A Crazy Few Weeks

Hello all!  It’s been a crazy few weeks with lots of stuff going on behind the scenes here at Tupeak Hope. The planning stages for becoming an official non-profit have begun and networking is well under way in order to attempt to garner support and of course funding in order to make this happen sooner rather than later.

I am committed to making this dream become a reality in order to help bridge the gaps between patients and providers as well as to become a resource through which the proper services can be connected with those that need it most and may not be aware of how to find resources in their area of need.

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A Note to Providers About Professionalism

Professionalism goes a very long way in patient relationships. Even if you don’t feel compassion, sympathy or empathy for your patients the fact that healthcare is a business and good business requires good customer service, I strongly suggest you learn how to at least fake it and fake it well. Openly doodling and blatantly leaving it for your patient to find does not instill a sense of professionalism a provider should hope for.

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Time to Talk – #AtoZChallenge2018

Time is a finite thing when it comes to our lives regardless of whether we are healthy or ill. None of us know how long we will have on this planet before our time is up. This is a fact. Also a fact is that while many of us do not wish to talk about it we really need to be having the difficult discussions with our family about what we )and they) may desire should either become unable to make or communicate decisions regarding their medical care on their own. Continue reading “Time to Talk – #AtoZChallenge2018”

A is for Accessibility

 

When thinking of the topic of accessibility most people tend to think in terms of physical access in public spaces. While this is definitely a legitimate and very important aspect of accessibility and one with which many people must contend, I would like to broaden the consideration of accessibility.

 

Think, for a moment, of the individual with health insurance, but without dental insurance. The age of this person is irrelevant in the aspect that it could just as easily be your 18-year-old brother, sister, or cousin just as easily as it could be your middle-aged or elderly person, be it a stranger or a family member.

 

Let’s say, for the sake of this discussion, that this particular person has a health, medical, or dental condition that precludes them to very soft teeth, resulting in cavities, which left untreated begin to erode the tooth. As much as they might want to seek dental care it is nearly impossible while living paycheck to paycheck, and simply trying to pay enough of the bills to escape being homeless, and occasionally even eat a little bit.

 

Even with stellar credit, most healthcare providers, which can and should include dentists (among other professionals), are reluctant at best to provide any services on a payment plan unless it happens to be through a pre-arranged third-party credit provider. Even then unless you have superb credit and typically a large amount of cash for a down payment, you may easily find yourself out of luck.

 

Okay, let’s assume one is able to ignore the pain of the cavity as it continues to grow, and as time goes it further erodes and weakens the already damaged tooth until you can no longer simply ignore the pain. As the pain worsens you feel what seems to be a lump on the side of your face in the area of the tooth in question.

 

Unable to manage the pain anymore you visit your primary care physician who, while sympathetic, explains that there is little he can do to help you short of possibly writing a prescription for antibiotics. They further explain that the antibiotics may well solve the immediate problem of the infection, but as eroded as the tooth (or maybe even teeth at this point) is the only solution is to have it extracted.

 

You explain that you don’t have dental insurance and the wait list for any type of so-called reduced fee care is a minimum of a 12 to 18 month wait, and that you must have a few hundred dollars up front as the dental students will do the procedure of the extraction for free through the teaching hospital or dental school, but the cost of the supplies for anesthesia, local or otherwise, are not included in that service.

 

You’ve already lost time from work to visit your PCP, but you forego paying a bill to fill the prescription for the antibiotics hoping it will buy some time. A period of time goes by during which you think maybe, just possibly, the nerve has killed itself or otherwise been damaged beyond repair as it no longer hurts like it did. Then one day while at work you notice a vague pain in your jaw, very unlike the previous infection, but you also notice that when you look in the mirror there is noticeable swelling on the side of your face where the pain is.

 

Unable to afford any more time off from work you decide to simply take over the counter pain relievers. They work for a while, at least a little bit. Eventually, as time goes by you feel generally ill. You no longer smile at work because the broken teeth are visible. You withdraw from family or social functions because you are self-conscious that you will be judged harshly for the state of your teeth despite still dutifully brushing what’s left of them two or three times per day.

 

One day you become so ill that your boss takes notice and sends you home stating that you can’t return to work without a physician’s note stating you are cleared to return to work. You’ve tried for months, maybe even years, to get the dental situation remedied, but there are no resources to help you since dental is typically considered “cosmetic” by many.

