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Friday, October 23, 2009

Thoughts on Medicine and Social Media

On Wednesday, May 27, 2009 I met Dr. Ted Eytan. I was invited to present a patient and caregiver view of hospitalization at a small health 2.0 meeting. I saw Powerpoint presentations with bar charts and graphs. I sat patiently taking notes about the state of ehealth and social media. At around 3:15 I spoke. I described the horror of my husband being diagnosed with cancer and of terror of not being told what was going on. I spoke about the fight we had fought to get to get a copy of the medical record. I recounted the numerous times I had used the information in his record to improve his care. The record sat upon the table in a three inch thick binder. There was silence in the room. We were no longer speaking in the abstract about patients. They asked me to focus on what was the worst thing that had happened through this entire tragedy. I told them the worst thing we experienced was lack of access to my husband’s data.

On March 27 my husband, Fred Holliday, was diagnosed with probable Renal Cell Carcinoma. Within one day, I became an e-patient, a caregiver and a medical advocate. I would use the internet for both research and patient/family support. To help my husband receive the best care, I surfed the internet at night; researching his cancer using Google, reading the Wikipedia entry on RCC with all of its links, and finding personal cancer stories. Facebook became the information source on Fred’s medical status. I would take a few minutes each night to post to the 100 plus people following Fred’s care. Within days of diagnosis, two of my friends had set up a Lots of Helping Hands account. This online network, which rapidly grew to 150 volunteers, would fundraise and provide meals, babysitting and groceries. This pool of helpers was immensely diverse. Before sites such as Lots of Helping Hands, orchestration of a volunteer effort this complex would not have been possible.

My husband was the model patient: he never complained or caused trouble. We were at the first hospital for four weeks with the only treatment being palliative radiation. My husband walked into that hospital but by week two he could no longer stand and could barely sit. We had no chemo or surgery. I wanted to know what was going on, so on Friday, April 17 I went down to medical records to ask for a copy of his chart. They told me it would be 73 cents a page and a 21 day wait. The next day the oncologist came into the room. It was 9:30 AM on a Saturday. We had a list of questions ready. We had questions like: "When will we have surgery?" The doctor had a different answer. “We have decided to send you home on PCA pump.” I found out later that “we” meant the hospital, the oncologist, and the insurance company, all privy to this decision days before Fred and I were. I had done my internet research. I knew exactly what was going on. This was home hospice. Fred was being sent home to die. The doctor left the room. We cried. Then Fred told me to go after them.

We had to suffer and wait that entire weekend, but on Monday I took action. I fired the primary who never visited. I asked my own primary if he would take on Fred. He did and could get him transferred to another hospital. I found an oncology group that said they would see him. I spent three days organizing transfer. Fred’s nurse navigator from his insurance company was so frustrated by how hard it was to complete this transfer that she was crying to me on the phone. I was warned by internist that this was not how things were done. The oncologist stormed angrily into Fred’s room saying, “So you are transferring? Well no one will give you surgery.” He left and I told the head nurse I wanted him barred from the room.

We were transferred on Wednesday April 22. We were sent with incomplete and out of date records. Fred was denied care for six hours while the nursing station tried to cobble together a record. Without a current MAR, they came to me to ask what kind of patch is this and when was it placed? Both Fred’s lidocain and fentanyl patches weren’t labeled or dated. Five days before I had asked for the medical record. If only it had been given to me then, Fred would not have been suffering in pain as we tried to recreate a medical record from memory and a fax machine. The next day I was sent back to the first hospital to get the record. In hour and a half they printed out the entire EMR. I gave it to Fred’s new doctors. They looked it then gave it back to me. They said it was safest with me. Fred might go to many facilities but if I kept it his record it would follow him. I spent the next six hours organizing and reading Fred’s record. I found so many mistakes. If I could have read the record on a daily basis his care would have been so much better.

Each night on Facebook I posted the tragedy of our life. After receiving advice from Christine Kraft, I began to use Twitter. I did this very scary thing to find one man: e-Patient Dave. He was a well known e-patient and a kidney cancer survivor. Within minutes of my tweet we were in contact. We emailed back and forth that night. Then he called. By 10:00 that evening I was talking to Dave’s physician about my husband’s cancer care. I told him about Fred’s current status and my research and concerns. His quiet calm support helped me to face what was becoming very evident in my mind: it was too late for Fred. His current oncologist was doing everything that could be done in Fred’s advanced state of disease.

