An Open Letter to Healthcare’s C-Suite

I didn’t think I was going write anything more about my cancer experience – at least in the near term. I’m just kind of done with it. I finished my chemo and now I have to conjure up whatever “mind over matter ninja magic” I can to keep it at bay for the foreseeable future. My next blood test is in a couple of weeks and we’ll see how things are, but I don’t anticipate anything negative. Even with a positive result – that’s no prediction of the longer-term though. I didn’t think I’d have to go back through this two years ago after the last set of infusions in 2015. But I did. So now I’m realistic. I’ll do everything in my power and that’ll have to be enough.

This year has been anything but fun. Cancer is just one part of it. Living in a world with Donald Trump, Mitch McConnell and Paul Ryan having anything to do with my well-being has me in constant state chemo-aided anger. My resistance to nonsense is at an all time low. For all my talk of self-efficacy, mine also often wains. Enough of this though. I’m still an optimist and I have to look at 2017 as just another one of those pothole ridden stretches of road to my Perfect World. It’ll get smoother.

What I do want to do is take one last stab (at least for the foreseeable future) at turning this experience into a positive for other people who may be going through something similar as I am. And selfishly so … maybe it’ll help me too.

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This is my Open Letter to all those who are tasked, or have made it their profession to be part of our worlds during these precarious times of health we face.

I’ve come to realize that few people outside the “I have or have had cancer” club really have any idea of what the experience is actually like. I assumed the doctors, nurses and administrators in the exalted cancer centers of our community-dominating clinics would. I assumed once you walked past the donor walls you were given membership to some secret society where every one was in the know, empathetic and waiting to literally and figuratively take you the hand as you waded into the deep end of this murky physical and emotional pool. Such is not the case. Having a life-threatening, debilitating disease or not … we’re all thrust into to the same malaise of issues plaguing healthcare in America. Just because hundreds of thousand of dollars and thousands of lost hours of patient productivity are siphoned through the system – we’re all relegated to the same level treatment and customer service. It’s the same experience for everyone. Obviously I’m naive to think it would have been different.

As response to my personal frustration, I have vented over the couple of years through my blog. I’m not going to rehash the content I wrote now. The links are below if you want to yourself. And it wasn’t that things went so bad, even though the chemo treatment didn’t hold the first time and within two years I was back in again for another six month regiment. And it wasn’t any one person. For the most part, the people involved in the treatment regime did what they were tasked with. They did their job. But maybe that’s the problem. My idea of what their job should be and what it is as defined by their employer, my healthcare provider, are two completely different things.

Maybe my problem is that I’m idealistic and see things how they can be not just how they are adhering to the crippling paralysis of the status quo of diminished expectations. Maybe I’m just not tolerant of  organizations who don’t make it their mission to first set the bar as high as they can for the customer. Maybe I just don’t get what health mean in the context of a healthcare provider.

We live in world infected with silos. And I don’t mean silos that hold corn and wheat. The obsession with specialization and being an expert has been thrust upon us for decades now. And it shows no signs of letting up. And no where is this more epidemic than in the medical field. Did you notice I didn’t say health field. When specialization enters the discussion, the two are not necessarily synonymous. For example:

Many young American surgeons have a strong desire to do humanitarian work overseas. But their good intentions usually don’t match up with the skills, such as performing cesarean section deliveries and fixing broken bones, that they’ll need in poor countries. But only 0.1 percent of general surgery residents in the study had been trained to do a C-section. Yet it’s the most commonly performed surgical procedure in MSF projects.

The skills necessary for work in the developing world used to be universally taught in American surgical rotations. But training has changed to reflect increasing specialization. (NPR)

I assumed when I descended down the rabbit hole of a cancer diagnosis I would be enlisted in a collaborative effort to battle this condition. I assumed we’d have discussions about the role I would be expected to play over the next few months during treatment and afterward. I assumed we’d talk about how I could support the efforts of my doctors for my benefit. I assumed we’d have discussions on diet, exercise and mental issues as well as the physical ones. I assumed we’d talk about my life in the real world and the effect the cancer would have on those around me – those expected to provide help as well as those I’m currently providing help to.

