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Every year in Hawaii, an estimated 247,000 people care for ailing or frail loved ones at home. The average unpaid family caregiver is a 49-year-old woman who works outside the home and spends about 20 hours a week taking care of her mother, for nearly five years, according to the AARP Public Policy Institute. Sixty-five percent of the caregivers are female, and more than 80 percent are responsible for a relative or friend who is 50 or older.
There is no denying that these unsung heroes are doing essential work — their annual contributions would be valued at nearly $2 billion in Hawaii, if they were compensated — and that many are overwhelmed, in need of respite, moral support and better training to handle their growing responsibilities. Their duties go far beyond assisting with bathing, dressing and other details of daily living. They include tasks once reserved for medical professionals. According to AARP surveys, managing multi-drug medication regimens, helping with mobility devices, preparing food for restricted diets and dressing wounds are common tasks expected of family caregivers — not all of whom are up to the job.
As Hawaii’s population ages and pressure grows on the health care system to contain costs, there is little argument that it is in the best interest of patients and hospitals alike to boost the competency of unpaid family caregivers. How to best achieve that goal remains in deep dispute, however, even after a yearlong effort to build consensus on the issue among a working group comprised of caregivers and their advocates, hospitals and skilled nursing facilities, insurance companies, state and county officials and others. Hospitals continue to resist a proposed mandate requiring them to train designated family caregivers before a patient is discharged, if the patient so chooses, while caregiver advocates insist that enacting a consistent standard statewide is the best way to ensure patient safety, since discharge procedures vary from facility to facility.
The sense of urgency is obvious — better care improves the quality of life for patients and for the people taking care of them. The financial stakes are high, too, in terms of overall health care costs and in the cost of fines incurred by hospitals that are penalized if too many Medicare patients are quickly readmitted for potentially preventable reasons.
In 2013, there were about 5,400 potentially preventable readmissions in Hawaii, tallying total hospital charges of $239 million, according to the Hawaii Health Information Corp. A lack of consistent training for unpaid family caregivers did not contribute to every readmission, of course, but the idea that more competent caregivers could prevent some of the infections, respiratory woes and other typical problems that send folks back to the hospital makes sense.
The working group, convened to "examine and assess the role of caregiving for patients released from hospitals, the state of their overall circumstances, and the resources in the community needed and available to assist them," was created via a legislative resolution after bills failed last session that would have required hospitals to recognize and train designated unpaid family caregivers in certain circumstances. The measures were Hawaii’s contribution to a national AARP initiative that has made headway in Oklahoma and New Jersey called the CARE Act, which stands for the Caregiver Advice, Record, Enable Act.
The AARP, a nonprofit organization representing people 50 and older that counts middle-aged caregivers and elderly patients among its members, has identified the caregiving issue as among the most urgent for its members, through surveys and other means. But the Healthcare Association of Hawaii, representing all the acute and long-term facilities in the state, opposes the CARE Act, saying it would duplicate existing regulations, increase hospitals’ liability and is too blunt an instrument for what should be a carefully targeted problem.
Given this divide, the working group was created with a two-year term but was told to report to the 2015 Legislature. Last month, it voted 16-8 to recommend that lawmakers "take no action at this time to mandate that hospitals provide caregiver training." Consisting of more members representing health-care facilities than family caregivers, the panel could not agree on a single legislative report, and is finalizing two, reflecting the majority and minority views. More to the point, caregiver advocates, led by the AARP, have ignored the majority recommendation to take no action on the caregiver training mandate this session and are again pushing the CARE Act, in companion measures, House Bill 490 and Senate Bill 296.
The measures would require hospitals to give every patient the option to designate a family caregiver, whose name would be recorded in the patient’s records; notify the designated caregiver before the patient is transferred to another facility or sent home; and teach caregivers — in person or by video — how to perform required after-care before the patient is discharged. At a minimum, the instruction would include a live or recorded demonstration of the necessary tasks and allow the caregiver to ask questions.
