the-device-hospital-surgery

Patient Safety Awareness Week – A Book Review of “Your Patient Safety Survival Guide: How to Protect Yourself and Others From Medical Errors”

Seeing as though today is the final day of Patient Safety Awareness Week, I thought this would be the perfect time to present my review of a highly acclaimed book on patient safety and healthcare. Anyone who knows me will tell you that I am a pretty avid reader. I will read just about anything and everything, just as long as it appeals to my emotions and/or experiences at any given time. Given that my life currently consists of ongoing medical appointments and other healthcare management tasks, most of the supplemental reading I’ve been doing over the last few years (outside of assigned reading for school and keeping up with pertinent medical journals) has primarily consisted of self-help books relating to chronic illness, psychology, and navigating the medical system. So, when I was given the opportunity to review Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors by Gretchen LeFever Watson, I was extremely elated. Although I had originally planned to take advantage of this opportunity during winter break from school since I knew that I would be recovering from a total hysterectomy and would be looking for things to do while stuck in bed, I am honestly kicking myself for not clearing some time in my schedule prior to surgery because I could have really used this information before my own patient safety was put at risk.

For those of you who are unaware, I was scheduled to have a total hysterectomy on December 8, 2017, using the da Vinci Robotic method in order to rectify the excessive and erratic bleeding that started as a result of complications from late-onset endometrial ablation failure following my NovaSure procedure in 2015. Unfortunately, what was supposed to be a “minimally invasive” procedure with “minimal scarring” and a “quick recovery period” turned into this mess…

Hysterectomy Scar Resulting in Injuries Caused by the da Vinci Surgical System

Photo by Undiagnosed Warrior (2017). Hysterectomy Scar Resulting in Injuries Caused by the da Vinci Surgical System [Image].

… but I will go into more details of this tragic event at a later time. Needless to say, it would have been far more helpful to have read this book before I actually needed the helpful tips supplied in the pages of Your Patient Safety Survival Guide.

The first thing I want to mention before reviewing the content of this novel is that I found myself drawn to this book simply because the author’s personal and professional background intrigued me. From a professional standpoint, Dr. Gretchen LeFever Watson holds a Ph.D. in Clinical Psychology and has held a variety of training and leadership positions in hospitals and community-based healthcare programs. Not only has she received numerous awards and grants for her research, but her work has also generated a great deal of media attention and recognition from other subject matter experts in the fields of psychology and healthcare as well (Watson, 2017). This is in addition to publishing two other patient safety books along with Your Patient Safety Guide and several peer-reviewed research papers. Considering that the author is clearly well-versed and has a long-standing history of working within both the past and current structure of the American medical system, I knew she would offer a great deal of insight from the professional side of health care. The fact that Dr. Watson has also been an advocate for patient safety and wellness from personal experiences as both a caregiver for her mother and as a parent when a medical error almost took her daughter’s life at the young age of only four-years-old made me think that her opinions would likely represent a more balanced perspective overall (Watson, 2017). As someone with multiple chronic and rare conditions, and a student studying for a degree in clinical psychology that has also spent many years working in veterinary medicine prior to disability myself, I was definitely interested in reading her perspective on some of the issues currently plaguing the safety and care of patients. Thankfully, this book did not disappoint.

Aside from the fact that each chapter of Your Patient Safety Survival Guide covered a wide breadth of obstacles in receiving adequate medical care (e.g., safety habits and best practices, avoidance of medication errors and overprescription of dangerous medications, and the prevention of infections and common medical injuries that can occur as a result of human error, negligence, malpractice, and purely bad luck), the thing that I liked most about this book is that every topic discussed in the text provides readers with an eclectic explanation illustrated through research statistics and patient examples. Chapter 1, for instance, notes some shocking statistics that suggest “at least 440,000 patients die needless deaths in US hospitals each year” and the “initial estimate of the financial impact of the patient safety crisis indicated it totaled around $5 billion annually, about one-quarter of which involves out-of-pocket expenses” (Watson, 2017, p. 7-8). While these numbers are obviously alarming, the author prevents hysteria or anxiety over such occurrences by putting the situation into a more realistic perspective by detailing the potentials causes of medical error and offering ways to combat it as either a patient receiving care or professional providing care.  In this way, the author is avoiding labeling the problem according to a single source but rather a complex, systematic problem that can result in an infinite number of breakdowns within the medical system itself. Personally, I find this account refreshing because it first acknowledges the problem, without placing blame on either the patient or medical professionals specifically, and then it explains the how and why medical errors happen. It also makes it easier for the reader to accept the information before the author moves on to discuss her own recommendations and potential solutions for resolving the problem at hand. Nevertheless, one factor that distinguishes this book from many other patients and/or chronic illness texts is that Dr. Watson wrote the content of this book to equally address a combined audience of both patients (or their family members) and medical professionals alike.

