Once-and-done changes any hospital can make.
When my father was in the intensive care unit for congestive heart failure, I practically lived at that hospital. Knowing that every patient needs a full-time advocate, I was onsite by 7:00 am to catch his doctors on rounds. I would go home over lunch while someone else visited, back before dinner until 7:30. All while working full time.
As a consultant, my work was mobile. I worked from dad’s hospital room and found it a frustrating experience. WiFi was unreliable, the only space to work was balancing a computer on my lap, and I headed into a stairwell if I needed to make a phone call. Why?
Beth Sureth, my writing collaborator for this article, found her experience with her dad’s multiple hospitalizations was much the same.
So here’s what we’re thinking…
More and more people have the option to work mobile. Being able to keep up with your job while a loved one is in the hospital would make a huge difference for family caregivers. Implementing a few thoughtful changes can be easy enough because they’re once-and-done fixes.
- Strengthen WiFi capabilities. Mark areas, including patient rooms, with signage that WiFi is available and the secure passcode.
- In patient rooms, add a comfortable chair with fold-out tray (picture a first-row airline seat) and viola, it’s also a desk.
- Have a designated family caregiver room on each floor for making personal and business calls, with a sign encouraging families to use it. The room doesn’t have to be big, but it should have a couple of comfortable chairs and a table or even a fold-down surface that can support a laptop. (A coffee machine would truly complete the picture.)
These projects are perfect funding opportunities for former patient family members who would enjoy supporting other families in the hospital.
And consider these additional fixes…
Despite being onsite for so many hours, it was difficult to catch care team members such as the social worker and case manager. Days later when I finally did catch up with them, dad was moved out of ICU and onto a different floor. No fair, you guessed it, he was assigned a different social worker and case manager. It was just as difficult to catch up with this new care team.
Consider how adding family-focused components to the electronic health record (EHR) would help everyone involved:
- Care team members, including multiple physicians, nurses, social workers, and case managers, could introduce themselves to patients and families and provide their contact, scheduling, and preferred messaging information. No more families trying to catch health care professionals in the hospital hallways.
- Modules that patients and families can use would enable easy access to diagnosis, treatment and follow-up information before, during, and after hospital stay.
- Hospitals could document their activities related to the Caregiver Advise, Record, Enable (CARE) Act (now law in 41 states and territories) and help standardize family preparation for discharge and hands-on care at home.
Digital signage, which is becoming more common throughout hospitals, could feature messaging for families explaining the active role they can take in patient- and family-centered care.
Rooms for patients who are dying.
And speaking of signage, how about a sign on a door to a room for patients and families to use during the patient’s final days? We have maternity rooms decorated for the joy and excitement of welcoming a new life to a family. Let’s designate and decorate a few patient rooms for families experiencing the end of life.
When dad was dying, the hospital caringly moved his roommate out so we could have privacy. But his room was right outside of the nurse’s station. It was noisy and distracting at a time that a peaceful atmosphere would have been welcome. What was hardest for us, was that mom could not get close to dad because of her wheelchair.
Wouldn’t it be lovely when a loved one is dying to experience this most traumatic event in a room that is quiet, softly painted, and has calm music? A room that makes the process less stressful? A room that has a bed where everyone, even someone in a wheelchair, can sit closely with their loved one as they pass? What a gift that would be.
With thanks to my collaboration partner Beth Rooney Suereth, CCC, end-of-life doula
Beth founded Caregiving Pathways to teach family caregivers how to manage the hospital stay and the end of life. She is a Certified Caregiving Consultant and end-of-life doula. She works with organizations such as the AARP Public Policy Institute, hospitals, physician practices, pharmacies, and home health and DME providers to help improve patient health outcomes, enhance the hospital experience, and prevent readmissions.
Beth serves as a peer reviewer for the Patient-Centered Outcomes Research Institute and as a skills coach for the CareGiving.com Certified Caregiving Consultant training program. She is a volunteer family caregiver coach at the Thomas Glasser Caregivers Center at Atlantic Health System’s Overlook Medical Center in New Jersey.
To learn more about Caregiving Pathways, LLC, and to download easy-to-read educational materials for family caregivers, visit caregivingpathways.com. You can reach Beth at beth@caregivingpathways.com
Disclaimer: The material in this blog is for educational purposes only. It is not intended to replace, nor does it replace, consulting with a physician, lawyer, accountant, financial planner or other qualified professional.
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Deb is available as a caregiver consultant. She will answer the question: “Where do I start?” and find the resources to alleviate your stress. If you would like to invest a half hour to learn how she can help you, please contact her at: deb@advocateformomanddad.com
