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Terminal illness: Navigating the struggles of acceptance

Linda Thomas, RN
Conditions
August 23, 2023
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Reality knocked me for a loop one evening when my father-in-law called from his home in another state and asked for help. This kind of request was very uncharacteristic for him. We responded immediately and drove to his home. After much conversation and many questions from both sides, we eventually came to the hard truth. His cancer had progressed and, to my mind, was most likely terminal. I dug in and started contacting his doctors, trying to sort out his health issues and prognosis. This took most of a day. I came to realize he was seeing nine physicians! He was in a desperate state of denial. The oncologist repeated that he had been very open and clear with my father-in-law about the cancer and its spread.

My father-in-law had been readmitted to the hospital with a very determined but misguided surgeon. My father-in-law thought the surgery proposed by the surgeon would be a cure. It wouldn’t be, and I had the unenviable task of discussing end-of-life matters with the patient, something the surgeon should have been upfront about.

Hospice came to the hospital to discuss the care they could offer him at his home. He elected to enter into hospice, and we took him home. At this point, he was feeling fairly well, and he had a glorious two weeks with friends and family coming for visits from many miles away. Meanwhile, I quickly discovered I was in unfamiliar territory when it came to his care. It was increasingly difficult for me to care for someone I loved and had a close familial bond with. The amounts of medication he was allowed, the hard decisions I had to make… all were uncomfortably entwined with the closeness of being family. He asked for teaching regarding his health and prognosis, and we spent hours discussing end-of-life matters and the decisions to be made. Even though family was in touch, they were in their stages of denial. I became the liaison for the family’s questions, as well.

Uncharacteristically for me, I was struck with uncertainty, processing my grief while maintaining my professional duties. I relied heavily on the hospice nurses as they made their daily visits. The type of care I gave him, the large doses of medications that kept him comfortable… all were different when compared to my decades of working to save lives and titrating medications for patients who would, with the care given, most likely live to go home and resume their lives. I found myself relying on the hospice nurse, asking questions like, “Are you sure it’s ok to give him that large a dose of painkillers?” She worked with me, explaining how different this type of nursing was compared to the care given to save the lives of my usual hospitalized post-surgical, cardiac, neuro, psyche, burn, chronic respiratory, and emergency patients.

There were different, more intense emotions involved in caring for this terminally ill, beloved family member. I second-guessed myself in areas where I normally was quite confident. The advice that most helped guide me through the nights of caring for him was given to me by the hospice nurse. She repeated to me several times, “This is different from the nursing you are used to. You medicate this patient for his comfort… whatever it takes. You cannot overdose him. I repeat, you cannot overdose him.” So I learned a new skill. I learned to titrate medication for his comfort, to give him what he needed, without second-guessing myself. I kept him comfortable but functional.

And one night, he collapsed as he left the bathroom. He had no perceptible heartbeat. He had no perceptible breathing. After 15 minutes, he sat up and started talking! It blew my mind. Once he was settled back in bed, I teased him about him having left us to visit his favorite brother and his much-loved mother, both deceased. He suddenly looked at me with complete seriousness and said, “How did you know where I was?” He was thoughtful for the next few hours, then quietly said, “I’m ready. I’m ready to go, and I’m not afraid. I’ve done everything I needed to.” Three days later, he left us. That time there was no resurrection.

Linda Thomas is a nurse.

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