Family care worth $2.1B, group says

Care provided by family members for ill spouses, parents and other adult loved ones in Hawaii was worth an estimated $2.1 billion in 2013, according to a study released Thursday by AARP.

That updated estimate of the value of family caregiving for adults in Hawaii likely will fuel an already heated debate at the state Legislature about caregiver training.

AARP Hawaii is pressing state lawmakers to require hospitals to identify their patients’ primary family caregivers and train those caregivers before discharging the patients.

That proposed new mandate is strongly opposed by the hospitals and others in the health care industry who say they already establish care plans and offer instruction to available caregivers. However, the hospitals worry that mandated training could expose them to additional legal liability.

Barbara Kim Stanton, state director of the AARP Hawaii, said in a statement that the new national report “demonstrates the urgent need to do more to assist 154,000 caregivers in our state.”

The national AARP study found that 40 million caregivers in the United States provided care in 2013 to adults with limitations in their daily activities, and those unpaid services are worth an estimated $470 billion.

That estimate of the cash value of the services provided by family caregivers “does not quantify the physical, emotional and financial cost of care,” according to the report. It concluded the complexity and intensity of family caregiving requirements for adults with chronic conditions and functional impairments are increasing.

Services that would help Hawaii’s caregivers include extra funding for home- and community-based services, and a statewide “standard” that requires hospitals to train family caregivers when patients are discharged, Stanton said.

The AARP study says 13 states have already passed versions of the “Caregiver Advise, Record, Enable Act,” or CARE Act, which is the model for what AARP is promoting in Hawaii.

The act requires hospitals to ask their patients whether they want to designate a primary caregiver. If they do, the caregiver is notified, and the hospital must provide instruction in the medical tasks the patient will need after discharge, such as medication management, injections and wound care.

“Given the growing demands on family caregivers in Hawaii who provide unpaid care to elderly loved ones at home, AARP strongly supports a proposal that would help caregivers when their loved ones go into hospitals and then transition home,” Stanton said.

Phyllis Baumwell Dendle, government relations representative for Kaiser Permanente in Hawaii, said there is an appropriate role for family caregivers. However, the hospital is not the best place to train them, and discharge is not the best time to train them, she said.

“I think that there needs to be community-based resources available that people can go to over time for these long-term, ongoing illnesses,” she said. “Most people who come out of the hospital do not need a caregiver. They do not need to be taken care of. They are in the hospital for a couple of days, and they are out and on with the rest of their lives.”

Dendle said the health care providers are also concerned that if hospitals provide training for the caregivers, and those caregivers make a mistake, “regardless of what we taught them, the hospital becomes vulnerable to being sued for a bad outcome for the patient.”

She added, “We have no control over what happens once the caregiver leaves. We can provide them all the education you can imagine, and still if the person goes home and takes care of a loved one and makes a mistake, the hospitals feel like we’re still going to be liable for any injuries.”

One supporter of the AARP effort in Hawaii is Roberta Wong Murray, a Kailua-Kona resident who was a television reporter and anchor in Hawaii in the mid-1970s and is now a full-time caregiver for her husband, Mark.

Mark suffers from ALS, or amyotrophic lateral sclerosis, a disease that affects nerve cells in the brain and the spinal cord.

Murray said her husband’s ability to care for himself became progressively worse this year, and today she functions as everything from his nurse to his physical therapist. She manages his medication, moves him from his bed to wheelchair and performs his dressing, bathing, feeding and other activities.

Murray said her husband has been hospitalized in both Hawaii and California, and said the difference in the hospital discharge experience between the two states is like “night and day.”

In Hawaii, “in terms of education and whether you might need a little bit more instruction, I think that’s lacking,” she said.

In California, she recalled, “they have a specialist — a hospital discharge specialist — who comes into the room” and questioned Murray about her plans and arrangements for caring for her husband.

“I think we really need to shed light on the importance of having the community surrounding the recipient be informed and aware and just akamai,” she said.

House Health Chairwoman Della Au Belatti (D, Moiliili-Makiki-Tantalus) said lawmakers will be studying how laws like the CARE Act have worked out in other states before taking up the issue again in 2016.