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.

All Patients are NOT Created Equal….

Despite having worked in EMS, as well as in hospitals on medical/surgical floors; Skilled Nursing Facilities, Emergency Departments, Operating Rooms and many roles over my years before becoming ill, and the fact that I now have extensive knowledge and experience being a patient, I have once again learned what I think is a valuable lesson that some of us forget over our time in service to others in healthcare. And the fact of the matter is that all patients are NOT created equal!

While I will readily admit that I am by far not your typical patient, I sometimes forget that not every person has had the experiences that I have had in being a patient. Not every patient has the same pain tolerance or thresholds. Not every patient has even the slightest understanding of how the healthcare system works, or what to expect when faced with a healthcare dilemma in their own lives, regardless of whether that situation is medical or trauma related.

This fact was reinforced for me over the last few nights by the woman in the room immediately adjacent to mine. She reminds me of the story I often heard as a child of “the boy who cried wolf.” When faced with even the slightest amount of discomfort, she screams such a high pitched wail that even staff from the other side of the unit come running, initially.  They are beginning to sense a trend and while they still respond immediately, they now seem to be realizing that she is in fact not dying or in need of immediate assistance as if she had fallen. I have even heard, on occasion a very large bang followed by her high pitched wail. Later to find out that she had not fallen or even moved out of her bed, so I can only assume that she has figured out that if she makes a noise loud enough to lead staff to believe she has in fact fallen, that they will respond quicker.

While I do not doubt she may well be in incredible pain,  I do doubt that she is going about getting the care she needs in the most appropriate way. Having never had a hip replacement, I am not attempting to diminish her level of pain, as I am quite sure having a hip replaced is not a comfortable procedure and leaves a great deal of pain immediately post-operatively.

I further doubt that any type of pain or discomfort gives her the right to verbally abuse nearly every single staff member with whom she comes into contact! Two nights ago, after being heavily medicated myself for the sole purpose of sleep, I laid in my bed listening to her berate a nurse for not giving her the attention she felt she deserved. The nurse tried her very best to explain that she was not, in fact, ignoring her, but rather had been tending to another of her patients and had been in the middle of a dressing change on the other patient. This woman continued to berate her stating things like “but you said you were my nurse,” implying that she believed she was this nurses sole patient.

When the nurse was finally able to escape the patient’s room to go get a few of the items demanded by this patient, you could tell she was visibly upset. I caught her attention and flagged her to indicate she should come into my room. As she did I whispered to her that she was now in a “safe zone” where she could take a brief respite from the abuse.  I have rarely seen a nurse so visibly upset and shaken by a patient’s lack of compassion for the people who have, for whatever reason, devoted their lives to caring for others.

Meanwhile out in the hall, you could hear thee same patient berating a nurse’s aide or patient care assistant as they are also sometimes called, for not having vinegar and honey on the floor, which is a well-known remedy for curing muscle spasms. She went on and on to this aide about how insensitive people were to her pain and her “requests” for assistance. As the nurse went on to give me my medications quickly so that she could go tend to this patient which would take a great deal of time, she apologized to me for my having to hear this. Why should a nurse have to apologize for a rude, inconsiderate patient?!?

If you find yourself a patient, there are a few things you must understand, which will not only make your stay more pleasurable or at the very least tolerable, but also keep your providers happy.

The demand for respect, compassion, and attention that you so blatantly demand goes both ways. Each and every care provider with whom you come into contact deserves the same things you are so rudely demanding of them! They have taken a great deal of time, sometimes many many years, and tons of student debt in order to help people like you. When you treat them poorly, all you do is cause them to wonder if they chose the right profession, if this is the abuse they have to put up with at work. And yes, yelling at, berating, or otherwise being inconsiderate of your nursing staff is, in reality, a form of abuse. While it may not be physical abuse, it carries the same punch as if you were to reach out and strike them across the face.

Secondly, when a nurse introduces themselves to you at the beginning of their shift and tells you that they will be your nurse for the shift, they are by no means being literal! Yes, they will be your nurse in the sense that they will care for you. But depending upon the setting in which you find yourself, they could have as little as one or two other patients, to as many as eight or ten. So be patient, and try to be understanding when “nobody comes immediately after ringing the call bell.”

Third, pain medication, except when given intravenously, which is rare outside the immediate acute setting of a hospital, and even more rare in an acute rehabilitation facility, can not, and will not work instantly! This does not mean you can demean the nurse for not knowing what they are doing or giving you less pain medication than you deserve. They have given you what the physician has ordered, and when given by mouth, it takes some time to work. A medication taken orally takes an average of fifteen to even as much as sixty minutes depending upon the patient and the amount of food in their stomach at the time of administration.

While natural or homeopathic remedies are becoming more accepted in general, do not expect them to simply exist on the unit you are on, even when they may be something simple as a concoction of honey and vinegar, they are not items typically found on nursing unit, nor can they be administered without a physician order despite the extensive training required of most RN’s, they are not permitted, as a general rule, to prescribe treatments of any sort without an expressly written or occasional verbal order from a physician. As such, even if the items exist, you will not be permitted to use them without first discussing said use with your physician.

The “Golden Rule” of life explains all of this in a nutshell. “Do unto others as you would have the do unto you.” By keeping this in mind you will make what may well an unpleasant situation much more tolerable for yourself, as well as those caring for you. And by all means, don’t forget the manners we were taught from a very young age. Saying please, thank you, “could you please do _____,” will get you much further than demanding respect which you yourself are unwilling to give to those from whom you demand it!

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’

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