They are the patients who have no family members, no friends, no one able to step up and speak for them. Scores of people, young and old, who are unable to make decisions for themselves are stuck in legal limbo, medically ready to be discharged from Massachusetts hospitals. But they lack a guardian to sign off on discharging them to a nursing home or rehab center.
The odyssey that follows is cited by hospital leaders as one of the most challenging they face in the ongoing health care crisis in Massachusetts, with hospitals filled to capacity and new patients waiting for hours in emergency rooms for available beds.
The guardianship process, say those on the front lines, is also one of the most soul-wrenching tasks they encounter.
“It pulls at your heartstrings, and it makes you think how lucky you are that you have a family who is supportive of each other,” said Deb Hansen, a registered nurse and director of case management at Sturdy Memorial Hospital in Attleboro.
“Your heart goes out,” Hansen said, “because they don’t have that support except for us to be holding their hand and talk to them.”
At least 958 patients statewide were awaiting discharge in November, many for more than a month, to a nursing home or other post-acute facility, according to the most recent monthly survey from the Massachusetts Health & Hospital Association. Exactly how many of these patients are mired in legal issues related to guardianship is unclear, but the association estimates that more than 100 patients are languishing in this state.
Hospital leaders in the recent survey listed guardianship problems as the second most challenging issue they faced when trying to discharge patients, right behind dealing with insurance company delays in authorizing coverage.
Hospital administrators say too often patients, before they are hospitalized, fail to complete a health care proxy form, a simple document that designates a representative to make health care decisions for the patient if he or she is incapacitated.
“It’s such a simple document, anybody can pull it off online to do this,” said Joan Smith, director of social work services at Tufts Medical Center. “You don’t have to be in the hospital to do it.”
Without that form, incapacitated patients, most often older people with dementia, or younger patients who’ve had a brain injury, get stuck in the hospital as administrators embark on a legal maze seeking a court-appointed guardian. That guardian will have the authority to sign off on transferring the patient to more appropriate post-acute care.
The legal part of the process, administrators say, usually takes about a month. But there are cases that drag on much longer.
Earlier in the pandemic, Sturdy Memorial cared for a young man in his 20s who was with them for a year. His medical care was completed in a couple of months, but the courts, backlogged by the pandemic, took a few more months to appoint a social worker as guardian. By then, the man’s family had stopped visiting, and it became clear they were not going to take care of him when he was discharged.
The young man’s cognition level was high enough that staffers could hold a conversation with him, and to know he was desperately seeking friends, but it was not enough to live alone or take care of himself.
“There was a vulnerability about him and we understood that he felt abandoned by his family,” said Robin Morris, the hospital’s senior vice president of clinical operations.
More months went by as the guardian struggled to find an appropriate place. The patient celebrated a birthday, with staff bringing him a cake.
“He wanted a life outside of the hospital; he wanted someone to care about him,” Morris said.
More months dragged by.
“He became part of the family here,” Morris said. “Staff came in with their families so he wouldn’t be alone on Christmas.”
While the Sturdy case stretched longer than most, the painstaking steps that staff at most hospitals take are similar as they try to find someone to speak for a patient so their case doesn’t end up in the courts.
“We start by trying to track down anyone we can,” said Dr. Rachel Kester, medical director of inpatient geriatric services at Cambridge Health Alliance.
“Usually, we can get in touch with a neighbor,” Kester said. “We usually find someone who knows them, at least a little bit.” A friend or neighbor could file with the state’s Probate and Family Court to become a legal guardian. But Kester said friends and neighbors are not often willing or able to do that.
Hospital case workers say they scour patients’ medical records, going back years, searching for a health care proxy. Failing that, they may reach out to social service agencies from the patient’s community, as well as local senior service offices, in case they have records of a family contact who may be willing to be appointed as a legal guardian.
Seeking a court-appointed guardian, they say, is a last resort.
“One thing that makes me feel very sad is that our [guardianship] patients have to wait so long in the hospital before they can move on,” Kester said. “No one should have to live in a hospital.”
The Massachusetts Health & Hospital Association said it has made recommendations to the state’s court system to try and streamline the guardianship process. For instance, it suggests family and probate courts reserve blocks of time each week, in each county, devoted to these cases.
“We are aware of three counties that have implemented the dedicated block days within the courts,” the association said in a statement. “We are grateful for those and hope to ... see that grow.”
Jennifer Donahue, a trial court spokeswoman, said in a statement that Suffolk County, where many hospitals are located, is among those instituting the dedicated weeks.
And, she said, the Probate and Family Court has expanded electronic-filing options in every county for conservatorships. That’s when a court appoints a person to manage the financial and personal affairs of a minor or incapacitated person. A conservator may also serve as a guardian.
The electronic filing can save lawyers time and shorten the process a bit, but she said there is a good reason that cases can take a long time.
“Massachusetts guardianship law is complex and filled with procedural safeguards to protect the rights of persons alleged to be incapacitated,” Donahue said.
But as the cases drag on, patients can grow despondent, hospital case workers said. And many patients are not getting the level of rehabilitation they would receive in post-acute care.
Some patients may not have the mental capacity to understand why they have been stuck in a hospital so long. But others, like the young man at Sturdy Memorial, was keenly aware.
Finally, a year after he entered Sturdy, his court-appointed guardian found an adult-care foster family who stepped forward, and he went to live with them.
Shortly after, the family sent the hospital staff a picture of the young man from a trip they took him on to the beach.
He was smiling.