Slow Down and Ask

We all knew her time was limited; recurrent metastatic glioblastoma at the age of 26. Surrounded by her husband and parents at all times, rounding on her was becoming more difficult for the team to endure. Each day she had a new limitation. First it was her inability to swallow food, then liquids, then her own secretions. Then it was urinary incontinence. Now it was relentless orthostatic hypotension. This was the worst for her. All of the past issues she handled with grace and strength, but this orthostatic hypotension made her unable to sit up or raise her head. As I explained how this was unlikely to get any better, and that we would need to plan for this going forward, this was the first tear I saw creep out of the corner of her right eye.

Her family was still hopeful that the compassionate-use 4th line treatment that we administered the week prior was going to “kick in” and shrink all of those tumors. And that once that worked, she would be able to go home and resume some sense of normalcy. But of course we knew that would never happen.

So that day on rounds, we took a different route. We didn’t talk about the midodrine or the foley catheter. We looked at all the pictures in her room, and asked her about the pictures. She talked mostly about her dogs, who she had not seen in over a month, and how much she loved and missed them. As she talked about her dogs, she seemed to forget about how badly she felt, both physically and emotionally; she almost held her head off the pillow and smiled as she told us about their personalities. When we left the room, the nurse looked at me and emphatically stated, “I am getting her dogs here.” I enthusiastically endorsed the concept, knowing this would be quite difficult (her apartment was 120 miles away, non-therapy dogs were not allowed in the hospital, she was on contact precautions, she couldn’t tolerate sitting in a wheelchair, etc.) but I told the nurse to let me know how I could help and carried on rounding on all the other patients.

The next day before rounds I was still wondering how we were going to get her dogs to visit, and when I went into the room, the walls were plastered with pictures of her and her family with her dogs! The nursing staff had pulled it off! Despite all the potential barriers, they had found a reclining wheelchair, gotten “permission” from infection prevention-control, found a nurse to get relief for 2 hours mid-day, and sent her husband to fetch the dogs. Together they spent 2 hours on a beautiful sunny perfect day in the park outside the hospital. I was amazed by the generosity and commitment of the staff to pull this off.

The next week was followed by a series of declines, all fairly predictable but agonizing to witness, and she died the following weekend. Her family will unlikely remember the name of her 2nd, 3rd, or 4th line chemotherapy agent, or the names or doses of the drugs we used all to try to relieve her suffering. But I am quite certain they will never forget the 120 minutes of relief she was afforded, on that sunny day in April, made possible by the generous tenacity of those nurses. Let us never forget, as we take care of our patients, that we will never really know what really matters most unless we slow down and ask.

Danielle Scheurer

Dr. Scheurer is a clinical hospitalist and the Medical Director of Quality and Safety at the Medical University of South Carolina in Charleston, South Carolina, and is Assistant Professor of Medicine. She is a graduate of the University of Tennessee College of Medicine, completed her residency at Duke University, and completed her Masters in Clinical Research at the Medical University of South Carolina. She also serves as the Web Editor and Physician Advisor for the Society of Hospital Medicine.

3 Comments

  1. Chip Walpole on May 10, 2016 at 8:05 am

    What a wonderful and beautiful tribute to your patient and to your staff. That’s amazing work Danielle. Well done.

  2. C Riendeau on May 11, 2016 at 4:56 pm

    Your story is so wonderful! It reminds me of the “What Matters to You” effort brought forth by the Institute for Healthcare Improvement — here’s a link for more information

    http://www.ihi.org/Topics/WhatMatters/Pages/default.aspx

    Your story reminds me of why we are healthcare workers – to do amazing things for the people in our community.

    Thank you for sharing this!

  3. Miguel Villagra on May 13, 2016 at 9:09 am

    Danielle,
    What a very inspiring history, I totally agree on asking and defining what really matters for our patients in such adverse situations, thanks for sharing.

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