I’m a nurse and a mother of two. I live in Brooklyn with my husband and my two daughters. My older daughter has special needs, including severe apraxia of speech, and this blog is largely about navigating the emotions and logistics of raising a child with special needs. I also like writing about health care from a nurse’s perspective.


  1. Matthew Kaufman

    I read your article in the NYT about the ICU used as a “pause button.” I am an ER doc living in Brooklyn and working in the area. Describing ICU utilization and other life-extending measures in certain cases as a “pause button” is vivid and rings painfully true. In the ER I unfortunately initiate this path sometimes when a family does not agree to palliation even in the face of futility. I wish I could explain it as well to families. Great article. Good luck.

  2. Susan Phillips

    I am also writing in response to your NYT piece. I understood and appreciated it, but I feel you missed an important point, and made it seem that patients linger in ICUs only because families are indecisive. My mother died last year after a sudden diagnosis of advanced cancer and two stints in the ICU at NY Presbyterian. It was a rapid and brutal decline, accelerated by a poorly carried-out surgery intended to be palliative. Both of her ICU stays were prolonged, both of them because they started on a weekend and the place was simply bursting at the seams, there were no beds on the wards and no one would let her go home. These were incredibly frustrating and painful days for those of us who loved her. Hospitals need to do a much better job of moving people through the ICU. As her family member and advocate and health care proxy, I must also say I often felt like I was regarded as unwelcome and a general pain in the ass, and that her clear wish for palliative care was regarded with suspicion and not fully taken on board by the ICU staff.

  3. Michael Wang RN

    Hi Kristen, thank you for your NYT article. I am a cardiac nurse at NY Presbyterian. To Susan Phillips who wrote about her experience at NYP; I am so very sorry that your experience was such a terrible one. I can not speak on behalf of the ICU staff for I am not an ICU nurse, but I apologize for how you felt during those dark times.
    Kristen, thank you for shining light on an important topic. The article touched upon some very relevant points. Your perspective was much appreciated.
    I am currently working on something that can improve the patient experience as well as the experience of family members in the ICU setting. I was wondering if I can perhaps share my idea with you to receive some feedback. I hope what i am working on will improve the experience families and patients have in ICUs and hospitals in general. Thank you very much.

  4. Kathleen Vallee Stein

    I read your article in the Los Angeles Times (12/26/17). It was heartbreaking to read the stories of how patients suffer at the end of life. My dad had Non-Hodgkin’s lymphoma and was receiving radiation that swelled his throat to the point that he couldn’t eat. He had one more week of radiation scheduled and the doctor wanted to put a stomach tube in because Dad couldn’t eat. My father would have been on a fast track to the ICU and a horrible death. I was familiar with the Medicare Hospice Benefit and we opted for that. My sister and I cared for Dad (and provided support for Mom) at home. He lived for 29 days in hospice and they were the most amazing and enriching time for the four of us. The swelling went down and he could eat again, mostly ice cream, but anything he wanted. He even had his beloved martinis – also at any time he wanted. We put his worldly affairs in order and prepared for his passing together. He died in his sleep, on his own terms, in his own bed. My book, Twenty Nine Days of Freedom, about our experience, will be coming out this year. I hope your eloquent and necessarily graphic description of what happens to patients in the ICU will help families to consider hospice care – for the sake of everyone in the family.

  5. Ali

    Hi Kristen- I read your article in the NYT (Sept. 14, 2018) and it rang so true to me. I, too, resisted certain testing of my daughter with special needs for years and then got a genetic diagnosis that gave some inkling that it might be a barely-studied genetic mutation that caused her challenges. I still resist labels for her, as I find them unhelpful and, if we are forced to use them for insurance or school purposes will leave those labels there. I always go back to what testing about my nine year-old self could have possibly told me about who I would be when I grew up (barely anything, it turns out) and resist efforts to use such labels to try to determine my daughter’s future.

    I am grateful for your writing. You put to words something I have struggled to explain to people with my own words. It makes me feel less alone to read your words and hear your viewpoint.

    Sending love to you, your daughter, and your family.

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