During all of this confusing and frantic time we were using technology in a different way. We were using it to wrap up the loose ends of a career and a life. When Fred was first admitted he could still stand and walk some. There was a computer room at the end of the hall. If he could walk down that hall Fred could spend a few agonizing minutes surfing the web. He would post to friends and be himself in 12pt font. Soon he could not do that. Fred was a professor of film studies. When he was diagnosed he was still teaching classes. We spent some days getting his class grades compiled. As he was reading one paper, he turned to me and said, “Reggie, try typing a line of this paper onto Google and see what comes up.” I went to the computer room. It was plagiarized. Fred missed the access to the internet and the freedoms it entailed. I got our old laptop refitted for WiFi. Fred was so happy. But within weeks were transferred to rehab and hospice where no WiFi was available. Pain can treated in many ways, with fentanyl, lidocain, and PCA Pumps. But one of the best sources of pain relief for Fred was the internet: access to sites such as Facebook, IMDB and Ain’t it Cool News. So nightly, I would come home and call Fred and log on. I would read him all of his email and post his status. And then we would say goodnight.

On April 29th 2009, I sent out an email blast to everyone I knew. I was appalled at the care patients receive: the lack of access to data and the lack of coordination of care. I had worked retail since the early 1990’s. Who has heard of a decent-sized store that doesn’t have a POS system? What business provides service without an itemized receipt? And I have yet find a store that charges the customer for their copy of that receipt. I had been a special education advocate for my son since kindergarten. I had been part of many IEP meetings and had read reams of test results as was my right under the Freedom of Information Act. But in my role as caregiver and patient advocate, I was told by medical records personnel if I wanted a copy of Fred’s medical record I would have to paying 73 cents a page and wait 21 days. How can a patient or care-giver be part of the team if they have no access to that data? In my email blast I spoke of all those families and patients who suffer in silence. I would speak for them. I would paint medical advocacy murals on the walls of Washington, DC.

While Fred was in Hospice care, I placed the first mural. The Medical Facts mural as a re-visioning of the face sheet mimicking in style and clarity the nutrition facts label: all important, vital statistics are present with norms for comparison. How do you know your blood pressure is high or your hemoglobin low if you do not know what normal is? Where are the bone mets and the soft tissue mets? Where could you harm this patient just by touching him? Fred was injured twice by techs moving his body who had no idea of the extent of his disease. I asked a nurse, “Who reads the medical record?” Her response was “We read the face sheet and maybe the most recent pages.”

In early June, sitting at Fred’ side, I began drawing the design sketch for the next mural: 73 Cents. This would be a cross between Guernica and Death of Marat with a little Diego Rivera thrown in. This painting would depict our family’s struggle, imprisoned in a hospital where no one is communicating and data is stuck in an internal loop. The figures in this piece would be separated in darkness, and no one would be making eye contact within the frame.

On June 17 Fred died. I was his caregiver for his last six days. In home hospice I was in charge of the MAR that I fought so hard to get copies of in the different hospitals Fred had been in. I was the one who gave him his last meds at 7:30 AM. I helped the hospice nurse roll his body to clean him up for funeral transport, and in so doing, held his still warm body one last time. I hadn’t hugged Fred for two months at that point. It had hurt him too much to be hugged. Now I could hold Fred near and cause no pain.

On June 21 and June 22 I sent another mass email telling everyone I knew I was going do everything in my power to fix a medical system that keeps patients and families in the dark. I would post on Facebook. I would blog. I would Twitter. On June 23 I began painting 73 Cents. In the next two months the painting would receive worldwide press. It would be the subject of blog posts, tweets and the AOL Splash Page. It would make the cover of the BMJ. The world was talking about patients' rights and data access. This was caused in part by paint and social media. If using social media could get our message out to the world think of what could happen if the medical establishment and empowered patients embraced it.

25 comments:

  1. It is such a sad and moving story - I am so sorry for your loss and applaud your advocacy efforts.

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  2. As much as I know most of your story already, this is still heart-rending, and reprehensible.

    Sometimes I wonder how the people in those jobs can sleep at night, but I know it's because they really don't see (yet) that it doesn't have to be that way. It's our job to wake everyone up. When we do that, the rest will be relatively easy.

    I sure admire the power of your communication - not just the painting, but the power of your words, too.

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  3. You rock . . . and I mean it both ways, Reggie.

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  4. Reggie, this story is powerful on many levels. Sincere condolences to you on Fred's death. Thank you so much for sharing your story and your fight for people's rights. The hallowed halls of the health system need remodelling and a repaint and your work will certainly do that in the right way.
    You are a great writer. I'm glad there are people like you.

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  5. Regina, thank you from another patient for all you are doing. At some point in our lives, we will all be patients (and so will our loved ones), and we all need to listen closely to what you are saying. I appreciate you. And I'm so sorry it has been such a tough road. I care. Many hugs....

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  6. Regina,
    You are amazing. You are on the right side. You have millions behind you.

    Vince

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  7. I'm very sorry to hear of your loss and the treatment you received as it is not supposed to be that way and they should have told you it was hospice, but good you read and found out on your own so you were not completely in the dark and glad you found social connections that could help you through.

    Thank goodness all doctors are not like those that you described and unfortunately had to experience and the transfer mess you described should not have been that way either. Take care and thanks for sharing with all of us.

