Jim’s Notebook: Breaking Bad, Hospice Care and Living the Way We Want To

I am rarin’ to go on a new week. I get chronic insomnia sometimes, and last week went a couple nights without sleeping. So I was dragging by the end of the week. But now I feel mostly recovered, so tally-ho, sally forth, huzzah! And what not.

I read an interesting post on LinkedIn this morning that related public perceptions of hospice care to Walter White, the protagonist of the AMC crime drama Breaking Bad. For those who don’t remember, Breaking Bad was a television show about a high school science teacher who starts a meth lab in order to make quick money to leave for his family after he is diagnosed with terminal cancer. As end-of-life care choices go, this isn’t a good one – but it did make for decent TV.

The piece I read was by David Howlett, director of marketing for the home health and hospice provider VNS Health. In it, Howlett makes the point that a character like Walter White wouldn’t choose hospice because of a “warrior mentality” that’s pervasive in our culture.

“For decades, health care systems have leaned on the ‘warrior’ narrative,” Howlett wrote. “It’s an empowering tool during curative treatment, but it becomes a massive hurdle during the transition to comfort care. If for years, someone has been encouraged to ‘never give up,’ hospice doesn’t feel like a service. It feels like a brand failure.”

I think that’s a valid point. You can hear it in the language we use. We often speak about “battles” against cancer or other diseases … Other bellicose language is also used commonly to convey that serious illness is a fight, a war to win or lose. And that is not entirely untrue. Very sick people are locked in combat against a host of debilitating symptoms and, ultimately in many cases, an eventual decline.

Photo credit: ha11ok

This mentality lies deeper than a lack of education about the nature of hospice, according to Howlett. It ties into something more primal.

“If we want to improve the patient experience, we have to stop treating hospice resistance as an educational gap,” he wrote. “It is a loss aversion problem. In behavioral economics, the pain of losing something (in this case, the identity of a ‘fighter’) is twice as powerful as the joy of gaining something (comfort and peace).”

Of course, patients on hospice tend to live longer than others, according to a substantial body of research. Here’s one study on this from the Journal of Symptom Management. But most people don’t know that, so this is generally not included in the public discourse about the end of life. People don’t think about hospice this way: That when you are getting good care, you can stabilize and persist.

But what concerns me, and Howlett, is framing terminal illness as “losing.” Of course, hospice patients and their families are facing a loss. But, as the warrior mentality may imply, they are not “losers,” and accepting hospice care isn’t a defeat. Hospice election is not a defeat, but a choice to strive for a better quality of life rather than a longer life.

As Jimi Hendrix said: “I’m the one that’s got to die when it’s time for me to die, so let me live my life the way I want to.” This extends even into our final days and moments.

Howlett’s piece is thought-provoking, and I hope you check it out. I’d love to hear what you think about the idea of a “warrior mentality” and how it affects end-of-life choices.

Another good read was my colleague Holly Vossel’s article on Hospice News a few days ago on the ways that fraud is heating up in Texas – one of the four “hotbed” states for malfeasance, along with Arizona, California and Nevada. Georgia and Ohio should also be on your radar.

Right now, the eyes of the hospice community and the U.S. Centers for Medicare and Medicaid Services (CMS) are fixed on California in our fight against fraud. This is important, but we also have to remember that this problem extends beyond that state’s borders.