Mark Versel, 1944-2012
My father passed away late last Friday night from a most insidious disease called multiple system atrophy (MSA). It’s a rare, progressive, neurodegenerative condition that presents itself with symptoms similar to those of Parkinson’s disease, but it is far more aggressive and debilitating. Essentially, muscles stop working until the disease kills you. In my dad’s case, he ultimately lost the ability to breathe.
Nobody knows the cause of MSA and there is no cure. There really aren’t even any effective treatments. You can only treat the symptoms with medications designed for Parkinson’s to address muscle stiffness, balance and such, and with physical and speech therapy, but that’s like standing in front a speeding train with a stop sign. It’s a futile battle.
My dad never had any real health issues other than sciatica until he was diagnosed with what was thought to be Parkinson’s less than five years ago (MSA didn’t really come into the picture until maybe a year and a half ago). He ate well, exercised somewhat regularly and generally took pretty good care of himself before the disease came along. Now he’s dead at the relatively young age of 68 after an excruciatingly fast decline that kept him hospitalized for his final month.
He fought the disease valiantly and courageously, but he never got the chance to retire. He was forced to stop working because he was physically unable to continue. He never even got to come home to die. The end came so fast that we didn’t get past the first hospice discussion.
As sad as it is to lose my dad in the way that I did, I want something positive to come out of his ordeal. He was selfless, kind and generous in life, and my family intends to carry on his legacy in some way that we haven’t had time to figure out just yet. I want to use his memory and my little corner of the Internet to help educate people about MSA and about patient safety.
What does patient safety have to do with this, you ask? My dad had pretty terrible care at a poorly run community hospital near his home for more than three weeks before he was transferred to the wonderful Georgetown University Hospital in Washington for what turned out to be his final days. The contrast was striking.
The community hospital was a place of inadequate communication, broken processes, obsolete workflows, neglect and harm. My dad came in with what turned out to be a urinary-tract infection. They treated that with antibiotics, but he developed pneumonia in a matter of days—a condition a doctor admitted he had acquired in the hospital. So he was transferred to intensive care, where the hospital could make a lot more money despite being responsible for the complication. (Perverse incentives rule in American healthcare.) My dad was a Medicare beneficiary, so you and I, as taxpayers, get ripped off by the incompetence.
Meanwhile, the clinicians there, who had been trained to treat the acute symptoms, neglected the MSA for more than a week, even taking him off his regular meds for several days, during which time my dad’s muscles continued to stiffen. Physical therapy was essential to prevent further atrophy. The order went in for him to receive physical and occupational therapy at least three times a week, but the PT and OT were nowhere to be found for a week or more.
Meds that had been ordered didn’t get delivered. One night while I was there, a perky medical assistant or tech or someone of that ilk burst into the room announcing it was time for an AccuCheck test, and nearly went through with taking a small blood sample before I stepped in to ask what was going on. She explained that it was a test for blood sugar (who would know what AccuCheck was if they didn’t have diabetes or some familiarity with the healthcare industry?) only after I enquired, but I stopped her to tell her that my dad did not have diabetes. Because of the MSA, he had difficulty speaking and would not have been able to stop someone acting so quickly. It turned out that the tech had gone to the wrong room. The hospital did require clinicians to scan bar codes before administering tests and meds, but who knows if the system really worked?
Later that evening, the nurse nearly gave my dad an eye drop that had not been ordered. The proper instructions were to administer an ophthalmic drug orally, but only if he had excess saliva. The nurse didn’t see that part of the note, despite the fact that the ICU had a partial EHR (Cerner, for those of you keeping score at home) with electronic medication lists.
The infectious disease specialist at the community hospital was not even familiar with MSA — and he didn’t bother to tell us that for three weeks. It should be his professional duty to call in an experienced neurologist or consult with my dad’s personal physician.
Worst of all, my dad stopped breathing for a few seconds last week under questionable circumstances and was intubated, despite the fact that he had an advance directive on file specifically stating that he did not want to be intubated.
