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Normal Care Hours Don't Work for Workers With Chronic Conditions

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It looks like an airport lounge without the rolling suitcases. There are about 20 of us cancer survivor-types fiddling with our phones or reading the newspaper. A few of us are sipping delicious contrast fluid in preparation for a scan, but most of us are waiting to meet with our oncologists for follow-up or monitoring visits. All of us are between the ages of 20 and 70 and all of us are dressed for success – or at least for our jobs.

What's wrong with this picture? Why are employed adults spending a busy Wednesday morning waiting (and waiting) to visit our oncologists when we should be working?

We are there because our clinicians and all the services of this comprehensive cancer center operate only during standard business hours, which is also when we are usually working. This means that something's gotta give if the growing number of us cancer survivors are to attend to the chronic conditions caused by our treatment and be monitored for recurrences. In the meantime, what's gotta give is us, our employers and our paychecks.

Katherine Evans, a four-time cancer survivor who works in the financial services industry in New York City, has experience with this problem. "I looked at how much time it really takes to do all the scheduling, appointments, testing, preventive care and maintenance. And I realized that most of it has to be done between 9 and 5 on a weekday. I estimate that it takes roughly 15 to 20 percent of my workweek: almost one full day every week! I count myself lucky I have an understanding manager."

Lest we limit this problem to those privileged people who have been treated for cancer and who are still able to work, consider that over 39 percent of the U.S. working-age population – 72 million people – have at least one chronic health condition: asthma, diabetes, heart disease, depression, arthritis, HIV/AIDS. This number continues to grow.

The approach that offers those of us with chronic conditions the best chance of remaining healthy and active is the Chronic Care Model, which calls for proactive, planned testing and monitoring with a clinician periodically throughout the year, rather than waiting for acute episodes or complications.

Making and keeping appointments during the current usual hours of ambulatory care delivery (i.e., 9 to 5, Monday through Friday) has become more important to working patients recently for a number of reasons. There are more of us: We are contracting chronic conditions at a younger age. The baby boom generation is aging so the number of people with chronic conditions is growing. The tough economy means many of us must continue to work long past the age of 65. And 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.

Recognition of this need has dawned slowly: Federally Qualified Health Centers and free clinics are leaders in making all kinds of care available after working hours and on weekends, as are 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 are open 24-7-365 and increasingly offer routine lab services.

Celeste Lee, an administrator at the University of Michigan who has lived with end-stage renal disease for 30 years, said: "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 Kaiser Health News blog discussing the safety threats of 9-to-5 hospital professional staff coverage, suggests that change 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...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, I am raising the question of what it will take for those of us with chronic conditions to get the care we 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 we can 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 coordinate and communicate about our care. Our health care visits during working hours mean we are absent for at least half a day multiple times during the year. Attending to health care during working hours can add 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 some 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, "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."

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 the delivery of ambulatory care often undermines our ability to fully benefit from the care that is available to us.

Our health care should not compromise our job security or ability to work. It should support it.

More Blog Posts by Jessie Gruman

author bio

Jessie C. Gruman, PhD, was founder and president of the Center for Advancing Health from 1992 until her death in July 2014. Her experiences as a patient — having been diagnosed with five life-threatening illnesses — informed her perspective as an author, advocate and lead contributor to the Prepared Patient Blog. Her book, AfterShock, helps patients and caregivers navigate their way through the health care system following a serious or life-threatening diagnosis. The free app, AfterShock: Facing a Serious Diagnosis, offers a pocket guide based on the book. | More about Jessie Gruman


Tags for this article:
Health Care Access   Jessie Gruman   Find Good Health Care   Cancer   Inside Healthcare   Medical/Hospital Practice  


Comments on this post
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DCpatient says
February 12, 2014 at 8:26 PM

Jessie, once again you have highlighted and aptly framed an important issue for those of us navigating life with chronic conditions.
Thank you!

maggie hover says
February 12, 2014 at 8:29 PM

Amen, sisters!! also, I recently changed primary care docs, and was told by the secretary at my neurologist's office that there is at least a two week turnaround on requests for medical records. NPR ran a feature yesterday on applying standard business sense to the way offices are run. One can't get through a whole sentence without being asked to "Hold, please," on the telephone.

Barbara Bronson Gray, RN, MN says
February 12, 2014 at 8:55 PM

So true.

We've got to find a way to create incentives for everyone in the health care system -- physicians included -- to truly put patients at the center of things. That includes creating hours that are convenient for us, sending our medical record on to another provider quickly, responding to our calls. This should especially be true for those who are dealing with chronic conditions.


susan fitzpatrick says
February 13, 2014 at 2:29 PM

I would like to take this conversation in a slightly different direction - it is very likely that much of what goes on in office visit need not go on -- there are probably lots of alternative ways of collecting information, monitoring conditions, interpreting data, and dispensing care that do not require a person to wait for hours in a waiting room ( I have often wondered where the term "patient" came from!) - the ability is there. But is there the will? in reality who likes the current situation - patients do not, clinicians do not, employers do not, co-workers do not...

Belinda says
February 20, 2014 at 7:45 AM

On non-treatment days I don't understand why we cannot skype with the doctor. We spend hours in waiting rooms only for a doctor to look at our bloods, write new scripts and take blood pressure. Surely you do not need to physically be there every time. It's not just the employed, we drive an hour and a half each way every fortnight for this. The petrol costs alone are so high. Then there's the cardiologist, the lung specialist etc and all the scans they require. In an average month 2 years post bone marrow transplant we attend the hospital 4 days. Some weeks it can be cardiac specialist Tueaday, harmatologist Wednesday, lung scan Friday, Thoracic specialist Monday. Then there the psychologist and other services. As a carer who could work part time in my own business it is near impossible. We cannot schedule my work around my husbands hospital appointments. I am constantly having to apologise to my clients that I have to reschedule due to his appts. It is so frustrating. Also that 10am appointment that doesn't actually happen until 2pm on a regular basis due to understaffing, losing bloods, losing records, or just too many people in one day to see. I'm not complaining my husband is alive because of these wonderful specialists, but the system is not efficient and effective at all.

Annette says
February 24, 2014 at 5:16 PM

Every week for many years I needed to take the afternoon off work to have an injection. Over 10 years that would be the equivalent one whole year I was unable to work because of this requirement which kept me healthy. That does not include the parking, gas and stress of bad weather conditions.
I can tell you that my partner did not appreciate the burden. Thankfully I have now found it possible to do the injection myself. This is minor in the face of life threatening illness but was a major inconvenience and expense.

Patrick says
March 10, 2014 at 11:59 PM

The other side of this is having flexible work hours. Happily I have the type of job that lends itself to flex-time and technology is such that I can webcam into meetings and login to my computer remotely from anywhere (including the weeks my wife was in hospital this past summer recovering from 2 heart attacks). Both employers and the medical profession need to leave the 20th century operating model behind!

Sara says
July 28, 2014 at 9:41 PM

Too true. I have lupus and I have 3 opthomologists, an endocrinologist, asthma specialist, cardiologist, rheumatologist, primary care physician, plus podiatrist, dentist and psychologist. They want to see every 2-3 months, or more often: physical therapist wanted 2-3 times a week for hour plus to work on my hands. I have a husband, a 13 year old son and a mostly full-time job. Every week I spend several hours on my health care, either blood tests, prescription refills, insurance forms, trip to doctor -- I know health care workers have families too, they want to spend nights and weekends at home, but could they be a little flexible? I have to be, I do the work I missed in the afternoon that evening or over the weekend. Thank God for remote work. I am grateful for my health care workers and insurance, I know many don't have my benefits but it is hellaciously difficult to balance.