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JAMA Forum Archive, 2012-2019: Health policy commentary from leaders in the field
JAMA Forum

Family Caregiving: Realities and Policy

If my recent experience is any gauge, many health care professionals and hospitals don’t pay enough attention to family caregivers. But states are beginning to pass laws to ensure that they do so, and some of the presidential candidates are talking about expanding the Family and Medical Leave benefit.

Diana Mason, PhD, RN

My husband, a composer, was recently hospitalized for surgery that left him with multiple incisions and scores of staples. He had other wounds that weren’t healing well, he couldn’t walk far, and he was in pain. He went home after a week in the hospital, but no one had talked with us about discharge planning until I asked to speak with a social worker on postoperative day 3. Not until a few hours before discharge did a nurse show me how to change the dressings myself. No member of the surgical team or nursing staff asked me what help I needed to care for my husband at home.

I’m a registered nurse, and though I haven’t done hands-on care for many years, I was confident that if someone would just show me what to do and answer my questions, I could manage until we had a visit from a home care nurse. During the 3 days before the nurse showed up, I often thought about family caregivers who don’t have my health care knowledge and experience.

Home Alone

More than 43 million family caregivers in the United States are propping up the health care system. In the face of limits on payment for home care services and delays in service, family caregivers often provide complex medical treatments that would challenge the most adroit health care workers. A family caregiver may be frightened, depressed, and in declining health from the stress of caregiving, particularly when caring for a patient who has dementia or mental illness.

That is the picture painted in a 2012 report, Home Alone: Family Caregivers Providing Complex Chronic Care. This report, by Susan Reinhard, PhD, RN, at AARP, and Carol Levine, MA, and Sarah Samis, MPA, at the United Hospital Fund, describes findings of a survey of 1677 family caregivers nationwide. Another study of 1248 caregivers in 2015 had similar findings.

The title Home Alone reflects the survey’s major conclusion: family caregivers feel isolated. Moreover, many fear that they are not providing the right care and could be harming their loved one. Almost half reported carrying out medical or nursing tasks, including administering medications (often several a day, including injections and intravenous medications), helping the patient with assistive mobility devices, and providing wound care.

The report noted that many caregivers found it difficult to manage medications “because it took so much time, it created anxieties about making a mistake, and some care recipients were uncooperative.” Of those who provided wound care, 42% said they learned to do it on their own, 36% in the hospital, and 23% in an outpatient setting. Furthermore, 66% feared they would harm the patient, and more than one-third wanted more instruction on how to care for wounds.

That last finding resonated with me. Within days of my husband’s being home, I ran out of dressing supplies and was grateful for the home care nurse’s demonstration of how to simplify dressing changes. She observed my technique, made suggestions, and reinforced that I was doing a good job. I can’t overstate how reassuring this was to us. But 69% of the family caregivers in the Home Alone study reported they had no home visitation by a health care professional.

According to the study, only 3% of the family caregivers said that care coordination was being provided by physician assistants, nurses, or others in the ambulatory care office. Instead, 37% of the family caregivers said they coordinated their loved one’s care; for those doing medical and nursing tasks, 53% were the care coordinators. I coordinate my husband’s care by default. No one else does it, despite the importance of care coordination to clinical and financial outcomes.

Family caregivers have become the foundation for caring for patients in their homes—keeping them out of emergency departments, hospitals, and nursing homes. They are crucial for reducing health care costs. As hospitals focus on how to reduce the financial penalties of high readmission rates, they would benefit from adding such services as ensuring early and excellent discharge planning, teaching and preparing the patient and family caregiver for care at home, and providing postdischarge supports such as 24-hour hotlines. This requires assessing what the patient and caregiver will need at home. It’s insufficient to wait until discharge to show a caregiver how to change dressings or give injections.

Policy Responses

Supporting the work of family caregivers is in everyone’s best interests, but the health care system is doing such a poor job of this that states are now enacting legislation to mandate that hospitals focus on preparing family caregivers to provide the patient’s care after discharge. The CARE (Caregiver Advise, Record, Enable) Act, in some form, has been signed into law in 24 states, Puerto Rico, and the US Virgin Islands and is under consideration in others. Most versions have 3 components:

  1. Identify the family caregiver as soon as possible and note this in the patient’s record.

  2. Notify the family caregiver if the patient is to be discharged.

  3. Instruct the family caregiver—before discharge—on caring for the patient at home.

Reinhard has argued that support for family caregivers is an essential feature of high-performing health systems. She said to me, “The CARE Act recognizes the critical role family caregivers play in keeping their loved ones out of costly institutions.”

It’s disheartening that support of family caregivers has to be legislated. Perhaps as we move to value-based approaches to care, there will be more motivation for health care professionals to focus on the caregivers.

This election year provides opportunities for raising awareness of family caregiving issues and garnering support for policies that support these essential members of a patient’s health care team. The Family Caregiver Platform Project is encouraging people to advocate for including family caregiver issues in state and federal political party platforms, and provides a list of specific policy proposals on the group’s website.

Family caregiving issues have received little attention so far in the presidential race. In recognition of the financial hardship experienced by many family caregivers, Hillary Clinton calls for a tax credit of up to $6000 in caregiving expenses and counting caregiving time in the person’s Social Security benefit accrual. Probably the most talked-about policy related to caregiving is expansion of the Family and Medical Leave Act. Bernie Sanders supports a paid 12-week family and medical leave benefit through a payroll deduction approach similar to Social Security, and he has also been a co-sponsor of the Family Act. Clinton supports the same expansion of the benefit, but her position to apply the payroll tax to people earning more than $250 000 has been criticized as jeopardizing long-term support for the benefit. Donald Trump has been silent on policy to support family caregiving.

I’m seldom asked by our primary care clinicians how I’m managing in the caregiver role. My husband had a great surgeon, but I was instrumental in his recovery. And I know I saved Medicare and private insurance a great deal of money. Most important, though, he’s walking without pain and writing music again.

About the author: Diana J. Mason, PhD, RN, is the Rudin Professor of Nursing and Codirector of the Center for Health, Media, and Policy at the Hunter College; Professor at the City University of New York; and immediate past president of the American Academy of Nursing.