An Open Letter on the State of Health Care - My Perspective

2015-01-09 Posted By Jenna

We’ve probably all had a hard day at the doctor’s office or hospital (patients/family members/nurses/doctors/technicians/assistants/clerks…you get my drift) - we all have. And on those hard days, we can probably come up with a thing or two we could’ve said, done or behaved better. Or is it just me? Oh wait, there’s someone nodding their head in agreement, phew! So, yes, we’ve screwed up. But in our calmer, wiser, and hungry-for-a-change state, we need to realize something - today is a better day than yesterday. Each day we are one step closer to a new and improved health care system.

No, no, no, don’t leave! I promise I’m not being naive or sarcastic - I’m just trying to put everything I’ve learned, over the last 24 years (as a “professional patient”), into perspective. I’m trying to do my best to understand my role, and how I can be doing the best job I can, for me AND my health care team - getting me out the doctor’s/hospital doors and back to my life! I know that I can make a difference.

So, here’s what I’m noticing lately…

Patients are being empowered to ask questions (realizing they’re entitled to answers regarding their health), learning how to establish what works for them and what doesn’t, and learning how to communicate with their practitioners confidently and respectfully. Why? So that patients feel that they have done everything they can to give themselves the best chance at becoming the best possible version of themselves - whatever that means to each individual.

We have a whole new generation of health care professionals coming into their chosen fields (and some great ones that have been around the block), wanting to help. They understand the benefit of hearing what the patient has to say. They are working to collaborate with their patient, incorporating the patient’s insight into themselves and what they’ve learned during their training. Training they’ve dedicated years of their lives to, in hopes of helping others. Not to mention, they’re more open in their practice to the different techniques their patients might want to use, so that they can get the most out of their appointment. It is their health on the line, after all!

Not the health care system you remember? Why the change? Well, to get a better understanding of how we got here, we have to take a look back at where we came from.

There have been many evolutions of the health care system. I’m not going to lie, from what I’ve heard - it was a little rocky there at the beginning. You’ve got to start somewhere, but I mean, trial and error is the last thing you want going on when you’re sick and needing help - it’s already dangerous enough when it comes to cooking chicken! From what I’ve gathered, it all started with people learning and building the foundation of what would later become the field of Medicine. At the time, individuals acted primarily on what Science was telling them. But in Medicine’s infancy, the science still wasn’t finished revealing itself (http://comicskingdom.com/mother-goose-grimm/2014-11-12), “‘When I was trained, we believed that babies didn’t experience pain, and if they did, they didn’t remember it. Both of those statements are incorrect,” said Dr. Hatfield, assistant professor of evidence-based practice in the School of Nursing and director of research and evidence-based practice at Pennsylvania Hospital” (Hatfield, 2010). Can you imagine?! It’s like pregnant women not knowing about their breathing techniques that completely extinguish the pain of childbirth (when coupled with breaking the hand of the closest person to her). Oh, and epidurals.

A career in Medicine has never been an easy one, and I doubt that will ever change. It takes a lot of chutzpah to want to go into it. Therefore, it’s not hard to believe that medical staff were revered as, basically, all-knowing and were rarely questioned. Even if someone wanted to, a medical professional’s expansive knowledge of the human anatomy was no match for most people’s. (Even to this day and my longstanding experience in the medical system, I still think they’re making some of the terminology up, and waiting to see how long it takes me to call them out on it. I mean, there can’t be THAT many consonants in any word, can there be?). When people were sick, I’m sure they felt a lot of comfort and safety knowing that they were being treated by a nurse, a doctor or some other medical practitioner. You have to admit, they weren’t, and continue not to be, dummies. During this time, lives were saved and history was made over and over again with so many, what would have been fatal, diseases being cured or becoming treatable.

