“As She Lay Dying” – a son calls on the health system to involve patients and families in improving safety

Warning: this doesn’t end well. Not for anyone in the story. Unless it changes you, as it did me.

Jonathan Welch, MD, teaches at Harvard Medical School and practices in the ER at Brigham and Women’s Hospital in Boston. But, as is often the case in life, the information that really matters is more personal: he loved his mom very, very much and, because of a series of medical errors, she died unnecessarily early and in anguish.

He is sharing his family’s story in Health Affairs as a way to wring meaning from this tragedy: “As She Lay Dying: How I Fought To Stop Medical Errors From Killing My Mom.”

Dr. Welch sent me an early copy and I read it in tandem with a story published in The Washington Post that day: “The lonely path from hospital to home: A nurse learns firsthand the pitfalls of post-hospital care when her husband suffers a stroke,” by Beth Ann Swan, RN. (It turns out that the two stories are part of the Health Affairs series, Narrative Matters.)

My overwhelming reaction to both essays was despair. If clinicians can’t get decent, safe care for their loved ones, what hope do the rest of us have?

When I’m feeling low, I tend to look up. Maybe it’s because I have always loved Psalm 121: “I will lift up mine eyes to the hills: from whence shall my help come?” Maybe it’s because I just feel better when I lift my chin, open my eyes, and take a moment to think: “OK. What next?”

In this case the next step was to ask, “What would I do? What can we as a society do? What role does the internet play?”

On a personal level, if faced with the sudden hospitalization of a loved one, I would channel people like Norman Scherzer, whose survival advice is: “Get angry. Get smart. Get organized.” And I’d research the hospital on Leapfrog’s newly-revised Hospital Safety Score site.

On a systemic level, I would turn to the wisdom of clinician leaders like Paul Batalden, who has written about the quality improvement imperative, urging people to remember, “You only get a turn.” And I would turn to the work of the Robert Wood Johnson Foundation’s Aligning Forces for Quality, drawing hope from their wisdom and commitment.

On a professional level, as an internet geologist, I’d follow the path that is being forged by patients and caregivers online. How do they navigate this maze?

The internet isn’t magical. It can’t make an individual oncologist order the right protocol, but it can spread awareness that patients and their families should ask the questions that even Dr. Welch hesitated to ask. The internet can’t provide a transition plan for an individual, but it can provide middle-of-the-night answers or access to a community who can help. And it can be a way to organize a movement that demands quality improvement.

Please read both essays and then post your own thoughts and questions. I’d love to hear what other people do in the face of stories like this. From whence shall our help come?



Posted in: pt/doc co-care | pts as teachers





42 Responses to ““As She Lay Dying” – a son calls on the health system to involve patients and families in improving safety”

  1. Jenny R says:

    The scariest part of Welch’s story is that the error was visible only to him as a physician who had seen this condition before and knew that a protocol even existed. How would anyone else possibly know this?

    • Thanks to everyone for your touching, thoughtful comments on this entry and my essay. Regarding Jenny R’s first comment: I agree that it would’ve been difficult for somebody without medical training to pick up a lot of the technical shortcomings in my mother’s care. However, I do think a family member without medical training would’ve noticed that their family member was worsening—just physically looking worse–and that no physician had been to the bedside to reassess the patient.

      In the essay, we found an innovative program at the University of Pittsburgh Medical Center and the Children’s Hospital of Pittsburgh called Condition H (for Help), funded by the Josie King Foundation (you can read more about this program in the essay). If this system had been in place, I do think that a family member without medical training could have noticed their family member physically worsening, then enacted this system to get a quick response from hospital staff.

      Nonetheless, I agree that I had an advantage knowing what technically needed to be done. It’s a scary situation, but there’s more that hospitals can do to listen to our concerns when they exist!

      • Bart Windrum says:

        Jonathan, re: Condition H program: what exactly is a “patient relations coordinator” (one of the team summoned by the H call)? This is a phrase I’ve never heard to date. What range of professionals might appear under that title? Who does a PRC report to? Is the chaplaincy or ethics world accounted for within the responding H team? If you know, great; if not I’ll call Children’s Hospital of Pittsburgh, ask around, and then report back to this conversation.

  2. e-Patient Dave says:

    I apologize in advance for the sore, tense, intolerant tone of some of this. Some mistakes are understandable; this one makes me physically sick.

    I don’t know what to say. Catastrophic incompetence, failure to do their jobs – all of them… either they had poor training or good training and experienced total failure to Get The Job Done, to manage that the right things happen. To accomplish the medical “save” that others have developed.

    What do you do in cases where the hospital staff *rejects* valid information?

    25 years ago a relative of mine was in a somewhat similar situation. A horrid rural hospital had put him in a room to die. He was weak, but they didn’t even try to feed him: they just wrote on the chart that he had zero intake.

    His daughter was an ICU nurse from Boston and confronted them, getting him into ICU … where the staff didn’t know how to read the monitor, nor treat his symptoms. She stood there in disbelief, just as this author describes. Fortunately she had more than 24 hours.