Another important element of Your Patient Safety Survival Guide that I found relatively helpful is that each chapter presents the reader with either a tool that can help them measure and target goals relating to different variables of patient safety or an action plan that can minimize the potential for common medical mistakes. Although most of the tools and guidelines presented in this book are based on logic and common sense, I can personally attest to how easy it is to forget even the simplest of things, especially when you’re anxious about an upcoming surgery or procedure, concerned as to whether the physician will take your medical complaints seriously or not, or you’re just simply distracted by pain or other symptoms. In these cases, simpler is almost always going to be better in the long run anyways, although some of the planning tools and safety tips were also new to me as well. Still, the biggest takeaway that I got from reading this book came from the seventh and final chapter entitled Acceptance, Apology, and Forgiveness: Safeguard the Lives of Patients and Healthcare Providers. One of the reasons that this specific chapter stood out to me the most is that the end of this book overly emphasizes the fact the doctors and other healthcare providers are only human and, therefore, they’re liable to make mistakes just like anyone else. As Watson (2017) points out, “we all make errors. Our errors rarely result from the willful disregard for others. Factors beyond the control of providers often influence the emergence of error, and, when errors occur, providers are often in need of compassion – just like event’s primary victims” (p. 140-141).

With my own significant complications resulting from a major medical error fresh on my mind, the stories and information shared within these final pages clearly hit too close for comfort on a number of occasions. In many ways, it would have been easier to blame the surgeon and his support staff who performed my hysterectomy for everything. Lord knows that I had plenty of good reasons to rightly justify my anger and hatred over the situation, but what good would that have done in the end? Being angry about it wouldn’t make me feel better or allow me to heal any faster; yelling at the doctors and the hospital staff also wouldn’t prevent similar mistakes from happening to other patients in the future. Though it’s far more comfortable to blame the doctor when things don’t go as planned, it’s equally as hard to accept that it’s rare for patients to consider the harm we inflict on medical providers by establishing unrealistic expectations regarding our health care wants or needs. This is another reason why I really enjoyed reading this chapter because I liked that Watson (2017) discusses both the physiological and psychological impact that medical errors have on both the patient and their families, as well as the significant damage and stress that these faults can have on healthcare providers and facilities. Once again, it’s easy to forget that doctors and their support staff already feel the train and the pressure simply from completing the tasks they were trained to do in the first place. On the other hand, there will always be those few providers who tend to forget that patients are also human and just as fallible as they are themselves. Watson (2017) describes the apparent divide amongst patients and professionals best by suggesting that the biggest flaw in the wake of a major medical error or mistake occurs when the lines of communications are closed off, such as when full disclosure about the nature of the error is avoided in order to favor one’s pride instead.

