Incapacitated adults without family or friends benefit from volunteer surrogates that act as medical decision-makers and patient advocates before, during and after hospitalization, according to findings from an innovative program to train surrogates.
Adults without surrogates are often estranged from family, face abuse and neglect, and are at high risk of receiving unnecessary medical treatments as they age. The study, published in the Journal of the American Geriatrics Society, followed the first 50 patients enrolled in Indiana’s Wishard Volunteer Advocates Program, an effort produced by the Regenstrief Institute and Eskenazi Health, a public safety-net health system.
Volunteer surrogates were supervised by Robin Bandy, an attorney and the program’s founding director. Legal guardianship was formally assigned to the Volunteer Advocates Program. More than 90 percent of those who survived hospitalization were transferred to nursing facilities, according to the study, and many continue to receive visits.
Patients ranged in age from 22 to 90; average age was 67. All but one of the patients had at least four medical conditions at the time of hospitalization.
“It’s always been a challenge to find people to speak for adults who don’t have anyone. The adults who are enrolled in our program are people admitted to the hospital with no friends or family who can be their decision-maker or advocate on their behalf,” said Dr. Alexia Torke, a Regenstrief Institute and Indiana University Center for Aging Research investigator. “Some of them don’t have contact with their own family. Some have been abused or neglected by family.”
Volunteers made health care decisions, including end of life decisions, facilitated post-hospitalization placement to nursing facilities and were often the only people to monitor care in nursing homes after hospital discharge. Torke said some patients are able to interact and form relationships with guardians, although many remain unconscious.
“The majority of these patients were so incapacitated by the time they came into our program there was no way they could have done advance care planning,” said Bandy. “We had to go to court to get guardians appointed, because they had no capacity to make their own decisions.”
Among those assigned volunteers after hospitalization: an 85-year-old woman with dementia who had been living alone with her dead cat in a dilapidated apartment; a 65-year-old woman with dementia removed from her son’s care after he broke her arm; a 90-year-old man removed from his home, malnourished and covered in urine and bedbugs – his caregivers were not allowing him access to food or medicine.
“Many patients had not had basic, routine medical care for years,” Bandy added. “It’s important to have someone advocating for the patient, to make sure they get the medical care they need and not only in a crises.”
Some of them don’t have contact with their own family. Some have been abused or neglected by family.
Torke said she hopes the program will serve as a national model to replace or complement the frequently overwhelmed guardianship services provided by state agencies. An incapacitated adult may face Alzheimer’s disease, dementia or coma. Program volunteers are assigned only one or two patients.
“Guardianship services have really been a patchwork state-by-state. Each state has tried to find a solution, and in Indiana there actually were not any state guardians available. There was a desperate need,” Torke added. “We have had no trouble finding volunteers to train, and many have health care or social service experience. This program has tremendous potential to be expanded, however, it is able to take place in Indiana because state law allows this kind of system.” A state statute allows guardianship programs that are not tied to the government.