Talking Palliative Care and Death: Get Up, Stand Up, Grow Up

Finally. This debate has been waiting to happen ever since NHO added the “PC” to its name back in the last century. How ironic that dying has suddenly become so un-PC. Even to us.

What is our problem? On the surface, it’s simple: we have matured as a field, to the point that we now have to contend with how we look, and more importantly how we speak and act, in the real world of health care. This is good news, but to make it work, some soul searching is in order.

Why has dying become “radioactive?” Because Sarah Palin, PR master, made it that way with her Death Panel comment on Facebook. With one (more) semi-conscious crazy-ass remark she made “fear of death” the brand for all end-of-life considerations. And because optics is everything in our surface-obsessed culture, the world bought it. Are we following the world on this one? Uh-oh – I smell fear in the room. In fact a subtle scent of fear pervaded many of the meeting rooms in the Hyde Center last week. Did you notice?

Be careful, folks, of making “optics” more important than substance. We, of all people, should know better. We’re the only subspecialty that dares to utter the word “spiritual.” Didn’t a wise person once warn us about gaining the whole world and losing our souls? Full disclosure: I’m a non-religious left-coast spiritual junkie, but all true explorers have to admit there are some great quotes in that book.

It’s easy to see where the “radioactive” rhetoric is coming from. In DC, policy making is indeed all about optics. For a Senator or Rep, one thoughtless word and your constituents send you back home to get a real job. But for us it’s got to be different. Radioactive? Hm. I try not to go near radium, but I do get close to death, and so far my skin hasn’t sloughed off.

Wake up! Our discussion has to take place on two levels. So far we’ve stayed safe and superficial. “Putting up a wall between PC and dying” is a branding issue, pure and simple. Sure, we don’t want to turn people off – that would include patients, families, doctors, Congressfolk & their aides, most journalists, in short almost everybody but us. But wait – us too? Please.

In the “real world,” branding is a fact of life. You have to convince people to pay real dollars for a bottle of water. It works. They’re selling 14 billion of those babies a year now. It’s emotional – you turn people on by convincing them they’ll feel better if they buy what you’re selling. Case in point: Pharma ads.

“Death panel” rhetoric is just the other side of the coin – turn people off to Obama and government “intrusion” into health care by making them scared. Negative ads are a necessary tactic for Sarah because anyone with a brain knows that government is already the biggest payor in health care, and bound to get bigger unless you want to drop everything, move your parents into your own house, and nurse them as they age and, yes, die.

But – and here’s the key point – branding works on a piece of your brain that lies deeper than the thinking part. Call it what you want – the limbic brain, the reptilian brain, the emotional brain. It feels, doesn’t think, and once it’s convinced, it’s impervious to intellectual appeals no matter how sensible (read “evidence based”). Tea party, anyone?

The “feeling brain” has a much stronger influence on decisions than the opinions and beliefs held by the “higher brain.” If this “lower” mode of “thinking” sounds familiar, it should. Just recently, we barely survived eight long years while it ran the Federal government. Didn’t Karl Rove just publish a book? Maybe we’ll get a peek behind the wizard’s curtain: the wizard of the low-brow brain.

You can’t get anything changed in society without making good use of branding, because change makes people nervous, no matter what they “think.” That’s why everyone is for “cutting health care costs” (an admirably higher thought) but no one’s Senator or Representative will actually cut any costs, because that’s offensive to the lower brain. It runs on fear, which is higher-octane fuel.

I love branding. I think of it as a way to join the mind and heart to get things done. Shameless plug: our little group at Sutter Health, a 26-hospital system in N. CA, 8th largest non-profit in the US, has taken our Advanced Illness Management (AIM) program of home-based palliative care system-wide. We’re using it as the “glue” to bind together hospitals (complete with inpatient PC and allied hospitalists), medical groups, home health and hospice, along with whichever community-based services and unaffiliated docs want to play. It’s taken 12 years since we got that first RWJ “Promoting Excellence in End-of-Life Care” grant, but we are finally mainstream, with full system support top to bottom. Why? Because it’s the right thing to do, and oh yeah, it could cut costs. Of course, it will take 12 more years to get all the moving parts running together, but that’s another chapter.

Note that the AIM “brand” is deliberately not about dying – on the outside. On the inside, the metrics are all about POLST forms and hospice enrollments, and the staff are all trained to have the difficult conversations that MDs start and AIM staff can finish. It took a solid week in 2001 to think up a name for the program that didn’t conjure up the D word. It had to be sexy, and of course it had to have a snappy acronym. Advanced Illness Management (AIM). That’s branding. If you want to be a player in the adult world (which is really a sophisticated but thin veneer over some pretty primitive emotional material), that’s how you have to play.

So that’s the branding issue – important, but not the end of the story. We certainly have the experience, insight and spirit to go deeper than that. But do we have the spine? I hope so, because that’s what it takes to get where we need to go. Yes, we have a duty to our patients, who naturally want to live as long as possible (perfunctory bow to autonomy). However, we are also accountable to our culture, which very badly needs to hear what we know about the bittersweet reality of death, whether or not it wants to listen. Our country has some hard choices to make about what to value in our health care, and we need to be at the table. Who knows, the way “reform” is going (or not), we might be some of the only grownups there.