I assumed there would be a “we.”

There is no “we.” They was no talk of my life outside the walls of the hallowed halls of the cancer center. Obviously my treatment ends at the bottom on the computer screen containing the results of my latest blood panel. Every doctor visit or infusion session began the same way: “Any pain?” My answer was pretty much the same every time: “No, but I have chemo brain, I’m tired and a I have thermometer as my constant dance partner.” But since my answer didn’t reference to the pain question and wasn’t in the affirmative: it was brushed aside. It didn’t fit into the boxes on the EHR software that operates as the equivalent of a malignant shadow government in most healthcare providers. The interface design of Epic and its competitors covertly dictate our relationships with our doctors, PAs and nurses.

Well, I hope my journey of “Any pain?” questions has come to an end, at least for now. So anything that may come from any of this post will be for the benefit for those that follow me. And I’m good with that. That being said, this is my letter to those in charge of our healthcare system in this country – the ones that run clinics with walls filled with donor boards.

First, quit reflexively calling yourself healthcare providers. This is a title that is earned. Most of you are human body repair shops. Nothing more, nothing less. If something breaks, hopefully you’ll fix it after the fact. At least when it comes to our cars they instill the importance of changing oil and taking other preventive measures. In the six years of attending doctors appointments for either myself or my two elderly parents, not once has the questions of diet, exercise or cognitive stimulation been brought up. What’s the hell is up with that!

It’s bad enough these foundational health and well-being issues aren’t being stressed with my parents, but you’d think they would be with me being a cancer patient and facing the ravishing effects that not only the disease but also the chemotherapy has on me. Shouldn’t there be a concerted effort to attack this with all resources available – especially ones that I may be able to bring to the game. I consider myself pretty tuned into my body and mind and work hard on my self-efficacy. I firmly believe what I do will make a difference in my outcome in battling cancer. I’m not going to sit idly by and think the only component to my success is administered through an IV on the fourth floor of the Billings Clinic infusion center. But what about the other cancer patients who have only blind faith in the bag of chemicals? Will they do anything for themselves to help out their own prognosis? This disease that we’re living with is not yours – it’s ours. We have to be involved in our own future. Our parents and grandparents may have been content with turning over the prognosis of their future to you – but we’re not. This is a collaborative effort and if you as both physicians and the institutions you run aren’t prepared to accept that, relinquish some of the control … get the hell out of the business and make way for some that will. 

And another thing, don’t treat us like victims. We have lives to live that transcend our disease so don’t lump together as just survivors. Survivors are those stakeholders who have lost a loved one. We don’t have any time to relish in the fact that we are still alive. We’re too busy trying to live. And believe it or not, our lives take place outside the walls of where your paycheck comes from. 

If you want to truly deserve the name, “healthcare provider,” come to grips that health means more than what you do for us in your clinic. Get past the body repair shop mentality. If you really want to raise the bar; take a walk around your community, and not just the gated one you live in. Take a walk around the streets where those people who have entrusted their lives with you live. Do you like what you see? Do you see enough parks and places to walk? Do you see playgrounds filled with kids afterschool? Do you see a farmers market down the street from where you park your BMW; or a farmers market where a cancer patient like myself can use a prescription for fresh produce? Do you see opportunities for children and the elderly to serendipitously interact with each other … exchanging stories and dreams; of the past, present and future?

My definition of health is being able to pursue the life I want to live and having an environment that is conducive to it. If my healthcare provider wants to consider itself one in more than just name on a letterhead, it has to lead the charge in the community to make this definition a reality. Not everyone is in perfect shape, especially people who have recently gone through what I have. Help us make a pursuing a good life, or at least a decent one – one that doesn’t involve massive stakeholder preparation or driving endlessly a monumental undertaking. Physical serendipity and engagement is our friend … if not our salvation. A healthcare provider most often has more community clout on several levels than any other entity. You have the stage – use it. If you’re not going to, pack up and make way for someone who will.

