Thursday, March 11, 2010

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.

13 comments:

Patrice Villars said...

Love this post, Brad. Your passion explodes from the page. And, yes, hurray, finally for the opportunity to talk about these important issues. Reminds of the timeless line ‘the personal IS political” and vice versa. Let me go on record to say, I am happy to wear that red dress. I may draw the line at the red lipstick.

CCramer said...

I respect your passion, but please think about the words you use. I worry about the all too frequent tone of condescension heard in the tone of many well meaning passionate folks that makes conservatives (who are not all just idiots or fools who are in fear of death panels) turn their backs on anyone associated with Palliative Care.

Americans run the gamut--from oober-liberal to oober-conservative. Don't thy all deserve quailty Palliative Care?

But if PC professionals sound too condescending, too swayed by one arm of the political spectrum, they can just turn off many of the folks we need to reach!
Preaching to the choir doesn't do a lot to reach our most in need patients and families and peers.
Many of those Tea Party folks are our senior patients!

Instead of making our points by making others feel small & ignorant, shouldn't we be trying to find the right words to make people feel smart and empowered?

I teach Advance Directives programs to conservative seniors who leave thanking me, more knowledgeable about their options & miscommunications about palliative care, and feeling empowered by their choices and actions...But I never touch politics, never make them or the people they like & respect seem stupid or evil--just misinformed sometimes (like much of the general public).

Just like dealing with different cultures & belief systems, we can't denigrate what others believe. We need to try to work within their belief systems to offer what they will accept from us...

Instead of promoting a culture of "us" vs "them" (as we see in Washington, DC!), shouldn't we all be "us"? We may not agree on everything, but we can have very diff beliefs and still come to many similar conclusions.

Isn't autonomy all about respecting other's goals--not just ours? If we can open the door of trust to discuss those goals and help people truly understand what they want (and allow for evolving change over time, prn), isn't that what it's all about??

hospicephysician said...

Brad, thank-you for this post. I could be wrong but I feel like this conversation is meant to be heard by us, not as a public cry for anyone who will hear, but like a battle cry to rally the troops. I didn't feel that you were too condescending just passionate. Please keep the passion going as that is what we need to continue to pave new paths and continue to change those things that need to be changed.

DieLaughing said...

Bravo, Brad.

You're right!

We don't receive thank-you notes and gift cards and warm hugs and baked goods and movie tickets from our patients and families for being politically correct wimps.

Passionate. Patient. Perceptive. Pragmatic. Palliative.

Wimpy? Hardly. Dubious? See for yourself: In the next coupla weeks, tally up the number of times you hear each of the following statements:

"Thank you for giving us the big picture"

"Oh, now I understand"

"I'm so glad I have options"

"Why didn't we get to speak with you sooner?"

"We were afraid you were just going to shove us into hospice. Thanks for all your helpful information"

"We're so relieved to have someone listen to us"

"How soon can we meet again?"

"I don't know how you do what you do, but we're very grateful"

"Thanks for letting us vent"

"We can see she feels so much better"

"Where can I get my own living will?"

"I'm not scared anymore"

"Hospice care was an answer to our prayers"

"You've given us some hope. Thanks for spending so much time with us"

"After speaking with you, we want everything done, at any cost, with little regard for our loved one's wishes, lifestyle, outcome, comfort, or future."

"The family has requested a Palliative Care consult"

(okay, okay, that last one's a stretch, but I remain optimistically Positive)...

Brad, you energize me. Thanks for taking the time.

LindaB said...

Bravo, Brad!! Great post. Long ago your wisdom and vision inspired me to do more, to think more and to reach out to help people think about their futures and to tackle difficult system issues. You are still doing it!

hospicephysician said...

DieLaughing, it's amazing that I hear EVERY SINGLE one of those phrases everyday and to your surprise (maybe), I'm getting more requests by families even if their docs aren't on board. If I had a nickel every time I heard one of those phrases, I'd be a very rich HPM Doc. Keep up the great posts.

Stugee1 said...

Must every conversation we have be cloaked in political garbage? If you think that Sarah Palin's comments about death panels had anything to do with making discussions around dying "radioactive", you're as foolish as you believe her to be.

Death and dying have been problematic topics in our culture since I entered health care in the early 70s. Our society more and more seems to believe that death is an option not an inevitability.

This has nothing to do with Washington politics, Sarah Palin, the devil Karl Rove or any other political fantasy figure you wish to drag into the debate.