    When she asked for appropriate interventions the doctor told her “You have to accept that none of us has unlimited time.” And the nurse dissed her for telling them what he needed, and asked if she wanted a Valium.

    The next morning she brought in a helicopter and got her father to a competent hospital… he ultimately lived ten years longer than the doctor.

    My mind goes back to the famous Institute of Medicine paper by Balas et al, 2001, that said new well-established practices take an average of 17 years to be administered by HALF of clinicians. The word simply doesn’t spread. That relative told me this is why if you find yourself in trouble you want to be at an academic medical center: they’re much more likely to be up on the latest. (Still no guarantee – I know of a case at Mass General where they were still doing stents unnecessarily three years after the big paper about it was published – by Mass General! No perfect performance anywhere, but better odds at an teaching hospital.)

    And that’s how I ended up at Beth Israel, an hour from home, BEFORE I found I was dying. Because of all that, I got a primary physician at a teaching hospital. In a way it was my first engaged-patient action, back in 2003.

    I want to know the opinion of each individual board member at that Wisconsin hospital. Gosh. But I wonder if they even know this was published.

    Yes, for HEAVEN’s sake, LET PATIENTS HELP! Let patients help heal healthcare.


  3. Thanks for sharing this link to Dr. Welch’s tragic story of his mother’s death. What breaks my heart, as you point out, is how the gulf between patient/family and health care professional is so entrenched in medical culture that even an experienced physician feels somehow helpless in the face of clear incompetence merely by assuming the role of family member. His reluctance to be perceived as “difficult” likely cost his mother the care that existing protocols clearly called for.

    His story also reinforces how – even with our best intentions as intelligent, capable, empowered people – we have absolutely no clue how we will actually respond when we or somebody we love becomes the one wearing the drafty hospital gown.

    I appreciated Dr. Welch’s list of recommended questions to ask patients upon discharge:

    – “Were you ever frustrated, confused, uncomfortable, or scared?
    – “Did your time in the hospital work out the way you wanted it to?
    – “Did our treatments get you closer toward your goals?
    – “How can we improve?”

    And I’m also wondering if he has been able to convince his own hospital administrators at Brigham & Women’s to implement those survey questions yet. And better yet, to take action in reaction to the answers given to those questions. Otherwise, the questions are a waste of time.

  4. Christina Bateman says:

    Thank you for sharing…absolutely riviting. I’ve been in a similar situation. No amount of money can substitute for that much needed explanation, apology, and yes, assurance that it would never happen to another patient. You prefer to use this tragedy as a “teachable moment” that will prevent something similar from happening in the future.

  5. Bart Windrum says:

    I truly don’t know which is scarier: the story of the young doc’s mother’s abandonment in hospital or the RN nursing school dean’s story of patient-family abandonment upon release. In any case, I have found that the best resources for beginning to learn how to advocate medically are those written by lay people who’ve gone the distance because of their own horror stories to write and publish books and online resources. Find them (us) online, esp. in Facebook groups.

  6. Mighty Casey says:

    Like Dave, I’ll apologize in advance for the screaming screed that is about to commence. That said, get a beverage, even a snack, ’cause this will be epic.

    My first e-patient experience was back in the days before Roe v. Wade. I’ll let you figure out the whole story there on your own, but I learned how to successfully navigate a system that did NOT want me to get the care I had decided, as an adult, that I needed. And I did succeed.

    I spent many years working in network news, doing my share of health/medicine-related stories. I picked up all sorts of information and language. As someone who started her adult life pursuing an acting career, I’m good at “act as if” behavior and being a chameleon. Most docs think I’m a doc, and ALL nurses think I’m a doc. If asked, I say “no”, but if not asked … I love getting the REAL information. ALL of it.

    My mother had a pituitary tumor DX in ’79. They’re somewhat rare, and the surgery for them was draconian, in the way of surgery before the development of micro-surgery tech. The sequalae included pharmaceutical endocrine management, a big part of which was corticosteroids.

    By the mid-’90s, my mother’s endocrine system had become somewhat brittle. She had what we all – including her – called “Mom’s sinking spells”, wherein she’d suddenly be overwhelmed with lethargy. These episodes progressed to the point that, during the NHL playoff season of ’95, which I was covering, I got a phone call during the pregame one night saying that my mother had been rushed to the hospital in pretty dire shape.

    I ran out of Madison Square Garden toward the parking lot where my car was, and screamed down I95 to Alexandria Hospital. The scene when I got there wasn’t great. Mom was almost non-responsive, her BP and HR had sunk to alarmingly low levels, and the attending was … pensive. Saying that we should watch and wait, see how she was in the morning. At noon. Later today.

    Finally, I braced him in the hallway outside her room, where my father was holding her hand and looking like he was preparing for a final goodbye to the woman he’d danced, laughed, and traveled the world with for over 50 years. The doc’s big idea, his entire protocol for mom’s condition?

    “Well, your mother’s had a long life …”

    I literally backed him up toward the wall. I’m 5’8″ in my socks, and I am not a small woman. I’m also as fierce as 20+ years living in NYC and working net news can make a person.