At Georgetown, we saw nothing but compassion and competence. Care was well coordinated. People talked to each other. Clinicians huddled together during shift changes to discuss all the patients on the ward. The medical director of the ICU, a pulmonologist, personally managed my dad’s case. The neurologists at this major teaching hospital had seen MSA before, but that didn’t stop them from talking with my dad’s personal physician. It was too late to save my dad’s life, but he died comfortably and with dignity at Georgetown, without the needless agony he endured at the other place.
I am now vowing to dedicate my own career to educating as many people about MSA as possible and about the danger of uncoordinated care and poorly designed workflows. Interestingly, one of the last stories I wrote before my father passed and before I took leave was a piece in InformationWeek about patient engagement. I love the mantra of the Society for Participatory Medicine that I mentioned in the story: “Nothing about me without me.”
Every patient should live by those words. And every healthcare facility should respect that concept.
Rest in peace, Dad. You have not died in vain.
UPDATE, April 2013: If you would like to make a donation to MSA support and research, please visit our family’s fundraising page, which is helping the Multiple System Atrophy Coalition. Thank you.
Neil,
I’m sorry to hear about your loss. Your Father sounds like a great man. Thanks for sharing his story. More stories like this need to be told and heard. I think the best word here is accountable. People and institutions need to be held accountable for what they do.
Let me know if I can do anything to help in this certainly trying time.
Neil, what a wonderful, thought-provoking essay. I’m so sorry about your father, but I have no doubt that your voice, added to the many others pushing for accountable, safe, higher-quality care, will move the bar forward for better patient care. We’re lucky to have you working in your dad’s memory and on all of our behalf.
Neil, Beautifully written tribute to your dad. I’m glad I had the opportunity to meet him and your mom under much better circumstances. Take care and let’s you and me and Leigh get together soon. Peace, brother.
Neil,
I’m so sorry for your loss. I have no doubts that you will turn these unfortunate circumstances into knowledge that you will use to inform others and bring about change. Not only will your father’s death not be in vain, but I’m sure you’ll make him damn proud.
Know that you’re in my thoughts and prayers.
Bravo Neil. Fight the good fight. Your pen is a powerful weapon. It is also an instrument you can use to improve care for all those who follow.
Neil,
My sincere condolences. You are one of my favorite bloggers. Thanks for sharing your memories and your dad’s story. I can only imagine your frustration with the treatment that he received.
Michael Martineau
eHealthmusings.com
Dear Neil,
My sincere condolences. Your story is another example of what is wrong in much of the system, not only in the US BTW.
You are in my prayers and I wish you strength.
Lodewijk Bos
ICMCC
[…] https://meaningfulhitnews.com/2012/05/17/mark-versel-1944-2012/ […]
Neil, my thoughts are with you and I’m glad to support you in your quest–which should be the quest for all of us who want to use technology and process to improve all patient care. And it’s very brave of you to write about this so soon after his death, when you must be feeling such intense emotions. — Matthew
Neil,
I am very sorry for the loss of your father. You have managed to maintain his legacy with fine form with the sharing of this story. Thank you for your courage and dedication to your art to give this perspective to us. You have our thoughts and support. Be well.
Michael
Neil–I’m so sorry for your loss; may your memories of the good times bring a measure of comfort to your grieving heart in days and years to come. Thank you, too, for your eloquent narrative of how physicians and hospitals failed your Dad. “Every defect is a treasure” only if that learning is turned back into improvement. I know you will engage that and your voice will help it matter for patients and their care-givers. /Steve
Neil, as your other readers have so eloquently expressed, thank you for sharing your father’s story and highlighting the challenges your family faced in dealing with his caregivers. I am so sorry for your loss.
My deepest sympathy, Neil.
Neil,
Thank you for telling us about your dad and what your family went through. It shows all too well how difficult it is to find caring, attentive and appropriate care, even when finances are not a problem.
May your father’s memory be a blessing.
