The experience I describe here is an acute illness that my family experienced. Aside from the actual illness, most of the story will not sound surprising or unique to most of you. It is a story about traversing the medical system to get care for my mom, an elderly patient with Alzheimer’s, over the course of three weeks. It is a story about miscommunications and fumbled handoffs, and complex insurance and payments systems that drive decision-making.
In this column, I aim only to describe our experience, which was both predictable and disappointing, within the healthcare system that we all own.
Sheila is a 76-year-old Caucasian female with a history of well-controlled hypertension and hyperlipidemia and moderate-stage Alzheimer’s disease, diagnosed about six years ago. She has resided in an assisted living facility for about three years and is still relatively independent in her activities of daily living (ADLs). She has remained relatively healthy and active despite her continuously progressive Alzheimer’s.
Her acute illness started when she developed diarrhea that was moderate in volume and frequency. Over the course of several days, the diarrhea significantly affected her sleep and activities, and she became more confused and essentially confined to her room. By day five, she was visibly dehydrated, with dry, cracked lips and skin tenting. Her daughter, Tara, brought her to the ED in the hospital at which her PCP was on staff. During the eight-hour ED stay, Sheila was rehydrated and was able to keep oral fluids down. Her blood work was normal, although the staff were unable to collect a stool sample. Sheila was discharged with instructions to see her PCP within a few days. No one from the ED contacted the PCP, and no one was able to set up a follow-up appointment.
The next day the diarrhea continued, so Tara contacted the PCP. The office staff noted that their next available appointment was in five days. Tara took that appointment and continued to help her mom with symptom management. Over the next several days, the diarrhea continued and the dehydration worsened again, so Tara took her back to the same ED, where they reassured her that the labs were normal, sent a stool sample off for testing, rehydrated her, and sent her home again. On the discharge paperwork, the ED physician noted that they had “set up home health nursing” and instructed a follow-up with Sheila’s PCP.
The next day, Tara contacted the PCP to check on the upcoming appointment, get advice on what to do, and see when the home health nurse would arrive. The PCP office confirmed the upcoming appointment in two days, told her to continue what she was doing, and said they did not know anything of the home health order and that she should contact the ED to clarify. When she contacted the ED, staff there told her the PCP would have to order the home health; Tara then called the PCP again, and he said he could not order home health, given the fact that he had not yet seen Sheila or her ED record. Tara asked a logical question, “But don’t you have the ED records? That is your hospital, right?”
The same cycle ensued over the next few days—now two weeks into the illness—and Sheila started to require increasing assistance with all of her ADLs, including toileting and showering, along with constant supervision to ensure hydration. The family pieced together as much help as possible. Several days later, on a Thursday night, the dehydration was again obvious, so Tara took her to another ED, given the lack of assistance received from the first two ED visits. In this ED, after evaluation, they admitted Sheila for observation. The family again pieced together 24/7 coverage for the hospital stay. The next day, Sheila continued to have diarrhea, now with vomiting. The ED hydrated her and relieved her vomiting and diarrhea with medications.
Because she was in observation, the hospitalist informed the family that he had written a discharge order. The family requested more time, given the fact that she was extremely confused, was hallucinating, and had not kept anything down by mouth; the hospitalist then changed Sheila to inpatient status for ongoing care. By Saturday, the vomiting and diarrhea were much better controlled with medications, but she had not taken anything by mouth other than a few sips of liquid. She was given a regular diet and kept a few bites down. The rounding hospitalist (the third in three days) told Tara he had consulted gastroenterology but that they were no longer needed and Sheila could be discharged. Tara requested that they fulfill the GI consult instead of discharging Sheila, given the length of time of the illness (now almost three weeks), the fact that she was nowhere near her baseline status, and the lack of diagnosis.
In the meantime, when one of the nurses from the assisted living facility called Tara to check on Sheila, she pointed out that she had noticed her mother’s Alzheimer’s medication “looked different” starting about three weeks ago, which coincided with the onset of the diarrhea. With this information, the GI consultant took a good history, looked at the imaging and lab testing, and told the family he strongly suspected the diarrhea had been caused by a change to generic from brand name, a decision that had been made due to the cost of brand name. He recommended stopping the medication, and, if no improvement was seen in the diarrhea within 48 hours, he would expand his workup.
The next day, a Sunday, the same hospitalist rounded early and wrote discharge orders. When Tara’s sister, Michelle, arrived, the nurse told her of the discharge order. Michelle asked another logical question: “But do we know what is wrong with her yet? Has the diarrhea stopped?” The nurse recounted “only a few bowel movements” over the course of the night and no vomiting. Michelle pleaded with the nurse to at least see if her mom could tolerate breakfast before discharge. She then talked to the hospitalist, who recounted that Sheila had told him that morning that she had not had any diarrhea all night. Michelle asked another logical question, “But you know she has Alzheimer’s, right?”
Sheila did well with breakfast, and, after several hours without diarrhea, she was discharged back to her assisted living facility with Michelle. The PCP never called, home health was never ordered, and the low-cost medication was still on her discharge paperwork.
Throughout all this, my sisters asked me and others so many logical questions during the three-week illness, such as “Don’t they review the medication list before a patient goes home?” and “Why didn’t the ED contact the PCP? He works in the same hospital, right?” Being hundreds of miles away, and knowing both how the system should work and how it does work, I found it sobering to see all the typical breakdowns happening to my own family. I felt disappointed and dismayed, but not the least bit surprised.
The one person who truly made a difference was the nurse at the assisted living facility, who used common sense (“The medication looks different”) and compassion (“Hi, just calling to check on Sheila”) to help us determine what was wrong. She saved us all additional diagnostic tests and unnecessary visits.
As a chief quality officer, I talk incessantly about systems approaches to improving quality and safety, but while I know how impactful reliable systems can be on good outcomes, the system will only ever be as good as the people caring within.