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”

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

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.

We Are All Dying…

Most of us go about our daily lives oblivious to the dangers lurking all around us during nearly every second of our seemingly routine and maybe even mundane existence. While some of you may well find this post to be morbid and unnecessary. I assure you from personal experience on multiple levels, many of them personal and very close to home, this is a topic that must be addressed.

This is a very difficult, yet sobering and absolutely necessary topic. The hard truth of life, is that we are all dying a little bit every day. From the time we are born, we are in effect, also on the path to our inevitable death. Sure, we don’t have an expiration date stamped on the bottom of our feet, nor should we live life in fear of what could happen to us, or how and when we will die. However, we certainly must be aware that horrible things happen to good people each and every day. While we must not allow ourselves to live in fear of these life changing events, we also cannot afford to bury our head in the sand and pretend that they simply do not exist, or that they only happen to other people, not to us.

As a result, it is important, at all times in your life, regardless of your health, age, or even socioeconomic status to have this discussion with your family, your spouse, and even your children if they are at an age appropriate to have this discussion. Most people I’ve talked to consider including their children in this discussion only  when they reach the age of adulthood. However I will leave that decision up to you, as I believe that it may in fact vary upon your personal situation and circumstances.

It is imperative that in the event you are unable to speak for yourself that your family is aware of your wishes as to how you wish to be treated medically. For example, do you want what are often termed “heroic measures” to be used in an attempt to save your life? These can include cardio-pulmonary resuscitation (CPR), being placed on a machine to breathe for you (ventilator), and more.  Or would you rather be permitted to, as some have called it, “die with dignity”. Do you want antibiotics to cure an infection? Do you want a tube placed in your stomach to deliver nutrition in the event that you are unable to take nutrition orally?

You may be sitting there reading this asking yourself how in the world you can begin to answer these questions, without knowing what the specific medical circumstances may be that have placed you in that predicament where these decisions may have to be made, often in an immediate nature, meaning in seconds not minutes, hours, or days.

It is often best to think of it in this way. These types of questions, often included in what many states call a living will, only apply if you become so incapacitated that your condition is considered irreversible. If you do not specify your wishes by completing a living will, or at the absolute least, a healthcare power of attorney which will name someone to act and speak on your behalf should you be unable to, also called an advocate, specifically in the area of medical decisions about your healthcare. Without these documents, you could easily find yourself in the same situation as Terry Shiavo (https://en.wikipedia.org/wiki/Terri_Schiavo_case) who was kept alive for many years during many legal battles.

I am not going to get into the whole story, for you can read the linked article, or do your own google search and find tons of information on the case. The point of mentioning it is that if you do not appoint someone to make your decisions in a manner approved by your particular area of residence, or even better complete a living will, which spells out your wishes, you could well find yourself being kept alive by artificial means, despite the fact that you would never have wanted that. You need to do your own research for your state (if in the USA), or wherever you may live, as the rules, laws, and forms acceptable vary widely from one area to another.

Recently when facing a rather complicated set of neurosurgical procedures, my wife, my daughters, even their significant others, and I all sat down and had this very difficult decision.  We discussed in great detail what my wishes were should I become incapacitated and unable to make decisions on my own. We further had the even more difficult decision as to my wishes if it should be determined that I was in a permanent irreversible state, with no hope of improvement or quality of life.

We did our research and, with the help of a friend who had also done similar research for her mother, were able to complete a set of forms that covered both the Living Will, as well as the Healthcare Power of Attorney. In the Commonwealth of Pennsylvania, they are supposedly not required to be notarized, but we chose to get them notarized when we signed them with the requisite two unrelated witnesses. We then provided completed copies to my physicians, the hospital, etc.

I am including the link to the provider of the forms we used strictly for informational purposes, and you are instructed to do your own research and find out what your local laws and requirements are. However, if you wish to get an idea of the types of things you should be thinking about & discussing with loved ones, you may find the forms we used at the website of the Allegheny County Bar Association in Pennsylvania by following this link: https://www.acba.org/public/livingwill.  The website claims that it is the only form endorsed by both physicians and lawyers here in the Commonwealth of Pennsylvania.

I urge everyone who reads the article to consider completing such forms, and updating them as often as necessary.  While you may feel one way right now while you are otherwise healthy, should you become ill, or worse, terminally ill, this could and likely should change how you would answer the questions posed above and by the above referenced forms. I personally named my wife as my primary advocate, my eldest daughter as my secondary advocate, and even went a step further and named my best friend as a third advocate in the unlikely event that something were to happen to myself, my wife, and my daughter all at the same time, such as a car accident.

While none of these questions are things we want to think about let alone discuss out loud, it is in your best interest to do so now, while you have the time to think about and  the ability to make your wishes and decisions known. I’ve also been told that some states further require you to have the same discussion with your primary care physician and that he must enter the details of that discussion in your medical records.

A friend has also graciously provided a link to a resource that she has found useful in these types of discussions. While the website itself is for C.R. Strunk Funeral Homes, it has some good resources for a variety of things besides strictly funeral planning, and may well be worth the read.

Lastly, I would like to urge everyone to consider your thoughts and desires regarding organ donation. In the event of your death, your organs could well save many lives. I personally known of two people whom have had kidney transplants, and most recently a good friend of mine was the recipient of a double lung transplant. Again, I urge you to check with your state’s requirements on becoming designated as an organ donor. Here in Pennsylvania it is as simple as checking the “Organ Donor” box when you apply for or renew your state issued ID or Driver’s License. I do not have a clue what other states may require.

Here are a few very well written and informative articles from a fellow blogger on the topics covered n the post. I am including them as I have often found her writing to be even better than mine, and the more information I can present you with in an attempt to clarify these rather difficult subjects, the more informed you will be when making those “tough” decisions.

Of course no article or post like this would be complete without the standard disclaimer that the information contained herein is strictly for informational purposes, and does not constitute legal advice. You are hereby instructed to do your own due diligence, research, and follow the laws in your state. Further, I recommend you consult a qualified attorney to answer any and all questions that you may have prior to completing and submitting these documents to your healthcare providers according to your local laws. These are not decisions you should take lightly, nor is the responsibility of completing the documents appropriately and properly.

It is my sincere hope that by reading this article, it will prompt you to prepare for the unexpected, so that should tragedy strike you or your family, you will be more prepared to face the difficult tasks of decision making because of the time you took to educate yourself, and complete these documents. I pray you will never have to use these documents, but the truth of the matter is that we never know what will happen or when it will occur.

Article: “Hospitals struggle to address terrifying & long-lasting ‘ICU Delirium’ “

The following is a re-post to a friends’ blog, where she addresses a very real issue for ICU patients, that has been overlooked for way too long. This is a must-read article for anyone who ever has or knows someone who has had to spend time in an ICU regardless of whether the cause was medical or surgical.

The fact is, like many things in medicine, it is time to re-evaluate and update how the sickest patients are cared for to prevent long-term ramifications of that care. While most patients are simply happy to get out of the ICU, it is imperative to recognize that the ICU itself can cause trauma which must be addressed!

So head on over to the “As I Live & Breathe” blog and view her original post via the link below. Her post also links to the full article, which is well worth the few minutes it will take you to read it.

Important Article: Hospitals Struggle To Address Terrifying & Long-Lasting ‘ICU Delirium’