asked more questions, more insistently, and that the doctors and nurses who worked so hard to keep my husband alive had talked openly – before there was a crisis – about what my role as a caregiver would be like when their work was done.”

Bill Sez: This article provides a timely reminder to hospice advocates (like me) that, even with hospice services, family caregivers are often asked to shoulder a huge caregiving burden. Read the whole piece. And consider, too — should Medicare really be cutting payments to all hospice providers because some of them (for-profit agencies) may be gaming the system?

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