Last week, the waiting room of the outpatient cancer clinic looked like an airport lounge without the rolling suitcases. There were about 20 of us cancer survivor-types talking on our smartphones, fiddling with our iPads, reading The New York Times. A few of us were sipping delicious boysenberry-flavored contrast fluid in preparation for a scan, but most of us were waiting to meet with our oncologists for follow-up or monitoring visits. All of us were between the ages of 20 and 70 and all of us were dressed for success – or at least for our jobs. What's wrong with this picture? Why were all of us employed adults spending a busy Wednesday morning waiting to visit our oncologists when we should have been working?
We were there because the doctors, the labs and the testing services of this cancer center operate only during standard business hours, which is also when we are supposed to be working. And this means that something's gotta give if the growing number of us cancer survivors are going to attend to the ongoing chronic conditions caused by our treatment and be monitored for recurrences. In the meantime, what's gotta give is us and our employers.
Katherine Evans, a four-time cancer survivor who works in the financial services industry in New York City, has a lot of experience with this problem. "I looked at how much time it really takes to do all scheduling, going to appointments, testing mostly preventive care and maintenance. and realized that most of it has to be done between 9 to 5 on a weekday. I estimate that it takes roughly 15 to 20 percent of my work week almost one full day every week! I count myself lucky I have an understanding manager."
Lest we limit this problem to the privileged group of people who have been treated for cancer and who are able to work, consider that in 2007, a full 39 percent of the working-age population – 72 million people in the U.S. – had at least one chronic health condition: asthma, diabetes, heart disease, depression, arthritis, HIV/AIDS. This number continues to grow.
The treatment approach that offers those of us with chronic conditions the best chance of remaining healthy and active is based on the Chronic Care Model, which calls for proactive, planned testing and monitoring with a health care clinician periodically throughout the year, rather than waiting for acute episodes or complications to drive us to care.
Making and keeping appointments during the current usual hours of health care delivery (i.e., 9 to 5) has become more challenging for working patients in the past few years for a number of reasons: We are contracting chronic conditions at a younger age. The Baby Boom generation is aging. Economic conditions mean many of us must continue to work long past the age of 65.
Further, because of advances in early detection, treatment and symptom management, many of us with serious chronic conditions are able to remain in the workforce, contributing to the support of our families and our communities and paying for our health insurance.
These shifts in demographics, technology and best practices come together in a perfect storm of need for workers with chronic conditions to have access to non-urgent health care outside the 9-to-5 weekday window.
There has been some recognition of this need: Federally Qualified Health Centers and free clinics are among the leaders in making all kinds of care available after working hours and on weekends, as have some health systems like Kaiser Permanente. Similarly, some diagnostic facilities and laboratories are open in the early morning and evening. Free-standing urgent care centers have extended hours, are open 365 days a year and increasingly offer routine lab services – sometimes even mammograms.
Celeste Lee, an administrator at the University of Michigan who has lived with end-stage renal disease for 30 years, notes: "Dialysis units have increased the number shifts and options for start times, making it easier to fit in a full time job. On the other hand, they do not make it easy to get on the shift you need. Sometimes those are already taken up by others who are not working."
But clinicians have been slow to routinely extend their hours for working patients. Michael Millenson, in a Health Affairs blog discussing the safety threats of 9-to-5 hospital professional staff coverage, suggests that this is going to be a heavy lift: hospitals, like most outpatient settings, remain the doctor's workshop, dependent upon the goodwill of physicians who admit and care for patients. Further, telling a neurosurgeon "You're working Wednesday through Sunday this week" would rank high on the list of what a friend of mine calls a career-limiting event.
While I am not talking here about anything as radical as forcing neurosurgeons to operate on Sundays (Heaven forbid!), I am raising the question of how physician practices can best help their patients with chronic conditions get the care they need.
After all, limited hours for ambulatory care delivery mean our employers lose. They lose because we are frequently absent. They lose our time and attention when we are at work, because we must schedule appointments and consult with our clinicians by phone during working hours, the only time it is possible to accomplish these tasks. And they lose when the demands of our workplace are such that keeping our job takes precedence over keeping healthy.
And we lose. We are distracted by hours spent trying to unobtrusively schedule our appointments, coordinate our care and get our test results sent to the right clinicians. Our frequent health care visits during working hours mean we are absent for at least half a day multiple times during the year. Sometimes we use our carefully hoarded sick leave. Sometimes we make up the work after-hours. Attending to health care during working hours adds significantly to the price we pay for our care: those of us who are self-employed or are hourly workers simply don't get paid for this time, which means that a fair number of us don't have the option to sit in that waiting room at all.
Helen Darling, President and CEO of the National Business Group on Health, says that "This is why many employers are providing some health services at the work site and are encouraging use of retail clinics for convenience. It is also a reason that employers support advanced medical homes, integrated delivery systems and ACOs. Employers believe that health systems that have incentives to keep people healthy and reduce risks are more likely to have robust 'after hours' access, not just for emergencies, and multiple ways to have contacts with doctors and advanced practice nurses."
The delivery of health care services exclusively during the typical 9-to-5 workday window is based in part on the outdated assumption that if we have a chronic illness, we are not working. It is left over from an era when fewer people had chronic conditions, when those who did were unable to work and when the dominant medical approach was acute care in response to a crisis.
It is now possible for many of us to live long and well with chronic conditions. We are deeply grateful for the advances in medicine and health care that allow us to remain economically productive. But we are also acutely aware that it is not only the tests and drugs that make this possible. It is also when and how we plan for their use with our trusted clinicians.
Our health care should not compromise our job security or ability to work, but rather should support it.