Implementing the CARE Act: What's Working? What's Not?

Passing a law can be easy; implementing it can be much harder. Case in point: New York State's Caregiver Advise, Record, and Enable (CARE) Act, which went into effect in April 2016. The law requires hospitals to carry out a series of activities to ensure that family caregivers are identified, included in discharge planning, and instructed in performing post-discharge care tasks at home. One year later, it is appropriate to ask: What's working? What's not?

Those questions formed the basis of an April 4 webinar drawing nearly 200 hospital staff members from around the state. Presented by UHF's Families and Health Care Project, the webinar was sponsored by the New York State Partnership for Patients as part of its goal of reducing preventable readmissions by 20 percent.*

The webinar included a summary of CARE Act requirements, a description of UHF's Implementing New York State's CARE Act: A Toolkit for Hospital Staff and Next Step in Care patient/caregiver guides, and a series of polling questions to elicit hospitals' experiences in the first year of implementation. Polling is an inexact science, and the results of an online poll taken during a webinar are far from definitive. Still, they suggest areas of consensus and those in which further exploration and guidance would be helpful. And for organizations in the more than 35 states with versions of the CARE Act, this poll identifies questions that they might ask of their own hospitals.


The CARE Act requires hospitals to:

  • Offer patients an opportunity to identify a caregiver and document that person's contact information;
  • Obtain the patient's written consent to share medical information with the caregiver;
  • Inform the caregiver about the expected discharge date; and
  • Provide instruction to the caregiver about post-discharge care.

UHF's CARE Act toolkit, released in February 2017, addresses each of these requirements and adds an additional step—follow up after discharge, an important aspect of hospital-to-home transitions. Because the CARE Act does not exist in isolation, an appendix provides a “crosswalk” of New York State Department of Health regulations on discharge planning and CMS Conditions of Participation that relate to discharge planning. The Next Step in Care guides for patients and caregivers are available in a short (two-page) version and a longer one; both are available in English, Spanish, Chinese, and Russian.


Hospitals are working to implement the CARE Act. That was clear from the high attendance at the webinar and responses to the polling question “Has the CARE Act required major changes in practice in your hospital?” Nearly 80 percent of those responding said yes. It seems likely that many of those changes concern identification of the caregiver and creating a field for that information in the Electronic Medical Record (EMR). When asked whether their hospital had a formal process for identifying the family caregiver, again nearly 80 percent said yes. What the remaining hospitals are doing to identify caregivers should be explored. Similarly, 72 percent of the hospitals said that they have a routine way of telling patients and caregivers about the CARE Act, but 28 percent do not.

A follow-up poll question asked hospital staff to identify the three most important things about the CARE Act that patients and caregivers should know. “Patients will be asked to identify a caregiver” was clearly the most significant, with 88 percent of the respondents choosing this answer. The second most frequent response was “Caregiver will receive instruction about post-discharge care” (82 percent) and the third was “Patient will be asked to sign written consent to share medical information with the caregiver” (69 percent). Other options included “Caregiver can say ‘no' to acting as caregiver” (23 percent) and “Patient can decline to name a caregiver” (19 percent).


The relatively low percentage of respondents saying that patients and caregivers should know that the patient can decline to name a caregiver is particularly interesting in light of a further question that asked for the three most significant problems in implementing the CARE Act. Here the most common response was “Patient unwilling to name a caregiver” (51 percent). Identification of a caregiver is essential for all the other steps in the CARE Act to happen, so it is important to find out specifically which patients are declining, their reasons, and how this is being addressed.

Another high-rated problem area was “Patient unwilling to name a caregiver because of cognitive impairment” (35.9 percent). This is one situation on which the CARE Act is silent; the law does refer to patients who are unconscious but can be asked when they regain consciousness, but nothing is said about patients with erratic or permanent inability to name someone.

Other broadly noted problem areas were “Patient without stable residence or support system” (46 percent)—some of these people may be among those who decline to name a caregiver—and “Named caregiver unwilling or unable to perform required tasks” (43.5 percent); an equal percentage felt that there was not enough time to perform required instruction. Of interest is the low percentage (17.9 percent) responding that patients' unwillingness to consent to share medical information is a significant problem. Even with the additional burden of written consent (which is not required by HIPAA regulations), most patients want their family and friends to know about their condition and care.


A final polling question asked about the ways in which instruction is provided to caregivers, a key aspect of the law: 100 percent of respondents checked “Demonstration by nurse.” “Caregiver performing tasks to demonstrate competence” was selected by 65.9 percent; it is likely that this followed the demonstration by a nurse. The other options—video instruction (12.7 percent) and group sessions (6.3 percent)—were much less common. A few write-ins noted that printed material was also distributed.


As experience with the CARE Act grows and as potential solutions to problem areas are identified, it will be important to continue communicating with the staff charged with the Act's implementation. Some of the issues brought forward during the webinar stem from the law's provisions themselves, such as lack of attention to cognitive impairment. But many relate to the realities of patients' lives—housing instability, for example—and to caregivers' multiple responsibilities and lack of training. Hospital staff have a difficult job in a difficult time, but the patients and caregivers they serve, as well as hospitals themselves, will be the beneficiaries of their hard work.

* The New York State Partnership for Patients (NYSPFP) is a joint initiative of the Healthcare Association of New York (HANYS) and the Greater New York Hospital Association (GNYHA). UHF is one of several organizations that actively support and engage in NYSPFP's activities, which are funded through a contract with the Centers for Medicare and Medicaid Services (CMS).

Carol Levine is the director of UHF's Families and Health Care Project.

June 12, 2017
Focus Area
Quality and EfficiencyClinical-Community Partnerships
Family Caregiving