    I asked him what his reaction to “she’s had a long life” would be if it was his mother lying in that bed. My nose was almost touching his. He slid away from me. Within 5 minutes, mom was being moved from the med floor she was on to CCU.

    Finally. We’d been asking for that since I’d arrived. I know that my almost-got-physical stare-down with Dr. Dickhead made it happen. Why the hell did I have to almost threaten the guy to get him to do something that was clearly called for??

    That was the galvanic moment that I woke up, and realized that I had to advocate for my parents in their trips thru the health care car wash.

    My dad’s turn in the box was the following year. He had Parkinson’s, but had, by actively participating in his care via regular conversations with his neuro and voracious research and reading about his disease and the ongoing research studies into treatment and management of it.

    He also had terrible osteoarthritis. All his years of tailhook landings – he was in the 1st wave of jet fighter pilots in the Navy, was literally Top Gun at MIramar twice – had given him OA in every part of his spine, which he managed by staying active. He played 18 holes of golf, walking with his bag in a wheeled cart, three or four days a week. He stretched. He walked. He climbed stairs.

    However, his right hip was seizing up from OA. He was having terrible trouble walking, and decided to get the hip replacement an orthopedist had recommended.

    When his surgery was complete, the surgeon came to talk to us – mom, sis, bro, and me – in the family room at Alexandria Hospital. With my father’s blood on his scrubs, the first words out of his mouth were, “Just how bad is the Parkinson’s in that leg?” My first thought was, “Daddy is SO screwed.”

    And he was. Dr. SurgeonFail had used an appliance for which’s specs my dad, at 6’3″, was at the very upper limit.

    I learned a lot about how much doctors DON’T tell patients in the aftermath of this epic screw-up. First, you gotta know that a going-home protocol that includes putting a contractor garbage bag on the back seat to facilitate sliding the patient in doesn’t give one the warm’n’fuzzies. Second, when your father’s newly-implanted hip, with still-unhealed surgery incisions surrounding it, DISLOCATES while you’re holding/cradling/helping him out of the car – sliding across said plastic-bag sheeting – the screaming will give you PTSD-level flashbacks for the rest of your life.

    I know this, because I have those flashbacks.

    The following 2.5 years included more hospital stays, 18 dislocations, and finally a return to the OR (different doctor!) for a complete revision, including a new & different appliance implanted. Which, blessedly, stayed solid.

    In the 5 years they both had remaining on the earth – they died 29 days apart 10 years ago, on 11/23/02 and 12/22/02 – I advocated for them, and managed their care fully from early ’00 to the end. And there are MANY more stories, both #epicfail and #FTW.

    My point with all of this? Even in the almost-20 years since all this excitement commenced, I still retain memories of how my frustration and, yes, rage at the buffoonery I saw in medicine has not lessened. Because the buffoonery is still going on.

    If a Harvard MD struggles to get the right care for his family, what hope does a “civilian” have?

    We have to get the medical-industrial complex to recognize that they are NOT gods. They do NOT always know all the answers. They MUST let patients, and their families/caregivers, help.

    THEY MUST LISTEN. They must learn humility. They must recognize their own, and our, humanity.

    Otherwise … we’re lost.

    • e-Patient Dave says:

      And, Casey – I know you know this – “they must learn” applies to those who haven’t, because many many have.

      If you get a chance to see the film The Waiting Room, recently blogged here, I’m sure you’ll be (as I was) amazed at the work done and compassion shown by those people.

      I don’t know how we reach those who don’t know what they’re doing and don’t know it and, sometimes, don’t believe they don’t know. I just don’t know how to transform that.

      • Mighty Casey says:

        I know. My frustration is with the douche-canoes: the small percentage of people in healthcare that don’t listen, who chase the buck while running over the prone bodies of the sick and dying, who believe that the status accorded by the MD after their name gives them more human rights than the humans they treat.

        Any MD reading this page will not be in that cohort. S/he will be a true healer, and one from whom we can learn much, and to whom we owe much.

  7. Susannah Fox says:

    Thank you, everyone. I personally don’t think apologies are necessary for anyone’s reactions to these articles. I’m not ashamed to say that I wept as I read each one — in sadness for the families, in anger at the situations they were placed in. I think Health Affairs knows exactly what they are doing in soliciting and publishing such moving stories. You are honoring the authors by adding your voice (tears, anger) but esp. by adding your ideas for how we all might avoid such fates. Thank you and let’s keep this rolling!

  8. Kiara S. says:

    Mistakes like those in both essays don’t need to happen, especially in this day in age. The resources we have available to us outdate these mistakes and it is a shame that such resources weren’t being used in these cases. The negligence in Dr. Welch’s case harbors no excuse, and both essays serve as a great example of the decline in patient-physician relationships present these days. The patient and family narrative should be something that is valued in the care system, and I am grateful that it is being used now as a means to show that there is room for improvement in the systems in place.