And then there was the dawn of a new era. An era when patients wanted to take a more active role in their health and recovery. Whether this was because: medical information was becoming readily available to the masses via encyclopaediae and the internet, and they wanted to try to understand what was going on; or maybe they realized the limits of the medical system and wanted to pick up the slack in their health care (a fair bit riding on it…just saying); or maybe they had heard stories from others or experienced dire mistakes made on them, themselves, made within the health care system and didn’t want to be another statistic (if they could help it). Not to mention - TV! How many shows have come and gone off the air detailing one-in-a-million medical situations, learning that it takes three misdiagnoses before the right one is discovered, and practitioners with a less-than-ideal bedside manner. By the way, McDreamy and McSteamy - where are they in the real life?!

Whatever the reason, it became clear that a lot of patients didn’t want to sit idly by, while their lives lay completely in the hands of others, no matter how elite and well-meaning. Medical professionals were now meeting and treating patients who were doing their best, with the resources they had access to, to understand and (maybe) question their diagnosis, prognosis and treatment. They wanted to be a part of the process. They wanted a seat at the table of their life and know that everything that could’ve been done - was, in hopes of optimizing the quality of their life. I’m sure this must have felt a tad unsettling for some practitioners, at first (not the “optimizing the quality of life” part, but the “being questioned based on information found from reliable sources all the way to…let’s not go there” part). How many memes or cartoons can you stumble upon showing patients trying to bring something substantive to their practitioners using the internet, or other material at their disposal? Have you seen this one: (http://www.theshiftofconsciousness.info/fpGoogle.jpg?) Apparently, parts of the medical system still don’t always see the benefit of their patients’ research. The internet may not always be a reliable source on diagnostics (a sometimes pretty big understatement, I’ll give you that) - frustrating to some medical practitioners. In fact, I watched as several practitioners laughed at someone who had come prepared for an appointment with their own internet research. Granted, this was about ten years ago, but laughed at? The system was certainly being thrown for a loop.

The outcome? I’ve noticed a lot of differentpageitis. Practitioners aren’t necessarily seeing the progress in their patients that they expect. A phenomenon discouraging for both patients AND practitioners. It might be because patients are too embarrassed to talk to their doctors about their issues, or that they don’t like a medication they’re on (causing some non-adhesion to their treatment plan). It might be that the practitioners who are too overworked and under-resourced to be able to (want to) take the time to discuss a diagnosis/prognosis/treatment plan in a way meaningful to the patient; a way that the patient can understand the important role that they, themselves, play in their own health. Maybe the patient feels unheard, so he or she chooses to get advice elsewhere (while smiling and nodding in their appointment). Or maybe, there is an unwillingness to give credence to, or an “ignorance” of, the benefit of sitting down with the patient to get an honest idea of whether the treatment plan the practitioner wants to put in place is realistic for that patient, based on their current circumstances. I don’t necessarily mean “ignorance” in a malicious sense, I just think that it can be easy to lump people with certain health issues into one group, even though everything else about them can be vastly different. By the same token, taking advantage of that honest sit-down can take time. I know how quickly appointments can be delayed, frustrating for all parties involved; I also know how waiting for the doctor who listens to you and who is clear that you are his or her only focus in the appointment - is worth waiting for.

Heck, maybe the expected progress isn’t being seen because we’re not working at our best, due to burn-out - making for less-than-productive relationships. Long careers of seeing pain, suffering, trauma, stress, tragedy and sleep deprivation; or being the one suffering, in pain, sustaining trauma, sleep deprivation, feeling vulnerable, stressed, and mad that they aren’t working at their best - unable to showcase the person who he or she really is. Burnout, man - it’s dangerous. How does one cope with burnout (if you haven’t figured out how you can change the circumstances around you or, at least, how you react to them better)? You might just end up trying to get through the day. Maybe a little resentful. Maybe a little bitter. A voice in your head telling you, “you could have done better,” “you could have been better,” “you could have fought harder.” Although, you can’t discount the appointments where the practitioner AND the patient go home feeling like, “WOOHOO! That was a great appointment! What amazing progress!” We all have our stories.

