The Care I Wish Our Parents Had - MedCity News

At some point in our adult lives, 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 completely unprepared when the time comes.

In my experience, that phone call informing you that mom or dad is in the emergency room is just the beginning. Then from three time zones we started working to find the right specialist, talking to the doctors almost every day. We had to review and select a qualified medical facility, set up their home to mitigate the risk of falls. We took turns traveling to provide personal support. We prepared meals, managed medications, all in addition to typical home care such as groceries, cleaning, and making sure the bills were paid. It was overwhelming, especially because I felt like my plate was already full at work, at home, my kids, and my own health.

Even worse, as I learned, caring for aging parents isn’t 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 illnesses have fundamentally shaped my views on health care.

Professionally, I’ve led and overseen well-intentioned initiatives from value-based care to digital health, but I promise you, as an industry and as a society, we’re still a long way from the care I’d like our parents to have. As a daughter who has been through the squeeze multiple times, I am writing today to all healthcare leaders who are trying to build a better future. We need to tackle the hard stuff and provide these 3 key things:

Serious prevention

Did you make sure your parents got their colonoscopies, mammograms, and routine blood tests? If your answer is no, I can tell you all about the deep regret and guilt you can feel when a parent is diagnosed with cancer or a sudden heart attack.

According to a recent study, only 8 percent of Americans receive the full range of appropriate preventive care services. Statistics vary widely by age group, ethnicity and education. The main reasons 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.”

A friend told me that he overcame his mother’s objections to screening by making appointments and taking her to the doctor himself. But this kind of push for preventive care is what we need on a national scale. It is time to recognize the power of sons and daughters and those who care for families and make it easier for them to coordinate the care of their parents.

I wish it was easy, starting right from our phones, to have consistent reminders, easy appointments, and clear visibility of what care mom and dad are missing. I wish we could all have access to primary care solutions that overcome personal, social, cultural and economic barriers to preventive care, long before mom or dad’s visit to the emergency room.

A reliable healthcare system

My parents don’t trust the health care system, and they’re not the only ones.

Since I work in healthcare and am married to a doctor, we often get calls for help. We have received crisis calls from relatives all over the country asking if the procedure her doctor suggested was the right thing to do. We helped refer specialists, explained medication side effects, and selected Medicare insurance plans, all while reassuring family members they were on the right track.

Even with knowledge, connections, and medical training, we have encountered many situations that we simply do not know how to navigate. For those who can’t find advice they trust, they may simply not adhere to the right care plan.

I wish every mom and dad had primary care solutions they could trust. When faced with big things like chemotherapy, major surgery, or mental health, they should be able to ask for a second opinion and get it easily. When they’re unsure about specialists or facilities, medical supplies, or low-cost drug options, they need to be able to quickly find relevant, accurate data and personalized recommendations. When they fear a side effect of a medication, they should be able to ask all the questions they want in the language they are most comfortable using—and be able to keep asking questions over time without the pressure of collect in one short visit to the office.

I wish we could use data, AI, and all communication modalities—synchronous and asynchronous, in-person and virtual, group and individual—to gain our parents’ trust in our health care system and confidence in their care plan.

Dignity at every stage of aging

Regardless, we must accept that aging is a process full of major life changes. You may feel a sense of shock or defeat if a parent loses mobility. There is nothing more stressful than learning that mom or dad can no longer function on their own.

Although we have access to hospitals, skilled nursing and rehabilitation centers, assisted living, home care and hospice, we have drastically underestimated what patients and their families face. According to a recent study by the American Health Association and the National Center for Assisted Living (AHCA/NCAL), 99% of nursing homes face staffing shortages, and the majority characterize the problems as serious. Shortages include home care agencies and hospices.

The point is that we lack much-needed skills and support when our parents need them most. I hope you never have to experience what it’s like as a family caregiver to make up for these staffing gaps. You may find yourself at your bedside in a nursing home caring for wounds, providing comfort, monitoring medications, navigating, maintaining physical therapy, in addition to taking on additional daily responsibilities such as cooking, cleaning, and laundry.

Sitting in a nursing home one evening, I listened to a patient in the hallway cry out loud for 2 hours straight before a nurse could attend to his needs. Without an active family support system, some patients suffer in silence and die alone.

Aging can make us all deeply vulnerable, and I wish we had a system in place to effectively support difficult times. I wish we could overcome financial constraints and staff ratio problems. I wish we could look at nursing homes and home care with wide eyes and answer the cries for help of the patients who need it most.

Caring for our own parents reveals the darkest aspects of health care. The problems are not new. Rather, these problems are old.

Why is change in healthcare so slow and incremental when it is so important? One reason is that there is no silver bullet—we need policy change, technology investment, reimbursement redesign, benefit design overhaul, and most of all, mindset and culture changes. I believe the bigger problem is that we don’t see these problems clearly until they hit hard.

As professionals, we pursue goals such as return on investment, sales growth, operational efficiency, improvements in the Healthcare Performance Data and Information Set (HEDIS), cost of care and other measures. Improvements in these metrics are both necessary and professionally satisfying, but it doesn’t matter if they don’t help us get the care we wish our parents had.

Photo: ipopba, Getty Images

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