It’s always so interesting when people are forced to discuss taboo subjects, or are willing to do so, in public settings. It is also particularly interesting to me that different settings seem to define what is taboo and what is totally acceptable discourse. No where is this more true than in healthcare vs. popular culture
This last week I was at the Health Evolution Summit, a great conference that I would never miss, and was delighted to see something entirely new for a healthcare conference in my experience: a panel of payers talking about end of life and palliative care. This is a very sensitive subject for many and one few people like to raise over coffee with their closest friends and family, much less in a room of 500 people they barely know.
The end of life panel was moderated by the one and only Alexandra Drane, who has been a leader in the discourse on this topic for a long time and who is generally fearless about taking on the topics the rest of us like to pretend don’t apply to us. Alex will stare you down and make you think rather than let you weasel out with, “love to chat but was going to feed my cat…” and does so with great grace and humor as well.
The panel (or shall I say “death panel”) discussed how payers, such as Cambia (parent of Regence Blue Cross Blue Shield), Henry Ford Health Plan and Aetna, are handling the challenge of making available and paying for end of life care, palliative care and related services. It’s a challenge fraught with semantic drama, even though a vast majority of Americans believe that patients should be allowed to choose to hasten their own deaths when they are critically ill or injured. Check this out: in the same Gallup Survey, 70% of those surveyed agreed that doctors should be able to “end the patient’s life by some painless means.” When the question was changed to whether a doctor should help a patient “commit suicide,” the number of people agreeing dropped to 51%. In both cases the topic was a terminally ill patient, so not someone who sought to commit suicide for other reasons.
One of the really interesting discussions during the end of life panel was that these particular payers are actually doing things, such as paying for palliative care and more dignified end of life scenarios for their patients. However, even though they know these programs improve customer satisfaction, improve patient experience and save money, they are not even allowed to measure, much less talk about, the savings aspect of this for fear of launching themselves straight into the belly of the “death panel” beast. It’s crazy, really, but words matter and taboo topics scare the hell out of people or, alternatively, are used as a weapon against those trying to make a positive difference in a professional setting.
The discomfort around these “unmentionable” topics in healthcare is fascinating, particularly in contrast to the discussion that goes on elsewhere around similar categories: death, sex, drugs, etc. I recently published a podcast with my co-conspirator, David Shaywitz, in which we interviewed Kelly Brezoczky, CEO of Butterfly Health. Butterfly makes a small pad for protection against mild bowel leaks and this (incontinence) is something that rarely comes up in conversation or on conference panels, death or otherwise.
I actually raised Butterfly as an example of a company that had read the aging market right when speaking at the Milken Global Conference this last week and there was a collective squeamish squirm in the room, including from those on my panel who are in the business of understanding and responding to the aging population. I actually had to laugh out loud about that, because if statistics are any indicator of reality, about 1/3 of the room is probably actually experiencing this problem already. FYI, if you are interested in this panel, which featured a pretty all-star line up of smart people on the topic of the “silver tsunami” including Joe Coughlin, Director of MIT’s AgeLab, Paul Irving, CEO of Milken Institute’s Center for the Future of Aging, head of design focused on aging for IDEO and Jody Holtzman, SVP Thought Leadership at AARP, you can watch the video of it HERE.
What’s particularly interesting about the taboo topics of healthcare are how they have become not taboo at all on the mainstream media. Death and dying and assisted suicide are the subject of TV movies and regular movies and books galore. Million Dollar Baby won four Oscars dealing with this subject but I wonder if either of its stars talk about “do not resuscitate” orders at the dinner table?
My favorite recent example of this dichotomy is actually in the drugs category, where people around the healthcare system talk uncomfortably about the medical issues of illegal drugs, substance abuse, the stigma, the cost, etc. But even more interesting to me: I have yet to go to a healthcare conference where there has been an open discussion about the growing acceptance of marijuana, including moves to de-criminalize it and how it may or may not be a help drug for some patients. Not one conference, not one discussion, not a peep on this topic in the mainstream healthcare discourse. I’m sure somewhere this topic is being discussed in the healthcare system and that in some carefully concealed room there are people talking in hushed tones about whether medical marijuana should be a covered drug for patients with cancer, but I’m pretty sure those “drug dealer panels” won’t see the light of day for a long time.
Meanwhile, back in popular culture, Jack in the Box has out and out launched an entire line of products for stoners and is openly marketing it as such. Seriously. Check out the Jack in the Box Munchie Meals and tell me those aren’t squarely targeted at people who smoke a lot of pot, for medical reasons or not. My personal favorite is the Stacked Grilled Cheese Burger Munchie Meal, featuring a grilled cheese embedded into a cheeseburger, served with not one, but two tacos, French fries, onion rings and a 20- ounce soda. Bad news: it has 1638 calories and 3624mg of sodium. Good news: 55 g of protein! Better news: you can make the add “awesomer” by adding tie-dye to it on line. Or a jungle cat. Tell me this isn’t openly marketed to pot smokers and I’ll show you their tv ad and prove you wrong.
Here’s one thing I can tell you for sure: we won’t be embarrassed to talk about the cardiovascular disease and diabetes these pot smokers are going to get when they finish their meal. And that’s the shame of it, actually. We can talk about major diseases but we don’t openly talk about those things that actually can alter the comfort and satisfaction of people’s lives, such as incontinence, sexual dysfunction, death with dignity, etc. No wonder there is such a demand to legalize marijuana. It definitely frees up the speech!
Wouldn’t it be great if we lived in a world where all topics, not just comfortable ones, could be openly discussed, where nothing was reasonably off limits? Of course there is a right place, right time for these things, but isn’t the right place and right time for taboo healthcare topics all the time when it comes to the healthcare system doing right by patients. Now excuse me while I explore that second taco…..
molly coye says
Lisa, I’m pretty sure your column should be listed as an addictive substance… and this one even more than most.
Alex Drane has been daring us to think about the “unmentionables” for some time, and to actually do something about listening to patients’ wishes for death and dying for even longer. There are whole classes of healthcare professionals who do this for a living (think LCSWs, LMHCs, and many more) but they rarely get to drive the overall design of care systems. Too bad.
One exception is the Kaiser Permanente In-Home Palliative Care model, an outstanding collaboration of these professionals, nurses, physicians and others in teams that focus on the needs and preferences of patients and their families. Satisfaction soared, and the program saved almost 40% of total costs (net costs) in the last year of life, because it gave patients a chance to chose their own path.
We should not only talk about these difficult subjects, but act.
Lisa Suennen says
Molly, could not agree more. It’s a shame that the discussions got silenced by so much political silliness. Hopefully that is changing. Lisa