In the end, there really isn’t too much more one could ask for in a single book regarding patient safety and healthcare, but if I had to choose one thing to criticize about any part of this book it would have to do with the fact that some of the chapters offer a rather viewpoint on the use and/or abuse of stimulants and opioids for managing chronic symptoms or pain. However, this is just my personal perspective based on taking these (or similar) drugs in order to manage my own symptoms either in the past or present, in addition to considering alternative opinions from other chronic illness patients who have also dealt with the medical system for an expansive period of time as well. Even if I don’t necessarily agree with all of the author’s personal and professional opinions as deliberated throughout Your Patient Safety Survival Guide, I still respect and appreciate the author’s judgments on these topics as she does support her logic using mainstream facts and theories regarding these types of medications. I am also very much appreciative of Dr. Watson’s willingness to devise solutions to the problems in healthcare and patient safety rather than focusing on the inadequacies of the system alone. I really do believe that this book – and Dr. Watson’s research and safety initiatives for patient care – will prove beneficial for anyone engaging in any part of the medical system to some degree. More importantly, I would highly recommend this book to anyone managing a chronic or rare disease since we are among the most vulnerable population of victims exposed to potential medical mishaps as we are routinely asked to put our faith, trust, and livelihood in the hands of practitioners of medicine.

If you’d like to purchase a copy of Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors, please visit one of the following online retailers:

https://www.amazon.com/Your-Patient-Safety-Survival-Guide/dp/1538102099

https://rowman.com/ISBN/9781538102091/Your-Patient-Safety-Survival-Guide-How-to-Protect-Yourself-and-Others-From-Medical-Errors

https://www.barnesandnoble.com/w/your-patient-safety-survival-guide-gretchen-lefever-watson/1126025512

https://play.google.com/store/books/details/Gretchen_LeFever_Watson_Your_Patient_Safety_Surviv?id=XQglDwAAQBAJ

References:

Brown, A., Demyan, A., & Agha, S. (2014). Research on Victimization Among People with Disabilities. Retrieved from https://www.nij.gov/topics/victims-victimization/Documents/violent-victimization-twg-2015-browne-demyan-agha.pdf.

Cleveland Clinic (2018). Hysterectomy: What You Need to Know. Retrieved from https://my.clevelandclinic.org/health/treatments/4852-hysterectomy-what-you-need-to-know.

Drugwatch (2018). Da Vinci Surgical System. Retrieved from https://www.drugwatch.com/davinci-surgery/

Good Reads (2016). Gretchen LeFever Watson. Retrieved from https://www.goodreads.com/author/show/15244917.Gretchen_Lefever_Watson.

Watson, G. L. (2017). Your Patient Safety Survival Guide: How to Protect Yourself and Others from Medical Errors (1st ed.). Lanham, MD: Rowman & Littlefield Publishers.

Wortman, M. (2017). Late-onset endometrial ablation failure. Case Reports in Women’s Health, 15, 11-28. https://doi.org/10.1016/j.crwh.2017.07.001.

Happy Labor Day

Since leaving my job for medical reasons, I can’t even count how many times I’ve heard that I’m so lucky to be able to stay home every day and not have to work anymore. Every time I hear this, though, I feel sick inside.

In one way, they’re right – I am lucky… Lucky I’m not killing myself anymore by going to work with a serious illness; lucky I’m not putting both myself and other people in danger just to get there and back; and lucky I’m not hurting the business or even patients by not functioning effectively enough to maintain my job. Unfortunately, there are some people with chronic illnesses who don’t have that same choice. So yes – I am extremely lucky in that sense.

However, not working is also a huge burden – on my family, on my finances, on my physical and mental health, on my self-esteem – on pretty much everything in my life. I would do almost anything in the world to feel better and get myself back to working – I’m trying anything and everything I can to hopefully get back there one day.

This isn’t an extended vacation – this is chronic illness.

I’ll trade you non-stop doctor and hospital visits, medical tests that are painful, surgeries that don’t fix the problem, being referred to psychologists and having people question your sanity, the inability to eat without being in pain or sickness, disability and insurance denials, being called a drug seeker, and being judged by nearly all of society just to go back to work.

Hope you don’t mind if chunks of your hair fall out, or that you pass out nearly every single time you have to take a shower. I hope that you’re not afraid of needles. You won’t mind having some brain fog, would you? It’s when you can’t remember anything – good luck doing my homework and writing that paper for me.

Oh, you also have some errands to run just to get the necessities of course but don’t forget the fact that you can’t drive anywhere by yourself. Your friend’s having a party that’ll you’ll have to miss and your other friend is mad at you because you don’t hang out with them enough. Those are the only two friends you have left though because no one else cared to stick around, not even most of your family.

