Healthcare, two words that separately seem so easy to describe, define and interact with. Mention those words in your daily conversations and it seems most groan, either in pain, disgust or pure panic. What is this thing called “healthcare” today? I can tell you, as a disabled woman, there is little “care” in health currently. If I had not already felt that way tending to my own health, dealing with the escalated level of medical crisis my children have, obtaining the “care” portion of the word healthcare feels nearly impossible.
I used to believe that obtaining good healthcare was made simpler, easier to access and maintain if I was a smiling patient and/or patient Mom. I felt if I walked into practice or facility and staff generally smile, you most likely were in a place that would perform as bright as the smile you first saw at check-in. How terribly wrong that initial thought has proven to be.
All of my childhood lessons my parents so diligently taught truly undermined my perceptions of how to manage relationships that had any ties to health services. I hate the word healthcare as it exists in the United States today. Smiles are not enough, initial friendly tones can utterly mislead you and stealth is a primary tool I use when interacting with all things medical.
When you hear, “no man is an island”, there are many interpretations of it. What many typically agreed on is people need people, no matter how much we try not too. Although it is possible to prosper without others for a period of time, doing so without other living things is not. Even an island itself is living technically. So accepting we need others in varying levels and building relationships is vital to a prosperous, fulfilled life.
My parents certainly believe that. Even though my father is as introverted as my mother was extroverted, presenting yourself with a smile first was stressed. My parent’s strong belief was, that when that first contact takes place, a smile was enough. They felt it communicated the appropriate level of politeness society was acclimated too. I have carried those thoughts through the years, with very little reason to believe there existed any need to revise that.
When my now ex-husband became ill, I unknowingly embarked on collegiate level education on establishing relationships in healthcare. I have learned, very painfully at times, a smile is not enough for current day society and certainly not enough in relationships occurring in or about medical environments.
Technology today greatly reduces the need to actually interact with another human face. So it should be no surprise, entire populations in the workforce have simply lost the people skills needed. Automated and foreign medical call centers further pollute the function of direct relations. It is entirely possible to go through your entire medical life speaking only to a nurse, a doctor and a pharmacist. E-visits create even more disconnects. Making the in-person exchanges very high stakes. It takes so much more than my old dependable smile. As much as it was initially unsettling to admit to myself, a smile is no longer enough for me either.
We are all wired to fall back to childhood teachings. Each of my parents took time to teach the importance of making eye contact and smiling when speaking to someone. As a child, My Dad’s introverted nature made a simple smile feel against nature.
He was honest about that and communicated the effort was important and did assist him to obtain better personal outcomes professionally. Not that he is unfriendly, or feels annoyed by other people, it’s just those impersonal exchanges required more emotional energy and came less fluid to him. A bit more difficult than someone who is ready to strike up a conversation about how the light catches your dog’s bling collar, in that perfect hue of orange during sunrise. Would you hate me if I confessed, I have done that more than once? Obviously, I need to get out more. Constant hospital admissions make social life a bit starved—sigh.
Being that my father would prefer to discuss testing chemical equilibrium parameters than interpreting social interactions in environments that were unfamiliar. Anything past initial introductions was left to my Mother. Her guidance was very basic and later I came to know, where she shined was when there were common interests or circumstances where organic connections pre-existed. For example gatherings for families who participated in Christmas concerts at church were easy events for her to socialize successfully. She migrated to anything where task-focused conversations allowed for easier ways to relate. A demonstrated skill and great information to use in life, even if applied differently.
Walking into a room of strangers, with nothing to do but enjoy the color blue, and walk away with prospects of a lunch date later for herself was highly unlikely. I, on the other hand, am completely comfortable walking into an empty room with nothing more than lint balls to observe. I will initiate and talk to others and leave with a published book, 3 completed art portraits made of lint balls and 4 lunch dates to further discuss the rate of decay in Asianic prune trees. Yes, I just said all that in one grand run on sentence. Relationship skills taught during my childhood focused more on people my parents knew and were comfortable around.
