Since 1983, the Medicare hospice benefit has afforded millions of Americans the opportunity to have end-of-life care provided to them at home, surrounded by their loved ones. The explosive growth in the number of hospice providers over the past several decades can be explained by this government payout, as well as by a surprising lack of industry oversight otherwise uncommon in the U.S. healthcare system. For most of us, the process of choosing a hospice usually gets pushed to the last possible moment, when both patient and family are stressed by illness, finances and the mechanics of caregiving. It isn’t surprising, then, that we delay thinking about which hospice to utilize until we aren’t in the proper frame of mind to make an informed decision on our own. What is surprising is how critical this decision can be.
There is no ranking system for hospices, no Yelp or TripAdvisor for people to discuss their experiences. Individual hospices occasionally have websites but rarely publish reviews. This not only speaks to the difficulty of comparing available organizations, it also reflects the lack of published quality measures. And because the dead rarely bring lawsuits, negligent care often goes unreported. Word of mouth recommendations are often all we have to rely upon.
My own experiences attest to the pronounced changes in the hospice industry over the past two decades. I am an anesthesiologist who has attended the deaths of three family members in hospice over the past seventeen years. My clinical skills proved valuable in this setting.
In 1998, my father died from lung cancer. He passed at home, surrounded by family, which was exactly what he wanted and had planned for. We worked with a nonprofit hospice organization through the local hospital where he had received his cancer care. We dealt with one hospice nurse and the experience was positive, given the circumstances.
Twelve years later, when my mother died from dementia, she was also at home and surrounded by loved ones. But there the similarities ended. We dealt with more than a dozen nurses from a for-profit, non-accredited hospice. They provided the stuff she needed. There was little actual “care.” The best I can say is that they didn’t interfere … much.
Then, in October 2015, I spent three days with my brother-in-law as he died from prostate cancer. Larry asked me to make him comfortable, as I had my parents. With just two options in their area, Larry and my sister had chosen one of the largest hospice care providers in the country, a publicly traded company. If you don’t think this makes a difference, spend some time looking up whistle-blower lawsuits and U.S. Department of Justice investigations brought against for-profit hospice chains.
Larry’s final days were very challenging. He had terrible pain, difficulty breathing and swallowing, and significant anxiety. He couldn’t lie down or sleep. Tailoring a medication regimen for him required creativity. The company provided the drugs I asked for, though not in the correct dosages. And then they made it nearly impossible to administer the medications effectively.
The mission of hospice, which is to ease the pain and suffering of the dying and allow them to pass at home, with loved ones nearby, is not aligned with securitization or the rights of stockholders. It just isn’t.
I don’t know exactly what we owe patients or parents or family members, but I believe the healthcare system owes every American this: the right to die at home, as comfortably as possible. It’s what I would want. This doesn’t mean someone has to profit. That does not have to be the American way. Not every industry is better when it is profit-driven.
The Washington Post created a Consumer Guide to Hospice in December 2014. Most states publish an online guide to hospices. You can choose among organizations to find one that is voluntarily accredited, well-established and preferably nonprofit. Just knowing what is available is the best way to get started. Many hospice organizations are excellent, but it takes some research to figure out which ones they might be, so that when your loved ones need hospice care, they get the care you would want.
Margaret Overton recently published a memoir about end-of-life care called Hope For a Cool Pillow.