Neil,
I commend you for caring so much about your father and his legacy to share such a painful and personal event.
Working at a rural community hospital, I was incredibly distressed about the care you experienced. I do not know whether that is normal or not but I do know that I prefer going to our rural hospital such as ours because it is small, personal and caring. I hope many people in healthcare read your article and they learn from it.
Neil,
Your dad’s story is unfortunately not unusual. It needs to beograd so. I joined the s4pm because I want to contribute.
Neil,
Sorry for your loss!
Unfortunately, this was not only a problem for your dad but for thousands of people across America who do not get the quality of care and the respect that they deserve. The fact that you will try and continue to work at making changes to the system would make your dad proud. Although, I don’t know the man, he seemed like a special individual and he will guide you in your journey. I will keep him and your family in my prayers.
[…] Health IT News Mark Versel, 19244-2012 With the recent death of his father, Meaningful Health IT News writer, Neil Versel, has dedicated […]
This is so sad. Things like this should not happen.
[…] and listen here. And share with your friends both inside and outside the healthcare industry. Share my dad’s story. Share your own stories. Let’s make this priority No. 1. Too many people die and suffer […]
We all miss him so very much! Your Mom is one strong lady
love
cuz Steve
This has not registered in my heart as yet. Too sad for me at this point. He was my godson (as you are)
The family is strong and we will take care of each other.
Never should have happened. He was to young to leave us.
How can I help to further this outcry!!!!!!!!!!!
Aunt Millie
My deepest sympathies, Neil. May your future writings from your personal story serve to enlighten and inspire those who dedicate their lives to improving healthcare.
Neil,
Thank you for sharing your story, Neil, and I am so sorry to hear about your dad’s death. I have experienced some healthcare delivery challenges myself – in my own dad’s death in 1999 and my own healthcare. A personal note from me on that statement, but I am glad you began this discussion here. Will be thinking of you and your family.
Neil,
Please accept my deepest sympathy. The quest for quality has gone out the door. Quantity is the main goal in hospitals with the “do more, make more” attitude. I worked in healthcare for over 22 years before saying Adios! I loved what I did, but hated the politics of quantity over quality. I have switched doctors so many times because they will not listen to me. I am adamant about patient-centered, quality health care. I have many stories I could share, not just from a patient’s perspective, but as a healthcare worker that are mind-boggling and totally terrifying.
Hospital-acquired infections are very common. My question is why does the patient or their insurance pay for this? If the hospital caused it, shouldn’t they absorb the costs associated with the treatment?
Count me in and call on me if you ever need to do so!
As Dr. Rob recently wrote, our healthcare system isn’t just a mess, it’s malignant. I share the outrage of others here. We’ve got to fix this system.
[…] care at Georgetown were great, but they could not in my dad’s final four days make up for the terrible experience my dad had for 3½ weeks at a community hospital plagued by broken processes, inadequate […]
[…] Health IT News Mark Versel, 19244-2012 With the recent death of his father, Meaningful Health IT News writer, Neil Versel, has dedicated […]
So sorry to hear about your dad Neil. I lost my mother to alzheimers this past year and it does force you to reflect on a lot of things, including healthcare. I am sure you have great memories of him that will carry you through. Roberta
Hello Neil,
I came across your article on MobiHealthNews and am very sorry for your loss. My father also suffers from MSA which was mis-diagnosed for at least 2 years as general cardiovascular problems. It has been heart breaking to watch this gifted athlete and teacher as he watches himself slowly lose many capabilities. Your article reminds me that I must be an even more active participant in his care. Thank you.
Thank you all for your support during this challenging time. I have a lot of follow-up work to do.
[…] time hosted by Dr. Jaan Sidorov of the Disease Management Care Blog. Unfortunately, I had to endure my dad’s untimely death after a miserable hospital experience in order to write the piece in question. But if it brings more traffic to that post and, more […]
I’m sorry for your loss, Neil, and I admire you for sharing this story. The more people know about the poor quality care that is delivered by some medical professionals in some US hospitals, the more pressure that will be brought to bear on this shameful situation.