Knowing how to navigate the pitfalls of relationship building at your physicians’ office were more of an afterthought. However, I was more sickly and my mother struggled to navigate and manage those harder interactions. She became proficient for herself during her years of battling breast cancer. I remember observing and listening to her discoveries as she approached her final and well-earned rest. She was quite animated when it comes to appreciating good relationships. I can even recall her drilling me on the proper spelling of grateful. She would say, “how ridiculous to write on a card I am grateful for your help and grateful is misspelled? That’s not grateful!” I was so glad I had not tried using any words I could not spell in cards for her as a young child—yikes. I was annoyed to no end back then, but she was right. I have not abandoned that teaching. So much of what my parents taught have real impactful places to be applied. Where there was lack, was in regards to managing high stakes daily interactions. All those moments where you have never seen a person before, may not ever see them again, yet everything rides on how you handle that initial exchange.
Any part of life that has to do with medical health, medical insurance, billing, related administrative forms, all the way to the person scheduling a mammogram, fall into that category of high stakes interactions I reference. In healthcare, at first, you do not know if the woman checking you in at the medical reception desk is a person you will end up seeing twice a week for 6 years. You have no idea, the nurse who asks the first few medical history questions and wanting a list of symptoms to start with, She will end up being a person who intercedes on your behalf. And knows he is tor who is too busy or fails to read a full message and therefore, you don’t ever quite get all the needs addressed and have to come back for more office visits. You will not know initially the stupid parking deck attendant that coldly and robotically asks for your ticket, ends up being a person you must deal with every day for 3 months straight, while your child undergoes treatment. How could you possibly know a day will come where you’re in such pain you lose your purse and have no ticket, no money nor ID to handle a $10 parking deck ticket. Your too sick to walk back up to Dr’s office and too overwhelmed to remember the backup codes. All of these examples are actual situations I face in current day life, disabled, sick, and with very medically fragile kids. These indeed are the high stakes relationships, that you can not, must not, make early missteps with.
I have learned the unique approach relationship building in healthcare requires, if you want to get the most help, be given the most options, experience fewer administrative medical errors, and just overall better outcomes for those suffering. Without exception, a smile has not been enough in managing our ongoing complicated crisis situations. Yes, a smile is still powerful. However, best to add to that simple behavior, many more pro-active ones and get from where you have been to where you would rather be. My boys and I have had some areas of improved health as my skill in healthcare relationship building have become more successful. I do remind myself very often, “Hey Pamela, do more than just smile when you go in there today, be actively mindful in there girlfriend”? (insert finger snapping sound effect here). I do have the advantage of having close to 17 years of high-level medical background and although I did not perform in clinical duties, everything I touched was. Much of the strategy healthcare systems use was a daily meal to digest and crisis management was high on the to-do list, whether an employee issue at a practice, or a stalled contract negotiation. Policy formation to cost-cutting through pulling out whole departments to third-party employers. In a hospital, three nurses at a desk may also work for three different healthcare companies all with a different set of objectives making unified treatment a hidden challenge unknown to the patient in the bed and overwhelmed parent just trying to get answers.
Relationships are hard. Social networking sites offer truly comical relationship status tags. Some, no matter how many times I read them, still make me roll my eyes within myself (eye rolling outwardly is infantile). A few make no sense to list, such as it’s complicated. What relationship is without complications? One that caught my attention last week was, “undecided” and another, “happily divorced”. I would argue anyone undecided about a relationship status is more a, “not sure I am into you”, or “maybe if I am bored and desperate at the same time” mindset. However, deciding how deeply you want to invest in something, I can appreciate. Determining investment levels, personally speaking, is the most exhausting piece. The ongoing evaluation of what works, what doesn’t work. Deciding where to direct attention and the process of gut checking, making sure to realizing if too much damage is being done or been done. That question of, am I getting enough positive input from this, as opposed to being overly drained. Are both parties depositing into that relationship bank, regardless of what that bank manages? A hard task indeed and this, of course, is an overly simplified outline. Even in the best circumstances, reaching a final decision is a challenge.
When these decisions are directly related to your health, or the health of someone you love and care for, the stakes could not be any higher. If you consider yourself to be bad in relationships, consider this area as something you can not afford to fail in. When being bad in relationships equates to tuning out to the fact your Dr has a habit of failing to follow up after labs are drawn. The danger and risks creep into your bed snuggling in for the winter. You are dancing in the dark with a roving leopard, waiting for weakness, and the first moment your eyes close to rest, it quietly explodes. That abnormal lab, showing signs of a swift-moving disease rages towards the point of no return you blissfully and ignorantly worry about missing your golf tee off time. No one can afford to neglect the healthcare relationships in their life and the number of those potential relationship holes grow in tune with the number of medical services you require.
