After my daughter’s death, I work to prevent future deaths

Another disturbed and disturbing night.  It doesn’t happen often three years later.  Now – when it does happen – I generally know why.

I am preparing to make a presentation of a sentinel event from my daughter’s final illness to a group of medical professionals and patient advocates.  Last night, I was working on key points.  What issues seem most important for hospital staffs to address after these years of reflection?

I am convinced – have understood for some time – that the fundamental issue is not that my daughter is dead or even how she died.  The basic issue is, “Can we learn anything to prevent future deaths?”

The conference presentation makes use of the past to inform the future. I am co-presenting with a chief medical officer of a hospital system in another state.

Recently, he asked me how I am able to do this – stare into the disaster, sort it out, convey a message of hope.  He asks, “What separates people like me who work toward improving safe and competent care from people who cannot move beyond paralyzing grief and anger?”

Such questions make me uncomfortable, because – if you asked my daughter, she would say, “Well, you couldn’t work enough Mommy magic to save my life.”

I live with that every day.

Perhaps the explanation is simple.  She lived for years with a rare, usually non-lethal illness (Behcet’s Disease) that imposed sudden emergencies.  She had coded several times before.  She’d been in ICUs before.  We knew there were risks any time she went to the hospital if doctors didn’t understand.

After so many crises, you simply don’t react the same way anymore.

For many months after – I woke up exactly at the moment doctors stopped CPR and declared her dead – 0519 – and stayed awake the rest of the night.  If I hadn’t been retired already, I probably would have lost my job.  If I had children to care for, that level of fatigue would have left them lacking the parental care they deserved and needed.

For the past ten years, I had been writing poetry.  So, I wrote some poems.

My daughter, Millie Niss, was a web artist and poet.  That first year, I collected her poems for a publisher who solicited them (City Bird, Blazevox, 2010).  I submitted her work, arranged for permissions, cared for her literary legacy, participated in tributes and conference presentations in her honor.

That work, partly because of her wicked sense of humor, sustained me, gave me time to regather my energy, and prepared me for the next task: Telling her story of illness both in my words and in hers as well as her story in official medical documents.

That first year,  I also assembled her medical records as I had following each previous medical contact,  filed two complaints with the state department of health, canceled her appointments, disposed of her medications and equipment.  I decided against litigation.

The second book was painful even though I sweetened the task with a decision to experiment with graphics and book design, much as Millie and I had done in our collaborations.  But, this was a project Millie wanted, and I knew that this second book would force me to work through the issues surrounding her illness and death sufficiently to provide a basis for broader patient safety efforts.

By profession, I am a psychologist clinician and  a researcher.  By profession, I have been involved in patient advocacy and systems analysis.  By profession, I have given many workshops, conference presentations, and – more recently – poetry readings.

My obligation as a parent and as a social scientist engaged in patient advocacy is to do what I can to help health care providers in their work.  As a layperson, I can’t do much to improve patient outcomes; I have neither the education, nor the position to change anything within a hospital or medical office.

What I can do is to say, “Here is our experience.”  This is what I have thought about it.  If either our experience or my ideas are useful to you, I would be honored to be part of the effort.

Martha Deed is a retired psychologist and author of The Last Collaboration.

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  • ninguem

    “She lived for years with a rare, usually non-lethal illness (Behcet’s Disease)…..”

    Mortality of Bechet’s disease can be 15% at five years from diagnosis.

    http://emedicine.medscape.com/article/329099-overview#showall

    “…..that imposed sudden emergencies…..”

    Like ruptured coronary or pulmonary aneurysms. neurologic involvement with mortality up to 20%, thrombosis, Budd-Chiari syndrome, (thrombosis of hepatic veins), blindness……and in this case, by your description, cardiopulmonary arrest.

    http://www.ncbi.nlm.nih.gov/pubmed/20496419

    By your own description, your daughter was pulled from the edge of death many times. This is a disease that usually attacks young people in their 20′s. You describe yourself as retired already at the time of her death. Sounds like she lived a long time with a dangerously severe disease.

    I’m sorry your daughter had such a bad disease. I’m sorry she died young. It’s a shame, but the autoimmune disease called Bechet’s Disease did that, not the doctors. Not the hospital. They worked to save her. It sounds like they did, many times.

    There’s always things the docs and the hospital can do better. Just from your description, I have to conclude the odds finally fell against her.

    • http://www.facebook.com/brianpcurry Brian Curry

      Are you for real? Do you honestly think this woman needs for you to respond thus? You haven’t the slightest clue what avoidable errors were or were not made, what her level of understanding is, or really, anything about her or her daughter. Yet you feel that the proper response to this article is a condescending EBM session and the statement “the autoimmune disease called Bechet’s Disease did that, not the doctors. Not the hospital. They worked to save her. It sounds like they did, many times.”.

      What a maroon, always looking for a fight.