We are inside players who know the truth, and we have a responsibility to help our society come to terms with dying. Of course it’s hard, and more than a little scary. You want to think twice before you call someone out about what’s in their shadow. You’re bound to get a reaction, sometimes violent. Fear is a powerful force, but it’s blind. So be careful – that is, full of care.

Leadership counts in the adult world. We have to talk about what matters, out loud, with others listening, again and again. Repetition is the key to adult learning. Don’t be dumb, keep your audience’s fears and prejudices in mind, use your branding expertise, but don’t withdraw. That’s what wounded children do. That’s the avenue many of us have taken to become “wounded healers.” It’s a noble path. But hey, it’s time to grow up. We matter now, and the world needs what we have to offer.

Ah yes, the world. Whatever happens with the White House reform proposal, it’s only about insurance reform. It won’t even begin to touch delivery system and payment reform – they’re also radioactive. There will be lots more work to do, and some of it will be up to us.

Let’s talk bottom lines. Below are four fundamental reasons why I believe palliative care is critically important to health care reform. Forget radioactive. Talk about it. Just persevere. Outlast the resistance: this is a basic spiritual principle. Don’t be cowed. If the system is to wake up, that process needs to start in our own minds.

1. Economics: What, we’re going to publish data showing that inpatient PC saves money, then stop talking about it? Most hospitals in the US are losing money on every Medicare admission, CMS is going to stop paying for readmits, and Obama is promising to cut Medicare reimbursement further to pay for wider coverage, as he should and must. Summon your courage. Even the Dartmouth Atlas, which slew giants with their 2-part Annals study that showed more treatment isn’t better, is afraid to come right out and say that we simply have to stop treating people to death. Case closed. For better or worse, however, that heavy lifting will be up to us. Come on, try to convince me that this isn’t going to become a huge issue as the stimulus wears off, as we stop buying our own Treasuries, as interest rates go up and as China loses its appetite for our debt. We can’t keep paying for fantasies of everlasting life on credit. At some point the bill will come due. Here’s what will happen: bundled payments and ACOs (which I’m for, having learned in CA how managed care aligns financial incentives) will bring back global capitation under another name. Providers, striving to maintain income and market share, will fight each other for the scraps. Reality will bite. Unfortunately, it will take big chunks out of our patients. Disease, reversible or not, will remain untreated, especially in the elderly. Pain will certainly not get managed unless we make it happen. Dying, if it continues to be ignored, will get uglier. I could go on. We are ideally positioned to help. Don’t be downhearted. Why else have you sat with those who are hopeless, holding hope for them? What have you learned? Hopefully something about the transparency of despair, and awareness of what’s on the other side. Teach that.

2. Patient choice: This one’s easy. When advance care planning gets started early enough to detoxify the process, people tend to choose not to go through the rehospitalization revolving-door meatgrinder. Flash: public at large! In today’s fee-for-service system, while we’re still under the delusion that we can afford everything we could ever want, you shouldn’t fear we won’t treat your grandmother. You should fear we won’t stop, because unless you speak up, we won’t. Even Sarah will figure this out as her parents age. Look at Bud Hammes’ 25 years of work in La Crosse WI. Respecting Choices is very cool, because it turns down the heat on the issue so people have time and space to reflect, to decide what they really want, and to choose to die at home with family and friends.

3. Emotions: Sarah reaches people because she knows how to get to their feelings. Check out that red dress. We have to go there too, although in general, depending on the company, I draw the line at wearing a dress. Make it fun! But make the point. I absolutely refuse to allow Sarah to take the “moral” (not) high ground on these issues. We have been seduced by the idea that if we just get academic enough, everyone will accept us. Hey, I’m au courant. When designing interventions, my thinking is as evidence-based as the next modern, highly-evolved physician. But when it comes to serious illness and death, that’s so yesterday, so out of touch with reality. People don’t think, they feel. Ironically, Antonio Damasio has provided plenty of hard evidence for the emotional nature of thinking (read The Feeling of What Happens, Descarte’s Error & Looking for Spinoza), but we haven’t incorporated this elegant and wonderful data into our approach, yet. Oops, Sarah and Karl already have, although in terms of ultimate reality, please forgive them for they know not what they do.

4. Spirituality: I love the studies showing that people who have a deep and abiding belief in God, and faith in a soul that lives beyond the grave, say that they want to go straight to the ICU on a vent when things get scary. Like you, I have seen countless people go to their death with joy on their faces, even if the smile sometimes shows up pretty close to the end. I tease myself with the thought that my awareness, my growth over decades, my inner struggles with my demons, my own and others’ mortality, may have some influence on that marvelous awakening. Who knows? Bartenders and hairdressers, with experience, could probably do as well. Of course, that awakening doesn’t happen as much in the ICU as it does at home. Thanks, hospice volunteers. Anyone want to connect the dots between spirituality and reducing readmissions? Feel free. What’s radioactive now will be kitchen-table conversation one day. The “dying problem” in the US is ultimately (I use that word on purpose) a spiritual one. Come on, PC people – we have a front-row seat. Tell stories and change minds – or hearts, which is the real first step.

Way more to say, but this is a start. Get with Twitter, it’s quick and easy. We need to talk about all this together. Don’t let the bloggers bogart the conversation.

Rave on, brothers & sisters. You may catch some flack in the short run, but eternity is on your side.