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  8. Regina, telling this story is no doubt painful for you. Thank you. This post should be read by every physician. And thank God we do not yet have a socialized medicine program. Imagine what that could be like. The tale is really disgusting....Unfortunately your story is far from unique. I offer the condolences, and reassurance that Fred and your suffering will serve a greater purpose.

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  9. Thank you for sharing your story. God bless you.

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  10. Thanks for your story. Unfortunately our healthcare system favors those with the knowledge (doctors) or those who are empowered to ask questions and take charge of their health, themselves, and their loved ones. The latter group often do so not because they want to but because they have too as our system is broken and dysfunctional. Keep up the good work.

    --
    Davis Liu, MD
    Author of Stay Healthy, Live Longer, Spend Wisely: Making Intelligent Choices in America's Healthcare System
    Website: www.davisliumd.com
    Blog: www.davisliumd.blogspot.com
    Twitter: davisliumd

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  11. unfortunately establishing interpersonal relationships is not a skill taught in our medical schools. I appologize for my dysfunctional profession. I hope we can make it better for our children and grandchildren. A little comunication goes a long way.
    Kenneth Herfkens, MD

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  12. Regina,

    I knew Freddie when he was a boy of about 12. My husband and I had moved to Grantsville and Freddie and his sisters used to adore playing with our son, Alan, who was about 2 at the time. I remember Freddie as bright, sweet and kind, and my son certainly loved being with him.

    If you would like to email me, you're certainly welcome. I'm tallgirl10538@yahoo.com. I just feel moved to express my condolences, and my admiration for your advocacy, in a more private way.

    Take care, dear.

    Love,
    Vicki Conn

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  13. Dear Regina,
    I heard your story on NPR on my way home last night. The tears made it hard to drive. My deepest sympathies for your loss. I'm so sorry this happened.
    I hope that the awareness of just how inept and inefficient our medical communication system, along with so many other aspects of healthcare, is brought to a stronger forefront because of your story.
    It is reprehensible that in our day and age, critical medical information is so un-available to us.
    Blessings to you and yours.
    Tash

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  14. Dear Regina,
    Your story has brought me to tears. I am so sorry for your loss. I'm deeply moved by what you have been through, and what you have done with it.

    We went through an all too similar experience with my grandmother in what is supposed to be one of the best hospitals in New York. With my grown brother and my mother, the three of us aligned for her cause, we still struggled; constantly. They tried to push her out into hospice instead of giving her surgery... they didn't have the paperwork to give her pain medication, so she sat, suffering, until it went through... nurses didn't read her chart and gave her the wrong medication... And on and on. I think we just accepted all of it as just the way it is. You try to win the little battles as they come up.

    Your bravery, all on your own, is amazing. Your response to stand up and fight, to tell your story - in beautiful words and pictures- to push for change- is inspirational. Thank you so much.

    I send you big, heartfelt wishes for all good things now and in your future, to you, your sons, your family. Best of luck in your continued fight!

    Much love,
    Laurie

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  15. I lost my fiancee 10-20-1997 because she DID GET HER MEDICATION! Too bad we were on Medi-cal The doctor told her I'll see you next week to see how you are with the new blood pressure meds. Oh I'm sorry, you are on Medi-cal (a government care plan). The doctor said rules said three weeks till next appointment!!! She died 2 weeks, 6 days later. Government Health Care Killed My baby's mother. It would NOT have saved Fred! Captainkirk_108@yahoo.com

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  16. So sorry for your loss and sad to hear of your struggles with this disastrous medical establishment. Have much respect for your courage and your commitment to helping others. Beautiful and touching mural.

    Thank you for sharing

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  17. regina,
    it has been a long time. i am very sorry to hear of your loss.
    although my resources are limited please let me know if there is anything at all i can do.
    tyson schroeder

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  18. Ms. Holliday, thank you for sharing your gift of painting and your story. Your love and sincerity emanate throughout all of your blog, which I read entirely yesterday after learning about you through NPR. I was so rallied by you and what you're doing that I blogged about it: http://deyofthephoenix.com/blog/?p=1154 . I look forward to following your progress, and will remember you and your boys in my prayers. Blessings, MDH.

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  20. Your story is extremely moving and I first read an article about you and your experience on a CNN blog. I appreciate you sharing your story, because stories like yours are the reason the LifeGuard30 exsists. LifeGuard30 is a mobile medical record device that was designed to save your life in the event of an emergency by having your pertinent medical information available for emergency personnel. The LifeGuard30 holds medications, allergies, emergency contacts and more. It is a complete system that protects your personal health information and protects you in emergency situation. We here at ViVre Medical know first hand how difficult it is to obtain you or your family member's medical information when you need it and that is why this product exists.

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  22. Thanks for sharing such a nice story. I think this story is powerful in many ways. There are so many thoughts on Medicine and Social Media. I think social media is connected with every field. The social media spread your news to the public.

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  23. Thank you for sharing your touching story.. I'm so sorry for your loss. I went through the same story with my mother and I can honestly say it was one of the hardest things I have ever been through..

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