Patients in ‘health care limbo’ have nowhere to go
Most patients at UC Davis Medical Center prefer not to stay in the hospital any longer than necessary. Families and friends also want to see loved ones get home rapidly. And the medical center’s care teams always want their patients safely discharged as soon as possible, too. They need the beds for that constant flow of patients who require UC Davis Health’s acute-care services, which include highly specialized tertiary and quaternary care.
But some patients can’t leave the hospital, even after being medically cleared for discharge. Their hospitalizations can be measured in months, and sometimes in years.
These are patients with nowhere to go or no one who will accept them.
“There’s a perfect storm of factors that keep a number of patients housed in our hospital for extraordinary, unnecessary lengths of time,” said J. Douglas Kirk, chief medical officer for UC Davis Health. “We have patients who no longer need our level of care, but don’t have the family or the resources, or the mental or physical capacity, to be discharged on their own.”
Kirk added that on any given day at the medical center, there might be as many as a dozen patients who’ve been hospitalized for more than three months without the need for specialty nursing care or the expertise of UC Davis’ highly trained physicians. These patients are in health care limbo, stuck in costly hospital rooms because other care facilities – more appropriate to their needs – cannot or will not accept them.
Extreme lengths of stay
Extreme length of hospital stay – defined as 100 days or more – is not unusual at an academic medical center like UC Davis. A premature infant who requires intensive neonatal care to survive and thrive needs a lot of time in the hospital. The burn patient who needs specialized treatments, physical therapy and skin grafts often requires months of care, too. UC Davis Health has unique expertise for these types of lengthy, acute-care cases.
Unfortunately, it’s also not uncommon for patients who don’t need a high level of care to face an extreme length of stay in the hospital. A year or more of unneeded hospitalization is not unusual. One UC Davis patient has been hospitalized nearly as long as a presidential term in office: four years.
The original medical needs of that individual and other extreme length-of-stay patients have been addressed. Now they have no one and no place to go where their chronic needs can be met.
Such patients typically have physical, cognitive, or mental health disabilities, sometimes all together. For these patients, living independently is impossible. They need a certain level of help and care, but not a hospital’s level of care. Finding placement is difficult, and sometimes impossible.
The challenges of patient discharge
It’s a task that takes case managers at UC Davis Health many months and, in some cases, years of work to find a viable option for placement.
“These are the most complex patient discharge cases anyone can imagine,” said Joleen Lonigan, an executive director in Patient Care Services at UC Davis Health. “They involve medical, legal, financial and practical issues that are incredibly difficult and time consuming. The usual paperwork, phone calls and governmental bureaucracies alone are hard enough to navigate on behalf of a patient. But frankly, these are also people who have fallen through the cracks of our health care and social systems and have nowhere to land or anyone who will take them.”
Lonigan noted that the medical center serves not only Sacramento, but it is also the Level 1 Trauma Center for a 33-county area in Northern California, from the San Joaquin Valley to the Oregon border. Securing court-appointed guardians (conservatorships) for those patients without the capacity to make their healthcare decisions, and with no family to act on their behalf, is very challenging locally. In distant, budget-strapped counties it is also a lengthy process, and one often fraught with financial constraints and coordination barriers.
Long stays, high costs
— J. Douglas Kirk, chief medical officer
As a result, the patients remain hospitalized and UC Davis Health absorbs the costs of their unnecessary care day after day, month after month, year after year. And with the average daily inpatient cost in California being about $3,700, a room at the medical center – for patients who need little or no acute care – essentially becomes the most expensive hotel room in the region. In a hospital that regularly runs at over 95% capacity, each occupied bed is one less available to another patient who needs it.
“More important than the costs,” added Kirk, UC Davis Health’s chief medical officer, “is the simple fact that these patients would be much better off in a care setting that actually meets their needs. Other types of facilities offer group activities, interactions with other people, outdoor exercise, and even the fresh air of a walk outside. An academic medical center like UC Davis is not designed for any of that.”
