At some point in adult life, we all get a rude awakening regarding mom or dad. Our parents suddenly need our care, and we, as their offspring, play a crucial role in their health. Like me, you may be totally unprepared when the time comes.
In my experience, that phone call informing you that mom or dad is in the emergency room is only the beginning. From three time zones away we then began to work to find the right specialist, talk to the doctors on a nearly daily basis. We had to vet and choose a skilled nursing facility, set up their home to mitigate the risk of falling. We took turns traveling to provide in-person support. We prepared meals, managed medications, all on top of the typical home care needs like groceries, cleaning, and making sure the bills are being paid. It was overwhelming, especially because I felt like my plate was already full across work, home, my children, and my own health.
Worse yet, as I learned, caring for aging parents is not a short term situation — it completely changes your life. I’ve been there more than once, and my personal family encounters with cancer, depression, and other chronic diseases have fundamentally shaped my views on healthcare.
Professionally, I’ve led and observed well-intentioned initiatives from value-based care to digital health, but I promise you, as an industry and as a society, we are still very far away from the care I wish our parents had. As a daughter who has been through the wringer a few times, I write today to all health care leaders trying to build a better future. We’ve got to tackle the hard stuff and provide these 3 key things:
Have you made sure your parents received their colonoscopies, mammograms, and routine blood work? If your answer is “no,” I can tell you all about the deep regret and guilt you might feel when a parent turns up with a cancer diagnosis or sudden heart attack.
According to a recent study, only 8 percent of Americans receive the full complement of appropriate preventive care services. Statistics vary wildly by age group, ethnicity, and education. The root causes lie in a combination of lack of awareness, personal attitudes, and access to care. In my own family, I’ve heard every excuse from “I’m healthy” to “I don’t have time for this” to “these doctors are just pushing unnecessary tests.”
One friend told me he overcame his mother’s objections to preventive tests by making her appointments and taking her to the doctor himself. But that kind of insistence on preventive care is what we need on a nationwide scale. It’s time we recognize the power of sons and daughters and family caregivers and make it easier for them to help coordinate care for their parents.
I wish it were easy, starting right from our phones, to have consistent reminders, easy appointments, and clear visibility into what care mom and dad are missing. I wish we all had access to primary care solutions that overcame the personal, social, cultural, and economic barriers to preventive care, long before mom or dad’s visit to the emergency room.
A trustworthy healthcare system
My parents don’t trust the healthcare system, and they’re not the only ones.
Because I work in healthcare and I’m married to a physician, we often receive calls for help. We’ve taken crisis calls from a relative across the country asking if the procedure her doctor suggests is the right thing to do. We’ve helped to recommend specialists, explain medication side effects, and select Medicare insurance plans, all the while reassuring family members that they’re on the right track.
Even with knowledge, connections, and medical training, we’ve encountered many situations that we just don’t know how to navigate. For those who can’t find advice they believe, they may simply not comply with the right plan of care.
I wish that every mom and dad had primary care solutions they could trust. When faced with the big stuff like chemotherapy, major surgeries, or mental health, they should be able to ask for second opinions and easily obtain them. When uncertain about specialists or facilities or medical supplies or low cost medication options, they should be able to quickly find relevant, accurate data and personalized recommendations. When fearing a medication side effect, they should be able to ask all the questions they want in the language they’re most comfortable using — and be able to keep asking questions over time, without the pressure of squeezing them all into one short office visit.
I wish we could use data, AI, and all communication modalities – synchronous and asynchronous, in person and virtual, group and individual — to earn our parents’ trust in our healthcare system and confidence in their plan of care.
Dignity at every stage of aging
No matter what, we need to accept that aging is a process full of major life adjustments. You might feel a sense of shock or defeat if a parent loses mobility. There’s nothing more stressful than learning a mom or dad can no longer function on their own.
While we have access to hospitals, skilled nursing and rehab centers, assisted living, home care, and hospice, we’ve drastically underestimated what patients and their families face. According to a recent survey by the American Healthcare Association and the National Center for Assisted Living (AHCA/NCAL), 99% of nursing homes face staffing shortages, and the majority characterizes the issues as severe. The shortages extend into home care agencies and hospice.
The point is, we’re missing sorely needed skills and support when our parents need it most. I hope you never have to experience what it’s like, as a family caregiver, to make up for these staffing gaps. You might find yourself bedside in a nursing home doing wound care, comfort care, monitoring medications, navigation, supporting physical therapy, in addition to taking on additional daily living responsibilities like cooking, cleaning, and laundry.
Sitting in a nursing home one evening, I listened to a patient down the hall cry out loud for 2 hours straight before a nurse aide could address his needs. Without an active family support system, some patients suffer in silence and die alone.
Aging could make us all deeply vulnerable, and I wish we had a system that effectively supports the tough times. I wish we could get past the funding constraints and staffing ratio issues. I wish we could look at nursing homes and home care with our eyes wide open and answer the outcry for help from the patients who need it most.
Taking care of our own parents exposes the darkest aspects of healthcare. The problems are not new. Rather, these issues are age-old.
Why is change in healthcare so slow and incremental when it matters so much? One reason is that there’s no silver bullet — we need policy change, technology investment, reimbursement redesign, benefit design overhaul, and most of all mindset and cultural shifts. I believe the bigger issue is that we don’t see these problems clearly, not until they hit home hard.
As professionals, we chase goals like ROI, sales growth, operational efficiencies, Healthcare Effectiveness Data and Information Set (HEDIS) improvements, cost of care, and other measures. Improvements on these metrics are both necessary and professionally satisfying, but they don’t matter if they don’t help us get the care we wish our parents had.
Photo: ipopba, Getty Images
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