I’m sure a lot of you will brag about all the wonderful things you’re doing for the community. Invariable most all have to do with building stuff though. Ribbon-cutting ceremonies generate big press, big donations, names on big buildings and more names on big donor walls. And if it’s not shovels in the ground – it’s technology. A plethora of accounts on my Twitter feed are salivating over artificial intelligence and its possible effect on the healthcare field. But it seems like healthcare is a zero sum game. The more money spent on buildings being built and technology being put in play, the less on human interaction. Investing in caring for people as people is nebulous and hard to quantify going out and especially hard obliquitously coming back around.

Salutogenesis, Engagement and Self-Efficacy

Salutogenesis is a term coined by Aaron Antonovsky, a former professor of medical sociology in the United States. The term describes an approach focusing on factors that support human health and well-being, rather than on factors that cause disease (pathogenesis). More specifically, the “salutogenic model” is concerned with the relationship between health, stress, and coping. Antonovsky’s theories reject the “traditional medical-model dichotomy separating health and illness”. He described the relationship as a continuous variable, what he called the “health-ease versus dis-ease continuum.”

In 2008 Scotland, specifically Chief Medical Officer Sir Harry Burns, adopted salutogenesis as national public health policy. Burns helped Scotland conceptualize health improvement differently, being aware that the small gains that resulted from a range of interventions can add up to produce significant overall improvements. Much of these interventions were and are aimed at empowering the populace through engagement with their own health outcomes.

Engagement creates agency and self-efficacy. Self-efficacy is defined as the extent or strength one believes in their own ability to complete tasks and reach goals. The more a person believes their actions will help their situation, the more likely they are to try. The more a person does, the more they’re likely to do. And the more they do, the more they feel what they’re doing is helping … creating a cascade of positive results and well-being. And at the center of this is engagement, whether it be personally, socially or civically.

Isolation And Our Nation’s Declining Health

A report came out last week that generated a tsunami of follow-up articles. Julianne Holt-Lunstad from Brigham Young University presented the results of two large meta-analyses on the connection between loneliness and premature mortality at the 125th Annual Convention of the American Psychological Association. 

“There is robust evidence that social isolation and loneliness significantly increase risk for premature mortality, and the magnitude of the risk exceeds that of many leading health indicators,” Extracting data on things like social relationships, health status, pre-existing conditions and causes of mortality, the team was able to quantify a difference between socially isolated people and those with stronger relationships. Those with strong social relationships were 50 percent more likely to survive longer than those who were isolated. 

“The magnitude of this effect is comparable with quitting smoking and it exceeds many well-known risk factors for mortality (e.g., obesity, physical inactivity),” they write in the study.”

Being alone, often due to declining marriage rates and fewer children, is literally killing us. We don’t engage with each anymore. Not only have our communities not compensated for these changing demographics – suburban sprawl and the invasion of box stores has added to the problem. The neighborhoods America has always relied on for social support have become the exception not the norm. Rather than walk down to the local park and feed the squirrels or play chess under the oak by the playground – our isolated senior citizens watch Fox News hours on end. And not just our senior citizens, it’s anyone facing months or years of chemotherapy or similar treatment. Have we been relegated to lives of polarizing cable news ideologies or driving to Walmart?

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Well-being, Hope, Role of the Healthcare Provider

“I believe that the community – in the fullest sense: a place and all its creatures – is the smallest unit of health and that to speak of the health of an isolated individual is a  contradiction in terms.” Wendell Berry

What if we designed our communities around the idea of maximizing engagement. The more engaged our residents are … the more empowered they are and feel they are more in control of their health and their futures. Imagine if a chance to engage, whether it was physical, mental or social was just around the corner. And what if opportunities to help others realize the same were part of the fabric our daily lives. And imagine if our storied healthcare providers felt their mission and their duty to be at the forefront of this effort.

What if engagement and well-being was how a community measured itself, not obtuse economic activity often distorted through the one-dimensional filter of irrelevant statistics. What if we fixated on what we “could,” rather than what we “can’t.” And what if getting up in the morning was a chance to nurture our hope … and engage with other to help them do the same. And again what if at the center of this new enlightened measurement were those allegedly in the business of keeping us healthy. Then maybe they would truly deserve the words on their letterhead.

