Tag: hospice

Body of Work

Anna Dovre’s story “Body of Work” is a meditation on the various ways she has encountered death through her medical education: learning to intubate on a cadaver, witnessing death in the emergency department, sitting with a hospice patient. Her essay reflects on the ways death is experienced and understood in the process of medical education and the connections and disconnections with one’s own understanding of mortality.

She starts her reflection with a description of her practice time in a cadaver lab and the physical benchmarks for competency when performing an autopsy. The following section about her time as a hospice companion juxtaposes personal experience with a discussion of clinical terms for ways and stages of dying. “To die actively means the pauses between breaths lengthen and stutter; the mind slips into unconsciousness; the skin begins to mottle into starbursts of purple and blue. To die inactively—well, that becomes a question of semantics, of philosophy.”

The story raises questions about how we honor life and make one’s last moments and after death a respectful and respected process. How can we, as the living, be more appreciative of the gift of life while caring for those around us? This quotation, “If anything, the scene on the table has become more gruesome, but perhaps that has rendered her less real, less human to me,” from after the autopsy is a stark realization that will inspire feelings and emotions in readers.

A Lion in the House

“A Lion in the House” is a 3-hour and 45-minute long documentary about childhood cancer available on Netflix. This emotional and powerful documentary follows the lives of five children battling cancer and spans over six years. The film provides an intimate and unfiltered look at the challenges faced by the young patients, their families, and even the healthcare providers caring for them. Some of the challenges addressed in this film include parenting a sick child, experiencing pain and isolation as a sick child, financial struggles as a family fighting illness, and the toll childhood illness takes on physicians’ emotional wellbeing.

Using storytelling and candid interviews, the documentary explores the complex emotions of grief, sadness, hope, and so many more that arise when confronting a life-threatening illness like cancer. Viewers will gain insight to the multi-layered challenge that cancer is, confronting topics of decisions surrounding death, pain, isolation, friendship, and financial stress. The openness of this film reveals the difficult decisions cancer brings, especially when choices have to be made for a child. This film is a very moving and real portrayal of the waves of heartbreak and hope that come with childhood cancer. This film is unique as it shares the perspectives of everyone involved in the process of treating cancer and could be used in any course interested in working with a very raw personal narrative. One example of a contrast revealed is the different challenges faced by parents, children, and physicians. Children experience the pain and loneliness, parents have to make life-changing decisions for their children, and physicians have to inform about and execute treatment plans taking into account both physical and emotional limitations. Because of the many perspectives shared, it could be a useful film for healthcare students or for any students learning about childhood illness, death and dying, and approaching medical care holistically. Additionally, it raises questions regarding consent and making medical decisions for children, and could be used in a course surrounding medical ethics.

One of the stories told in the film is the story of Tim, who was diagnosed with Hodgkins Lymphoma. Tim is a vibrant and spunky fifteen year old who’s symptoms were initially brushed off by physicians. He had a persistent cough and swollen lymph nodes, and was eventually emergently rushed to the hospital, where he got his diagnosis. Tim has a large family, living with siblings, extended family, and his mother, Marietha. In his teen years, Tim says that he enjoys all of the attention he gets because of his diagnosis, and is resistant to take his medications and listening to his mom and team of physicians. A nurse explains that by not listening, Tim is upholding his “cool” image, and eventually needs a nasogastric tube because of it. On top of his lymphoma, Tim lost his father, which his psychiatrist explains has really limited his social life. Through everything, even a period of his cancer worsening, Tim persists and remains joyful. Eventually, Tim joins a school program for students who are behind, like him, and begins a job at McDonalds. After a special trip that he and his mother take to Chicago, Tim becomes incredibly ill, once again. Resistant to the chemotherapy, his condition worsens, and he becomes worried about his death. Tim ends up dying, and the film covers his medical team and family’s grappling with his death. Tim’s story, specifically, is complex and could spark conversations on ethics, facing death as a young person, balancing being a teen and being sick, parent loss, single parenthood, as well as why his story, like others, is an important one to be told.

Dying: A Memoir

Cory Taylor’s memoir, “Dying: A Memoir,” confronts the profound questions surrounding death and the pursuit of a dignified end. At the age of 60, Taylor was diagnosed with incurable cancer, propelling her into a realm where death was an uncomfortable, often ignored reality. Having witnessed her parents’ agonizing decline into dementia and death in nursing homes, Taylor was determined to approach her own mortality differently. Fueled by a desire for a better death, she started on a journey that led her to become an ambassador for the dying. In a society that often shies away from discussing death, Taylor explored the silence surrounding it, describing it as a “monstrous silence” that leaves individuals facing death feeling isolated.

The memoir raises important questions about the medical profession’s reluctance to discuss death, the prioritization of expensive cancer treatments over palliative care research, and the influence of religious groups in the debate on assisted dying. Taylor herself contemplated assisted dying, even ordering a euthanasia drug, but struggled with the decision due to the absence of a supportive legal framework and concerns about the impact on her loved ones.What sets Taylor’s memoir apart is her lack of self-righteousness. She doesn’t embark on a spiritual journey or offer easy answers. Instead, she explores the complexities within her own family, highlighting irreconcilable rifts and exploring the history that shaped her.

