On the Way to Hospice, Surprising Hurdles

I’ve often wondered why more families don’t call hospice when a loved one has a terminal disease — and why people who do call wait so long, often until death is just days away.

Even though more than 40 percent of American deaths now involve hospice care, many families still are trying to shoulder the burden on their own rather than turning to a proven source of help and knowledge. I’ve surmised that the reason is families’ or patients’ unwillingness to acknowledge the prospect of death, or physicians’ inability to say the h-word and refer dying patients to hospice care.

But maybe there’s another reason. A study in the journal Health Affairs recently pointed out that hospices themselves may be turning away patients because of certain restrictive enrollment policies. It’s possible, too, that physicians who know of these policies aren’t referring patients whom the doctors fear wouldn’t qualify.

Surprisingly, this randomized national survey of almost 600 hospice programs represents the first broad inquiry into enrollment practices, though it’s been nearly 30 years since hospice became a Medicare benefit.

Nearly 80 percent of hospice programs, the study found, reported having at least one policy that could restrict access. “It represents a barrier to people who want hospice care but can’t receive it,” said lead author Melissa Aldridge Carlson, a geriatrics and palliative care researcher at the Mount Sinai School of Medicine.

What kind of barriers are we talking about? More than 60 percent of hospices won’t accept a patient on chemotherapy, and more than half won’t take someone relying on intravenous nutrition. Many won’t enroll patients receiving palliative radiation or blood transfusions; a few say no to tube feeding.

This made more sense a couple of decades ago, when Medicare developed the regulations requiring patients to forgo curative treatments when they entered hospice. Hospice patients must have a terminal disease, likely to cause death within six months, so such treatments were presumed futile.

But medicine evolves. Now, Dr. Aldridge Carlson pointed out, the distinction between curative and palliative treatments has grown blurry. “It’s increasingly an artificial dichotomy,” she said. “That’s not the reality for most patients today with end-stage disease.”

Chemotherapy, for instance, is often used to shrink tumors that cause pain; radiation can prevent nausea and vomiting for patients with bowel obstructions. Though neither will cure a terminal cancer, as palliative treatments they can improve quality of life. Blood transfusions can help anemic cancer patients feel better, too, at least for a while.

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