The answer? A cohesive team dynamic. A team that includes the patient, his or her support network and his or her practitioners - participants one and all, determined to their best. First of all, it may sound cliched but the patient is the expert on his or her life. The patient is an invaluable resource. But the patient needs support. We all do. That’s why teams are so important. Each member is going to bring a unique perspective that is going to need to find its place amongst the others, setting the stage to provide the best care for that one patient. For every party’s sake, it needs to be understood that it helps everyone when the patient is on-board with the decisions regarding his or her health - at the end of the day, it’s him or her who has to journey through it.

A dream scenario? I don’t think so. Hard work? Absolutely! Worth it? Ohhh yeah. We are all human, and we are all going to make mistakes. And whether it’s fair or not, the mistakes made in the health care system can mean the difference between life and death. It’s scary. Scary for the patient. Scary for the patient’s support network, who are protective of the patient. Scary for the practitioner entrusted with the life of the patient. But if we don’t aspire to greatness because of fear - fear of what’s happened to us, fear of what obstacles we face now, and fear of what’s to come - what’s the alternative? Can we really feel that we’ve done our best, when something isn’t working the way it could and we haven’t tried to make some changes?

I refuse to believe that we are so scared of what might happen, when there’s a possibility that something better might be desperate to be discovered. Can we really look at the health care system, and not know that - no matter how small - we can make a difference? We have to make a difference. Not just for our fellow human beings that need support right now, not just because finding new ways to approach health care can be more effective and less expensive, but because - it might be us or the ones we love, some day, needing the help, the respect and the dignity the health care system should offer.

Pat helps children express their concerns and offers them techniques to manage anxiety during the procedure. For MRIs and CT scans some kids like listening to music or stories, and others prefer daydreaming. For IV starts, Pat teaches children and their caregivers distraction and relaxation techniques…Helping kids experience mastery over medical procedures is her goal, said Pat. Preparation and medical play help them and their parents cope with the overall healthcare experience. Parents with little medical background can learn language and techniques to use at home…He [Diagnostic Imaging’s medical director, Ronald Cohen, MD] pointed out that preparing children to be sedated for a Diagnostic Imaging procedure can be an ordeal. The child needs a physical exam, may need to go without food till the procedure, may need an IV for administering the sedating medication and needs recovery time afterwards. “It’s a lot of time and a lot of expense that can be avoided if the exam is performed without sedation or anesthesia,” said Dr. Cohen (Frasca, Pat and Cohen, Ronald).

We need to trust each other, again. Trust our skills, our intentions, our strength, our resilience, our ability to be stronger working together - not apart - patients and practitioners, alike. No matter what mistakes we’ve made in the past, we need to learn from them and move on. I know how easy it is to let the past harden you. We need to keep evolving with the health care system, even if it means just being a little more open each time we face it. I think we’re getting there. I know we CAN get there.

Or am I insane? Don’t answer that. Just kidding, let’s hear what you think! But before you do, take a look at Kellie Haddock’s story (https://www.youtube.com/watch?v=SwKyauE_l-k). Every time I watch it, I can’t help but have a new resolve to do better (I could let what I’ve been through make me bitter, defensive and uncooperative, or I could learn from the past and have that help me get a better grip in the future), be honest with my health care team about how they can better help me, and thank the ones who do treat me with respect and dignity.

Frasca, Pat, and Ronald Cohen. "Child Life Prep Reduces Need for Sedation." Children's Hospital Oakland. UCSF Benioff Children's Hospital Oakland. Web. 26 Dec. 2014. .

Hatfield, Linda. "Research Examines Whether Babies Feel and Remember Pain." Penn Nursing Science. Penn Nursing Science, University of Pennsylvania School of Nursing, 16 Aug. 2010. Web. 26 Dec. 2014. .

"Life Was Perfect When Her Son Was Born. 14 Weeks Later, Everything Changed." The. 1 Dec. 2014. Web. 7 Jan. 2015. .