    We as patients cannot change the system directly, but we can ask questions and challenge healthcare professionals to do better. I think the creation of online resources that present patients with understandable information and outlets to ask all the right questions in order to improve the value of healthcare is the essence of the e-patient phenomenon. While some argue that the availability of online medical information may cause patients to be incorrectly informed or think they know more that the physician, it is critical that patients have the opportunity to ask. Physicians should not have a problem with patients asking questions or wanting to know why certain methods are being carried out, as healthcare should be a harmonious collaboration between health care provider, patient, and family.

  9. Thanks to everyone for sharing your thoughts and profound stories. After writing this essay, it’s been sad to hear how surprisingly common this kind of experience is.

    I wanted to share that the National Patient Safety Foundation has created a wonderful Universal Patient Compact. I think this is a great place for health care providers, patients, and families to start when forming a truly collaborative partnership. Print it out and bring it to your next appointment!

    Health care has a long way to go, but there are also small pockets of trailblazing hospitals and clinics who are partnering with patients and families to make health care safer. These innovators, combined with voices as strong and compelling as yours, make me hopeful that we can further the movement to make healthcare truly patient and family centered!

    • Bart Windrum says:

      It is sad how common these situations are, Johnathan; I find yours in particular profoundly so…you must’ve wanted to leap into action over and over. Among my readings, again and again, I encountered books by doctors whose spouses, or own selves, wound up as patients and who, despite their knowledge, couldn’t dent the system. Many years ago NPR carried commentary from “Ian Schoales,” an acerbic character from San Francisco’s Duck’s Breath Mystery Theatre. One line I remember: “that’s the comfort, and that’s the terror,” meaning that in some situation we find both attributes. And that describes our own moment of realization—that we’re not alone, we’re not crazy, that in our story and/or learnings we have something to offer our fellow citizens (a term I use because I feel it connotes a sense of extra-personal-bubble responsibility); that what we’ve experienced is common and, by naming it (“discontinuity”) medicine admits that it is, and it knows it is, normative. That’s the comfort, and that’s the terror.

  10. Bart Windrum says:

    Everyone: I want to share a lesson I wrote about in my book. I learned about this resource only during the long research phases after each of my parents’ 3-wk terminal hospitalizations only 15 months apart (#1: ICU intubation after sudden respiratory collapse in a totally callous facility; #2: elective admittance resulted in nosocomial fatal MRSA).

    As I interviewed different provider groups I eventually was led to the chaplaincy and mission directors (lineage: nurses > ethicists > chaplain > mission director). Whereupon I learned that, and why, chaplains sit atop what I call the ethical food chain. Presumably any reader here knows that not all “patient advocates” are created equal; they range from social workers to chaplains to risk managers to RNs. The chaplains were (may have been?) there first, decades ago, helping providers during the early phases of coming to grips with the dark sides of life support technology. Help they did, and they became trusted and knowledgable.

    So my concrete suggestion to anyone is: don’t even wait for the sh*t to hit the fan. First chance you get on any admission, find the chaplain (those whom I’ve queried concur). Chaplains manage by wandering around and they *love* to be called upon. This is like arranging for a kinder gentler 911 responder to be at your immediate personal call. I have limited experience but it seems to me that if anyone is poised — in both senses of the word — to but through the miasma, a chaplain is that person.

    • Bart Windrum says:

      And I’ll add that earlier this year an acquaintance followed this guidance and that it worked beautifully. A guy w/clear ADs was in a single vehicle wreck, badly hurt, and got airlifted from rural Colorado to Denver and ICU-d to the nth degree. After 3 wks of intense familial and social degeneration my acquaintance, present but peripheral, called the chaplain. She showed up and did all what I wrote she could do above. It took another two weeks; altogether the antithesis of the peaceful demise the guy directed, but her arrival was the turning point.

      • Susannah Fox says:


        I have been thinking about this comment since you posted it. I rarely include Biblical quotes in my posts here (maybe never before) although faith happens to play a significant role in my life. I’m very interested in your insight about how chaplains are able to roam and have historically played this interlocutor role. Hmmmm…. Thank you!

        • Bart Windrum says:

          Hi Susannah,

          I’m not religious, nor actively spiritual, though I certainly do include a spiritual wonder in my makeup.

          I wouldn’t term my suggestion re: chaplaincy as an insight (because since entering this work as a lay person after my folks’ deaths I’ve had a number of insights related to it, including 3-4 during the past 3-4 extremely fertile months!). Rather, it came to my attention because I asked!

          After we failed twice in a row with and for the only parents we had (“we” being me and my NICU nurse sister, now retired) I vowed to get to the bottom of it all so that 1) it’d never happen again my my family going forward and 2) to help my fellow citizens manifest the peaceful demises we all say we want but really don’t have a clue about how to obtain. I began with a windsurfing friend who was, in 05, still a practicing ED nurse and a former ED manager. We talked over dinner and one person led me to another up the provider food chain, so to speak. Various flavors nurses; then ethicists including some mid-level admins (who otherwise, as a group, would not talk with me — nor would surgeons tho other docs would), and eventually to chaplains and the director of mission and ministry (not a chaplain, interestingly) at a Colorado hospital chain. I don’t have a wide sample set, but when I encounter chaplains, for instance, sharing a panel stage at the 2009 HCA annual ethics conference, down in Nashville, I got the same verification. It’s not about religion or faith, it’s about their secular job helping people in dire need. And they do float around, and they do love to be called upon; that’s their mission. As for their historical role, I can’t cite a source but I’ve read about 5 dozen books of more as part of my research and curiosity including histories of hospitals so it arose somewhere along the line.

