During an eight-month period in 2015, I managed nine discharges for my parents, which included six hospital discharges, two discharges from short-term rehab and one discharge from outpatient surgery.
That same year, the Governor of Illinois, where I live, signed into law the Caregiver Advise, Record and Enable Act (CARE Act), which took effect in January 2016. The CARE Act requires hospitals to:
Offer inpatients the opportunity to designate a family member or friend as a caregiver to provide aftercare in the patient’s residence after discharge; hospitals must record the caregiver’s name, if one is designated.
Notify the caregiver of the patient’s upcoming discharge or transfer.
Consult with and provide a discharge plan to the caregiver that includes the aftercare that the patient will require.
Make an effort to provide instruction to the caregiver in after care tasks described in the discharge plan.
The law means to make hospital discharges a better experience. Eight years later, when I managed my dad’s last hospitalization, the discharge experience was the same. My experience, though, was different. My mom had died 11 months earlier. I knew my dad was getting closer to his death every day.
We left the hospital with referrals for services for him, which included home health until we knew we needed hospice. But I didn’t leave with what I needed: a professional who could listen as I described getting yet another late-night phone call about another fall, about spending another overnight in the Emergency Room and only leaving at 5 a.m. after my dad had been settled into a hospital room. I would have loved someone to hear what it was like for the Emergency Room physician to tell me at 1:30 a.m. that I could take my dad home. I instead advocated that they admit him, which turned out to be the best decision because another day uncovered what they missed during tests in the ER: he broke his pelvis. I can’t imagine what would have happened if I had followed that ER doctor’s guidance and agreed to a 2 a.m. discharge back to home.
Discharged with Support
The CARE Act could change our hospital experience by expanding to include a very important piece: an aftercare plan for the family caregiver. Hospitalizations are already difficult experiences for patients. For family caregivers, hospitalizations are one more difficult situation to manage inside an already overwhelming caregiving experience. Our data shows that family caregivers manage more than 33 different types of care responsibilities over a span of almost 10 years. 84% of family caregivers who share their experiences with us say they provide emotional support for their carees.
On July 8, The New York Times published a piece called “This Is One of the Hardest Jobs in America. Millions Are Doing It Alone.” Dozens of family caregivers shared their caregiving experience, some while apologizing for their tears, as they described the difficulty, the loneliness, the never-ending pressure to get complicated, constant care right.
According to research from Care.com released on July 21, the sandwich generation squeeze hits earlier than anyone expects. Today’s dual caregivers took on both responsibilities at just 34 years old on average and have already been managing overlapping care for more than six years.
We have an opportunity to intervene with effective support so family caregivers don’t carry so much on their own. It can start with an expansion of the CARE Act, now law in more than 40 states, to include an aftercare plan for the family caregiver. An aftercare plan for the family caregiver can include a referral to a trained professional, someone who provides the kind of emotional support Medicare already pays providers to give patients. We want Medicare to expand that support to include the family caregiver. That support could come through the same home health team already coming into so many homes, like the one that helped care for my dad. Right now, through September 14, the Centers for Medicare and Medicaid Services is accepting public comment on exactly this kind of change.
We have interventions for patients. We need interventions for family caregivers when they interact with a system, like a hospital. With effective hospital interventions, we can provide support for family caregivers throughout their experiences, including when the experience often begins after they leave the hospital with their caree after the caree’s initial diagnosis. We can continue to provide support during all the subsequent hospitalizations, which may happen after a family caregiver witnesses a medical emergency. We can provide much-needed post-hospital support to help them heal after another heart-breaking situation, recover after another demanding experience and then manage as they continue to provide and oversee care.
“Zero to sixty home nursing degree!”
In 2015, I would have loved the support to help me manage my life outside of my caregiving responsibilities, which included running a small business that sometimes required travel and working part-time as a nanny for two young children. During that eight-month span, I gained 30 pounds just from the sheer stress of trying to stay current with all the day’s demands. In 2023, I would have loved support to help me with my grief over my mom’s death, my brother’s death in 2021 and my dad’s declines as he drew closer to death.
When we provide much-needed caregiving support, we can help family caregivers keep a life during a life of caregiving. Family caregivers share in our ongoing Caregiving Stress Survey that they miss their lives more than they need sleep, help and resources. On a five-point stress scale, family caregivers rate their current stress at 4.08 on average, and nearly 8 in 10 put it at a 4 or 5.
I recently asked family caregivers to write six-word stories about their hospital discharge experience. Barbara Corley, who cares for her husband and her sister, wrote these stories after her husband’s recent hospital stay:
Zero to sixty home nursing degree!
PICC line newby on her own
Wound vac newby on her own
PICC line meds rule our life
Fitting normal life around PICC meds
New normal for 8 long weeks
Thanking God for grocery delivery van
Thanking God for amazing support circle
Barbara faces eight long weeks of an extensive and exhausting treatment regimen at home. She learned to provide complex care within a matter of days, because her discharge plan required it. She’s also providing emotional support as he recovers from a serious infection.
The focus is on her husband. We need to focus on her, too, so she has support for her stress and uncertainties. How do you manage complex care when you worry so much you’ll make a mistake, when you spend time assuring your caree that all will be okay? We need her story to read like this:
PICC line newby receiving caring support
Wound vac newby receiving comforting support
Let’s expand the CARE Act so every family caregiver writes a story about getting support and care for their caregiving life.
(Image by Tamim Ahmed from Pixabay.)
Our Advocacy Asks
Clarify CHI and PIN. CMS should state plainly that the family caregiver, not only the patient, can receive the social and emotional support these codes already authorize, delivered by an auxiliary professional trained specifically to coach and consult with family caregivers.
Open the home health team to coaching. A trained auxiliary professional should be able to deliver that coaching under Part B, alongside the existing Part A home health team, as new revenue rather than a duplicate service.
Add coaching to the CARE Act’s discharge referral. Discharge notifications should name a referral to a caregiving coach the same way they already name home health agencies and DME suppliers.
Your next steps:
Take five minutes to tell Medicare you deserve support, too.
Register to join me September 12 at 10 a.m. ET (9 a.m. CT, 7 a.m. PT) for Count Me In: A Family Caregiver Advocacy Event. During our free virtual event, we’ll take action to create better caregiving support. Can’t join us live? Still register so you receive a link to our archive.
Resources
Our advocacy only happens because you tell us about your experiences. You help us advocate for you to be reimbursed for your work and to receive more effective support.
Non-Reimbursed Family Caregiver Savings Calculator — Define your work and learn your value.
The Spending Impact — Share how your caregiving experience impacts your spending habits.
Community impact calculator — Want to know what it costs your community when family caregivers don’t get the help and support they need and stop spending within their communities? Calculate the impact.
Already shared your experiences? Please encourage other family caregivers you know to calculate their value and share how their experiences impact their spending.