Also, don’t forget to take those 13 different medications at different times throughout the day. Heads up – some make you really, really sick, others make you feel really tired and unable to function, and some keep you up all night. You can’t have any pain meds, though, because then people will just think you’re an addict – you didn’t need them anyways, right? Again, I’ll gladly trade places if you’d like – since I’m so lucky that I can’t work.

Being able to work is a huge privilege,

although many “healthy” people tend to forget this.

For the chronically ill, Labor Day is often just another reminder of what we many of us have lost to our illness. So when you’re off celebrating tomorrow, don’t just be grateful for having a day off- be grateful for your health giving you the opportunity to do so and please be thoughtful of those who may not have that same chance.

14184396_1086555484714725_1080607547090910736_n

Quick Update On The New Year

Hello, Everyone.

Sorry that I’ve been M.I.A. lately, but (as per usual) everything has been hectic once again. However, I wanted to check in with you all and provide some updates as to what’s been going on in my life and with my health.

First off, thank you to everyone who has followed along with my blog this past year and to all the new readers who have spent time browsing and viewing everything I have put up on the blog (especially those from the Nutcracker Syndrome Group Facebook Page- and thank you to Margreta for her wonderful research skills and for finding/linking to my page). I have a lot of great information currently saved that just needs to be edited and posted, so hopefully all of that will be up live on the page here soon. Also, this week is super exciting because it’s the 7th Annual Wear Purple Day Event for SMA Syndrome Awareness but more about that later (see details below).

As most of you know, right before the holidays I took a short break from medical testing, doctors appointments, and school. 3-weeks off?!?!?! While I was hoping to be super productive and get so much done during this time, I sadly spent almost my entire break in bed as I was knocked down hard by an extreme flare that -even now- I’m still not completely over. It’s been an awful couple of months for sure and most of my days have been spent sleeping rather than doing much of anything else. Quite disappointing. Then with school and appointments starting back up, I already feel like I am so far behind on everything.  Not to mention, I’ve  had a couple hard blows from some of my doctors and with my disability claims already this year. So, needless to say, 2016 has been far from a perfect start. Likewise, it hasn’t been overly exciting either.

At the beginning of January, I submitted the last of the documents that were requested for converting my short-term disability plan into long-term, although my STD claim ended the first week of December and I have yet to hear anything in regards to a decision. I do know that they sent my case for medical review and I’m guessing that’s not a good sign in terms of getting approval. I knew when I received the other denial letter from my first STD case that they were setting up to deny my long-term (or, at least, it seems like it anyway). Financially it’s been tough, but somehow we’re making it through – at least, for now.

Also, I’ve had some follow-up appointments with my both primary care physician and my gastroenterologist, as well as continuing the usual weekly appointments with my therapist. My bloodwork and urinalysis were showing some irregularities at the start of December, so we re-ran those labs hoping to see if there had been any changes  that could perhaps lead to a diagnosis for the underlying skin/allergy/systemic disorder that nobody can seem to figure out. Like usual, though, my tests came back normal; except for finding protein and urobilinogen on my urinalysis and the low vitamin D levels and a decreasing eGFR rate in my blood serology. However, the good news is that my amyloidosis protein serology came back negative and my cortisol levels (which were low over the summer)are within normal limits again. My primary care had ordered an ultrasound of my left kidney last week to make sure nothing else was going on, but the hospital informed me yesterday that my scan was normal as well. So no more answers, but no change in diagnosis at this point either.

My GI appointment is a long story, so I’ll have to save that for another time. In fact, I plan to use it as an example for my follow-up post to The Good Patient (Part 1 of 2) – The Bad Patient. I bet you can see where I am going with this. Also, I have some other things I want to discuss in regards to my psychological evaluations and appointments in therapy, but that will have to wait until I have more time as well. The next few weeks are hectic, as I have more labs and medical tests ordered. Next week I am scheduled for more blood screenings, a 24-hour impedance and pH study (since I couldn’t complete the first one), and an anorectal manometry – how miserable, really. I’m also waiting for the hospital to call so I can schedule an MRI Abdomen/Pelvis (which I have not had before) and then I go for a tilt-table test on March 1. After all, of that is said and done, I will then follow-up up with my PCP, GI, and Cardio doctors to discuss whether or not to move forward with the surgery that the vascular surgeon recommended for the Nutcracker Syndrome. I’m sure more things will come up between now and then, but that’s the plan so far.