          It really stuck with me. I’ve fortunately not had to work it personally. But it makes perfect sense thinking about the history and development of life support technology and subsequent emergence of medical ethics.

          While we’re at it, chaplains are practicing ethicists, if you will. Academic ethicists may be another breed of cat. At the time I wrote my book I lumped them all together favorably. I’ve since become cautious about academic ethics, which I think includes overly microscopic ethical slicing and dicing from a silo mentality around EOL matters. But then, I’m a contrarian coming from a place favoring maximum personal autonomy.

        • Bart Windrum says:

          The main point being that when we need help in hospital we need it bad. Would that each room had a blue button to press for direct connection to patient-family support. Chaplains (perhaps any on-staff ‘patient-advocate’) have the potential to get things unstuck; they know everybody (assuming that they’re either on staff or regularly on rotation) and know enough about healthcare matters, I am given to understand, to grok things.

          To clarify my suggestion, it’s to meet w/the chaplain early on before any need arises at all, just to establish the connection and get on his/her radar. I’ve learned that a primary aspect of patient advocacy is thinking, investigating, and acting *way* in advance of any need. In many ways a frighteningly impossible job but one has to try, no?

    • Sam White says:

      Bart –

      Sorry to add to the sickening feeling. I’m grateful to Dr. Welch for writing. I haven’t been able to. But for my family it wasn’t one error, it was multiple errors by multiple individuals. The family is educated. One member is a doctor who had intimate knowledge of my mother’s medicine – and reactions. But he didn’t have privileges in that hospital. After moving her late at night the nurse was told that a combination of pain medications were known to create a fatal adverse reaction for her, not to give it and please(emphasize ‘please’) consult a physician. The sneer from her and the young resident sitting near her was palpable. It left the same feeling as a one finger wave at a hockey game.
      The nurse hadn’t even rounded the corner of the door after giving the shot than my mother started thrashing violently in the bed. With one fragile leg lodged in the bed frame I was pinned at her side, fearing she would break it, until seeing another person walk by the door.
      A week later I prevented another drug error. Then there was dehydration. And there was incompetence in controlling her pain so she would rest and eat. This caused her to waste and lose strength. Now without that strength when the next error ended her up in ICU the family members on duty, unprepared, had to make a decision to end life support. The resulting depression in multiple family members has lasted 6 years and has torn the fabric of the family apart. I don’t think it can be mended. The doctor-son went through some of the same questions regarding suing and felt it would be too difficult on other members.
      While this was going on the hospital administrators knew, though no one in the family threatened it, there could be a lawsuit. When I asked to talk to the chaplaincy for comfort and reconciliation I was refused. Three times. After the first refusal I responded to the junior chaplain, “Do you not call your savior ‘the prince of peace’?” The second time, “Did your savior not say ‘Give unto Caesar what is Caesar’s and give unto the Lord what is the Lord’s’?” The junior chaplain went back to the head chaplain and for the third time came back and said, “No”.
      This medically educated and usually strong family could not make a dent in this insulated and arrogant industry that corrupts all with hubris and greed. Including those who took an oath to the God they believe in. The chaplaincy callously turned their backs.

  11. […] me today, citing an online discussion of the appalling death in the Health Affairs column that Susannah Fox wrote about […]

  12. Sherry Reynolds @Cascadia says:

    We often assume when we read a moving individual story like those in Health Affairs Narrative that individuals have failed and that we as individuals need to find the solution.

    During the late 80s at the height of the AIDS crisis we felt exactly the same way as our friends and loved ones were not only dying but entire communities were being destroyed. I was a straight still virginal Sunday school teacher who had encouraged friends to come out and they ended up dead a few years later so I left my job at Microsoft and moved into working in the AIDS community at the height of the crisis.

    I felt a huge range of emotions at both myself and the health care system. Anger, despair, fear, and an over-whelming sense of futility until we formed a community and took collective action with patients, caregivers, health care professionals, politicians, companies churches to change funding, health care, politics, culture and moved AIDS.

    3x as many people die from medical errors every year as are dying from AIDS in the US..When you have a systems problem though you need a systems level solution.. It is decades past the time when individuals can fix this – we need a community campaign so that these stories that move us all so deeply are transformed into action.

    Who is leading the charge? Where is the campaign to save lives? What can you do to help? How can we all join together to not simply get our data but to save our family members lives..

    The goal is to put patients and their care givers onto the care team with not only the same access to information as the everyone else but to change their role from passive patient to fully participatory member of their own care teams with the systems level supports they need so that you don’t have to be a doctor or an advocate to be sure that your Mom won’t die before her time too.

