I cared for my dad under ‘hospital at home’ in his final weeks. The program is missing one big piece

I cared for my father 24/7 in the last years of his life. A lot of that care happened through the hospital-at-home program. While he received high-quality care, the support provided to his primary caregiver, me, fell short.

Innovation in health care delivery increasingly keeps patients out of the hospital by providing medical care in the home. As a result, care is being pushed into the home much earlier in the patient journey than ever before. One major evolution—starting in the last decade but gaining momentum since COVID—has been the popular hospital-at-home program. It’s widely supported across the nation, with support from the Centers for Medicare and Medicaid Services through the “Acute Hospital Care at Home” waiver. The program ends later this year, and it's up for debate how the federal agency should make such models permanent moving forward. A bill now being considered by Congress would extend the program.

Health care at home

Either way, the trend is clear: Health care providers have made the growth of the hospital-at-home program a major priority for the coming year. Mass General Brigham, for example—one of the largest health care systems in the U.S.—has indicated it would like to move 10% of its medical patients to home care. A McKinsey & Company study predicts that health care will continue to be delivered at home, to the tune of $265 billion by 2025. But while it’s embraced by both health care systems and patients, the hospital-at-home program overlooks a key piece of the puzzle: the family caregivers who do so much of the work, often with little warning and no training.

Family caregivers have long been a part of the care ecosystem. They cover over $470 billion worth of unpaid care every year, and our health care system is reliant on family caregivers to provide over 80% of community-based long-term care. According to the National Alliance for Caregiving, over 65 million Americans serve as family caregivers for a disabled or ill relative. On average, caregivers shoulder 37.4 hours of care per week, a trend that will only intensify with the momentum of aging-in-place and hospital-at-home models. Despite the growing reliance on them, family caregivers have been left out of the equation. But as hospital-at-home and its ilk gain popularity, the care taking place at home is becoming more acute and complex.

As the primary family caregiver to both of my parents for eight years, I intimately understand the emotional and logistical toll caregiving can take, both in clinical settings and in the home. My mom had pancreatic cancer for seven years and moved in with my family. I cared for her until she passed away in my home six years ago. My dad had been living with us since then and experienced a major health decline from congestive heart failure. Last year, we became participants in a hospital-at-home program upon his discharge after a hospital stay to treat complications from congestive heart failure.

At that time, I didn’t know what the program was until I found myself sitting in my living room with my recently discharged dad, a doctor, and a nurse. They brought the monitoring equipment and took his vitals. The whole time they were talking to him as the patient—and didn’t ask me any questions about the living situation, care coverage, or daily care needs. Once their 20-minute visit ended, I was left to figure out all the extra care he needed after a six-day hospital stay. I had to cancel a work trip that week because my dad needed extra assistance for his daily care. The monitoring equipment was impressive, but the many moments he walked a few inches beyond the 13-foot coverage, I was being called by their 24/7 monitoring line asking to check on him.

Having experienced this program firsthand while also being a health-tech leader in the industry, I want to emphasize that the positives abound for health care systems, which can discharge patients from an acute care setting, and for patients, most of whom prefer to be cared for in their homes. However, hospital-at-home will not reach its full potential until the family caregivers are integrated into the process with the appropriate onboarding and support.

Supporting family caregivers

A few key steps should be taken. First, be intentional with the onboarding process and education provided to family caregivers. Clearly explain the program in a way that sets the caregiver’s role and expectations. Lay out how long it’s intended to last, ask the caregiver about the home care environment, and assess where needs may arise. Provide a thorough overview of any resources and support that are available, and incorporate the family caregiver as part of the care team. Caregivers in this situation are not just players sitting by the bedside, as in a hospital setting. They are playing the roles of health aides, social workers, food service, and 24/7 monitoring beyond key vitals. Consider the care in the home environment, where daily life distractions and obligations occur.

In my case, caring for my father at home coincided with my work at ianacare, a caregiving tech company that I cofounded to help bridge the gaps in home-based care. I have learned that the important thing, as we make this critical shift of transitioning care into the home, is to start by acknowledging the importance of family caregivers. The hardest part, after all, falls to them.

Clinical evidence demonstrates the key role they play. The goals of the provider align with the outcome of well-supported caregivers, with a 25% reduction in hospital readmission when a family caregiver is involved. Meanwhile, patients whose caregivers are burned out, stressed, or fatigued experience a 73% increase in emergency department utilization.

I recently spoke with a health care system as they began the process of implementing hospital-at-home, and they mentioned that caregiver support was important to them—but that they were more concerned about getting the program up and running for the patients first. Unfortunately, this is the prevalent mindset within health care systems, and the unintended consequence is the large amount of stress and pressure placed on family caregivers.

While hospital-at-home is designed to deliver clinical support and professional care, the reality is that informal unpaid caregivers do much of the work in the home. We’re caring for our loved ones and ensuring that they get the best standard of care in the process. The moments between in-home and virtual visits quickly become critical—and that is where family caregivers, who are often thrust into that role with little warning and no training, come in. It’s the last mile of the patient’s care.

These caregivers need far more attention. Proper training and support for them will not only reduce burnout, but ultimately lead to better patient outcomes and lowered costs. Hospital-at-home is the start of other initiatives pushing care in the home, so we need to get this right—starting now.

Jessica Kim is cofounder and executive chairman of ianacare. She is a graduate of Brown University and holds an MBA from Northwestern University’s Kellogg School of Management.

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