While you scream "wake up", I sincerely request that you grow up.

clay anderson md said...

death, a natural and awe-some and inevitable phase of life, has unfortunately been medicalized by us the professionals (along with to good of all the incredible life-prolonging and life-ehancing advances of modern medicine, thank goodness) and, in reality, sterilized and politicized by our society and the media. thus, too much of the time, when people are dying, they and their families do not know it, do not believe it, are not ready, and die worse (sometimes sooner too) because of this modern, paradoxic reality around death. regular folks who are just plain old wise, not academics mind you, who know death coming when they see it and deal with it authentically, do much better, almost always. our job is to help those removed from death and less wise about it to become wise about it fairly expeditiously, the sooner the better. anyone, academic or bluecollar or whatever, can do this well if guided well. it is not our fault that death has become so politicized. dr. stuart was just stating facts, not promoting a point of view, in my opinion.

Andrea said...

I provide medical care as a part of a community based palliative care program which grew out of the recognition of care unmet needs of our frail population in transition. We are a CBO health center for the 60 and up population, and provide care at clinic, home, SNF and hospital.
I have agree that an AIM type model has made enormous difference to our patients who are not able to accept hospice. Actually, the key pieces seem to be 1.) maintaining long term relationship with PCP network - which includes MD and SW, sometimes chapliancy and geropsych in our system. PCP home visits are especially important to patients, caregivers and partnering home agencies 2.) 24/7 RN availability. AIM is not set up currently to provide both of those components, so we have been working most closely with the hopsice agencies who have been willing to work with our patients who fall into the hospice grey zone, that is, need or want a little more aggressive management, or have CHF/COPD/valvular heart disease or dementia, and may have more like a 6m-12mo life expectancy. With this model, we have been able to stabilize several patients with COPD were were being hospitalized q 1-2 month and given speciality assessed prognoses of weeks to month. Three of these patients, now off hospice, are alive 2 years later, and to oviate repeat hospitalization for several patients with CHF and dementia. The reimbursement structures should be changed to support this level of care in the home. No doubt, Medicare dollars would be saved, and clearly quality of life improved.

Andrea Thach
Bridge Service
Berkeley, CA

Chiropractor St Paul said...

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tasha said...

[Forgive me if this is a duplicate. Pilot error. ;-)]

I am reminded of the phrase in research that "the rat is always right." And similarly, the basic tenet of social work (and marketing), "Start where they are." Whether you call it "optics" or simply being realistic, if people are afraid of the way we frame ourselves, we need to come up with titles or presentations that are less incendiary. In Buddhism, this might be called "the middle path."

"AIM" is a brilliant moniker in this regard. We use seriousillness.org for a similar reason. People are willing to admit Mom has a serious illness much sooner than they are willing to say "Mom" and "hospice" in the same sentence. If we want to reach families earlier in the process, we need to be sensitive, i.e., culturally competent, in how we approach our audience.

My experience has been that if you are given the opportunity to engage, then people react to our common sense and integrity. Once that basic trust has been established, we can then bring up the more frightening issues in a way that is safer and ultimately more productive.

On a note of optimism, I just came back from the Compassion in Action Conference hosted by Hospice of the Valley in California. One of the speakers commented that as a society, we now embrace natural childbirth but we still hang on to high tech death. I do wonder if, as the Baby Boom generation becomes the cohort that is dying, they/we might not take back the end-of-life passage in much the way we did with childbirth. As a lay midwife in the heady days of the 1970's home birth movement (and I hope I don't get type cast too much for revealing this!), I can see that we started as the (lunatic?) fringe. Eventually, though, the basic premises of de-medicalizing and taking control of the natural process of birth made its way through the mainstream and we now have in hospital birthing rooms that operate in a much more family centered mode.

Part of "growing up" is accepting that mainstreaming is part of building capacity and really establishing change that is accessible for all, not just the early adopters (often higher SES folks). There are things about birthing centers that I don't like relative to home birth, but it was a sea change and gives me hope that maybe this generation can create the same change as it takes its final bow. Now that would be an incredible parting gift, no?

Brennan said...

No bravo, Brad. You have too much to offer to get so small. Cutting off the legs of any other does not make you taller. An opinion is one thing. Having no respect for those who have differing opinions is another. (I may not LIKE the president, but I have to respect the office and his burden.) There are reasons why Mrs.Palin spoke out.Conservatives were worried about several things and here they are:
1) The folks who devised the end of life panel were also responsible for formulating the Oregon PAS rules. That scared folks.
2) People were not assured that their own, or a palliative care physician would be the ones discussing death options with the them. They were led to believe it would be someone in Washington calling the shots after reviewing their "case".
3) Where were the leaders in the field of palliative care when this was happening? Did any make an appearance on Fox? MSNBC? Anywhere? Could someone have READ the bill and clarified for 1/2 of the country what the heck the intention was? Where was NHPCO? Being on a blog isn't getting to everyone!
Just expressing an opinion!

Hospice CA said...

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