    • David Harlow says:

      Sherry, I agree with you. We need a systems approach to solving this problem. I was going to write “and not just a collection of all of our personal stories and experiences” but of course the collection of the stories is what will lead, eventually, to systemic change. It’s tragic that the stories that have accumulated to date haven’t triggered widespread change. (See: To Err is Human; see also: Ten Years After “To Err Is Human” (HealthBlawg) – http://vsb.li/6T2pyD … “medical error morbidity and mortality is on the rise, not on the decline, despite the attention paid to this vexing issue in the decade since ‘To Err Is Human.'”)

      There are, of course, pockets of change – e.g. the University of Michigan health system – which have adopted the approaches they have (learning from mistakes and improving systems through a medical apologies program combined with a root cause analysis of medical errors) not entirely out of the goodness of their hearts but due to enlightened self-interest: if memory serves, U.Mich. has halved its medical malpractice liability expense since implementing its program. Many other places have implemented similar programs (see: Sorry Works) and, better yet, have incorporated the ideals of high-performance health care into their everyday operations.

      Based on the premise that the only incentive that works is a monetary incentive, Medicare reimbursement is slowly but surely moving into the realm of quality holdbacks/kickers – up to 2% of reimbursement at risk, payable only if quality targets are met in the fee for service realm, greater proportions at risk under new reimbursement schemes. (See: ACO, PCMH, CMMI, etc.)

      Slowly but surely, the supertanker is being turned. Until that turn is complete, however, we still need to be educated consumers, and we need to bring our trusted advocates (armed with notebooks) with us for our close encounters with the medical-industrial complex.

  13. Meddik says:

    I’ve been thinking about these articles in light of a tragic incident in New York City that took the life of a man: http://www.nytimes.com/2012/12/05/nyregion/suspect-in-fatal-subway-push-is-in-custody.html Part of the problem with correcting medical errors is that there are too many bystanders, too many people that do not feel they have the knowledge or influence to make a change. I wish there were more Jonathan Welch’s among us, but I’m afraid he (and many on this site) are the exception. Part of the effort to improve patient safety should include programs that increase health literacy, reminding patients of the quality care they deserve.

  14. wendy sue says:

    You know, I couldn’t even get through Dr Welch’s story. I simply couldn’t read it—it rang too close to home.

    As a physician, I too have had to play the role of savior/doctor/whistle-blower/irate advocate for my mom in an ailing health system. The only thing is I got lucky–I got there in time.
    One night nearly 3 years ago, I had to rush out of my own clinic (while seeing patients) to bust into the hospital who refused to recognize a life-threatening complication that my mom had developed on chemotherapy. When I arrived, the trails of errors was nearly unthinkable (labs sent under the wrong medical record number, a feisty nurse refusing to call the on-call doctor, nurses withholding lab errors/paperwork claiming it was a HIPAA violation to share it with me and misdiagnosing a condition called SIADH for “nausea”).
    It took my degree in bioethics, my training as a physician, and my years as a tyrant (ha!) to get her what she needed.

    I screamed and cried at the nurses station. I pounded my fist on the counter.

    Soon after it happened and my mom was okay, the medical director of one of the world’s most celebrated cancer centers called to apologize. He said he’d make sure it never happened again. That they would follow up with me and tell me the changes they made.

    I never got that follow-up phone call.

    And why I can’t finish Dr Welch’s post tonight is that I too know we all have to subject ourselves to this system. That we all have to care for our families and ourselves in these hospitals with their imperfect systems, exhausted employees and wonderful staff….Here’s to hoping my children become doctors, too. OR BETTER YET, we fix the communication lapses, egos, and ills before I get critically ill so that nothing horrific takes me away from my children too early.

    The reality is that doctors work so hard to do good work. So many incredible people leave their own families and trudge off to work to care for, perfect, and improve health care and patients lives. So many nurses and staff do such GOOD work, too. But we get lost and tired and overworked and we lose perspective. And we make mistakes.

    Here’s to hoping I finish Dr Welch’s post some day soon. And begin to share my own…

  15. First, thanks for the undeserved compliment.

    I give a workshop for GIST cancer patients called Ten Steps to Surviving GIST. One key point is to avoid hospitals whenever possible and to minimize your stay if you can.

    Hospitals are by their very nature chaotic places with multiple shifts of different specialists straining to communicate with each other. The more different specialists and departments that are involved the more difficult this is. When you factor in the medical egos that are involved the only question with any extended stay is not whether mistakes are made but whether they are life threatening.

    A clear example is the difficulty hospitals have in preventing hospital acquired infections. No medical breakthrough is required; simply “Wash Your Hands” will work. And yet this remains a major problem.

    The bottom line if you find yourself in a hospital is to have a smart, articulate advocate looking over your shoulder and questioning things.

  16. Bart Windrum says:

    These stories, delivered here compacted both individually and packaged together in this comment stream, bring to mind something that I believe needs to be said. It’s directly about the use of language, how crucial correct language is to frame our outlook. So lets formally say the charged word. Patient-families in the circumstances that these (our) stories hold in common have experienced abandonment. Abandonment comes in flavors: obvious, subtle, systemic, individual, unit, immediate, sustained, accidental, byproduct, designed, intentional. All flavors are bitter to our emotional taste.