 

Eventually, you resign yourself to the fact that you now have no choice but to go to the emergency room, where you are promptly admitted for not a simple tooth abscess. You think to yourself that while this is not ideal, you will deal with being in the hospital for a few days worth of IV antibiotics.

 

The admitting doctor explains to you that this is no longer a simple infection. It has progressed beyond your mouth and jaw. For that matter, it has progressed beyond your head and neck. You are being admitted for sepsis, which when untreated can result in life-threatening and yes even fatal consequences.

 

My question to those reading this is how can this happen in the United States healthcare system, which is often touted as being the best in the world? What does it say about us as a society that we will let people suffer until it becomes a life-threatening issue, and then we’ll step in rather than offering them a hand when the rest of the consequences could have easily been prevented?

 

There are no right, wrong, or simple answers to this, or many of the topics I may bring up. Rather they are designed to make us stop what we are doing, think about the other point of view, and ponder what we can all collectively do together to change things. Don’t think this can happen to you or someone you know? Think again for it happens regularly and more often than you would like to think.

 

What are your thoughts? What can we do as either the patient or society to prevent this from happening?

Invisible Disabilities NPR Article

I originally came across this article via NPR a year ago, and shared it from my personal page. Today Facebook reminded me of the original share, and I realized that it is still just as true today as when I shared it originally, as well as when NPR first published it in March of 2015.
Last night I had a conversation with a friend about the importance of the evolving field of palliative care, in that it is no longer for strictly terminally ill people on hospice care. The field of palliative care medicine is changing rapidly to include quality of life issues, as opposed to strictly end of life care.
But I digress. While I plan to cover the palliative care topic in a future post, this post is focusing on invisible disabilities and the challenges faced by those who have been diagnosed with them. I am one of these people with an invisible disability. If I happen to be having an extremely good day and am able to ambulate even a short distance without my cane, the only obvious sign of anything amiss would be an altered gait.
I regularly encounter dirty glances, stares, or even outright accusations of faking when someone sees me get out of a vehicle in a handicap accessible parking spot. This is regardless of my ability to ambulate, or even when I must resort to using a wheelchair for mobility, as I’ve had to do off and on for a great many years. It is worth noting that the days where I have an obvious assistive device such as a cane, walker, wheelchair, etcetera, I seem to get the questioning looks less frequently.
But if I have a good day and try to go to the store and not use the cane, I notice I seem to get more stares and sometimes downright nasty looks. I’ve had both the general public as well as occasionally employees of a store I am patronizing question me as to my right to use the accessible accommodations afforded to people like myself under the law.
I’ve even had numerous occasions over the decades, where what I can only assume was a well-meaning citizen actually called the police to complain that I had abused a spot that someone else could use. While these situations have always worked out in my favor with little more than embarrassment at the fact that I was stopped and questioned in a public venue by police, this is not something that I should have to endure.
Granted, I would rather deal with a polite, respectful agent of law enforcement tha  an irate, confused, or misinformed citizen who is not willing to be open-minded. However the fact remains that there are procedures for obtaining the privileges afforded to those with disabilities under the law, such as disabled parking placards, or license plates. As such, while I am sure abuses do occur, and I have seen it firsthand where a family member may use a disabled person’s vehicle or parking placard, I’d like to believe that this is the exception, not the rule.
It’s a shame….
The fact remains that if people can’t see an obvious disability, the typical reaction is that a disability doesn’t exist. It’s a shame that we’ve become a society that is so superficial that we either can’t, or won’t, take the time to look beyond what the eye can see. When will we finally begin to give our fellow human being the benefit of the doubt? When will we, as human beings, take the time to get to know more about someone who may be suffering with an invisible illness? I’d tend to bet that most of us know at least one person in our lives who struggles with some degree or form of an invisible disability / illness, that we may be very surprised to learn that they are dealing with.
 
We have become so entrenched in our own personal rat-race of life, work, and family that we often fail to notice or even care about the existence of such disabilities in others. This often holds true, even to those with whom we would consider ourselves close.
 
What are your thoughts on how we can try to change this?
 
Read the article below for more information by NPR:

People With ‘Invisible Disabilities’ Fight For Understanding

Zebras #AtoZChallenge

Zebras     #AtoZChallenge

There is nothing more frustrating as a patient than having a provider look at you and summarily discount your symptoms as ‘impossible’. It is very common that we are hesitant, even afraid, of that which we do not understand. It is also true that those trained to diagnose and treat us could and should be held to a higher standard.