Life doesn’t have to suck just because you have cancer, have any other hardcore disease – or are just getting old. But it sure can be if the so-called leaders or our communities, especially the ones perched in the ivory towers of storied healthcare providers, don’t step up and help us out.

We need you to lobby for our communities to be places that prioritize people and engagement – not cars and box stores. We need you take some of the money you don’t pay in taxes and invest it in community gardens, farmers markets and street fairs that showcase local art that encourage creative engagement. We need you to lead the way on healthy eating by including cooking and nutrition as an integral part of our treatment. And while you’re at it – include our stakeholders. We need you to be advocates for engagement and “getting out of the house.” Communities that encourage something as simple as allowing dogs in parks will boost their residents’ collective health and well-being.

We need you to reach out to us with transportation, especially when we live more than an hour away. I’d like to see how many CEOs go through a twelve-hour chemo infusion session only to drive themselves an hour home to two elderly parents they have to help caregive. Probably not many. The life of a cancer patient is seldom one of a giving extended family waiting at the beck and call. Often it’s flipped. Cancer affects anyone and everyone … regardless of the burden of their obligations and responsibilities.

We need you to be vocal when you see politicians and government not doing what they should to improve the human condition of our communities. You should be a regular contributor in the OpEd section of the newspaper. You can’t hide behind the nonpartisan label just because you’re afraid of losing a few ideological wayward customers. Losing them is nothing compared to losing your integrity and human decency.

Most of all we need you to use your stage for us – not just for the construction workers and contractors you hire to build your buildings. I always say that there are few things worse than being rewarded with a stage, a platform to make a difference – and doing nothing with it. People’s time and attention is the one thing that is scarce and money can’t buy more of it. To squander it is criminal. People not only listen to their doctors and healthcare provider – they often don’t act for their own well-being unless given the go-ahead by them. This is a responsibility you personally shoulder, whether you like it or not. If you’re not up to the job … there are other ways to pay for that BMW. Or even more so … you can trade it in for a Taurus.

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Life during Trump, Part 1: “Recognizing the Problem”

“The mind…can make a heaven of hell, a hell of heaven.” ― John Milton

It’s hard for people to empathize with you when you’re going through chemo. I’m not looking for sympathy and I’m not saying people don’t try. It’s just one of those tough subjects. There’s always that specter of death that hangs over the conversation. This possible prognosis, correct or not –  supersedes any discussion of “how you’re doing.”

It’s hard to explain that things just change. And it’s more than just physically. The nausea gets all the attention, But that’s never been an issue with me. It’s a lot more than that. My senses has changed. I don’t smell, or hear, or taste or see like I used. Whether or not they’ll come back  remains to be seen. After my first “rodeo” my senses recovered some, but not entirely. And I’m sure with this latest group of treatments (I hate that term) this sensory wet blanket that I’m dragging around will probably be my new companion for the foreseeable future. Linus has nothing on me.

Mainly what people can’t understand is the mental changes that occur. I guessing it’s not unlike what PTSD sufferers deal with. Around every corner, there’s a trigger that can set off a memory that’ll send you into reactionary tailspin. In a wonderful book by Debbie Hampton, she re-accounts her recover from a suicide attempt where she injected over 90 pills. She literally fried her brain. It was so damaged she had to relearn how to live and with that her impulse control was severely impacted. Because of her frequent outbursts, her friends and family such had hard time dealing with it many just stayed away – including her mother. She had to rebuild her life mentally and physically, block by block, encumbered by this new uninhibited broken brain as its foundation.

By no means am I dealing with anything like what Debbie did, or probably still is. But I do get the brain change thing as my patience and tolerance level has been affected … big time. My world has triggers everywhere now. Most of time we go through life and just let irritating things pass us by without much notice – at least not letting it affect us. Such is not the case with me since chemo has fried my brain. I like to describe it like an archipelago. During normal tide, only a few of the islands are visible. But now I’m in a constant state of low tide. Everything is visible and everything affects me.

