About four years ago, Dr. Gene Dorio sat on the ethics committee of a Southern California hospital whose administrators insisted they could decide whether to disconnect a ventilator from an unconscious patient — even though the man's wife and adult children wanted to continue life support.
The problem, Dorio told California lawmakers last year, was the hospital had the right to override the family's wishes because the patient had not completed an advance directive or designated a power of attorney. The hospital chose to listen to the family, but under state law, his family's wishes held no weight.
That's no longer the case. As of Jan. 1, California joined 45 other states and the District of Columbia with next-of-kin laws that designate a surrogate to make decisions on a patient's behalf — even if that person wasn't specifically authorized by the patient before the medical situation arose. The list includes spouses or domestic partners, siblings, adult children and grandchildren, parents, and an adult relative or close friend — in many cases, the people who brought in the patient for care in the first place.
"Hospitals and HMOs could usurp the rights of the families to make critical medical decisions under the law that was in place at the time — including decisions on pulling the plug," Dorio, a geriatrics specialist in Santa Clarita and member of the California Senior Legislature, told KHN. "We knew we needed a law like most other states have."
According to data analyzed by Penn Medicine researchers, only about a third of U.S. adults have either an advance directive, with which they detail instructions about medical care, or a medical power of attorney, which authorizes someone else to make those decisions.
The idea behind the next-of-kin law, proponents say, is to empower representatives to advocate for patients rather than allow a hospital to make medical decisions, which can be influenced by cost, bed space, or insurance pressures.
"This law takes the pressure off the hospitals, who are being asked to render care, save lives, deal with Medicare, deal with insurance — any number of things all at once," said Michele Mann, a Valencia, California, attorney who specializes in estate planning, including advance directives.
Patient medical rights have evolved through the years, but it is something of a mystery why the state took so long to put a next-of-kin statute on the books. When the California Senior Legislature, which sponsors and lobbies for laws aimed at helping the state's older population, approached the state's Office of the Legislative Counsel for help with the bill, Dorio said, some staff attorneys expressed surprise that such a law wasn't already in place.
Patients without an advance directive or power of attorney have long been able to designate a surrogate, even if it's simply by verbally declaring so while at the hospital - but that relies upon the patient being conscious.
If patients arrive at a hospital or medical center incapacitated or later become so, providers must make a good-faith effort to find a person authorized to make medical decisions, according to a California statute in effect since 2005. The steps include going through the patient's belongings and reaching out to anyone the hospital "reasonably believes has the authority" to make decisions via directive or power of attorney. The hospital must show it has contacted the secretary of state to ask whether the patient had an advance directive.
With the new law in place, health care providers still must check for a patient's advance directive or power of attorney. But once officials have determined that none exists, they can turn to the next-of-kin list, all of whom are legally authorized to speak for the patient.
"It's groundbreaking," said Mann, who makes decisions for her sister, a patient with multiple sclerosis in a long-term care facility. "With the next-of-kin list, often the person who brought the patient in is a family member or close friend with a clear understanding of the patient's wishes. In those cases, the hospital's search is over — a legally authorized representative is standing there."
AB 2338, introduced by Assembly member Mike Gipson, added a section to the probate code, and it resembles the way most states handle the division of a person's assets after death. When people in California die without a will, their assets and property are distributed in a fixed, descending order of priority: spouse first, then children, parents, siblings, etc. Now, a person's medical decisions will be decided in the same way — but not necessarily in the same order.
California gives hospitals and health care providers the discretion to decide which family member or close friend can make medical decisions — a provision inserted into the bill after the influential California Hospital Association and other medical groups opposed a set hierarchy.
Some experts question how effective the new law will be, since hospitals retain the power to pick the patient's representative, especially if there are conflicting opinions among family members.
"Although I have no reason to believe they would abuse the power, the hospitals get to decide who would be a good decision-maker," said Alexander Capron, a medical law and ethics expert and professor emeritus at the University of Southern California.
Lois Richardson, a vice president and legal counsel for the hospital association, said a strict order of surrogates often doesn't reflect what a patient would want. "The concern has always been that having a strict statutory hierarchy, in many, many cases, does not reflect real family relationships," Richardson said.
The hospital lobby dropped its opposition after Gipson agreed to give the industry flexibility, and the measure passed through the legislature with virtually no opposition.
Ideally, people should have an advance directive to ensure their wishes are followed, Gipson said. But for seniors, those who live alone, and anyone without a stated directive, the law opens the field of people who may be able to advocate on their behalf — including a close friend who might just as well be family.
"At least this way, you have someone who knows what you want making those decisions," Gipson said, "rather than leaving it up to a hospital."
This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.