For years, I’ve been a fervent advocate for moving more care to the home. In a previous role leading CareMore Health, I presided over what was then one of the largest hospital-at-home programs in the country and launched home-based primary care in several markets. At SCAN Group, I’ve led the creation of home-based primary care and chronic disease companies.
And yet, the experience of seeing my father age with multiple chronic illnesses has given me new insight into how home-based care programs often play out in reality and has caused me to reflect on my advocacy for them. As my family learned, in-home care programs often place unrealistic burdens on patients' families, requiring them to perform tasks for which they have no training, and do little to reduce costs.
Related: Hospital-at-home grows despite regulatory uncertainty
It’s time for the healthcare industry to balance the march toward widespread implementation of these programs with strong regulatory, performance and selection standards that ensure the patients who access care in this manner receive treatment on a level equal to or greater than what they would get in a clinical setting.
A burdensome proposition
My father had a 35-year history of Type 2 diabetes. When the time arrived for him to need dialysis, my family asked if we could do it in a home setting. Dad would be more comfortable there than in a clinic, and we wanted him to spend more of the last years of his life at home than in healthcare settings.
Families quickly learn that home dialysis comes with its own challenges. Like other at-home care models, it pushes work that would ordinarily be done by trained personnel onto lay family members, who can quickly become overwhelmed by tasks for which they have no preparation.
Nearly every night, my mother, who was then 72 years old and frail herself — or another family member — had to thoroughly clean and disinfect my father’s abdomen to prevent infection at the site of the catheter that connected him to the dialysis machine. They also had to make daily decisions on adjustments to his concentration of dialysate, which is the fluid used to remove impurities from the blood. Every morning, my mother or another family member had to lug a heavy, unwieldy bag of urine to the bathroom.
My father’s blood sugar levels would sometimes see-saw aggressively, often without warning, because of the dextrose-based dialysate used in home peritoneal dialysis. When his blood sugars rose, he became extremely lethargic. My family learned to correct his high blood sugars by administering a large dose of insulin. Though this would help clear his mental status, his blood sugar would sometimes crash and become dangerously low, leaving my mother in a state of constant worry. She was an aging woman trying to help her husband and keep him comfortable — not a clinician used to aggressively monitoring and correcting for variations in blood sugar.
The truth about costs
Besides convenience and other personal reasons, families often opt for in-home care expecting it to reduce costs. And yet, though these programs often offer less robust bedside care and far less intensive human support of the patient, most home-based acute care programs expect to be reimbursed by commercial and government payers at parity with inpatient care. To be clear, my father’s in-home dialysis was no more financially beneficial to our family than clinic-based dialysis, and pushed work that might be performed by paid staff on to unpaid family members.
If the healthcare system is truly to benefit from home-based acute care services and provide an incentive for families to take on care burdens, they should be priced lower than the cost of inpatient care services. Otherwise, hospital-at-home appears to be a clever way for health systems and healthcare companies to make equivalent revenue while ultimately doing less for patients and their families.
Addressing nuances in care
While I firmly believe that we should move some care into the home, it is crucial to first better assess each patient’s unique circumstances and adequately prepare families for the responsibilities they will undertake.
The most effective programs invest time in understanding a patient’s suitability for care at home, including their clinical conditions and their family members' capabilities. However, there is significant variation. Home-based care today is the Wild West of American healthcare, with organizations operating with a variety of different playbooks with significant differences in quality of delivery. We need standards.
