Lessons From a Lighthouse: Caring for the Caretakers

by Tom Robertson

Executive Director, Vizient Research Institute

The United States has more lighthouses than any other country in the world. The first lighthouse in what would become America was the Boston Light, built on Little Brewster Island in 1716. Our tallest is the iconic black and white striped tower at Cape Hatteras, North Carolina, at 210 feet tall.  

Prior to widespread automation, a lighthouse typically included an adjacent cottage or other living quarters for the keeper and their family. Coastal lights were usually located on isolated spits of land or even on islands, making regular comings and goings a significant undertaking. Accommodations were made for the people on whom we relied for safe passage.  

As we contemplate the design of clinical spaces—particularly when they involve chronically ill patients whose treatments require extended time and repetitive visits—we can take a cue from those historic marine beacons. 

Patients with chronic conditions who require lengthy and regularly recurring services—like chemotherapy or radiation treatments for cancer, dialysis for end-stage renal disease, infusions for gastrointestinal or autoimmune disorders, or plasmapheresis for conditions such as myasthenia gravis—are often unable to drive themselves to appointments. Their care commonly relies on a friend or family member accompanying them and waiting (often hours) while their treatments are delivered.  

The more complex the illness, or the more unique the treatment, the more likely it is that the patient and their friend or family member had to travel a bit for care. Because it’s often impractical for the accompanying caretaker to simply drop off the patient and return later to retrieve them, it’s not uncommon for the friend or family member to be required to stay.  

When those individuals are holding down a job, the regularity of the medical disruptions can become a formidable problem. The financial hardship is most acute for hourly workers who often must be physically present to perform their job functions. Many have neither the flexibility in schedule nor the option of remote work to accommodate the time commitment of being a caretaker. Often, time spent attending medical visits with a loved one results in lost compensation.  

Health care providers could alleviate the financial burden on these caretakers by offering the services over extended hour schedules, enabling the patients to come at times when their caretakers are not missing work to be with them. Evening and weekend options are considerably more valuable to patients with chronic conditions who must return regularly than for “one and done” services. Most patients and their caretakers can work around a short-term investment of time; the difficulties arise when there is a chronic condition requiring repeated return visits over a long period of time. 

Not everyone needs evening or weekend appointments, even if their caretaker is working. The shift from strictly office-based work to hybrid or even full-time remote settings creates considerable latitude for caretakers who have the flexibility to perform their job functions from wherever they are. The key is for health care providers to facilitate those caretakers while on site.  

What if health care providers created functional workspaces for caretakers to use while patient treatments were underway? A great deal of attention has been paid to making the process of waiting more comfortable, but when visits are recurring and treatments stretch into hours, productivity is more important than comfort. Simply waiting may not be an option for every employed caretaker…working may be a necessity.  

Conventional waiting rooms, regardless of how comfortable the furniture may be, are not conducive to friends and family getting their work done. By providing individual workspaces, not unlike the “hoteling” now underway in many corporate environments, health care providers could eliminate a significant obstacle facing these patients and their families. 

As free-standing infusion centers compete with facility-based ambulatory care, accommodating the needs of patients’ friends and families—whether through extended hours or a productive on-site work environment—will become increasingly important. Standalone infusion centers do not have the depth of clinical resources available in case of adverse patient responses that traditional medical providers offer, but convenience—whether in the form of extended hours, proximity, parking or supportive workspaces for caretakers—are easily added. Relying on deeper clinical capabilities will not be enough as chronic care moves to the low-acuity ambulatory environment.  

To protect market share, traditional providers will need to think in non-traditional ways. The measure of success is more likely to be increased patient satisfaction than increased volume, manifested in the form of loyalty. As new and unconventional competitors enter the ambulatory care space, traditional providers can solidify patient loyalty by caring for the caretakers. At what is often the most stressful, most challenging time for our patients and their families, we have the opportunity to lighten the burden.  

All but one of America’s nearly 700 lighthouses are now fully automated. Only one—the Boston Light—still has a keeper…the result of a declaration by Congress in recognition of its historical significance. In chronic disease management, things are anything but automated. Almost every patient comes with a caretaker and many of them are desperately trying to do two jobs at once.  

We can help them.