The narrative weaves together scenes from Taylor’s life, from her childhood experiences in Fiji to her first recognition of desire and mortality. Throughout, she emphasizes that life’s messiness is its own reward, challenging the notion of a neat, happy ending. Cory Taylor died shortly after the book’s publication, leaving behind a legacy that reflects her quest for a good death. While the book doesn’t provide a definitive conclusion, Taylor’s peaceful death surrounded by family suggests that, in some ways, her desire for a dignified end was fulfilled.

This story could be used as an example of a patient’s personal narrative of dying in any class that addresses issues of aging and dying. This book could serve as a strong and vulnerable patient narrative for a course in healthcare that wants to address narrative medicine, raising questions of what makes a good story, what doesn’t get talked about, and how many factors and narratives shape the reality of death.

Sandy Briden: Dignity in Dying

Sandy Briden, a 57-year-old chemistry lecturer and scientist from Twickenham, London, shares her personal journey with a rare and incurable form of cancer called sarcoma. Diagnosed in December 2015, Sandy underwent a major operation, briefly experienced remission, and returned to work. However, in August 2016, doctors revealed inoperable tumors, making her diagnosis terminal. Sandy opted for palliative chemotherapy and was able to witness her son’s wedding and her granddaughter’s birth. However, Sandy advocates for the option of assisted dying, viewing it not as an end to life but as a means to live without the constant fear of a painful death, allowing her to say goodbye peacefully. The website reports that Sandy passed away in 2017, though it does not give details of her passing.

This can prompt discussions on topics such as end-of-life care, assisted dying, and the emotional aspects of facing a terminal illness. It gives valuable insight into patient autonomy, the role of medical interventions, and the ethical considerations surrounding assisted dying. Students can explore the emotional and ethical dimensions of healthcare decisions, fostering critical thinking and respectful dialogue on sensitive topics related to death and dying.

John Close: Dignity in Dying

This narrative is written by Lesley Close, John’s sister. In 2001, at age 53, John was diagnosed with Motor Neurone Disease. By Christmas 2002, he required full-time care, unable to stand, swallow, or communicate without assistance. John expressed a desire for assisted suicide, seeking a death that was peaceful and dignified. Lesley supported his decision, finding comfort in knowing he had control over his final moments. John’s death was facilitated by a barbiturate overdose. Reflecting on the experience, Lesley wishes there was legislation that would have allowed John to have his death at home.

Teachers can use John’s story to explore the complexities of end-of-life decisions and the role legislation plays in providing individuals with choices. This story also touches upon the role that personal stories can play in persuasion around policy and legislation, as John’s physician later testified that his experience caring for John changed his own views. Students can engage in debates surrounding assisted dying, considering both moral and practical aspects, and examine how personal narratives can challenge or reinforce theoretical perspectives.

Christie’s Story

This four minute interview centers on Christie Arntsen, a woman who has made assisted dying plans after her likely terminal cancer diagnosis in 2013. It includes an interview with her partner, Jon, and his journey in understanding and accepting her decision for assisted suicide. She talks about her desire for a choice when she reaches the time she feels ready to die.

Although cancer is the diagnosis, the interview deals primarily with themes of assisted suicide/end of life, loss, and choice. She describes how her experience has led her towards advocacy for assisted dying; in fact the video was filmed, produced, and released by Dignity in Dying, a campaign in favor of assisted death.

The story can give insight into why someone might wish to have assisted suicide as an option and consider the option well before their health deteriorates. Christie is shown in her home, with her partner, and engaged with her family, daily activities, and activism, rather than in a clinic, hospital, or hospice setting. The story can also be discussed as a form of advocacy and persuasion.

Mercy

Through beautiful description and comparison Selzer writes about an interaction between a patient, his doctor, and his family at the end of his life. In the story, the patient is in the hospital, suffering and in pain. This piece serves as the doctor’s narrative, as he, too, suffers in deciding how to ease his patient’s pain, which can only be done by euthanasia. The doctor deliberates back and forth about the options and ultimately gives the patient what should be a fatal dose of morphine, yet still, he does not die. This piece raises questions about medical ethics, listening to patients, listening to families, and making informed decisions in healthcare.

This narrative could be used in courses regarding medical ethics, death, medicine, and narrative medicine. This piece could prompt discussion about medical ethics, who gets to make choices, and why certain choices are made in healthcare. It can be used to show the place of creative writing in medicine, as it provides a creative account of an interaction between a doctor and a patient.

Letting go: What should medicine do when it can’t save your life?

Tells several of the wrenching stories from his book (Being Mortal), making points about medicine’s reluctance to stop treatment and acknowledge the patient is dying, even when the chance of improvement is slim to none. “Modern medicine is good at staving off death with aggressive interventions–and bad at knowing when to focus, instead, on improving the days that terminal patients have left.” 13 pps; suitable for undergrads, professional students, maybe medical students; describes hospice treatments and misconceptions about hospice.