Sharply written. Condolences on your loss and, as commenters say above, kudos to you for baring your soul on this most personal of subjects. The world needs people to point out what exactly we mean when we say “quality of care,” and know that it isn’t just an abstract concept.
Neil,
I was so sad to hear if your dad’s passing. I met your dad at your aunt’s wedding. I can’t believe how terribly he was treated prior to Georgetown. Your dad was fortunate to have family advocates helping to protect him while the ‘healthcare’ system offered random neglect, or inept care. I am heartened that your dad got the care and most of all, compassion that he so very much needed in his last days at Georgetown
. My condolences to you and your family.
[…] Neil Versel wrote about a truly horrible hospital experience his father had before his passing over on Meaningful Health […]
[…] up a Facebook community for people to report stories of patient harm. I’ve just shared the story of my dad’s torturous final month. I’m glad that a news organization with wide reach beyond the healthcare and technology […]
[…] […]
Neil, I just found your story today. I’m sorry you and your Dad went through this. He was fortunate to have you watching out for him, and I can only imagine your frustration with the lapses in care. Beautifully written, powerful piece (and lovely photo), which I’ll draw attention to as best I can. Thanks for sharing your story; may some good come from it.
Neil, your patient-family suffered the same sort of moment-to-moment, day after day litany of buffoonery that mine did during the 3-week terminal hospitalizations of each of my parents in 2004 and 05. Very different medical tracks, identical systemic failures leading to shock and harm (the real result of “discontinuity”). I learned to stop using the terms “care” and “care team”, opting instead for “treatment group.” I learned to call things as they are what they amount to: abandonment. That’s a harsh term in the world of medicine and that’s how we experienced it when inadequate nurse monitoring resulted in Dad not getting fed or watered, or when we had to hire, out of pocket, nighttime room sitters to be there when Dad awoke. I detail what I learned about how to advocate when hospitalized and how to revision end of life in order to die in peace in my 2008 book, Notes from the Waiting Room: Managing a Loved One’s (End of Life) Hospitalization.
Neil,
Thank you for sharing this story. I am very sorry for your loss. My dad has MSA and much of the first part of your post was like i was reading about my own father. He has had symptoms now for close to 8 years and the MSA diagnosis for 4. He blogs at livingwithmsa.com. I am super proud of him and my mum for their active involvement in his care. They certainly live by the mantra you quoted. Thank you for entering this battle with and on behalf of patients.
Andrea, thank you for sharing your dad’s blog. I may be in touch in the future. Best of luck to your family. I know what a toll MSA can take.
Dear Neil,
I can picture your dad smilling at the way you are working at making sure that nobody else has to go through the mistakes that your father did. What you are trying to do is so important. Your father was so special.
Kudos to you and what you are doing.
Sharon
Thanks for your story which is so similar to ours. My husband, Gary has had MSA since he turned 50 6 years ago. We were appalled at the lack of education in the hospital systems in San Antonio, TX that we had to go to Houston to get proper diagnosis. When we chose to move to our current home, my family doctor went out of his way to learn as much as he could about MSA just so he could serve us the best way he could. Dr. Joel Saldana is the best GP I’ve ever known!!! Dr. Saldana keeps in contact with our neurologist, gastroenterologist and urologist to name a few of the specialist we’ve seen. I just wish the Social Security Administration and Medicare would not take so long to go into effect when a person becomes disabled due to this terrible disease.
If I can help you in any way in your commitment to educating the medical community on this dreaded disease, count me in!!! Thanks for doing this and may your dad be with the other MSA Angels watching over us!!!
[…] am convinced all the buffoonery that took place while my dad was hospitalized prior to his death was due to communication problems, poorly designed work processes and a culture […]
[…] told me he shared that story for me, because I had told him right before he went on stage about the suffering my dad needlessly suffered in a poorly managed hospital in my dad’s last month of life. Journalists don’t often […]
Neil-
Great article. Thank you for your words.