    Perhaps if we, when we find ourselves as patient-families, were to use the term it might help spur some(one to) action (and here I’ll acknowledge that if we choose to use it we must show up sensitively in that moment; one of the great ironies and challenge of advocating when heath or life is on the line).

    I think “abandonment” joins “care” as charged terms and concepts that might profitably be openly examined in a patient-family centric context. I’ve come to challenge medicine’s claim to the latter and denial of the former.

  17. Stephanie says:

    This article and all of its comments present an incredibly important conversation on the urgent need for empowered patients in modern medicine. Medical errors are disappointing and disquieting instances that can (but should certainly not) occur within hospital and clinic systems and point to the need for better patient advocates. With this in mind, it is quite evident that the patient and his or her family constitute the natural base for an advocacy team. Towards achieving patient empowerment to avoid medical errors and promote better decision-making, developing patient-accessible medical records is key. By enabling the patient to read, understand, and check documentation of their treatment, many problems could be avoided. What I see throughout the narratives shared above are two problems – first, poor care by the medical institution on one hand and second, a lack of transparency in delivering patient care. Transparency could be enabled through sharing electronic medical records with patients, and by solving this problem, the overarching issue of medical errors could be minimized.
    Of course, electronic medical records present their own challenges, including cost and security concerns, liability issues, flexibility, rights, and responsibilities, which are explored by Beard, et al. in their article, “The challenges in making electronic health records accessible to patients.” However, by harnessing the technological capacities of the internet in an appropriate way, both patients and medical professionals can access and document progress. Additionally, as this site is already doing, it is also important to bring patients together to allow for sharing of experiences and critical information so that patients can best advocate for themselves towards more positive health outcomes. I hope that electronic medical records accessible to the patient as well will prove to help minimize medical errors.

  18. Bart Windrum says:

    Oh, Sam. For whatever little balm my response may bring, I’m sorry for what your patient-family endured. Mostly now I hope your family may reweave itself, warp by weft. Believe that I understand through direct experience multiple errors, snafus, and abandonments. Regarding abandonment by the chaplaincy, well I guess the certainty bloom is off that rose — maybe you should name the facility(ies). The most harmed of the harmed patient community would not be surprised and cite that as further evidence of systemic, white-wall collusion. It’s frightening, and hearing your story might lead us to despair of any remedy. As bitter and difficult as stories like yours are, we all need to hear them; maybe some crowd-wisdom may emerge to aid us going forward.

  19. Katharine Y says:

    I sincerely thank Dr. Welch for sharing his story–as a pre-medical student learning about healthcare and its weaknesses, I was shocked to hear the unresponsiveness of such a critical care patient, especially as TV shows make it seem like patients brought into the ER are immediately attended to.

    I hope by sharing your story here on the web and in publication that it has stirred about change in the local hospital where your family lives.

    It seems that there has been good infrastructure set up in other places of the country–the hotline for patients who are not getting adequate care and the committees which include patient input. When physicians are caught up in the busy-ness of their jobs, they may not treat some patients very urgently and that’s something that must be brought to the attention of physicians by the patients to prevent further victims of medical error.

    I feel that the increased role of the e-patient will play a huge role of speaking out on medical issues and problems, and rallying a community together to bring them to the attention of medical administrators, such as what you have done here. This transition should also come, hand in hand, with increased visibility of patient care, such as patient access to EMRs,and a better medical information transfer between medical institutions, so that patients who come to a new hospital have a record of medical history.

    In the end, instead of physicians and patients representing two separate sides of the medicine, the future of medicine must target a more integrated approach, whether it is sharing of medical information, receptiveness to criticism of care, and dialogue between the e-patient and the e-physician.

    • Bart Windrum says:

      Hi Katharine,

      As a lay author of a book on how to advocate when hospitalized (which came about due to the repeated severity of each of my parents’ terminal hospitalizations) I’m pretty tuned in to offerings by lay people — which by and large are superior to those by MDs who have also become patients. If you’re interested seek out work by Julia Hallisy, Jari Holland Buck, Helen Haskell. Find Patty Skolnik’s story. Read the Facebook ProPublica group page. Next year be ready for Katy Butler’s book (find her NYTimes article via google). These together will give you a good sense of the prevalence of “mishaps” or discontinuities (otherwise known, in lay language, as extrinsic shock and harm). Hopefully you’re coming up and will come into professional stature with better attunement to the plight of patient-families, and these books will help underscore those sensibilities.