    • http://www.facebook.com/michelin.anderson Michelin Anderson

      You are a medical care giver – I can tell by your jaundiced, callous statement…..’I have to conclude the odds finally fell against her’. You did not read her recorded history of her hospital stay – yet you make this statement. Poor unfortunate medical care givers – if there is more than one problem – it’s beyond them. Basic healthcare methods are just too much trouble. Your attitude precludes any humanitarian intellect – first do no harm – has nothing to do with today’s medical care.If a patient presents with more than one, outside the norm ailment – they are labeled as ‘difficult’. It’s now a given – handicapped, deaf, blind, really sick – the odds are not good for healthcare. Hubris much?

      • ninguem

        “You did not read her recorded history of her hospital stay”

        Yes I did. Complaints were filed with the Department of Health. The DOH found some charting deficiencies, but overall care was within standards. There’s always things that can be done better.

        I never said there is no error in healthcare delivery, even fatal error. This is not one of those cases.

        To overstate the problem of error in healthcare results in cottage industries exploiting the matter, creating complexity without function. No improvement in safety, but great profit for the cottage industries.

        • http://www.facebook.com/michelin.anderson Michelin Anderson

          “Yes I did” – have you always had a comprehension problem? Sensitivity void? Is it just lay-people who see the attitude? Patient harm is only reported at a 5% rate – it is controlled by board certified medical staff. Only those can ‘judge’. Could this be the reason the reason the US has slipped to #50 rating in healthcare – except that is not the REAL figure since ‘standard of care’ means if we all do it – it’s okay? High horse – how about reality based on fact? Boo-hoo for you having to fill out more falsified documentation. Except you all have staff to review records before they are released – removing certain words/facts that are no-nos. Thanks for your UN-biased comments – they add so much to factual discussion. I did not put any words in your mouth – you are replying to me re no errors and overstating? Projection on your part. Stay focused on the topic.

    • http://www.facebook.com/people/Kathy-Day/100000711671956 Kathy Day

      I disagree with you. Millie’s death was because nobody assessed and fully evaluated new paralysis. The paralysis was caused by MRSA in her spine, not found until post mortem. The MRSA was hospital acquired. True, Millie was ill and had been for many years, but that is not an excuse for errors, failure to recognized problems, failure to diagnose appropriately, Hospital Acquired MRSA and the many other oversights,omissions and harmful events that occured during MIllie’s last stay in the Hospital. If that was the standard of care in that HOspital, then those in that Hospital’s care need to be very cautious, or else consider care elsewhere.

  • Caitlin Peebles

    Martha Deed’s daughter Millie Niss died from an hospital-acquired infection (among other things). I suggest that anyone thinking of criticizing Dr Deed for this post or for her advocacy work at least skim her book “The Last Collaboration” before they start typing, lest they embarrass themselves and insult both the memory of an extraordinarily intelligent and perceptive young woman and her equally intelligent and perceptive mother.

    I think medicos and patients alike would do well to read the account of the circumstances leading to Millie Niss’s death. It’s available free online if you follow Dr Deed’s links. I read it after her post here last month, and can’t recommend it highly enough.

  • ninguem

    Actually, the story IS on-line. It was put together in a book. As mentioned elsewhere, and I did read it.

    As I said, I’m sorry she died, and I do recognize that she was an extraordinary young woman, cut down in her prime. The story reminds me of “Death Be Not Proud” by John Gunther back in the 1940′s.

    But from everything Martha has written about her daughter’s unfortunate death, I stand by what I wrote.

    She died of her disease and complications of her disease. She went to the hospital, a community hospital, critically ill, with life-threatening disease.

    She filed complaints to the State Department of Health. They’re in her book. The Department of Health responded, after review, that care provided was within standards. The only citation I noticed was for documentation deficiencies.

    Unfortunately, the correction will likely result in even more cumbersome documentation. When I get one of my patients back from the emergency room, even a relatively simple visit results in a 10-page document, 9-1/2 pages of which is irrelevant to ongoing care.

    Care was not 100% perfect, and never will be, at any hospital, anywhere on the planet.

    The Titanic sank because of an iceberg, design flaws in the ship…….you know the story. Somewhere in the disaster, it would not be surprising if someone flipped a lifeboat.

    You run lifeboat drills. You do not blame the sinking of the Titanic on the flipp0ed lifeboat.

    I wasn’t there. I don’t know the parties personally. I am involved in healthcare safety. I have reported a physician to the Medical Board for poor practice, and another for drug abuse. It doesn’t do much for your popularity on the medical staff. Actually, the drug-abusing doc thanked me for intervening, and the doc is back in practice, clean and sober. Patients love the doc.

    I’ve also supported docs railroaded by bad-faith peer review.

    Nevertheless, contrary to all the posters on their high horses, in fact I have read the links mentioned, and I stand by what I wrote. Care was not 100% perfect, it’s delivered by human beings. She went to the hospital critically ill, and she died of her disease and complications of the disease.
    What I think does not matter. What does count is the state department of health felt the same way.

