CARING FOR SOMEONE with cancer may feel a lot like a crash course in juggling. Suddenly, you need to help coordinate numerous appointments and track complex test results and treatment. These tasks can quickly become overwhelming if the patient is seeing multiple providers for cancer treatment or has additional health conditions, such as diabetes or heart disease.
In the nine months that I cared for my mother before her death from acute myeloid leukemia in October 2017, I learned how to coordinate her treatment at two hospitals. After initially being diagnosed at a local hospital, she was referred to a specialist at a cancer center nearly two hours away to be evaluated for possible participation in a clinical trial or for a stem cell transplant, a treatment in which stem cells from a donor’s blood are transfused into the patient after the patient’s own bone marrow cells have been destroyed by high-dose chemotherapy.
In addition to managing doctor’s appointments, blood draws and chemotherapy cycles at my mom’s original hospital, we were now coordinating care at the cancer center, where she had additional office visits, chemotherapy and imaging tests over several months. My mom later spent three weeks at the cancer center for the transplant, followed by a two-week stay at a Hope Lodge located next to the center so she could easily get to the center for near-daily lab visits. Then she received additional chemotherapy at her “home” hospital, while office visits and imaging studies continued at both locations.
The experience of caregiving can be disorienting no matter the circumstances, but these basic strategies can help caregivers who are taking loved ones to multiple hospitals for care.
Have a system for tracking appointments. Be sure to use a planner, whether a calendar app on your smartphone or old-fashioned pen and paper. Whatever method you choose should be readily available and portable. When you’re making new appointments, you also need to know what else is on the calendar, including work and family obligations.
Seek out support. Ask for a patient navigator or social worker who can help with care coordination. Neither hospital where my mom received treatment had designated patient navigators, but social workers helped point us to important resources, such as local lodging and in-home care options.
Create a master list of all the providers’ contact information. When you visit each provider, ask the doctor, nurse or patient navigator who your main point of contact should be. Hospitals sometimes supply contact sheets that can be filled in as a resource for patients, but you can also use the form provided in this
caregiving guide or create your own. It’s also a good idea to have backup copies with this information.
Take advantage of hospital tools. Tools like patient portals can offer patient summaries from visits and provide important results data, including reports on blood counts and imaging scans. You may also be able to view upcoming appointments. Keep in mind that patient portals vary in functionality depending on the hospital. At the cancer center, I could see my mom’s blood test results in as little as 20 minutes after the blood draw. At her home hospital, blood test results weren’t uploaded for several days.
Be a second set of eyes. Make sure the information you see and hear from providers matches. You could be the first person to spot contradictory information. For example, the doctor at the cancer center incorrectly recalled the dates of one of my mom’s chemotherapy cycles at the other hospital and thought she had low platelet counts because of the treatment. In fact, the low counts were a sign of the leukemia relapsing.
As difficult as coordinating care across multiple providers can be, don’t be intimidated. Ask for help if you need it, and try to take things one day at a time. Slow down and take a breath if you feel yourself getting overwhelmed. And remember: You are not only providing moral support for your loved one. You are also in a powerful position to help ensure that they receive the best treatment possible.
November 14, 2018