Rachel Prince is currently an undergraduate senior at the University of Massachusetts-Amherst, where she is part of the Honors program, and is in the process of obtaining a Certificate of Specialization in Creative Writing. We welcome her to our Editorial Board.
Julie Freedman’s “Vigil” (Spring 2021) tells the story of the interaction between a palliative-care physician and a patient named Eleanor, who frequented the hospital due to her worsening ALS. Dr. Freedman paints a picture of this patient as a bright woman who, despite the health problems that consistently result in hospital admissions and repeated brushes with death, clings to the present and hopes to maintain a sense of normalcy. Eleanor and her husband, Bill, convey to the physician that she wishes to continue activities that she did before the rapid onset of her disease: gardening, spending time with her grandchildren, or even something as simple as stopping her BIPAP and enjoying a sandwich. Beyond the physical descriptions of Eleanor’s situation, Dr. Freedman illustrates the deteriorating patient’s desperate wish to cling to agency over her condition and to be defiant in the face of her illness.
Shortly after reading Vigil, I stumbled upon Sara Baker’s poem, “What Do the Dying Want?” (Spring 2015). In this work, Baker explores the titular question by wondering how healthcare professionals, hospice workers, or even caregivers and family members can properly address the needs of the dying – is the correct way through words and stories, reminiscing, music, meaningful touch, or just holding space and being present? Or is it none of the above? Baker articulately ends the poem by answering the question in the best way as we, who are not experiencing what those in end-of-life care are, can; she notes that "no one knows what the dying want/wanting is what the living do."
Both previously mentioned works explore themes of death and dying and how surrounding parties can begin to address grief and loss and the weight that the desires of the dying patients carry. Eleanor writing "I WANT CONTROL" in the notebook serves as a reminder that patients in their final stages often end up behind a glass wall where they become onlookers of their own transition into passing. Perhaps due to the extent of their illness or having someone else handle their personal needs, choice becomes something they can no longer access. In Baker's poem, something as simple as "want"—a natural state of any human being—vanishes for those that are now considered dying. Such is the heartbreak of reaching a point where one has lost control of their body, their power to choose, and their distinct voice.
Both the non-fiction piece and the poem do an excellent job at allowing the reader to understand why approaching end-of-life can be so daunting – the loss extends beyond just life to other things that we as healthy human beings have the privilege of not devoting much thought to: choice, power, desires, and our own authentic voice. Can we truly ever answer the questions about the dying that Baker asks in her poem? Can healthcare professionals like Dr. Freedman return full control to a patient at the end of their life? We can only do the extent of what we can when confronted with death: making an effort to understand the complexity that surrounds palliative care patients, to keep them comfortable, and surround them with support, unfading love, and a willingness and to listen to their needs and wants—whether spoken or unspoken.
Rachel Prince is currently an undergraduate senior at the University of Massachusetts-Amherst, where she is part of the Honors program, majoring in Psychology with a Neuroscience concentration, and is in the process of obtaining a Certificate of Specialization in Creative Writing.