For Whom the Bell Tolls
Jimmy Carter is in hospice care, but is hospice always right for dying patients and grieving families?
Jimmy Carter is in #hospice care. Many of you know this as a time when attempts to defeat disease or prolong life are halted. Instead, palliative care will be offered, that is, treatments to ease pain, which usually will involve opioids or synthetic drugs such as Demerol.
I think it takes bravery to ask for #hospice instead of further medical treatment, to face death with equanimity. He’s being celebrated in the media for choosing hospice, but I’m agnostic on that point. It may be that he exhausted every other option to stay alive, so what else was there for him to do? Nonetheless, he’s led a fuller and more dramatic life than most of ever will, or could, and I don’t really doubt his courage.
I have a bigger problem with celebrating hospice itself, though, at least as it’s often practiced in this country. An early story I did on the subject for The Indianapolis Star noted its roots in in-patient care, literally a place where you go to die in peace and relatively pain-free. However, at the time I’d done my story – 20 years ago – I was already being told that “Hospice is a concept, not a place,” meaning that hospice care would largely be offered in the patient’s own home. On first blush, that sounded all right – wouldn’t you want to be surrounded by loved ones during this final stage in life, supported by people who have relied on you for so long and you on them?
It sounded better than it was, though. After my story ran an adult son of a woman who was currently in hospice care called to complain about her provider, who was merely a nurse “on call” who gave advice over the phone to family caregivers but would only arrive in person for an emergency, whatever that might mean in this context. The man told me his mother was terribly constipated from the high doses of opioids she was taking (this is what will happen) so he called the hospice nurse. Allegedly, the man was told how to insert a suppository into his mother’s rectum, but no nurse would come to the house. He might do that for a young child of his, but he couldn’t see inserting a suppository into his mother’s rectum at that point in her life. It would be an act of lovingkindness, I suppose, but it would not be easy.
Now, with hospice in the news because of Jimmy Carter’s fate, I’ve learned not only that “hospice is a concept, not a place,” but that most hospice services are for-profit businesses. Can it be that profitable? Then I “got it figured,” as the slang expression goes. Hospice as a concept, not a place, exists because it’s a business proposition, one supported both by private investors and government policy.
On yet another story I’d done at The Star, I learned that Medicare will pay for almost anything as long as it’s cheaper than in-hospital care or some alternative, more costly option. It doesn’t have to be cheap, just cheaper, and it doesn’t have to be very good (though minimum standards will have to be met, but even those will be mostly self-reported, not independently verified). It just has to cheaper than expensive alternatives. Medicare reimbursement rates may be low, forcing some businesses to cut corners, but they leave lots of room to make money if your basic expense is office rent and a phone.
An old journalism aphorism goes like this: Don’t “sell” the circus when it comes to town, just report on it. I don’t want to tar and feather an entire industry, but a little better reporting on hospice is warranted. According to a 2018 National Center for Health Statistics study, there were more than 4,700 “hospice care agencies” in the United States at that time, and nearly two-thirds were for-profit entities.
I can’t do a full business analysis of the industry on my own, but another study points out that hospice care is a labor-intensive business that requires relatively little up-front capital investment, with fully 43 percent of revenue dedicated to wages. No car or computer company could survive with such a wage burden, but think about the start-up costs for hospice for a moment. If they’re low, small-time players can more easily get into the game, and they don’t actually pay someone (wages) until they hire someone to perform the service which may already be contracted. It’s not like they have to staff a factory, manufacture the product, then find a way to sell the stuff or risk being stuck with all that inventory.
It is this insight, that it takes relatively little money to start a hospice business and you may not have to pay skilled nursing staff until you actually have jobs lined up for them, which is your revenue stream, that made me stand up and take notice. Obtaining state and federal certifications, including for the all-important Medicare reimbursements, may entail some pain, but otherwise all you need is an office, a telephone, and visiting nurses you may be able to hire by the hour. I don’t think that always leads to the best care.
I don’t want to be too negative or unfair to an entire industry. Many people will receive hospice care in nursing homes. Others may be satisfied with an “on call” model. And Medicare reimbursement rates may discourage a lot of in-person hours. I don’t know what Jimmy Carter’s situation is, but I’d be surprised if he doesn’t have a 24-hour in-person nurse at home with him, either paid by him, his estate or his supporters.
For the rest of us, a time of facing death due to a diagnosis of late-stage terminal illness should not become a time of increased anxiety because of over-hyped hospice care.
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NOTE: Gnawbone is transitioning to a broadly themed mental health newsletter using “critical thinking” to investigate what is fair and true and good in the mental health field (#mentalhealth, broadly understood), but also what falls short. It is not intended for #therapy.
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Before you go, please check out my latest book, “Don’t Go,” a short story collection from The Stephen F. Austin State University Press and available for order at booksellers everywhere or online at the usual sites. 978-1-62288-929-7 Paperback