  • http://www.facebook.com/profile.php?id=100000566557918 Martha Deed

    Thanks to all who have commented. These conversations are difficult, and this one took an unexpected turn that perhaps I should have anticipated, but didn’t.

    Discussion of Behcet’s mortality, Millie’s cause of death, as well as the citation Ninguem referenced need clarification. Ninguem provided some good links. AC Posadas cited a 16% mortality rate at 5 years post-diagnosis in his excellent article on Behcet’s. He did not provide a source for that figure.

    D. Saadoun et al is more specific. They found a 5% mortality rate at a median of 7.7 years follow-up. They noted that 95% of the deaths were of men.

    Millie died less than 3 years post-diagnosis. My understanding of what caused her death comes from the pathologist who performed her autopsy and Millie’s Behcet’s doctor who interpreted the autopsy results to me.

    The pathologist asked me if I was angry about Millie’s death and told me I would become angry when I received her report.

    Millie’s Behcet’s doctor was associated with a tertiary care center 75 miles from home where Millie obtained most of her Behcet’s care. He told me Millie was not in danger of dying from Behcet’s, that she died of a spinal infection which is survivable if found and treated. Millie died of multiple hospital-acquired infections.

    Millie had not coded previously due to Behcet’s. She coded in another hospital a year earlier when she was given a drug overdose in an ER. Rescue succeeded. Doctors explained what had happened, and Millie survived to write more web installations.

    But that experience underscored our apprehension any time Millie required hospital care.

    Millie contracted H1N1. Because she was too ill to travel to the tertiary care center, she went to a local hospital after several days of daily home monitoring by her local primary care doctor and an RN who consulted with the primary care doctor from Millie’s bedside at each visit.

    Ninguem referred to the state health department citing the hospital for a “documentary deficiency” in Millie’s care, which sounds minor. The hospital was cited for not connecting Millie to a bipap machine ordered by her doctor to assist her breathing after she was transferred from the ICU to the telemetry unit. As a result, Millie had to be re-intubated at bedside and re-admitted to the ICU. That error did not cause her death directly,
    but may have contributed to it.

    Millie and I understood that the doctors and nurses were trying very hard to save her. The issue is not whether they were trying to save Millie and the other patients who also died of HAIs along with Millie. The issue is that medical staff needs the resources – working conditions, equipment, staffing– that will lower the number of preventable patient deaths and
    injuries.

    Communications need to be clear and complete. Serious patient-staff mis-communication hindered Millie’s care,. Staff-staff communication problems complicated Millie’s treatment also.

    Whether we are patients, family members or medical caregivers, we all want patients to live as long and as well as possible. If visitors here or readers of The Last Collaboration have further questions please feel free to contact me.

    • ninguem

      And there you go……without the namecalling others did. You should see some of the comments that got deleted.

      She had a severe disease, and yes, I’m sorry she’s gone, sounds like she was a brilliant and remarkable person. The good die young as they say.

      I’m gonna live a thousand years.

      “Error”, “opportunity to improve care”, sometimes it’s hairsplitting. It’s like the acrobatic act where they spin plates on the poles. You get enough plates, sooner or later one will fall off. Whether that’s an error, or too many plates to spin can be debated.

      Sounds like all were trying to do their best. Things can always be improved. You can see from the namecalling, there’s a problem when you try to review these things and have a frank discussion of system failures.

      The British had….probably still have….a “confidential enquiry” system for perioperative and maternal deaths. Advantage in their system, FWIW, is they can have such a process created by royal decree and immune from lawyer “fishing expeditions”. Then the people involved can really speak frankly without worry of getting dragged into court.

      Best equivalent we can do here is a “closed claims” project, where the matter has been litigated and closed already, so no risk, or maybe I should say less risk, of getting dragged into court again. The trial bar being nothing if not creative, I would imagine they can always find ways to sue.

      • http://www.facebook.com/profile.php?id=100000566557918 Martha Deed

        Spinning plates on poles is a really good analogy for health care challenges. And the “closed claims” idea is very intriguing. It’s similar to what I’m doing with the chief medical officer of a hospital in Maine in April.

        It’ll be interesting to see what the response is in Maine and what issues the CMO addresses.

        For what it’s worth, I lean heavily toward the “too many plates” explanation.

        Not an easy problem to solve, but everyone would be happier and safer if we could.

        Thanks for responding back.

    • southerndoc1

      Serious and moving discussion.

      “The issue is that medical staff needs the resources – working conditions, equipment, staffing– that will lower the number of preventable patient deaths and
      injuries.”
      Everyone I know working in medicine today feels we are moving rapidly in exactly the opposite direction. Things are only going to get worse, not better. It’s all about corporate profits.

  • http://www.facebook.com/profile.php?id=100000566557918 Martha Deed

    Thanks for these links. These are good to know. I’ll take a look. As for legal liability, I’m guessing (but, obviously, do not know for a fact) that the risk might vary from one state to another — so it might be possible to think about this happening “somewhere.”

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