In efforts to support patient’s transitions of care to the community, UC Davis Medical Center bears the financial cost to fill the gaps of need that cannot be met by an existing entity – once financial need is identified. These costs include transportation, medications, housing, medical equipment and other supportive services such as legal for conservatorship and behavioral health aides to support facilities to accept and manage patient’s behavior. UC Davis Health has seen this financial burden drastically increase in the last 24 months.
Complex patient conditions
It is not surprising that it’s difficult to find a group home or assisted living facility that will accept one of the medical center’s extreme long-term patients. Those who remain at UC Davis Medical Center after being medically cleared are still very challenging to care for. Many older patients suffer severe dementia or developmental disabilities, to the degree that their family, if they have one, can no longer care for them.
Other patients are impaired by severe mental illness and may have aggressive behaviors toward others. Both types of patients can have chronic conditions such as diabetes, heart disease or paralysis, which don’t require a trauma center’s expertise but still require close attention and skilled resources, especially when the patient’s decision -making capacity is impaired by their illness.
“We have patients housed without medical necessity, for example, who have such severe underlying psychiatric disorders that they need wrap-around services wherever they live,” said Jessica Vetter, a board certified psychiatric mental health nurse practitioner. “They can also have a chronic medical condition such as dangerously fluctuating sodium levels that require strict dietary management. But it’s not something they have the capacity to do for themselves.”
Vetter said the combination of mental health problems and the need to carefully manage a chronic medical condition makes it very difficult to find specialized facilities that can adequately manage both. “Facilities won’t take them,” said Vetter, because of the significant staffing resources those individual patients require.
A lack of disability benefits
It can also be very difficult for UC Davis Health’s discharge team to find a care facility for adult patients with developmental or intellectual disabilities. Our medical social workers partner with case managers and providers to assure access to any benefits or resources but can meet significant barriers.
“If a person with an intellectual or developmental disability was not enrolled in regional center services before the age of 18, it becomes incredibly difficult to enroll them as an adult,” said Vetter. “These patients are not in the system, as far as government agencies are concerned. Without proof of their disability established in childhood, they are considered ineligible for services with regional centers. Without those critical specialized resources to support them in the community, patients with disabilities, especially those with no one to advocate for them, can remain hospitalized for months and years.”
Challenges to morale
Lonigan, who helps oversee patient care services, also added that patients who don’t leave the hospital for months or years can affect the morale of physicians, nurses and other team members engaged in their care.
“Our nurses are trained for critical care, surgical and cancer patients. They’re highly skilled and caring. But imagine trying to deal with someone who’s been hospitalized for so many months that they begin to feel like the hospital room is their home,” said Lonigan. “This presents challenges for the shared hospital rooms, where we’re caring for other patients, too.
“And when these patients have impulse control problems and behavioral issues,” added Lonigan, “it compounds stress for nurses because the challenges of patients who can’t be discharged begin to seem never-ending. Additionally, it is better for the patient’s health and wellness to be in an appropriate treatment setting where they can receive care and connect to the support they need in the community.”
What’s the answer?
UC Davis Health officials point to a number of factors that need to be improved to benefit patients, staff, and the Sacramento community:
- Reduce the time it takes to get a court-appointed conservator assigned to patients without decisional capacity so health care decisions can be made quickly.
- Establish a special-case waiver to access benefits for adults with intellectual disabilities who were never enrolled in disability benefits as children.
- Improve and streamline access to assisted-living support services and resources for hospitalized patients who are medically cleared for discharge.
- Expand wrap-around services opportunities for individuals with extreme disabilities who no longer need to be hospitalized.
- Build more bed capacity in the Sacramento region for individuals suffering severe dementia or long-term psychiatric conditions.
“No one should have to remain in a hospital when they don’t need to be,” said Kirk, the UC Davis Health chief medical officer. “It’s not good for anyone’s health or well-being to remain hospitalized long after they’ve been treated and healed. It’s also not good for the rest of the community, for the health care costs we all have to pay, and it’s especially unfair to the other patients who need our services and hospital beds.”