Aside from all that, it’s just making it through another semester in school and learning to  somehow manage my symptoms, but that is becoming harder as time and time goes on. Does that sound like I’m doing enough to you? Some days I think so; other days I feel terrible for not doing more with myself – oh the dreaded guilt of chronic illness.

Finally, as I mentioned at the start of this post, this Thursday – January 28th- is the 7th Annual Wear Purple Day to promote SMA Syndrome Awareness. It’s an online event, but everyone (both patients and non-patients alike) are encouraged to join the event via the SMA Facebook Page (linked here) and post fun pictures of you or anyone else wearing the color purple that day in support. For more information, you can either send me a message through my blog, Facebook, or email accounts or you can message the event page directly. Please share with your friends, family, co-workers —> everyone and anyone that you know. Too many SMA Warriors have been lost this year and it’s important to bring awareness to this condition. I’m hoping to be posting videos, photos, and research both here and on the Undiagnosed Warrior Facebook Page starting tomorrow.


[Taken from the 7th Annual Purple Day for SMAS Page and written by Marge Reed (for the 4th Annual PURPLE Day- 28th Jan, 2013) and (slightly) adapted for the 5th Annual PURPLE Day, on the (28/01/2014), by Maria McMillan and again (updated for our 6th Annual event from 28/01/2015 to 30/01/2015) and updated for our 7th Annual PURPLE Day, Jan 28th to 31st, 2016.]

THE STORY BEHIND PURPLE DAY:

"On January 28, 2010, my friend Samantha Mina traveled 800 miles from Virginia to check into the Florida Mayo Clinic for SMA Syndrome.
An innovative SMA Mom Maria McMillan decided, before Samantha's departure, to ask friends and fellow survivor families around the globe to wear purple that day to show their support for SMA Syndrome sufferers. With hundreds of RSVPs and dozens of uploaded photos of purple-clad people, the first annual Worldwide SMA Syndrome Awareness Day was born.
Then nearly 1000 people attended during each 2011 and 2012, praise the Lord!
Indeed, the past couple of years were marked by leaps and bounds in global SMA Syndrome education and when the documentary style TV show "Mystery Diagnosis" scouted Samantha and featured her story on the Discovery Health Channel on 83010 the survivor support group swelled to 1200 members.

At 8th January 2014 our Awareness group now has 1508
members!

As at 4th December 2014, our Awareness Group now has 1756 members!
*As at 18th December 2015 our Awareness Group now has 2113 members*
We had almost 1400 attendees for our 4th Annual PURPLE Day, Jan 28th, 2013! (Inclusive of 'Non-Facebook attendees).
So, to celebrate all the incredible progress in SMA Syndrome Awareness that has been made thus far and to encourage its continuation in 2014 we invite you to participate in the 5th annual worldwide SMA Syndrome Awareness day on Tuesday January 28 2014 (to Thursday 30th January, 2014), to allow for global time differences, by simply wearing a purple article of clothing and/or a purple ribbon, or a whole purple outfit, if you wish! Please feel free to take a photo of yourself to upload to this page.
And now, we invite you to attend our 6th Annual worldwide SMA Syndrome Awareness Day on Wednesday 28th January 2015 to Friday 30th January, 2015 (to allow for global time differences.
We had 3991 attendees for our 2015 event!
*And now, we invite you to our 7th Annual 'PURPLE Day' from Thursday, Jan 28th to Sunday, January 31st, 2016*
Thank you for sharing our 2016 event both on Facebook and in the 'real world'.

1236190_919803644335_925406144438259906_n

(Once again, you can join the event here)