  20. First, Jonathan, my heart goes out to you for your tragic loss, for which there can be absolutely no excuse…

    You mentioned a program at the University of Pittsburgh. Hah! We had to fight and fight in those hospitals a few years ago to cope with the series of medical errors and insane things doctors wanted to do to my brother when he was at death’s door. I went through living hell just to try to get some continuity of care with a single doctor overseeing the care, and it never did happen. The hospital itself did things like refuse to page the doctor I wanted to talk to, and opposed me at every turn. I lost count of the doctors who filed through there and the medication errors. Thankfully my brother was conscious at that point and able to advocate for himself on some matters, but it was unbelievable what he was never even told, that I had to find out by digging through his records my own self. (Which, BTW, everyone should do when advocating for a family member – don’t take anyone’s word for anything. Look at the records your own self and question everything – and cross-reference with what is actually seen at the bedside.)

    And then there were the conflicts between what was posted in the chart and what I *know* was actually done. Or not done.

    And the medication errors, some of which would have almost undoubtedly killed him if we’d have let them administer it. Thankfully I was there at the time and able to stop one of the most egregious.

    The cold hard fact is that people *lie* on the chart more often than you’d want to know, whether by design or error really doesn’t matter. The fact is that a hell of a lot that gets done (or missed) is recorded incorrectly.

    I even had to fight to get the nurses to wash their damn hands before touching him, and to gown up properly in a fresh gown, and my God, the attitude I got back when I insisted!

    So the hospital did send their “patient relations coordinator” to see me, and she was very nice and sympathetic, and listened patiently to my rants – but absolutely nothing changed.

    I started my own medical career (former paramedic) in that very hospital as a candystriper (Montefiore). I’ve been a life member of the women’s auxiliary for decades. My ancestors were among the founders of the hospital itself. I’ve been through many hospitalizations of family members and myself there, and I have *never* before encountered such rampant bad attitudes and massive errors, and absolute lack of coordination of care. I’ve *never* been refused permission to have the doctor of my own choice see me or the patient when he’s had privileges there until then, when facing one of the most critical situations we’d ever faced.

    The only reason my brother got decent care at the end of the day is because I hired private duty nurses and aides to sit with him around the clock, and spent virtually all of my own waking hours if not with him and questioning everything, then on the phone or talking personally with someone about him – and about the errors and omissions.

    Don’t even start me on the recurrent hospital-borne infections he suffered there and in Presby that nearly killed him more times than his original condition. They told me he came in with one of them, which I don’t believe for a moment. I know for certain he didn’t come in with the others.

    I recall an article in Time Magazine a few years back that talked about how bad the problem of medical errors in the hospitals had gotten. The chief of medicine of a major prominent medical center had to actually take a leave of absence to sit with his own wife in his own institution to advocate for her around the clock to keep her from being killed by the hospital.

    The article also talked about how hospitals routinely fire doctors and nurses who are whistleblowers about poor patient care and medical errors, forcing people who need their jobs and care about their patients to walk a tightrope balancing between what is right for their patients and what they have to do to keep a roof over their own heads – and to be able to keep doing their best for the patients even when stymied.

    Something is rotten in the system when even doctors can’t get proper care for their loved ones in the hospitals they themselves administer and it takes screaming and yelling and cornering and badgering people endlessly to the point that they dread seeing you coming and talk about you negatively to each other in the cafeteria to even get people who ought to know better to wash their damn hands before touching a patient.

    I don’t like having to be in people’s faces like this, and it *does* unfortunately tend to prejudice them against your loved one (and you) to do so, but as long as it remains the only way to actually get things done that absolutely must happen, it’s something that we have *got* to be willing to do.

    This whole situation absolutely has to change. All the advanced technology in the world isn’t enough to save people when the caregivers themselves are so lax and oppositional to any input from the patient and family.

  21. Roni Zeiger says:

    So many reactions and emotions… I’ll share one. I don’t accept this statement:

    “[The internet] can’t make an individual oncologist order the right protocol…”

    What if the patient could share her status and current doctor’s orders in real time with her loved ones, or even her Twitter followers? If a concern were retweeted enough (or equivalent), perhaps the hospital would feel obliged to listen.

  22. Peter Margolis says:

    Those of us interested in transforming quality (not just incremental improvement) face such an uphill battle to cause the needed of process and cultural changes. It’s not a matter of lack of desire in the medical community. As clinicians we care dearly about doing the best. But we need everyone’s awareness and involvement to go faster.

  23. Hello all.
    It is gut wrenching to read these two stories. Like watching a car wreck in slow motion. The anguish is palpable. Preventing stories like these from ever starting is exactly what patient safety is all about.
    Improving outcomes and experience and value is quantifiable and measurable by positive trends. Safety is a dynamic non-event. We never know which family is helped and never has to write a story like this. Everyone knows someone who has had a similar experience. One of the early signs of improvement in patient safety will be when fewer and fewer of us actually know someone this has happened to. The improvement in safety will need to be won day by day, patient by patient.
    Stephen E. Muething, M.D
    Vice President for Safety
    James M. Anderson Center for
    Health Systems Excellence
    Cincinnati Children’s Hospital Medical Center
    PH: 513/636-2068

  24. […] fact it is all part of one system. I was also thinking to myself that patients and caregivers are screaming out to be heard but aren’t on the official health care org chart — or are way at the […]

  25. […] people should speak up about medical errors before—and after—they […]

  26. […] people should speak up about medical errors before—and after—they […]

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