The CARE Act helps families

As a family caregiver you have probably learned that hospital stays have gotten very short. Often patients are discharged when they are still sick and still need care. Even when home health care is included in a discharge plan most of the care provided after hospitalization is provided by the older person themselves or by family members. Care needs happen at all hours of the day or night. A family member, without the years of training that a nurse or therapist has, will be expected to provide care and support to help recovery. This can be so scary and intimidating that you don’t even hear the instructions quickly shared right before your family member is whisked out the door of the hospital.

New legislation is providing a better solution for the millions of people who provide care for a family member or a friend. The CARE Act (Caregiver Advise, Record and Enable Act) supports family caregivers to be better informed. AARP has championed this act and many other groups have joined the fight to expand the act across the country. The CARE Act is now law in forty states.

The CARE Act had fallen off my radar because unfortunately I live in one of the ten states in the U.S. that have not moved forward to enact this new legislation. I was reminded of the act recently in a conversation with Amber Slichta, Vice President of Programs at the Ralph C. Wilson, Jr. Foundation in Detroit. My conversation with Amber nudged me to go back and take a longer look at the act.

The CARE Act takes a big step toward improving support for families. Hopefully it will soon be enacted into law in all fifty states.

The CARE Act recognizes that family members are part of the care team. As you probably know hospital stays for older adults typically last only a few days. They are brief episodes in the management of chronic illness that may create the need for support and assistance over many years.

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The CARE Act is very logical and seems so simple. Family members are included and recognized as important. Instead of providing patients and families with a stack of papers at discharge a new process is defined. When implemented this new process provides patients and families with information they need. Families are actually prepared to provide better care at home and support recovery.

Under the CARE Act healthcare facilities are required to ask every patient if they have a family caregiver. That is, a family member who helps the person on a regular basis. The name and contact information about the caregiver is included in the health record for all hospital staff to see. Next, the CARE Act ensures that the family member is notified before their loved one is discharged from the hospital. And perhaps most important, the nurses and other professionals identify medical care tasks the family caregiver will need to complete for the person at home. And the family caregiver is provided instructions to complete these tasks.

The purpose of the CARE Act is to ensure that caregivers have the information they need to provide care and support when the person leaves the hospital. This even includes providing family members with a number to call if they have questions after their elder family member returns home.

Sometimes identifying the person who is the family caregiver is difficult for hospitals. Even if a health care agent has been identified and the health care proxy form completed, conversations about the patient’s wishes may not have taken place. It is also possible that the person who will serve as the decision maker – when the older person is no long able to speak for himself – may not be the same family member who will be available for care support at home.

The person who will provide care is the person who needs detailed information to ensure the best recovery possible. Several different family members and friends may visit during a hospital stay and they themselves may not be clear about which of them will step up to provide care and support after discharge. If the older person and his family have not had conversations about personal health wishes there might be no one in the lead role of family caregiver.

Families can help hospitals. While it is best to have conversations before any hospitalization takes place, many families will be taken by surprise by a medical crisis. Taking time to discuss and select the person who will be the primary caregiver should be done as quickly as possible. The first family member to appear may agree when asked if he is the family caregiver but, later, family members may decide that someone else is better suited to be the caregiver.

Family members can decide they will share the post discharge responsibilities but in most cases one person will be the point person for hospital staff. When the primary family caregiver is decided by a family be sure to let the hospital staff know who this person is and how to reach them. This lead family caregiver must be willing and able to learn the tasks that will need to be done after discharge. This support will be critical to successful healing and better recovery.

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When the family caregiver has been identified the CARE Act moves on to its most important phase. The family member will be provided instruction to be able to provide the complex care that will be required when the older person returns home. This might be as easy as learning how to manage a schedule for multiple medications. But a family member may also be expected to learn some much more complex tasks like how to care for an incision, how to care for a drainage tube, how to monitor specialized medical equipment, or how to complete many other care tasks.

One powerful component is to have families complete the task. This has been called “teach back.” The family member, in their own words, tells the instructing hospital staff person how the task is to be done and then demonstrates they have learned from the instruction.

Without this important step family members have often been given nothing more than a sheet of paper printed with inadequate instructions. This new emphasis on making sure that the family member understands what needs to be done, and how to do it, is better for the patient being discharged and better for families. Hospital staff learn before the discharge that a family member is ready and able to do what needs to be done. Or not. If not, the hospital staff can find out if another family member could learn the tasks or make arrangements for home health care if needed.

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