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.
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 by 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 means 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 nowhere 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.” There 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 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 the clinics with the 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 of 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 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. Invariably 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 effects 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?
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 of 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 ten-hour chemo infusion session only to drive themselves an hour home to two elderly parents and a life of a caregiver … like me. 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. And believe it – there is people out there like me, who can write just as well, who will call you on it … publicly.
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.