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.