The reason why I managed my father’s family infusion for 10 years has taught me to improve chronic disease care
During my years as an emergency nurse, I saw my father often pass through our doors among patients with chronic illness. Like them, he spent decades suffering from emergencies that could have been prevented with proper, consistent care. But unlike them, his emergency room visits eventually slowed down and then stopped altogether. Not because of the miracle healing, but because he has me: a reliable and skilled nurse who saves her life at home on time every time.
To me, it was obvious that if my dad’s life could be greatly improved with regular home care, many others would do so. The solution seems simple, but as I quickly learned, the road to home infusion is full of administrative barriers, staffing challenges and communication barriers – problems that we should have solved long ago in an industry.
My dad was diagnosed with the common variable immunodeficiency (CVID) in 1979 after experiencing a painful ICU hospitalization, which led doctors to question whether he would survive. Despite being an elite runner and water skiing in advance, the missing infusion means his immune system will be as effective as the average person, binding his survival to medical facilities and their spinning nurse lineup.
Throughout the 1980s, my father and a family member took a full day off every six weeks, drove 30 minutes to the hospital, paid, waited for available chairs, endured the injection, waited for paperwork again, and finally drove home. My extended family regularly donated plasma for these early infusions, but even after the pharmaceutical companies started bringing together plasma donations and manufacturing antibody infusions (IGs), the days at these hospitals drained my dad’s energy, happiness, and even health.
The quality of care is also problematic. In many cases, a nurse with insufficient technical skills will fail him 6-8 times, requiring backup of the nurse and rearrangement, which means missing treatment, sick leave and increasing the vulnerability of the infection. This pattern has lasted for many years: Suboptimal care leads to suboptimal health outcomes.
The turning point was when I (now a registered nurse) moved back home. Suddenly, my dad had access to what would have been the standard: a skilled and reliable RN (although his son) could be treated at home on time every time.
The transformation is direct and profound. He can now receive treatment every six weeks every other week, but every other week, which makes his immune levels more stable. The smaller, smaller dose greatly relieves his post-perfusion fatigue. After each large dose, he did not struggle with 2-3 days of discomfort and suffered for 2-3 days, but needed a short nap before he could recover all his energy.
In my emergency room, I accumulated an epiphany: the father’s decade of inconsistent care triggered an acute episode is not unique. In fact, among emergency medicine professionals, visiting a large number of chronic patients consumes the capacity of most hospitals and makes emerging patients work harder, but no one knows how to break the cycle. Now, as the founder of a health technology company, I know that this disconnection sheds an advanced blind spot in how we approach home infusions and other technical health services.
The traditional approach is to bring home a home health nurse, usually with a different skill base and let them occasionally perform technical procedures that they may only do intermittently. It’s like asking a person who usually operates a large drill rig to operate a commercial aircraft once a month and expect the same level as a full-time pilot.
A better approach changed the course of my father’s life, which reversed this pattern: bringing highly skilled hospital nurses with thousands of hours of technical experience into a home environment. These practitioners have developed the level of mastery at what Malcolm Gladwell famously describes as “10,000 hours” – they place countless IVs, monitor complex drugs and handle unexpected complications as part of their daily work.
There is another key element here: the landscape of available drugs is evolving. New drugs appear regularly, monitoring guidelines and side effect curves. Clinicians specializing in infusion therapy are more likely to remain up to date with these changes, thus providing an additional layer of safety and efficacy.
The nurse who worked hard to manage my father’s treatment was not unabashed. They simply lack the professional experience needed to achieve consistent success in the process of technical requirements. When the specialists performing these tasks perform treatments every day, the patient’s experience improves greatly and health outcomes follow.
The future of chronic disease care must recognize this fundamental truth: Not all nursing skills are interchangeable. Family health and family infusion require different professions and should be treated. You can bring a hospital nurse into a home environment and achieve outstanding results, but hire a major focus on safety assessment and general care and expect a skill level of complex infusions, which often leads to suboptimal results.
This awareness is part of the wider hospital services that begin to change healthcare. As we develop better systems to deploy professional clinical talent into home environments, we can move increasingly complex care out of facilities and people’s homes, in which case treatments are often more comfortable, convenient and cost-effective.
Technology will accelerate this transformation. With powerful data and well-defined use cases, AI can help identify patterns, predict complications, optimize scheduling, and execute other support functions, making home-based care more efficient and effective.
As we navigate these changes, we have to remember my father’s experience and millions of experiences like him. The next area in the healthcare field involves not only new drugs or diagnostic tools; it is about reimagining how and where we deploy existing clinical expertise. For patients with chronic diseases, this difference is the difference between prosperity and survival only.
Author’s resume:
Ryan Johnson is the CEO and co-founder of Float, a health technology company, which reduces operating costs of pharmacies, connects nurses to home infusion job opportunities, and provides quality care for patients with chronic diseases.
Photo: Boonchai Wedmakawand, Getty Images
