A California statute allowing nursing homes to make medical decisions for residents incapable of doing that for themselves and who have no family or legal representatives has been ruled unconstitutional.
Advocates for nursing home residents say the ruling offers long overdue protection for the rights of the elderly. Rights that already exist for prisoners and the mentally ill.
In June the Alameda County Superior Court ruled that nursing homes must notify unrepresented residents when they are being deemed incompetent and may not administer newly-prescribed antipsychotic drugs or make end-of-life decisions for these residents without obtaining court authorization or a court appointed public guardian or conservator.
“In California, you are far better off if you are mentally ill rather than elderly,” said Morton Cohen, a professor of law at Golden Gate University School of Law in San Francisco. Cohen litigated the case for California Advocates for Nursing Home Reform (CANHR) which sued the California Department of Public Health (CDPH).
Cohen has a long history of advocating for the rights of people in psychiatric facilities, nursing homes and prisons. In 1987 he won a landmark case supporting the right of involuntarily committed mental patients to refuse antipsychotic drugs.
But some say the judgment could have devastating effects. Mark Reagan, general counsel for the California Association of Health Facilities, a nonprofit association for long-term care providers, said nursing homes could be forced to stop medical treatments, like dialysis or hospice for residents who were deemed incompetent under the original statute. Those residents may have to go to acute care hospitals, he said.
And making it more difficult to treat those people in nursing homes will be a disincentive for them to accept unrepresented patients, he added.
Tony Chicotel, a CANHR staff attorney, doubts anyone is going to be taken off dialysis as a result of the ruling, but he predicts some may have to be weaned off antipsychotics gradually.
Both CANHR and the CDPH are preparing proposed writs of mandate. Judge Evelio Grillo is expected to review those by the end of October. He will then write his own writ instructing nursing homes how to comply with the judgment. The writ could be appealed. CDPH declined to comment until the final judgment and writ are filed, said spokesman Corey Egel.
Both sides agree it will be difficult to get underfunded public guardians or conservators to represent these residents.
Judge Grillo acknowledged his order will probably make it more difficult to operate skilled nursing facilities, but he found that the patients’ rights to due process were more important.
“The stakes are simply too high to hold otherwise,” he wrote.
Informing the resident
The statute, Health and Safety Code 1418.8, was enacted by the Legislature in 1992 to provide medical treatment to unrepresented residents without waiting two to six months for a court ruling.
Nursing homes assign interdisciplinary teams headed by physicians to create care plans for unrepresented residents. But the statue doesn’t require them to tell residents that they have been declared incompetent, that it’s been determined there are no legal decision makers for them, that medical treatment or withdrawal of medical treatment has been determined for them or that they have a right to seek review of these decisions. Judge Grillo’s order requires they now be given that information.
When the late Gloria A., listed as a plaintiff in the case, entered a nursing home in Santa Cruz a doctor declared that she had lax capacity. That’s despite staff saying she was competent, said Cohen, who became friends with Gloria. But she was never told that and over the next couple of months she regained her ability to make decisions, said Wayne Norton, the Ombudsman Program Coordinator for Santa Cruz and San Benito Counties.
When Gloria tried to leave the facility to go on a picnic with her sister, staff stopped her informing her the police would be called if she did leave.
Had she been advised of the doctor’s determination she could have challenged it and may have been able to retain her right to make her own medical decisions, instead of being forced to take drugs and losing control over her finances, the lawsuit states.
“That’s the excess that this has gone to, there are no checks and balances,” Norton said. “It’s amazing we ended up with a system with no due process at all.”
Karen Jones, the executive director and program manager of the Long Term Care Ombudsman Services of San Luis Obispo County, said she sees this all the time. People go to nursing homes from the hospital where they may have had anesthesia and are still very confused. The doctor marks on their chart that they are unable to make medical decisions. Then the resident’s thinking clears up but the chart is never changed, she said.
Reagan agreed that some residents have fluctuating mental capacity and that they are supposed to be reevaluated every 90 days.
Even though hospitals aren’t covered by the ruling, the California Hospital Association is already advising its members to inform incompetent patients of the decisions that are being made for them.
“We don’t object to that at all,” said Lois Richardson, vice president of legal publications/education for the Association.
“In retrospect we thought, why weren’t we doing it anyway?”
But Like Reagan she worries that some residents will have to go without hospice and the antipsychotic drugs they need while waiting for a court order. And there aren’t nearly enough public guardians to represent them she said.
Mark H. lost both legs in a car accident and was placed in a nursing home where his arms were tied down and a psychiatrist noted that he was over sedated with antipsychotic medication, Cohen said. One of the nurses’ charts also noted that he was very wary of strangers, Cohen said.
The lawsuit states that Ombudsman Geneva Carroll visited Mark and asked if he wanted to live or die. He did not respond but when she left he said, “Come back any time.”
Carroll found that Mark’s interdisciplinary team had not asked him about his wishes. When a member of the team did ask him, all he said was, “Do you know what I am?”
His POLST was changed to comfort care only and he died in hospice in February of 2013. That was a couple of months after he was taken off life support, Cohen said.
CDPH argued in the lawsuit that administering antipsychotic drugs in nursing homes is a relatively routine and nonintrusive part of care in “appropriate cases.”
But the judge ruled that given these drugs’ serious, sometimes permanent side effects, including death, residents are entitled to the same protections as courts have granted prisoners and involuntarily committed mentally ill patients.
The judge ruled that before these drugs are administered, the resident deserves either a judicial finding of incompetency or an independent review process of the physician’s recommendation along with notification of the decision and an opportunity to be heard.
“I think it’s great that CANHR overturned a statute that was being misused for consent to administer antipsychotics,” said Benson Nadell, program director for the San Francisco Long-Term Care Ombudsman Program.
Leza Coleman, executive director of the California Long-Term Care Ombudsman Association, contends there are other ways of controlling behavior.
“This (judgement) will be a good thing if the public guardian is educated to know the negative consequences of putting people on antipsychotic drugs,” she said.
Lack of Public Guardians
Advocates of both nursing homes and their residents agree that public guardians will be the ones largely called upon to make medical decisions for this population. And no one knows how many unrepresented residents there are. CDPH does not track that information, Egel said.
“We’re seeing more and more people who are unbefriended, or have no surrogate decision maker,” said Joe Rodrigues, the California State Long Term Care Ombudsman.
And there’s a fairly large untracked mentally ill and homeless population that will need representation, Nadell said.
Because public guardians are not state-funded and are organized differently county by county, their funding and functionality vary widely, Chicotel said.
“The public guardian’s office is incapable of representing all these folks,” said Reagan. There’s just not a good safety net for this population, he added. Chicotel agreed.
He and Nadell say it’s now up to the Legislature to provide some support for this growing elder population. Two legislative attempts in 1999 and 2006 have failed already.
Yet other states like New York, Texas and Iowa have state-mandated surrogate decision making committees made up of nurses, doctors, ombudsmen, attorneys and community members who are trained in the process, Chicotel said. He contends California’s unrepresented elderly deserve a similar process.
“These people have no power, typically no money, no relatives, no capacity,” he said. “We have to cut from some other program, these people need it more.”