Today, as I write, my success in managing my family’s’ never-ending crisis, has been tending to the mostly forced relationships created surrounding our medical care. Those relationships, as oversimplified as this may sound, have been directly impacted by the understanding of the value of a smile. Not just the value of my smile, but truly knowing it is not enough in any of our healthcare environments. The smile I offer to them, and the smile they offer to me is not a sufficient measuring tool, on whether those connections are healthy themselves. Interesting spin on healthcare. Ask yourself, “Are my medical relationships in good health”? Do you even ask those questions at all? If not, you are in jeopardy of being one of those people I see numb with the consequences of having made assumptions. The staff is smiling, I smiled so all is well. Most hospital admissions, I come in contact with, at minimum, one-to-two families who grumble and agonize over what to do when the high stakes seemingly one time interactions with providers has blown up. That relationship so dysfunctional the parent or patient has no idea where to go next. It has ended in death for the child of those stunned parents. In March 2017 I sat with a family who was a mixed Spanish and English speaking. There were enough English proficient family members that language was not the issue. However, misplaced trust, well-meaning, and mislabeled friendliness turned tragic and it hurt to hear, “if we had only met you sooner Ms. Juers”. I hurt for this family and it was needless suffering for all. Healthcare/Medical relationships are as vitally important as the spouse you choose, school you to go to, the mortgage you sign, and Life Insurance policy chosen.
I wish I always got it right myself. I absolutely make blunders and spend too much of my time fixing things that no one ever intended to do wrong. Those are the most frustrating because everyone tried so hard to avoid problems and both sides walked hand-and-hand down the ditch of being ditsy. But knowing a smile is not enough and spending the energy to offer sincere help really improves things. Adding to those qualities, I utilize my ability to be friendly, polite, teachable, accountable, assistive, patient and biggest of all, willing to teach. Our medical situations are far more stable, safe and productive. Our healthcare interactions and relationships are not perfect, but better for sure.
Now before you say, “Oh come on, she is bragging about herself”, I understand. There really is something to be said by enduring the unthinkable. It forces growth of one kind or another and when faced with an obvious perpetual situation, it’s urgent to capture and contain rogue destructive behaviors. I can’t claim I get all that done, at the same time, in unity every day. But with consistency, I try very hard to demonstrate that range of each individual contact as I navigate our healthcare.
I have met so many cranky rude check-in clerks at physician practices, that I feel like bringing in the proverbial “eggs, and tomatoes” treatment. We have sat on the exam table of doctors who never once look up to make eye contact themselves, nor shake your hand or introduce themselves. I do think through if I should walk out of those appointments especially if that physician is not on call, was not running behind and whose staff made no attempt to explain behavior. I have received calls from “patient financial counselors”- glorified bill collectors, that seems upset you are “forcing” them to do their job. My oldest had a lab technician rupture an upper arm muscle pulling a band too tight and when we complained she called him a baby. No worries, she was fired and lab shut down and yes I had something to do with it. Not the first and won’t be the last.
My point is if you want to find your way to the best providers and away from the worst ones, positive interactions are vital. I have received tips on who to see, or ask for, and sometimes even who to avoid. Child Life Specialists at our hospital have placed favored items of the boys in their room waiting when they come in for admission. I make an effort to connect. It is hard but important. And I do get the short end sometimes and become wounded by careless providers and staff. It hurts and does take a bit to recover. The alternative is worse, so suffer the setbacks you must. Oh, somehow I have turned into Yoda, my apologies.
If I had to highlight, the single most trying part of healthcare relationship building would be balancing my rage against my grace and sympathy for overburdened medical staff, physicians included. There are so many moments in which I have to decide, go in for blood, in addressing real, solidly provable mistakes and mishandlings, to a gentler, more supportive “feedback”. I find it the most mentally taxing part. I feel that way now, because it is a crapshoot, whether you will see positive outcomes for being forgiving of your medical provider and facility staff, or if you will get a preemptive aggressive response completely cold to your obvious attempts to be cordial. All because they sense risk and want nothing to do with any accountability that measures them as having failed.
