United Hospital Fund Releases Two Guides to Help Patients, Family Caregivers Understand What to Expect During Transition from Hospital to Home Care

February 16, 2017 - New York State's 2.6 million unpaid family caregivers, like their 40 million counterparts across the United States, are performing increasingly complex medical and nursing tasks for family members and friends, particularly after patients are discharged from a hospital to home care. The United Hospital Fund is releasing two free guides today to help patients and their family caregivers understand new hospital discharge rules laid out by New York State's Caregiver Advise, Record, and Enable (CARE) Act, which went into effect in April 2016.

The guides help patients and their caregivers understand what they can expect to be asked by hospital staff and what instructions they are entitled to receive under the CARE Act as they deal with the transition from hospital to home.

“Coming home from the hospital can be as scary as being admitted. Family caregivers who are part of the discharge planning process will be better prepared and more confident about providing the kinds of care that used to be provided only in hospitals,” said Carol Levine, director of UHF's Families and Health Care Project. “The CARE Act guides take the discharge planning process step by step and answer many common questions.”

UHF has also created a toolkit that helps hospital staff meet CARE Act requirements for engaging family caregivers and patients as they move from the hospital to home. The two patient and caregiver guides – a short version and a longer, more detailed document – as well as the hospital toolkit are free and available online, and were funded by The Fan Fox and Leslie R. Samuels Foundation, Inc.

The CARE Act was developed by AARP to help unpaid caregivers in the United States who support family members or friends in the home, often with little or no training. To date 31 states, plus the District of Columbia, Puerto Rico, and the U.S. Virgin Islands, have enacted the law, with minor variations in each jurisdiction.

A 2012 UHF/AARP survey found that 46 percent of family caregivers perform medical and nursing tasks, and three out of four administer medicine, including IVs and injections. In a series of discussions with family caregivers in New York conducted by UHF in 2015, participants reported that they felt unprepared for the medical and nursing tasks they were expected to perform at home, such as wound care and administering medication through a catheter.

“Almost two million adults are released from the hospital each year in New York State,” said UHF President James Tallon. “The guides are an important and necessary support for patients and their caregivers as they deal with the hospital discharge process and the often difficult realities of care when they return to the community.”

The guides explain the supports that a hospital is required to offer patients and their caregivers by the CARE Act in order to smooth the discharge and transition process, explain the issues that patients should consider, and provide answers to commonly asked questions.

According to the CARE Act, hospitals must:

As soon as possible after admission, offer a patient an opportunity to identify a caregiver who will be able to help with care at home, and document the caregiver's name and contact information (or the patient's unwillingness to name a caregiver) in the medical record;
Obtain written consent to share medical information with the designated caregiver or document refusal of consent;
Consult with the patient and designated caregiver about discharge options and post-acute care needs and inform the caregiver about the anticipated discharge date;
Provide any needed instructions to the caregiver as soon as possible, but no later than 24 hours before discharge.
The short and long versions of New York State's CARE Act: A Guide for Patients and Caregivers are available in English, Spanish, Chinese, and Russian, and can be downloaded for free from UHF's Next Step in Care website (www.nextstepincare.org). They will also be distributed to hospital staff to pass on to patients and caregivers as a supplement to staff explanations. UHF is distributing the online link via e-mail to a broad range of personnel involved in patient transitions.

The guides and toolkit draw on UHF's Next Step in Care portfolio of web-based tools, which in turn grew out of 20 years' experience working to improve partnerships between family caregivers and health care professionals. It includes information drawn from UHF's three-year Transitions in Care–Quality Improvement Collaborative, as well as material from other transitional care initiatives.


About United Hospital Fund: United Hospital Fund works to build a more effective health care system for every New Yorker. An independent, nonprofit organization, we analyze public policy to inform decision-makers, find common ground among diverse stakeholders, and develop and support innovative programs that improve the quality, accessibility, affordability, and experience of patient care.

Feb. 16, 2017
Focus Area
Clinical-Community PartnershipsQuality and Efficiency
Family Caregiving