Saturday, November 13, 2010

"I See You"

LaTia tells us about her stillborn baby girl. Holly takes notes with a specially adapted laptop, having lost her eyesight nearly ten years ago. John says his son, who died eight years ago, would have just had his 27th birthday.

Was it car accidents? Genetic disease? No and no. The thirty or so people attending this conference are survivors of an adverse medical event:  LaTia was given someone else's medication while pregnant; Holly woke up blind after a slip of the surgeon's scalpel, and John's son died in a Texas hospital after misdiagnosis and miscommunication by his doctors. Each could recite the date of the Event as easily as their own name; each is finding a way to go forward after a sudden and preventable event left them forever damaged.

Damaged, but not broken.

We are all invited here by Consumer's Union. It is a non-profit organization, a branch of Consumer Reports, working to change laws and forge tactics that will keep patients safer from medical harm. We are a diverse bunch; a NASA scientist; a couple of RNs, a college law professor, a landscape contractor. We network, we comfort, we share our triumphs and discuss our hurdles. We know that 99,000 people a year die of hospital-acquired infections that are largely preventable; and that some 98,000 people die each year of medical error, but when we tell our stories to others (even when they ask), we can see the thought running through their heads: Oh, that's terrible; but I'm sure it's unusual. The doctor must have been a bad one. Hospitals are pretty safe overall. We want to shake them, make them ask questions, help them avoid the heartache of a loss that can't be undone. And so at this conference we decide that two of our goals are increasing public awareness and drafting a Patient's Bill of Rights (at last! It's been John's mission for the last several years).

I leave the conference energized, and certain of two things: one, that there is more strength and inspiration in this group of survivors than they can possibly give themselves credit for. Witness Holly, who after losing her eyesight, went back to school and got her Master's degree and does rehabilitation counseling. Or Alicia (dear, warm Alicia) who spent the last four years dealing with a gaping wound in her abdomen following a bout of necrotizing fasciitis (flesh-eating disease) after routine surgery. She nearly died - but spent her darkest days comforting her family and her nurses, and maintains a joy and humor as humbling as it is inspiring. Or Patty, whose only child had needless brain surgery that left him quadriplegic and needing 24-hour care...for three heartbreaking years. After his death, Patty founded an advocacy group that brought doctors and hospitals to the table, all working toward a common goal of improving the situation for others.  Remarkable work, and it continues...but the warmth and compassion that make her such a successful broker of consensus is missing its rightful mark. She has no child to love. She shows me a heart-wrenching film of her son's story, a painstaking recounting of the mistakes that were made. Through my tears I commend her for helping create this powerful educational tool, that will be used by hospitals and care teams around the country, and for turning her son's death into something so meaningful.  Normally, she responds in the affirmative. She has accepted awards for her patient advocacy and has said all the right things. However, tonight, she is a mother bereft, and the public face dissolves. "All I want is my son. I want grandchildren. And I will never have them." It is almost too painful to bear.

(There are so many remarkable people I learned from, and I hope to write more about them in the days ahead. I have not yet asked if I can use their full names, stories, or link their websites, but you know who you are - so let me know how you feel about this.)

Which brings me to the second thing I am certain of: there is so much collateral damage from these deaths and injuries, so many families that would do anything if they could just get a "re-do". Which of course they can't. The pain living inside some of these people is still raw and rampant; in others it's like scar tissue, thich and toughened. There is much healing that needs to be done, so that these lives can continue as fully and richly as their lost loved ones would want for them.

So, I left the conference determined to start a blog. Maybe because Patty said she felt I understood her pain (even though as a mother of three, I can barely touch the edges of imagining her loss). Maybe because I saw how sharing time together in this community - even for a few days - helped us all feel, known, seen, and listened to. Maybe that's all some of us really want - to be sincerely told "Yes, it's terrible. Yes, it was wrong. And I am so sorry."

I decided this blog would be about healing...about striving for the positive, the affirmative, the optimistic thoughts that comfort you and help or helped you heal following your adverse event. So I ask you - what keeps you going? Or gets you out of bed? Or helps you stay sane? Did you have a day-to-day strategy? Did someone in particular help you, or just be there for you?  Did you have a caregiver who went out of their way to help and comfort you? A doctor or nurse that called late at night to make sure you were OK? A friend who knew just what to say or do at just the right moment?

Hoping you'll share. And hoping we can help each other make things a little better.


  1. Pat, your first blog entry is wonderful. It expresses my own thoughts so nicely. We are such a unique group at CU. We all have the pain and grief, but we also have our accomplishments and growth. We validate and comfort each other. Most of us have faced such adversity in our work, but when we gather together with the others at CU, they GET it!!
    Thanks for putting your time into this beautiful blog entry. I will put it into my favorite places right now.
    Kathy Day

  2. Thank you so much, Kathy. Your commitment to this issue and this group is extraordinary, and your legislative accomplishments speak to the power of one person who "won't go away". Your Dad would be so proud.

  3. Pat,

    Thanks for doing the blog, and thanks to CU for bringing us together. I've come to the conclusion that there probably needs to be a national or umbrella organization that represents the interests of individual advocates and advocacy organizations. This umbrella organization would keep track of what individual advocates are doing, help share information/ideas, and promote our interests at the national level. Membership would be free; we would need foundation funding or government grant. The annual summits that CU holds has served, to a certain extent, to fill this void, but maybe something more formal needs to be considered. If all the provider groups can have their "national organizations (AMA, AHA, etc) why can't the patient advocacy community.

    Perhaps those of us going to the IHI conference in Orlando in Dec.
    can discuss this further.

  4. Beautifully said, Pat. Thank you! CU is a group of wonderful, strong, compassionate people who have been let down by the medical and legal industries, and are standing up to fight for the lives of others.

    Suzan Shinazy

  5. Suzan, thank you, and asl, excellent suggestion and one I would love to discuss at IHI conference next month. Please let me know how to connect with you.

  6. Hello Pat:
    Your writing is full of depth and compassion. When I started attending CU events four years ago I too was astounded by the strength of these survivors and started writing about it.
    Initially, I was amazed by the range of people’s responses to my situation and compared the vast differences between Sympathy and Empathy. Later, I became convinced that a single person expressing true Empathy could ignite deep Healing. After talking to many of our wounded friends I began to feel that these trials can truly be turned into a blessing instead of a curse.
    For a while I was certain that the difference between the bitter wounded and the inspired wounded was faith in God of any creed. It wasn't that simple. Some with no particular faith chose very inspiring lives while some with faith became truly bitter for they had two to forgive, their Doctor and God himself. The true magic of these gatherings of wounded souls is that they break Healthcare's cruelest myth; that we are alone... one in a million flukes. Shared suffering is one of the most profound experiences on this earth.
    Keep up the great Blog , I am sure that it will be successful

  7. Thank you for your kind words, Kerry. This is high praise and an eloquent, thoughtful and thought-provoking response, not surprising from the "numerator" author of this:

    In my next post I will tell you my favorite parable, which relates to this, I think.

  8. You just made the world better, again.

    Its fun and inspiring to watch you explore. :)
    Here when you need me.