Adding Life to Years

July 29, 2019 | Caregiver Stories

The CARE Act

Did you know some 40 states, including Nevada, have enacted the Caregiver Advise, Record, Enable (CARE) Act? The CARE Act requires hospitals to recognize the vital role of Caregivers when care recipients (of any age) are admitted to a hospital (and after being discharged) by providing Caregivers with resources, training, and information to ensure that discharge plans are carried out successfully.

The CARE Act passed the Nevada legislature largely with help from AARP in 2015.  It employs three simple things to help family caregivers when their loved ones are hospitalized. First, caregivers are designated in their loved one’s medical record. Second, the caregiver is notified before the loved one is discharged from the hospital. Thirdly, the caregiver is instructed and educated about the medical tasks on the discharge plan that will need to be carried out when the loved one has returned to their home.

The hospital discharge staff need to instruct the caregiver on tasks such as preparing the home to ensure the home is safe for the loved ones return; setting up assistance in the home to prevent complications; cleaning wounds; managing the loved one’s pain; managing medications, scheduling and/or helping the loved one with physical therapy; ordering medical equipment; among other tasks.

Exploration of how Nevada hospitals and the other states are implementing the CARE Act and how consumers are responding is an important next step. If you are an identified caregiver, ask the discharge team for the discharge information and instructions on what you will need to do to responsibly care of your loved one. While this is just one step in one setting, we have the chance to help implement this law in the right way and leverage it into broader changes so that family caregivers are recognized and assisted in all parts of the health care system.

An estimated 44.4 million friends and family members in our country provide care for an older person, whether it is help with daily activities like bathing and eating, or long-distance care coordination, or short-term care for an illness or injury. Millions more are caregivers for younger disabled people and those facing serious illness.

A groundbreaking study by the AARP Public Policy Institute and the United Hospital Fund supported by The John A. Hartford Foundation revealed that nearly half of these family caregivers are performing complex medical and nursing tasks such as cleaning wounds, giving injections, and managing multiple medications. Little training, if any, is provided for these difficult tasks and this can be particularly dangerous after a hospitalization. Unfortunately, the CARE Act has no enforcement or penalty if it is not enacted.

These millions of people provide informal caregiving to adult family and friends. In 2000, informal caregiving had an estimated national economic value of $257 billion per year, greatly exceeding the combined costs of nursing home care and home health care. Certainly today, that figure has expanded phenomally.

Given Medicare penalties for 30-day hospital readmissions, which can be up to 4% of all Medicare revenue for that hospital, it may seem obvious that it’s in the best interest of hospitals to have family caregivers well-prepared. However, changing behaviors and habits is incredibly hard, especially in the often chaotic and fast moving world of hospital admissions and discharges. I have personally talked with several family caregivers of hospital discharged elder patients who have not been taught the details of the discharge plan by the hospital staff. This is why an enforceable law and public accountability are needed.

In addition to continuing to press for passage of the CARE Act in other states, there are many important areas of work ahead in implementation of Nevada’s 2015 law. We need strong outreach and education to the public, adequate training of hospital staff, and the appropriate development of regulations to help monitor and enforce the laws. Probably most importantly, states that have the CARE Act experience need to share their lessons and learning with other states that have more recently enacted the legislation. AARP is facilitating much of this sharing.

Lack of sufficient time might be a major reason why the 3 care elements identified in the CARE Act are not routinely addressed by the discharging team (which may include hospitalists, nurses, pharmacists, social workers, and other clinicians). However, there may be other reasons as well, including a lack of knowledge, confidence, or tools for how to best prepare the patient and family caregiver.

This is compounded by the absence of routine feedback loops for gauging the effectiveness of discharge preparation beyond a patient’s readmission to the same facility. If hospital-based clinicians were asked to rank order their daily tasks from greatest sense of professional gratification to lowest, discharge preparation would likely appear toward the bottom of the list.

Although current Centers for Medicare and Medicaid Services’ (CMS) Hospital Conditions of Participation for Discharge Planning do not require recognition or preparation of family caregivers, CMS’ newly proposed revisions emphasize better preparation of family caregivers to be active partners upon hospital discharge. New resources may be needed to implement the CARE Act. In the absence of a user’s guide, hospitals may wish to take advantage of valuable publicly available resources that encourage more effective collaboration between family caregivers and healthcare professionals.

Operationalizing the CARE Act may initially appear simple but in practice it is not necessarily easy. The first care element focuses on identifying the family caregiver, which hopefully happened before or at time of admission. The second CARE Act element entails informing the family caregiver when the patient will be discharged. At present there is no standardization of this practice. Many hospitals conduct interdisciplinary rounds, during which a discharge date is frequently estimated, this date needs to be communicated to the identified family caregiver.

The third care element needs to have educational tools designed to facilitate more productive interactions and guide the care team in understanding what common transition-related areas family caregivers would like to feel more prepared for or confident with. Hospital leaders might consider creating an interdisciplinary team charged with facilitating the implementation of the CARE Act. Similarly, for ongoing input and suggestions for how to further improve all aspects of hospital care, including the discharge experience, hospitals are encouraged to form and foster patient and family advisory councils.

Finally, when it comes to fulfilling the CARE Act and improving the hospital discharge experience for family caregivers, we have to be involved as health advocates. Be aware of the CARE Act and its functions, especially as a caregiver. Point out gaps in the hospital discharge planning process and, as a caregiver, request information and education on the plan of care. In this regard, we are all invested in improving the discharge experience, so speak up! What better way to “add life to years.”

Lawrence J. Weiss, Ph.D. is Founder and CEO of the Center for Healthy Aging. Dr. Weiss welcomes your comments on this column. Write to him at larry@addinglifetoyears.com or c/o Center for Healthy Aging, 11 Fillmore Way, Reno, NV 89519.

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