New York State’s CARE Act: New Rules for Hospital Discharge Planning

by Carol Levine, UHF,

Director of the Families and Health Care

A hospital stay ranks high on any list of stressful life events for both the person in the bed and the one at the bedside — the family caregiver. But coming home from the hospital can be just as scary as being admitted. There are often changes in medications, follow-up appointments, and new routines.

New York State’s CARE (Caregiver Advise, Record and Enable) Act is intended to better prepare family caregivers by ensuring that they are part of the discharge planning process and receive instructions about providing care at home. Similar versions of the CARE Act, developed by AARP, have been enacted in more than 30 states.

To help patients and caregivers understand the CARE Act’s impact on hospital discharge planning, United Hospital Fund (UHF) has prepared two free guides. The guides — a short version and a longer, more detailed document — are free and available online in English, Spanish, Chinese, and Russian. There is a user survey to provide feedback on the guides.

UHF has also created a toolkit that helps hospital staff meet CARE Act requirements (listed below) for engaging family caregivers and patients as they move from the hospital to home. The CARE Act materials were funded by The Fan Fox and Leslie R. Samuels Foundation, Inc.

According to the CARE Act, hospitals must:

  • 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.

Although each part of this process can be both supportive and challenging, requirements one and two are likely to be the most difficult for persons with Alzheimer’s and other dementias and their caregivers. Here’s why.

Requirement 1 : Naming a Caregiver

The CARE Act recognizes situations in which the patient is temporarily unable to identify a caregiver but not situations in which that status fluctuates or is permanent. If the hospital patient has Alzheimer’s disease or a related dementia, the level of stress and the chances that the person will not be able to name a caregiver (or even understand what is being asked) increase.

Dementia may have contributed to the primary reason for hospitalization, such as a fall, or it may be secondary to another chronic disease such as diabetes or heart failure. In either case, hospital staff may not recognize that the person’s confusion or resistance to being examined or questioned is related to an underlying neurological condition.

To address the situation at the outset, the family caregiver should inform the nurse or doctor about the person’s cognitive status. Being proactive can save a lot of time and anxiety. Caregivers should bring medication lists, personal health records, advance directives — anything that is helpful in establishing the person’s medical history and prior relationships.

Requirement 2: Written Consent to Share Information

The same problem may arise with requirement two — written consent to share medical information. The person may not understand the reason for signing a paper or be suspicious for other reasons. It is important to reassure the person that this is just a formality so that the doctors and nurses can help the caregiver provide good care at home.

The person may be even more confused because of illness, pain, or the stress of being in the hospital. It may be helpful to suggest to the social worker or nurse that the person is more cooperative in a quiet space. Caregivers can also model good communication techniques by speaking with a calm voice, using short sentences and familiar words, and by sitting in front of and at the same level as the patient. Of course, this is not easy to accomplish in a crowded hospital room with a busy staff person but it may help. (See the Next Step in Care guide for health care providers on easing the stress of a hospital stay for people with dementia for more suggestions.)

Hospital staff is learning how to integrate the CARE Act requirements into their daily practice. Patients and caregivers can play an important role by knowing what to expect and how to respond to achieve the best outcomes.

Carol Levine directs the Families and Health Care Project at United Hospital Fund.

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