The bills are similar to last session’s, except that language relieving hospitals of any legal liability for the caregivers’ performance has been added — a clause intended to quell the Healthcare Association of Hawaii’s objection that making hospitals train lay people in this manner will open the hospitals to lawsuits if unpaid family caregivers fall short. The language is like that in the New Jersey caregiver law, which passed last year after meeting hospitals’ broad approval.
But George Greene, president and chief executive officer of the HAH, said that lawyers for the association and various hospital members advised that the immunity language would not deter lawsuits. "Once you place a standard of care in state law and there is no requirement on the caregiver, that makes the hospital liable," he said. Moreover, he said, hospitals already follow formal discharge procedures that include family caregivers in the patient’s transition plan, as dictated by federal law and other rules. If some hospitals fall short in providing plainspoken, hands-on instruction when a patient is sent home, the HAH’s Quality Committee and Transitions of Care Committee, both of which meet quarterly, are appropriate forums to tackle the problem, he said, and the AARP is welcome to weigh in.
"It is not necessary to enact this in state law as a mandate," he said. "We’re very disappointed that this group that represents such an important constituency is not willing to engage in a collaborative way and instead is focused on pushing its national agenda."
Rather than forging ahead with the CARE Act, in the face of the working group’s majority recommendation, the AARP should focus on advancing recommendations on which the working group found unanimous agreement, he said. Those include urging the Legislature to fully fund Aging and Disability Resource Centers statewide. ADRC centers on Maui and Kauai have effectively engaged family caregivers and hospital staff to improve post-hospitalization care at home and reduce hospital readmission rates.
Barbara Stanton, state AARP director, said the group had to move ahead because the HAH’s assertion that hospitals already provide the level of pre-discharge training the CARE Act seeks just doesn’t jibe "with what we hear from our members, who are desperate for clear instruction on the care they must provide at home after family members leave the hospital. The family caregiver provides a very critical link in the health of the patient and there should be a minimum standard of training statewide."
Stanton calls concerns about increased hospital liability a red herring, and similarly dismisses the worry that requiring hospitals to train unpaid family caregivers could lead insurance companies to denying claims for paid caregivers down the road, on the assertion that a family member can do it for free.
That’s a red flag raised by Laura Ozak, a licensed registered nurse and attorney in Honolulu who focuses on medical malpractice and elder-abuse cases. "It’s a wonderful proposition to support home-based care, and to support more training for unpaid family caregivers, but it definitely should not be mandated. That creates all sorts of risks for the patients, and for the caregivers, too," said Ozak, who also was unconvinced that the immunity language inserted in this year’s bills would withstand legal challenge.
But Stanton noted that hospitals are already liable for the treatment and the discharge instructions they provide, "and the reasonable enhanced training we’re asking for doesn’t increase their liability. Hospitals in New Jersey felt comfortable with the language and I don’t see how the hospitals in Hawaii would be so different." Similarly, training unpaid family caregivers does not absolve insurance companies of providing authorized coverage. "The CARE Act is not a substitute for paid care, it’s an adjunct," she said.
Fran Miller, a visiting professor at the University of Hawaii Richardson School of Law and an authority on the regulation and finance of the health-care industry, concurred, adding that the health-care industry overstates the risk of lawsuits. "The chance of a successful one, even a settlement from this, is vanishingly small."
Asked why a state law is needed to ensure that unpaid family caregivers receive the training they need, rather than encouraging hospitals to improve transition care themselves, Miller replied, "Res ipsa loquiter, the thing speaks for itself. The hospitals have had the opportunity to do the right thing on their own, and they haven’t."
State Sen. Suzanne Chun Oakland and Rep. Gregg Takayama, co-chairs of the working group and members of the legislative Kupuna Caucus, for which the CARE Act is a priority, foresee progress this session, despite the split outcome of the working group. The Kupuna Caucus has a press conference scheduled Friday to discuss various legislative priorities.
"Even though there wasn’t a consensus on the first recommendation, the group did agree on other points," said Chun Oakland, chairwoman of the Senate Human Services and Housing Committee. "I think both the majority report and the minority report, once they come out, will be useful to everyone who is concerned about kupuna and their caregivers."