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A Piece of My Mind
April 2, 2019

What About Recovery

Author Affiliations
  • 1Internal Medicine and Pediatrics, Yale School of Medicine, New Haven, Connecticut
JAMA. 2019;321(13):1253-1254. doi:10.1001/jama.2019.2134

Last winter, my brother Tom, a 68-year-old kidney transplant recipient, traveled from New York to Virginia to visit his new grandson. Within a week of his arrival, he developed a fever with nausea and vomiting and was admitted to the local medical center for possible sepsis. His wife called a few days later to reassure me he was improving, the cultures were negative, and the doctors thought he had a viral illness.

On the evening before discharge, Tom complained that he could not breathe. When I arrived the following day, he was sedated, on a ventilator, and receiving broad-spectrum antibiotics and intravenous fluids. An extensive work-up revealed no pulmonary embolus, infection, or lung infiltrates. The physician who made the decision to intubate Tom the night before told me the blood gas showed adequate oxygenation, but he was worried that my brother couldn’t keep up the work of breathing. “Could he have been having an anxiety attack?” I asked. “Maybe,” he acknowledged.

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    8 Comments for this article
    Do Not Give Up the Fight to Change This
    Linda Clemens, MSW | USC
    You have much more power than you think. Now that you have your eyes wide open, please work to change what you saw in a flawed hospital setting.
    Plus ça change...
    Clement Ren, MD, MBS | Indiana University
    This exact type of story was vividly described in Samuel Shem's classic book, The House of God, over 40 years ago. It's sad that we haven't made that much progress over that period of time.
    Thank you
    Rebecca Owens |
    This is so important. This essay should be shared far and wide. I have lived similar situations with my spouse. Getting anyone to listen is nearly impossible.
    An All Too Common Story
    Emily Bell |
    What you experienced with your brother closely matches what happened here in the UK to my father and, more recently, to my father-in-law. The lack of a constant point of contact leads to poor continuity of care, and clinical "firefighting" with no consideration for the bigger picture. Relatives can try their best to advocate for their loved ones, but are often dismissed out of hand.

    Clinicians: if you see this happening in your hospital, please, please do not remain silent.
    Invest in Primary Team
    Sana Chaker, MD | Assistant Professor
    This is becoming increasingly prevalent in hospitals where there is less emphasis on the primary team as one who is driving the ship, where the hospitalist or admitting team is simply viewed as a delegator of consultants and as a result is overburdened with the number of patients / amount of work. In these cases, despite heroic efforts it is difficult and seemingly impossible to care for patients holistically. Yes a PMR/rehab consult can be added to the “mix” of consultants this patient and others receive, but I would argue that what this patient really needed was an advocate, someone interpreting all of the consultant recommendations, deciding whether they were fit for the patient and in what manner, deciding with the patient / family what these recommendations meant to them at every step of the process, and focusing on the other aspects of recovery that too often get lost in the process as the article mentioned - ie a primary team with time and energy to carry out these tasks. Sadly, with our productivity-driven systems this is a dying art, and there is little appreciation / understanding by hospital administration for the role that an optimal primary team fulfills.
    Need for the Return of the Centrality of Nursing in Care
    Constance Ayers, PhD, RN | Associate Professor Emerita
    Excellent article. I'm so sorry to hear about your brother's situation. I know this happens to other patients too, but I don't agree with your root cause. I believe your story reflects a loss of the centrality of nursing in the care of hospitalized patients. Nurses should be providing care with an emphasis on the whole person. While what we often see nowadays is very much consistent with what you said about nurses giving medications and focusing on the technology, that is not what nursing should be. Nursing should be focused on holistic care, with a primary nurse responsible for a plan of care that focuses on oxygenation, nutrition, skin integrity, urinary and bowel elimination, neuro-prevention of delirium, etc... all situations that you mention as very problematic in your brother's care. A nurse should be responsible for making sure a patient's schedule is consistent with his healthcare needs. Nurses are with that patient 24 hours/day and should be interfacing with all members of the healthcare team and advocating for their patients, a primary role of nursing. Instead, it grieves me to say that much of nursing now focuses on just what you indicated, medication administration and technology. This problem goes beyond the hospital and care environments, but also to nursing education, and this is often accepted as nursing in the hospital. Certainly there are excellent nurses, but what you describe is all too common.
    Yes, It Happened to Me
    Patrick Terry, Nursing, Cardiac Imaging | Emeritus - Vanderbilt University Medical Center
    First, thank you for writing about your experience, and your observations connected to those events. I am sorry you, your brother and his family had to go through this.

    I spent most of December and January hospitalized; consisting of two separate admissions. I cannot say that my issues were the same as your brother's, but in many regards, I found myself nodding in agreement as I read your article. The delirium is real; I can attest to this because I experienced it. The truth is that I experienced it in various levels of severity, and in different manifestations.
    From zero memory of certain events to a foggy and vague sense of others. As a retired health care professional, it was eye-opening for me to experience it from the other side of the bedrails. I now have an awareness of how frightening it can be to the one confused, rather than monitoring someone else who might be.

    The constant parade of whoever was on-duty any particular day, and from several disciplines of expertise didn't seem to affect my conscious awareness. In fact, I am pleased (and perhaps surprised) that everyone seemed to know what the other's understood, and what they were up to in treating me.
    Advocacy is so important!
    Lisa Andrade, MBA, MSN, RN-BC, ACM, CCM | TriHealth Cincinnati, OH
    Having performed case management for over 28 of the 34 years I have been a RN, I am so familiar with your story. It is so important to have a case manager (CM) (either social worker or RN) as a part of the health care team. The CM can be the one who coordinates all the different providers of care and help the family navigate through everything from the admission through the discharge. At my organization, the inpatient CMs sees everybody upon admission and works with the family and doctors to define a safe discharge plan. They will work hand in hand with the outpatient case managers to ensure a smooth transition from one level of care to another. CMs are the patient's champion and are able to have conversations with the multi-disciplinary team. It is not unusual for a CM to gently 'nudge' the physical therapists or specialists to see the whole picture of what is going on with the patient.

    Please, the next time you or a loved one is in the hospital, ask to see the case manager. They can and will help. We thrive on it!