Let me tell you a story a palliative care leader once told her audience to make a point.
“Three days ago, my mom went to the same hospital she’d been admitted to the year before. Last year, she was in for an elective knee replacement. This time she had a really bad pneumonia that wasn’t responding to antibiotics at home. The ER physicians and hospitalists changed her antibiotics to different antibiotics. My mom had a severe allergic reaction to one of these new antibiotics, and now she’s in the ICU. She’s recovering, thank goodness, but guess what? She doesn’t remember if anyone had asked her about medication allergies. She'd assumed her medication allergy was listed because she’d told her orthopedic surgeon and the anesthesiologist last year, and she knew it was in her primary care physician’s records at the clinic. Now - would you say a medical error had occurred?”
The palliative care leader then told her horrified audience, “Ok!...so this actual scenario didn’t really happen. But you know what happens every day in this hospital and probably every hospital in the country? This same story, but exchange ‘antibiotic allergy’ for ‘DNR wishes’.”
After conducting home visits as a palliative care physician (read Post 1: What Exactly Does a Palliative Care Specialist Do?) for five years - and a large number of my home visits was for follow up after a patient's discharge from a hospital or rehab facility – I have learned that the above scenario is unfortunately prevalent.
And the following conversation is one I often held:
"Mr. R., did you change your resuscitation wishes to Full Code – meaning attempt CPR if your heart were to stop – while you were in the hospital?"
"No?" Mr. R. answered uncertainly, "I didn't change anything. I don't even remember anyone asking me about it. Why? What does it say in my hospital records?"
"Well," I answered carefully, "Your hospital records and discharge summary say, 'Full Code,' but that's often the default if providers in the hospital don't have time to ask or forget to ask."
"Oh," Mr. R. responded, "Okay. But my form still works here, right?" and he pointed to the completed Out of Hospital Do Not Resuscitate form posted on his refrigerator door (read Post 6: Who Do I Tell if My Mom Does Not Want Resuscitation Attempts? – A Three Step Process).
"Yes, yes," I quickly reassured Mr. R., "Your form is still valid at home. I would advise - if you ever had to go to Urgent Care, the ER, or the hospital again - that you be the one to bring this up. Either bring a copy of your Out of Hospital DNR form to show the provider or speak up and tell them you wouldn't want to suffer CPR attempts if your heart were to stop."
“Ok,” said Mr. R., “I’ll do that. You remember I said I don’t want any of that!”
“Yes, Mr. R., I do, and I think assuming that none of this is in any of your charts anywhere you go – and therefore you have to re-communicate your wishes - is the best way to protect yourself from getting things done to your body that you wouldn’t want.”
[I had already posted another common example of discrepancies in the medical chart (read Post 64: Medication Miscommunication, Misconception, Misunderstanding Madness), and there, also, I suggest erring on the side of over-communication.]
During these recent years when I reviewed hundreds of hospital records while sitting next to patients in their homes, I started coming to the unsettling realization that I had been part of the problem!
I thought back to my ten years working as hospitalist, which is an internist who takes care of patients specifically while they are hospitalized, prior to my working as a palliative care physician. And I realized, in hindsight, my ignorance on so many things that were never taught to me in medical school nor in training nor by my colleagues in any of the hospitals I had worked. It never occurred to me to question current practices:
1. Because of the number of patients I was expected to round on on the floor and step down unit, as well as admit into the hospital, I was laser focused on “fixing” the acute issues, specifically issues that required someone to need hospital level of care. The professional expectations to prioritize and re-prioritize “immediate” patient needs often resulted in my asking cursory questions about code status (read Post 5: CPR on TV versus CPR in Real Life – Three Ways They Differ) or, just as often, to not ask at all, defaulting many patients to “Full Code” in the medical chart so that I could then proceed to take care of more immediately pressing patient matters.
2. My professional universe stayed entirely within the walls of the hospital. I took pride in providing excellent care of my patients’ hospital-related issues, keeping patients and family members informed of hospital-related events, and coordinating medical care provided by multiple specialists so that my patients could be discharged from the hospital in a timely manner. It never occurred to me to ask if the purple DNR wrist band patients wore in the hospital would follow them, so to speak, outside the hospital. I was short-sighted, and this short sightedness remains the norm.
So what does this mean to you, the patient or family member?
Perhaps this insight into how a hospitalist may think will help you realize how much you yourself have to advocate in the hospital for
● your concerns about your (or your loved one’s) big picture and long term outlook
● your overall goals of care (read Post 54: Why Should I Care About My “Goals of Care?”)
● the logistics of “making it work” while living with declining health at home, especially if your current resources are making it difficult to make it work (ex. no one to help you step into the tub if you are having trouble with balance) and you are worried you could end up back in the hospital
● your wishes regarding CPR attempts (“Full Code”) versus being allowed a natural death (“DNR”).
(My book Own Your Care: A Family Guide to Navigating Complex Illness, Declining Health, or Unexpected Prognosis comes out April 4, and in this book, I include more examples of how one could advocate for themself or their loved one in less-than-straightforward or stressful health situations.)
I hope this perspective is helpful to you as you attempt to navigate our fragmented healthcare system.