It’s Tuesday afternoon, and the physician says Dad will be in the hospital another couple of days. The acute urinary tract infection is resolving, but the Parkinson’s disease that causes him to need ongoing care is complicating matters. Then, Wednesday morning, there’s a call from Mom. “Great news, Sweetie! The doctor will be signing discharge orders soon and your dad can come home right after lunch.” Panic sets in. Of course Dad and Mom are eager for him to be home. But I, their source of transportation, pharmacy pick-up, mobility support and crisis management, am at work. I’m not ready, psychologically or practically. At the very least, I need to shovel the snow at their house before picking him up from the hospital and helping him maneuver safely up the steps.
How did things change so fast? Should I go to the hospital first and possibly appeal the discharge, or is it more important to get things ready at home in case there’s no alternative? Who can cover my afternoon meeting at the last minute? I thought I had another 36 hours.
Scenarios like this happen all the time. In the haste to leave the hospital (a desire usually shared by patient and facility alike), a critical part of the health-care team is too often disregarded – the caregiver. We all envision a joyous post-hospitalization homecoming, but that transition won’t be successful if the caregivers, those family members and friends who will take over on the home front, aren’t prepared and properly equipped.
Identifying the caregiver
This starts with making sure everyone knows who the caregivers are. They may or may not be the person who happens to be bedside when discharge is discussed. The caregiver may not even be next of kin. They aren’t typically identified in the patient’s medical record, and usually they don’t even call themselves caregivers. They’re easily left out of the loop.
Even for an experienced caregiver, new situations arise:
The cancer surgery is over and Mom is ready to return to the ease and familiarity of home, where the real work of healing will begin. “The nurse is showing me how to change the dressing on the incisions and what to do with the tubes and drains. I’ll be ready when you get here, Sweetie.” A cautious drive, avoiding all jarring potholes, brings her back to her place of comfort and rest. Until, that is, it’s time to empty the drains and dress the wounds, and the willing but woozy daughter tries to follow instructions that have grown vague with the passing of time. What seemed so clear and manageable to Mom in the safety and security of the hospital with experts standing by is all of a sudden mysterious and scary to us both. I try to be calm and reassuring, yet the questions pile up. Am I doing it right? Is it supposed to look this way, or is it getting infected? Should I call someone? Who? The surgeon? Her regular doctor? The discharge nurse? The home care company that’s coming in two days?
It’s not uncommon for family caregivers to perform skilled nursing tasks. A 2012 AARP and United Hospital Fund study found that 46 percent of family caregivers are in that position, often having had little or no training. They manage medications, clean and bandage wounds, handle tube feedings and intravenous fluids. Many more coordinate follow-up appointments, transportation, supply deliveries and other aspects of care so critical in the days and weeks following an acute care episode.
This is important, high-stakes work for the families involved and for the health-care system as it tries to rein in costs and improve overall patient experience and health outcomes. Everyone – health-care staff, patients, and families – wants comfortable, healing patients, confident family caregivers and smooth transitions from hospital to home.
But too often that isn’t how it plays out. The default assumption that the caregiver will be able to do whatever needs doing simply is not always the case. The joyous homecoming is, in fact, often laden with fear and anxiety for caregivers. We need to do better by the caregivers from whom we expect so much.
The Caregiver Advise, Record, Enable (CARE) Act being developed by AARP is one way to advance the conversation. Its key provisions are for the hospital to record the caregiver’s name upon admission, to notify the caregiver about discharge in a timely fashion, and to provide explanation and instruction about the medical tasks they’ll be performing at home.
Part of a good discharge plan
We need to ensure that intentionally including and equipping the caregiver is consistently part of the good discharge planning hospitals aim to provide. Identifying the caregivers in the first place establishes a foundation for treating them as key members of the team. Involving caregivers in discharge planning and its timing allows for needed preparation and coordination of additional help. Training and education empower them to give care confidently and well.
The specifics of the CARE Act are still under development, but the concepts are on target. These are steps in the right direction that will help the willing but woozy and the responsible but rushed, on whom we rely so deeply.
Beth Wiggins is director of caregiver support and aging services at FamilyMeans, which has been serving, supporting, and educating family caregivers for more than 25 years. November is National Family Caregivers Month, honoring the valuable role that family caregivers play.
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