Switching Places: From Nurse to Caregiver
Coordination of care and educating patients and their caregivers needs to be the standard of care.
Amy J. Hoffman, MSN, PhD, RN
Associate Professor, Michigan State University College of Nursing
It was another great summer evening in Michigan, and my best friend was at the door ready to go on our daily run as we prepped for the Chicago Lung Run that was going to take place in the fall. I had never participated in any kind of run previously but thought it was for a good cause, and my best friend’s enthusiasm for running fueled my motivation. My friend had always been a runner, and I could always count on her showing up at the door each night for our training run.
This evening the weather was great as we began our jog through the streets of my neighborhood. Like most nights, my friend was having no issues with the run while I labored trying to keep up with her. We had just completed our run and walked into my kitchen when my friend staggered and fell to the floor. She was glassy-eyed and confused, and I immediately rushed her to the emergency room, as my friend had no other family member. I have been a nurse for 30 years working in critical care but never the “family member” for a loved one, and the unknown was scary.
The ER personnel walked me through the tests they were running and what they were looking for. My friend was off-the-chart hypoglycemic, and they immediately gave her a bolus of glucose to stabilize her and then shifted their focus to the potential cause. The ER staff answered each of my questions, and I appreciated their candor letting us know the ramifications of the situation. They were also in constant communication with my friend’s primary care physician, going through her health history and ensuring all pertinent post-episode tests were run. Unfortunately, the worst fears of the ER staff and the primary care physician were confirmed: my best friend’s hypoglycemic episode was the result of an insulinoma—a rare, deadly, pancreatic tumor that lives off the body’s glucose.
The diagnosis of an insulinoma was a shock. Not being familiar with an insulinoma, the primary care physician answered a number of questions. What were the options? What were the ramifications? Was she susceptible to having her blood sugar freefall again? The primary care physician was patient and went through each option and the immediate ramifications of living with this cancer. The choice was made to have surgery at a university hospital specializing in resecting these tumors.
My friend and I met with the surgeon and she answered each of my questions in detail.
As the primary caregiver, I really appreciated the time she took explaining the procedure, the ramifications of the surgery, and what to expect the day of the surgery. The surgery lasted nearly 3 hours. The surgeon met with me immediately after and explained that while the surgery had been a success, the tumor appeared to have satellites to the liver, and the prognosis was not good. With diet and chemotherapy, my friend may be able to live up to 6 months.
While I knew this was a potential outcome from our meeting with the surgeon the night before, it was still a shock that my running partner I could never keep up with a few weeks ago was now living with a terminal illness.
The postsurgical transition home was made easier as the surgical nurses detailed how to care for the incision and the importance of taking the pain medications as prescribed, as well as how to be active while balancing rest and sleep, and to eat healthy while keeping up the blood sugars. The nurses also ensured we had follow-up appointments to ease the transition from surgical recovery to end-of-life care.
I learned that being a healthcare professional provides little solace during these situations and only amplifies the limitations of medicine. While none of the news was good, the news was delivered by the various members of the healthcare team in a respectful manner, ever cognizant of the audience. While I held my best friend as she passed, I couldn’t help but reflect on the excellent healthcare she had received and how they had paid special attention to me—the caregiver—and my needs. I also reflected on how incredible it would be if this same level of healthcare could be given to people and their caregivers. My best friend and running partner was my 7-year-old golden retriever, Frosty.
Unfortunately, many patients and their caregivers are not afforded the same level of care my pet received. Health systems are overburdened, leaving healthcare providers stressed with little-to-no time to go beyond meeting the immediate need of the patient. Coordinating care of patients through their healthcare transitions takes time, but if done successfully, can result in seamless, coordinated care where patients thrive. Likewise, ensuring patients and their primary caregivers are given the proper information to successfully manage their illness is critical, as both the patient and their primary caregiver will play a significant role in how the patient manages the recovery trajectory.
While I loved my Frosty dearly, many of us will have to face the reality of cancer, heart disease, diabetes, and a multitude of other comorbid conditions with our grandparents, parents, children, and friends. When we do, wouldn’t it be nice if we as caregivers did not need to worry about making sure all providers involved knew what medications were prescribed, what tests were run, or having to rely on a Google search to see what we should expect postsurgery or what the side effects of medications might be?
Coordination of care and educating patients and their caregivers, to optimize their self-efficacy to manage their care in partnership with the healthcare team, needs to be the standard of care throughout the survivorship trajectory. Hopefully, in the near future, all healthcare will be equivalent to that received by me and my best friend Frosty.