It is to them we look when our body revolts against us in ways which we do not understand. It is them to whom we turn when we feel our body couldn’t possibly be destroying itself as it seems to be doing. It is our physicians we look to for an answer of that which we cannot make sense of on our own. And that is how it should be for they are the ones with years and years of education and experience upon which to base their examination and diagnosis.

However, when learning the science of medical care, they are often taught to think of the most common diagnosis first. While on the surface this makes sense, oftentimes they fail to diligently pursue our entire history and symptoms in order to make a proper diagnosis. As with anything in life one must take into account all pertinent information in order to make a proper determination as to what is happening.

A phrase often used early in one’s practice of treating other human beings is “when you think hoofbeats think horses, not zebras.” While this may work in the majority of cases, I assure you that it does not work well in every scenario, nor should it be expected to. A better way to phrase this lesson would be “when horses no longer make sense, start thinking zebras”.

Frequently when a physician actually takes the time to perform a full and complete exam and history they are left at a loss as to precisely what the cause may be in their more complex population of patients. That is because those of us with complex medical problems do not present as the typical patient. Our symptoms may not even make sense presenting with each other. Nevertheless, we are very real and so are our symptoms. We deserve to be believed and to have our complaints and symptoms taken seriously regardless of whether they make immediate sense or not.

Both when working in patient care, and while being a patient, I have encountered too many stories of people suffering for years prior to receiving a true and accurate diagnosis. While it is true that sometimes a proper diagnosis eludes medical science, it is also true that sometimes when a diagnosis isn’t readily recognizable, we as patients suffer. Sometimes we suffer needlessly when just a little perseverance on the part of our medical professionals would provide an answer. Other times a diagnosis just isn’t possible.

My suggestion to medical professionals is to be willing to consider zebras when horses no longer make sound medical judgment. Don’t be unwilling to consider the obscure. Be more than willing to advocate for and on behalf of your patients right to proper diagnosis and treatment. Above all else, do no harm. For when you dismiss us, you are often causing irreparable harm physically, medically, and emotionally.

Do you have a story you’d like to share regarding a challenge in obtaining a proper diagnosis or treatment? Please share with us in the comments below.

An Interesting Perspective on Delirium…

On November 19, 2016 I shared an article on the importance of preventing, recognizing, and appropriately treating the effects of ICU delirium in patients. The article I will reference now pertains to delirium, but not in the typical sense. It addresses the same topic of delirium, but in a different light. In this article the author, who is also a physician, discusses in-depth the potential for delirium in an inpatient setting, which he himself experienced.

Delirium can manifest in a variety of ways and severities, and this author does a phenomenal job of explaining just how easily it can happen, to any of us. It can happen regardless of the severity of the issue which put us in the hospital in the first place.

I particularly like the fact that the topic of training caregivers through real life experience is addressed in such a practical way. Back when I was still working EMS, we routinely challenged students and new EMT’s and paramedics to experience many of the same treatments we would provide to patients. These exercises often included being secured to the stretcher and going for a ride on a rather curvy and bumpy road within our jurisdiction. While seemingly an innocent and simple experience, it often resulted in them sharing a newfound understanding for what the patients we encounter must go through. Even on the smallest scale, this is an improvement over understanding gleamed only from a textbook.

See the original article by physician Robert Pearl, M.D., originally published on Forbes by following this link: “It’s A Wonder People Survive More Than Three Nights In A Hospital”. It is well worth the time to read!

Share your thoughts below, and let us know if you have experience with this phenomenon.

The invisible work of a patient…

The following article is a well thought out and articulated approach to the shifting of demands on the practitioner to that of the patient. It also addresses the fact that patients labeled as non-compliant often may simply be overwhelmed. The stigma attached to the concept of noncompliance often infers that the patient is willingly making a conscious choice to be noncompliant. Where in reality, the patient may simply not have the knowledge, expertise, or resources to manage what has been thrust upon them.

We all, regardless of whether we are a provider, a patient, or a caregiver, must be cognizant of the shifting responsibilities being placed on patients and their caregivers. While I am wholeheartedly in favor of patients being an active partner in their own healthcare, they are unknowingly assuming more and more responsibilities. In the process of the responsibility shift, the patients are getting less and less time with their actual practitioners, leaving them with more questions as to their own care.

See the original video and transcript from NEJM Catalyst here. It is worth the ten minutes to become aware of how our healthcare system has evolved. It doesn’t matter whether you feel these changes are positive or negative, they are here. By arming yourself with the knowledge, hopefully, you can help prevent you or someone you know / love from falling victim to being overwhelmed.