She responded, “What more could I need? Isn’t this heaven?”
When I first met her, she had been in the hospital for more than 10 months, medically stable and awaiting placement to a long-term care facility. Often I would walk into her room and find her sitting up in a chair with her hair newly braided by one of the nurses, a plush toy in her arms. Our hospital chaplains were her frequent visitors. For Christmas, the team bought her red nail polish and a vanity mirror. She frequently made comments about the world around her — or rather, the hospital room she was sitting in. In over a year and a half, she hadn’t been outside.
She had been admitted with a quiescent form of cancer that people often live with for years. But she remained in the hospital long enough for her cancer to transform to its active form. She died from complications of her cancer on her 550th day in the hospital.
Hospitals were never designed to become long-term accommodations, but that’s become a reality for a select population. These patients are medically cleared to leave but cannot be discharged because of capacity bottlenecks, insurance delays, or legal complexities.
These prolonged hospitalizations have significant implications for patient outcomes, hospital resource utilization, and health care costs. They make up a small proportion of patients but a large number of “hospital-bed days.” In one study, prolonged hospitalizations represented only 2 percent of hospitalizations, but approximately 14 percent of hospital days, and they incurred estimated charges of over $20 billion annually.
That study found that in-hospital mortality for these patients is disproportionately high. This has become a regional, national, and international problem. This is not just an issue for hospitalized adult patients: for children with medical complexity, a length of stay greater than 10 days accounts for 62 percent ($13.7 billion) of hospital costs. There is a small percentage of children with psychiatric conditions who wait longer than 100 days for placement.
Prolonged hospitalizations put patients at risk of bed sores, hospital-acquired infections, and blood clots. These patients are frequently labeled as “Awaiting Placement” or “Disposition Pending.” Often, because they are deemed stable, they can fall lower in clinical prioritization due to the number of very sick hospitalized patients. When physicians assume that these patients are overall stable or ready to go home, they sometimes overlook alternative or emerging diagnoses, which can lead to medical error.
Outside of these complications, many of these hospitalized patients don’t get the routine nor critical outpatient care that they need. One elderly gentleman in my care was admitted and awaiting insurance approval for a facility. He had suspected cancer but was never officially diagnosed: He had been given an outpatient oncology referral. Except he never made it out of the hospital to become an outpatient. He remained hospitalized for nearly four months, ordering tomato soup off the hospital menu day after day, until he too passed away.
The reasons for these delayed discharges range from financial to administrative to legal, so any solution to the problem must be multifaceted. There should be appropriate transition spaces for patients who no longer need to be in the hospital. I imagine alternatives: a hotel where these types of patients could be together, or a collective step-down unit for them. In the hospital, these patients are at high risk for loneliness. At my most ambitious, I picture something akin to the foster family network in Geel, Belgium, a community-based care model for individuals with mental health diagnoses, or the so-called “dementia villages.”
There are smaller and simpler solutions that can be pursued proactively. My 90-year-old patient didn’t have a reliable health care proxy, the name for a designated health care decision-maker, when she was admitted. In her case, she needed to have a guardian appointed by a judge. This legal process took months and could have been completed at home with her family when she was still healthy.
Equally important, the care of long-stay patients could be more humanistic in nature — including permission to go outside, engage with art, music, and exercise, or have a favorite meal. These things should be the rule and not the exception.
Certainly cost and hospital capacity should be large motivators to improve this system, but human dignity should be the greatest. There needs to be a sense of urgency: hospitalized patients are often caught up in a conversation about how people are dying, but more and more it’s become a conversation about how people are living.
Every so often, my 90-year-old patient would become acrimonious, not atypical in the late stages of dementia. On one occasion when she was agitated, she asked, “When am I going home?” At a loss, I said, “You are home.”