On January 1, 2016, Indiana representatives supported the Caregiver Advise, Record, and Enable Act, or CARE Act. This act requires hospitals to collect the contact information of a lay caregiver from admitted inpatients who wish to identify a lay caregiver. The act came out of a 2012 survey conducted by AARP which revealed 46% of caregivers perform complex medical and nursing tasks such as cleaning wounds, giving injections, and managing multiple medications. The purpose of the CARE act was to draw notice to the caregiver role, so hospitals were encouraged to spend the needed time to train lay caregivers.
Two years ago, as a critical care nurse, I was unaware the CARE Act had passed in Indiana. The only change to my workflow was my charge nurse telling me I could no longer skip over the box in the admission section asking for a contact number and name. When I inquired what happened, she indicated something about changes to the discharge process. From personal experience, I can say many of my middle of the night critical care admissions often led to a random name and number to check this box to move to the next screen. As a critical care nurse, I had to assume another nurse would take the time to update to a more appropriate contact. After leaving the bedside to work in the community, I find myself on the other side. This perspective has allowed me to see how far we have come and how much farther we must go.
While the CARE Act is a step in the right direction, hospitals, staff, patients, and caregivers need more concrete examples and additional resources to ensure the CARE Act reaches the intended impact. The three main points of the CARE Act leave many open possibilities to how the future relationship can evolve.
Designation The hospital must provide the patient an option to record the name of a family caregiver into their medical record upon admission to the hospital.
This may be the most difficult aspect of the CARE Act. Telling hospitals to collect a name and educate a caregiver assumes everyone in this world has someone, and this individual is physically, emotionally, intellectually, and psychologically capable of being a caregiver. Hospitals feel the CARE Act has added more time to the discharge process when there is increasing pressure from payor groups to reduce the length of hospital stays.
On the other side, signing up as a caregiver does not lay out the responsibilities the hospital is intending to give to you. Fragmented social services, few community-based resources, and limited reimbursement for home health care is also partly why 46% of caregivers end up performing complex medical tasks at home for loved ones.
In the age of readmission penalties for hospitals, there are opportunities not fully explored on how hospitals can strengthen their relationship with caregivers for better patient outcomes. The first is utilizing the most trusted profession in America, nurses. However, administration and nurses must come to the table to agree how to operationalize identifying caregivers, educating caregivers, and what is an ideal safe transition home. If a designated caregiver suddenly cannot be reached, does the hospital eat the cost of keeping the patient in a hospital bed? Or, from time spent building community connections and programs, have a resource to engage for help? Hospitals are building these relationships with home cares, skilled nursing, and rehabilitation facilities, but around 15% of patient will still return to the hospital. Hospitals can improve their discharge process by looking at the trends causing patients and caregivers to return to the hospital.
Educating future patients should start before hospitalization. Outpatient facilities and medical offices are great places to begin asking patients about their support networks and who they identify as their caregivers. A simple question of, “If tomorrow you could no longer speak, do you have someone who could speak on your behalf?” and “If tomorrow you lost the ability to remember your next appointment or drive to your next appointment, do you have someone who could get you there?” When patients indicate no one, what can doctors and nurses do? When patients do have someone, but a doctor or nurse questions the qualifications of the selected individual, what do they do? What community resources exist or could be created to help such individuals? These questions do not touch the day to day caregiving some individuals require, but the idea is to lay the groundwork for further improvement.
Notification The hospital must notify the designated family caregiver if the loved one is to be discharged to another facility or back home if the patient is not competent to do so
Talk to any caregiver, and you will hear stories of frustrations when a loved one goes into a hospital. Even personally hired patient advocates voice concerns and problems they have when trying to help a patient in the hospital. Why easy to point the finger at hospitals and staff, the importance of patient privacy and the flow of hospital operations often leave caregivers in the dark about discharge. The hope of the CARE Act is for hospitals to build in better communication with the patient and their caregivers. The notification aspect of the CARE Act hinges upon the ability to identify a willing and capable caregiver.
Explanation The hospital must provide an explanation of medical tasks – such as medication management, injections, and wound care – that the family caregiver will perform at home when the hospital deems it necessary
The second area requiring a lot of work for hospitals and staff is the explanation. Studies have shown that a large percentage of information taught to patients is forgotten immediately and the information retained is incorrect. As a nurse who spent a lot of time emphasizing patient education, the statistics around this are disheartening.
Shortly before I left the critical care unit, the teach-back method was gaining momentum. The idea was to teach a patient a topic then ask open-ended questions to ensure the patient understood. For complex medical tasks, the philosophy of “See One, Do One, Teach One” is a tool often used with patients and caregivers. The missing piece of explanation is a follow-up. Working with seniors in their homes, I never realized the barriers patients and caregivers face transitioning the knowledge learned in the hospital to the application at home. Misplaced discharge papers, forgotten contact numbers, incorrect supplies, and knowing how to troubleshoot issues shift the problems onto the plate of caregivers and patients at home. Many follow-up phone calls from hospital staff help prevent issues turning into readmissions. Community-based programs like Fishers EMS WeCare or Indianapolis EMS CORE Care Team are underutilized opportunities for hospitals to connect patients and caregivers to a community follow-up resource.
Hospitals recognize the growing responsibility of ensuring patients transition home safely. Medicare has also supported their efforts offering to reimburse under special circumstances as well as penalizing readmissions deemed unnecessary. The hope is hospitals come to recognize policies and procedures that act as a barrier to caregivers. As the population continues to age, the importance of the CARE Act will be instrumental in embracing the help of caregivers for better patient outcomes. The CARE Act was not created to be a burden on hospitals and staff even though communication takes a significant amount of extra work. Moving forward the CARE Act is a starting point to have these crucial conversations to improve Indiana’s 51st position when it comes to taking care of our older adults, people with disabilities, and their caregivers.