For those navigators caring for patients with advanced cancers, you have probably witnessed what I have—the patient wanting to stop treatment and the family (young husband or adult children) wanting to do an end run to the medical oncologist and say, “We want her to continue treatment and not give up. She is a candidate for drug therapy XYZ. I will talk her into continuing treatment.” And what happens? The oncologist agrees because he has been taught to treat the disease and perhaps even feels relieved that treatment will likely continue. In the meantime, the patient is too weak to fight her family, and gives in to their pressuring wishes.
As a patient’s navigator, however, we must assert ourselves as the patient’s advocate and not allow her goals of care to be derailed due to the desire of others to keep her alive, although frankly she is not likely really living or enjoying life in her current medical condition. This requires the navigator to sit down with the family and emphasize what the patient desires, and that such decisions should be made by the patient. We must be the voice for our patients, especially in difficult circumstances such as these. The patient wants to live, not just exist. She wants to preserve her quality of life, which she will most likely totally lose if she continues down the road of toxic treatments. Her desire is not X number of days to live but instead spending a few remaining days as she wishes—far from an infusion center or inpatient hospital bed.
When such a scenario happened with my own father, I was stunned. My mom, who I felt had been totally onboard with my dad making all the decisions, suddenly asked a surprising question after he enrolled in hospice—which I initiated since none of his medical oncology treatment team was doing so. My mother asked my dad, in front of his oncologist, “Why do you want to leave me?” I believe his response became part of his legacy because, and I use this phrase a lot, dad said, “You need to love me enough to let me go.” When she heard this, she said, “Oh, of course.” He continued hospice care at home, and treatment was never discussed again.
Treatment for treatment’s sake is bad care. It always has been. Therefore, when placed in a situation where family wants to take over the decision-making and have their loved one receive treatments they frankly don’t want but are too tired to fight for their own rights as a patient, please always step in on their behalf. We go through this world once. We need to make sure the patient experiences their end of life on their terms...no one else’s.