All this being said … it bring us to the insane asylum on the east coast, better know as Washington D.C. What’s happening in our political wasteland is having a big effect on me right now – culminating with the latest antics of the Republican Congress and the clown boy in the White House. For many the healthcare legislation ramrodded through the House by Paul Ryan is nothing short of a bus hitting us. I try to get my head around all of it and inject some reason into their decision making process – but I can’t. The group think that has reared its grotesque head is a modern-day tulip mania of Sherman’s March to the Sea (how’s that for a mixed metaphor). The insane mindset that has taken over this party is completely void of any compassion, empathy or even basic humanity. The days of Bob Dole and even Ronald Reagan are long dead. The zombie that has taken its place bares little resemblance.

Unfortunately I can’t just turn off the television, quit looking at my Twitter stream or let my newspapers pile up on the front porch and wait for it to all go away. I’m front and center on the preexisting condition issue. If all this comes to fruition (as in the poison fruit), I’ll be at the mercy of my greedy insurance company. Combine this with the crazy state my brain is in right now, and I’m spending time figuring how to stockpile and freeze chemo drugs from my current treatment sessions while I’m still covered – to be used if I need them in the future, if (more probable when) my insurance company drops me or prices me out of the market. Welcome to life in Montana, land of cowboys, guns and extremely limited healthcare options. I have to constantly remind myself of the John Milton quote, “The mind can make heaven of hell or hell of heaven,” to keep from digressing into obsession.

The man on the white horse, the man in the white hat … well, neither one of them are coming.

Running of Trump’s Lemmings

Regardless of my personal situation or more accurately, my perception of it … we can’t dismiss reality. If the picture couldn’t get any clearer – looking to these clowns in political zuit suits for the answer is pure insanity. Even someone with chemo brain can tell you that. Yet Trump supporters still support him and Republicans are, and probably will always be Republicans.

But not to be left out of the delusion soiree, Democrats still think that if they put someone of theirs in the White House, the federal government will magically become a bastion of implementation prowess. Regardless of who sits in the Oval Office – our country’s, and more importantly our individual problems will not be fixed.

Last Thursday night, I had very disheartening conversation with my daughter. Now Alex is a bright young woman in the midst of a very successful career with tours of duty at Apple and Amazon. She is grounded and informed, but her logical mind is having a very hard time understanding how this country, one that she has always felt even in times of craziness – will do the right thing. But after Thursday, those assumptions have been shattered. For her it was like realizing there’s no Santa Claus. With the this healthcare legislation, the Republicans have not just targeted the “outsiders” – but rather the very people who worship them and put them in power. The level betray is unprecedented. At least Hitler didn’t kill the Germans he viewed (in his demented mind) to be his true countrymen.

It’s safe to say “we the people” are on our own. We can only hope we have enough resolve individually and collectively to fend off the daily assaults waged on us by those we’ve entrusted to look after our interests. May today be the day we take our institutional naivete′ and bury it with the illusions of Santa Claus and the blanket we slept with when we were two years old.

Since Trump has taken the reigns as leader of the free world (theres’s so much wrong using those words together in one sentence), the mental health industry has seen a dramatic rise is suicide calls and psychiatric activity. Bluntly speaking, people are depressed. Normally optimistic people are seeing their world view might have been based on flawed assumptions.

Personally I’m not ready to throw in the towel on humanity. I’m still an ardent believer in David Hume’s philosophical premise that people are intrinsically good – not that of Thomas Hobbes and the need for a Leviathan overlord. I believe we just need to reset our social and civic perspective. No white anything, hat nor horse, is going to pay our house payment or make us healthy. That is up to us. The sooner we admit to this, like the alcoholic or the ten a hydrocodone a day housewife – the sooner we can get onto fixing what needs to be fixed.

