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The Role of Nursing at the End of Life

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To further complicate the situation, what does a healthcare provider do when the terminally ill child is old enough to understand the implications of their illness and disagrees with the parent on what care should be provided? For example, a 16-year old girl who has been fighting cancer for five years is given a terminal prognosis. She is sick of surgeries, tired of chemo, does not want to undergo the pain that she remembers from being intubated previously, and wants to enjoy the last few months of her life without bother from medical attention. Her mother vehemently disagrees with her and wants any and all last ditch efforts done to prolong her daughter’s life.

Like shown in “My Sister’s Keeper,” in extreme cases patients can file for medical emancipation from their parents. However, that is the extreme and the minority. Our role as nurses in cases such as these is to facilitate communication, effective communication for that matter, between the patient and her parents. Get social work involved, get child life specialists involved, get the doctors to deliver their medical opinion to both sides. Allow alone time for the family to spend sacred moments together. And be there to listen. To both sides. Because although both sides will probably need you for very different reasons, both sides will ultimately need you. The hope is that eventually the family can come to an agreement that is best for the patient, so nobody bears the burden of guilt or remorse when end of life draws near.

Although nobody likes to talk about end of life, as healthcare providers we are unfortunately forced into end of life encounters on a regular basis. The more comfortable we are with talking about it the more aid we can provide patients and families when they are forced to deal with it. Having your patient prepared in advance can avert further crises from developing in critical situations. I feel as though nurses can have such an impact on patients and their families at the end of life and we can make a difference in more ways than meets the eye.