It exhausts me to have taken the extra energy to remain in control of my behavior and emotions, just to be nearly pummeled into extinction by indifferent healthcare entities. It is cruel for them to exact that cost as my children and I suffer the ongoing crisis. Be prepared to also be financially blind-sided when they enthusiastically level thousands of dollars to your credit. Some use deceptive smiles upbeat tone of voice and feigned friendly approach to gain their objective. Its hard to be united and fix something that already went wrong, or to also get the help or treatment the first error denied. Unfortunately, some agencies and medical systems function by counting on you giving up. They send mixed messages and contradictory letters to gain an advantage. If you have ever received a denial letter in the mail that states you have 10 days to appeal but is only delivered to your house with a day or two to act. They use strategy and craft webs to land their prey. Sometimes you go through all those efforts just to have what you were fearing and trying to avoid slam down as painfully as a car door slamming on an already sore finger. Most of us know that pain and I cringe just typing the words.
For instance, Cardinal Innovations is currently the Mental Health management agency used for Medicaid in NC. They are infamous for systematically and arbitrarily denying services. They are so profit-minded, regardless of their not-for-profit status, local legal children’s advocacy groups hold training sessions in how to obtain services. However, there are reports that CEO is paying himself 4-6 times the legal limit. The source of pushback comes from very few sources and all those tied to money. I have spent dozens of hours jumping through hoops to submit everything required.
Even when I use a controlled approach to stay functional and non-confrontational, they act in intentionally evasive manners. Making it impossible to acquire that balance of positive relationship status. In the end, decisions are retribution decisions, denying services and will document a note with a target on your name. It is exhausting dealing with large agencies given too much power that are sources of abuse in health care navigation. However, as trying as organizations like that are, I can not let down my practice of building relationships first and keeping my end of the honor code intact. In the long run, I benefit by keeping my eyes and ears open for solutions not willingly offered by parties failing on the other end.
I can assert, when events unfold in that manner, rarely does it work to continue to problem-solve with that entity. You will be further victimized and it might result in you or a loved one’s death. I have written an entire article that was published about failure, and let me say loudly, “failure is a potent elemental component for future success”.
Medical providers fear failure is really a cowards stance. If medical providers and their systems could see failure as anything but dollars lost, more would be learned and fewer lives lost. Should you come across the rare type of provider or medical facility that has that openness to feedback and who extends a learning hand, grasp tightly. Have steady ongoing pressure that communicates, “I am here with you”, and a big dose of shared hope. Look for signs of loyalty to you and repay them in kind. Even as I say that you can not fail to be vigilant. I have been stunned too many times when once good relationships sour suddenly because new people move into positions who do not share your history and come with an ax. Sometimes those individuals regret it, it’s happened a few times, but generally, the romance is over and any dramatic break-up scenes a waste of time.
To be truly successful, and protective of my family’s well-being, I do my best to be prepared. I have and will leave/fire a provider, cancel a procedure when my gut tells me something is off, question a medication prescribed or stopped, inquired on a test overlooked and opted out of costly evaluations not truly necessary either for myself or children. Unfortunately, some providers will start ordering all kinds of things to milk the Medicaid system. It is disgusting and destructive. Knowing when to get out of that dysfunctional relationship is dicey and insurance restrictions make that endeavor very difficult. I keep my holsters equipped with smiles and approachableness but strap to my back swords of exactness when careless, predatory healthcare providers or medical services agencies endanger my family with unprofessionalism, deceit, fraud and mishandled treatment practices.
So now we are at the beginning, trying to figure out where to begin building those relationships. Let’s revisit the conversation about the grumpy check-in clerk. With someone who is just flat out cranky and I can’t discern if they have a rude demeanor or if they are feeling hurt that day, I will use relatability to attempt to bring them out of the stress that is causing the behavior. Usually, women have pictures of family or pets. I will mention something that seems important to them. I show I care about their life, their day, their family or be gentle and say “hey are you ok, seems like the day might have beat you down a bit”. I know, total cheesy line. But listen, connecting to someone on a more personal level can win you a “contact friend”. Tanisha was that cranky over-worked staffer who is now a person who I interact with on more of a friend level than impersonal one. If you can successfully change the course of an interaction, that clerk will remember you and give you better service.