Self-Efficacy and the Road to Recovery

In the past I’ve been accused of assuming people have too much control over their own destinies. Upbringing, environment, genetics or even belief in a higher being I’m often told are the determining factors – no matter what their own efforts. If you’re not white, probably male and connected – the deck is stacked against you. Getting dealt a “bad hand” is grounds for government intervention and assistance. Most recently, the in vogue means of this assistance is basic income – getting paid for basically existing and being a member of society. I’m all for the betterment of all people. Anyone who knows me or has read any of my 200+ posts on this blog will attest to that. In fact, that’s probably the one common tenet that runs through the entire site. That being said, I can’t believe a reward with no incentive to accomplish anything is the best way to achieve it.

Shouldn’t the road to our Perfect World be paved with the something that will produce a longer-lasting effect than just a monthly sustenance? Shouldn’t we base our societal actions around the assumption if we better ourselves good things will come for both us and those around us? It’s the “giving a man a fish vs. teaching him how to fish” thing in the Bible. And I don’t believe this is even a political issue anymore. Regardless of your ideological affiliation, relying on the government (or any other institution for that matter) to actually deliver is naive at best.

Shouldn’t we strive to create communities and social constructs that move us in a direction that empowers people? Shouldn’t we be teaching people how to fish – working with them to obtain the physical, mental and social tools they’ll need to not just persist, but flourish on a long-term basis? At the core of this empowerment is building a communal sense of self-efficacy.

Self-efficacy is defined as the extent or strength one believes in their own ability to complete tasks and reach goals. The more a person believes their actions will help their situation, the more likely they are to try. The key is to “get the ball rolling” by nudging activity and engagement – personally, socially and civically. The more a person does, the more they’re likely to do. And the more they do, the more they feel what they’re doing is helping … creating a cascade of positive results and well-being.

In America there is little effort put into getting people to engage directly with their health and personal well-being on the part of the established healthcare industry. Maybe providers are reluctant to relinquish control. Maybe it’s they just can’t be bothered. Regardless, the country lives by a healthcare methodology of reaction and “fixing things” … not proaction and “maintaining things.” It’s no big stretch to believe that transferring some of the responsibility for our own health to the ourselves will prove beneficial to us. And it’s not just focusing on the physical that creates impact. Developing one’s mental acuity is not unlike getting into physical shape. Having a stronger mind is the key to having better resolve and making better decisions in the first place. And schools should not have exclusive rights to that. Opportunities to learn and strengthen our minds are all around us all the time. We need to engage with our surroundings (people, places and things) to take realize the benefit though.

We can’t leave out the social component of well-being either. Using altruism and benevolence as a cornerstone by doing good things for others takes your mind off of your own ailments and gives you purpose. And even if you can’t actively participate in hands-on volunteer projects, you can at least feel you part of the solution by experiencing the joy of giving vicariously through passive attendance and moral support.

What we need is not a society where we look to institutions for the answers – whether it be the government, the healthcare industry or any other. We spend all our time and energy arguing over which institution and which version or it is best for us. And even if we agree, we never even discuss whether our interests are best served by any institution. The thought of responsibility and by association, self-efficacy, is too often mis-interrepted and dismissed as heartless libertarianism. While the personal responsibility calling can go a bit far … so can and has the leviathan of the institutional overlord. 

We need to resist the extremes. Full-on libertarianism isn’t the answer anymore than being beholden to the keeper of the keys of the Ivory Tower. We need to decentralize and deconstruct our current support structure but yet be vulnerable enough to depend on our neighbors and communities. We need to reach out and grab those close to us where we live and help … and allow ourselves to be helped. To do that, we need to engage. And the perfect model for this type of engagement may be only as far as our backyards.

Part 2 will take us into the “life of plants” and how patterning our lives around a model of engagement designed after a rhizome root structure found in our backyards might be the solution to the personal, civic and political malaise we’re presently immersed in. Out on May 16.

If you’re interested in moving on from the status quo that will inevitably take anyone and anything down with it … please check out Community 3.0, my vision of an evolved society where self-efficacy and the well-being of the populace is priority. Or even better email me, at clayforsberg@gmail.com and we can set up time to have a conversation.

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