My father passed a year ago from MSA after an 8 year struggle. I took a 2 FMLA’s from work, then finally had to leave a very successful job to not only help care for him, but also make sure he was being treated properly from healthcare professionals. It was absolutely necessary to be his advocate, his voice (when he barely had one) and his comfort (when there were few).
I had to educate the doctors, nurses and staff. Although he mostly lived at home, the times when we were in the healthcare system, it was mostly a nightmare. I have horror stories of how he was treated. Quality of life is essential with this disease, and the healthcare system could rarely provide it.
[…] see all of her grandchildren grow up. The worst part of 2012 was in April and May, when my father endured needless suffering in a poorly run hospital during his last month of life as he lost his courageous but futile battle […]
Thank you Neil for including this site in your recent posting, I had not seen it before. Mark was my roommate, best friend, and fraternity brother during my years at San Jose State. He was also the best man at our wedding 50 years ago….our first son Mark was named after him.
I think of him often and miss him. We are having a 50 year reunion of our fraternity in San Jose this month, I know his name and memory will be with us as we gather to remember that time in our lives.
Dear Neil, Thank you for using your father’s terrible experiences to raise awareness of MSA – not just in the States but across the world and in Britain where we live. My 65 year old husband Peter has MSA – it took a long time to get a diagnosis and even after that, while the specialists in London are great (140 miles from where we live) and local palliative, movement, urology, respiratory specialists etc are excellent as is our GP, but we absolutely dread emergency hospital admissions, which inevitably happen! Even doctors and nurses have never heard of MSA and treat Peter quite inappropriately. Haven’t they heard of Google?!! Other people we encounter think it’s like Parkinson’s – they don’t realise it’s much worse and affects younger people. As with your Dad, we have never had a normal retirement – Peter had to stop work when he could no longer do it (after struggling for a long time) and I stopped work suddenly when he had a breathing crisis and I no longer dared leave him alone. We too are working hard to raise awareness through the British Multiple System Atrophy Trust. We’re thinking of you and your family. The other blogs are so familiar – if my husband is in hospital, I stay with him all day and evening to act as his advocate and only go home to sleep (with a phone by my bed). When he is in hospital in London, we pay a fortune for me to stay in a hotel round the corner (and, even there, I have had to speak to nursing staff in the middle of the night!). We and our family are working hard to raise awareness here – keep the good work up and at least you will help others, although it’s too late for your poor Dad (who looks such a nice man).
Alison, thank you so much for sharing your story. It is all too familiar, running into a medical culture that discourages doctors from admitting that they don’t know something.
If you haven’t already, I recommend you check out and join some of the MSA-related groups on Facebook. I know there is one for the UK MSA Trust as well as several global groups.
I wish you and your family all the best in your struggle against this dreadful disease.
[…] only 30 minutes long, though I do intend to give a condensed version of the story of how I had to raise my voice in support of my dad, who was rendered unable to speak by a rare disease as he was dying — and being badly mistreated […]
[…] things to say and, unlike so many other physicians, was aware of multiple system atrophy, the disease that killed my dad in 2012, so I decided to have him on for a podcast to describe how he is using off-the-shelf […]
[…] issue also contains a reprint of my May 2012 blog post, written just a week after my father’s death: “Medical errors hit […]
[…] risk, but hospitals have long been dangerous places. Plus, as I’ve witnessed first-hand with my own father, a community hospital is no place for someone with a rare disease, and even less appropriate for […]
[…] experts on hospital quality, consumerism, patient satisfaction and outcomes. Well, Neil Versel of the Meaningful Health IT News blog shows us how that learning contrasts with watching…. And we wonder why Americans are so fed up with the U.S. health care (non) system? […]
[…] experts on hospital quality, consumerism, patient satisfaction and outcomes. Well, Neil Versel of the Meaningful Health IT News blog shows us how that learning contrasts with watching…. And we wonder why Americans are so fed up with the U.S. health care (non) system? […]