Recently, John was too ill to stand in line and I was too swollen to stand myself. Tanisha saw us get off the elevator, said Hey Ms. Juers, I got you”. I waved, said “bless you child”, and sat down grateful for both of us. The family who came off the elevator 4 minutes later got no such service, were quite rude to her and mumbled about her to the next 3 families who came in. When I left I actually told her I was apologizing for that family and hoped she knew she was a great person. One example of dozens. So although a smile was a good start, she was not looking up when we first met, so pulling her in gently through what appeared important to her, broke the ice, to waters of a healthier start.
I am no expert. Some of this I know works for me, because of who I am, and others are successful with their own approaches. I do know that taking time to tune in can yield some surprising results and for people who are constantly faced with a crisis, having any extra checks on your side is kinda great.
I do absolutely live with a mindset to present myself to start with a smile. In my mind that is as normal as placing one foot in front of the other. When I’m tired, my feet get heavy. When the boys and I are sick, shackles develope, stress and strain put locks on those shackles, and financial hardship turns shackles into cinderblocks. So if you can unlock some things with smiles, I am going for it. But I also know, a cute smile at the front desk does not mean my children or I am in good hands. You do need a very solid plan on how to approach the healthcare relationships your life requires. I developed a strong sense of self-worth through the trials of my life. A powerful place to come from when insurance companies and healthcare systems feel entitled to cap my value far below their profit lines and yearly bonus checks.
Relationships are built on placing a face with a feeling, and a place with an event. Medical/Healthcare relationships are no different in that there must be two active participants and are nearly as intense and intimate as you might associate with and a continuous cycle that creates loops of positive reconnections. Through heartbreaking failures, near death medical errors, mishandlings of records and vital administrative communications, to offensive behaviors of staff towards my children, I have learned to take charge of the pace and direction of the relationship in and around our healthcare lives.
Speaking of showing gratitude, I am grateful to everyone who is allowing me to literally think out loud and jot down some of the ramblings the boys and I live, here in this blog. I realized last night somehow I was feeling pressure to produce these perfectly presented blogs as if I have been doing it professionally for years and must meet deadlines.
It means a lot to share what I carry all the time and often sit alone in waiting rooms wondering, does anyone, anyone at all care what I am facing, thinking, feeling today. Does anyone consider how scared the boys are each time the doctor tells them they must be admitted again? Or how panic I am because admission mean painful cots that swell my spinal cord and legs that swell to the point of seams popping? People act as if the fact we do it monthly makes us impervious to the pain, isolation, and fear. Just because it has become a baseline for us, doesn’t mean we are okay, or that the crisis, no longer is a crisis. That is what makes other people feel better about tuning out I find. So please believe that if you are reading it touches me, and lets me know all kinds of people care. Of course, they do! I just don’t know them yet, that’s all. And I will find a way to be okay with that for now.
So if you open a blog one day and all you read is, blah, chocolate, zip lock bags, nap time, with 18 lines of cccccccccccccccccccccccccccccccc, I have fallen asleep on the keyboard or lost my mind and sleep typed my shopping and to do list together. Hey, a non-professional Mom blog is allowed to do that. Do you think it would be okay if I posted nothing but a list of “don’t you hate it when”, from all the mothers that get together in the hospital? Not sure it would be read-worthy, but it does have great therapeutic value. Thank you again for your support all the way to the end. Today was a hard day for us and there were additional emergencies. The children have asked to post something. I have no idea what. A little worried honestly, perhaps they have some dirt to share about Mom’s late night CMT Dallas Cowboys Cheerleader binge-watching, hmm. The sharing is helpful, the listening is awesome, and together I am convinced we will heal.
I welcome your questions and will attempt answers if I have them. I am building a network for others like us and determined to connect the right dots. For more guidance on your specific healthcare relationship challenge, many resources exist to start you on a path to better outcomes. Local agencies frequently offer free workshops to assist families when frustrations and dead ends are all you find. I am also working on creating a talking space here on the site so we can all learn from each other.
© Copyright 2017 Pamela Juers and Angels of Our October. All rights reserved.