Tag: death

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.

List of resources on Grief

In February 2024, the following request was posted to the Health Humanities listserv: “I’m in the process of compiling a reading list for people (of all ages) who are grieving /working through loss. I’d like to include: poetry anthologies, graphic or traditional memoirs, novels/short story collections, children’s picture books/youth fiction, and story-based films.” The request came from Allan Peterkin at the University of Toronto, who is compiling a list. Not surprisingly, recommendations also included works on death and dying. The attached document provides a list I compiled from this thread of the listserv.

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.

ShayShitsinaBag TikTok Channel

Shay Haberstroh, via TikTok, shares their story with Crohn’s disease and an ostomy bag. She talks about doing daily tasks, her love life and marriage, personal relationships, and even makes fashion and cosplay videos for people who have an ostomy bag. Her story explores chronic illness and disability, mental health, as well as what it’s like to face the idea of death as a young person. One of her viral videos shows her, shocked, with a caption that says, “realizing i’ll shit into a bag forever.” She then brings in humor and relief with the caption, “my asshole will be permanently clean.” She explores an issue that people don’t often talk about, bringing comfort to the conversation of body-differences and life saving medical devices, like an ostomy bag. She makes chronic illness an accessible and humorous topic on a platform that lots of young people use, fighting shame.

This TikTok account could be used to explore the use of different platforms for storytelling and advocacy. It could be used to discuss normalizing bodily differences, and the importance of making stories accessible and potentially, humorous. As well, healthcare professionals could benefit from watching these videos, listening to Shay’s critiques of the healthcare system, and evaluating how they could change their practice to accommodate more people and their individual experiences.

She gives great examples of how people with invisible illnesses, as well as women, are often overlooked in the healthcare system. Many of her videos are skits that she creates, acting out scenarios where she was treated poorly in healthcare or not listened to by doctors, despite the fact that she has a serious illness.

Losing Each Other when Caregiving as a Family

This caregiving story explores the challenges faced by the narrator, Dan Harding, when his mother was diagnosed with multiple myeloma, a bone marrow cancer. As the youngest sibling, Dan took on the role of primary caregiver for his two-year-old brother, Ramón, who had non-verbal autism. The narrative explores the complexities of caregiving, his strained relationship with his brother Ramón, and the family dynamics during a time of grief and healing. He describes the initial difficulties in understanding and meeting Ramón’s needs, the rejection faced as the primary caregiver, and the perseverance required to maintain their bond. The story highlights the turning point when he realized the importance of immersing himself in Ramón’s world rather than forcing him into his own. The narrative also delves into the family dynamics, including the denial of Ramón’s father about his son’s condition, leading to conflicts within the family. Different coping styles among family members, clashes, and misunderstandings are discussed, along with the impact of the mother’s health condition on the family dynamics.

The story emphasizes the lack of understanding about mental health within entire families and the prioritization of physical tasks over emotional well-being. It concludes with the acknowledgment that caregiving is a complex journey with both challenging and loving moments and not all aspects can be neatly resolved or glossed over. Dan expresses a realistic perspective on the difficulties of caregiving and emotional healing within a family context.

This story could be used in multiple different settings, like for other caregivers, or in a classroom setting for students or healthcare providers hoping to better understand the experience of caregivers. It provides insight on how an entire family could be supported in the presence of multiple diagnoses, encouraging healthcare providers to help their patient’s families find mental health support as they complete their caregiving duties.

When Breath Becomes Air

“When Breath Becomes Air” is a memoir by Paul Kalanithi, a neurosurgeon who was diagnosed with stage IV lung cancer at the age of 36. The book is a reflection on life, death, and the intersection of medicine and humanity.

The narrative unfolds in two parts. In the first part, Kalanithi shares his journey from being a promising neurosurgeon and scientist to grappling with the reality of his own mortality. He goes into his passion for literature and philosophy, and how these interests shape his perspective on life and death. The second part of the book is written by Kalanithi’s wife, Lucy Kalanithi, after his death. It provides insight into the last months of his life, his battle with cancer, and the emotional and existential challenges faced by both Paul and his loved ones. Throughout the memoir, Kalanithi explores questions about the meaning of life and the purpose of medicine. He provides the experiences of both the doctor and the patient, offering a unique and intimate perspective on illness and the medical profession.

“When Breath Becomes Air” is celebrated for its uniqueness, as it not only captures the intellectual depth of Kalanithi but also the emotional journey of a man coming to terms with his own death. The book has resonated with readers worldwide, sparking conversations about the fragility of life and the importance of finding meaning in the face of inevitable death.

This book could be used in a class that discusses topics of aging, death, and dying or for any class interested in hearing about illness from a provider’s perspective. Students could discuss the differences between a physician and patient narrative, as well as what happens when doctors get sick. It raises questions of medical ethics, as well, as Kalanithi reflects on what he wants in his own death.

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.

Laury’s story: ‘Mum became utterly lost in the fog of her own mind.’

Laury reflects on her experience as a caregiver for her mother, who passed away from Alzheimer’s disease. She recounts the journey through various stages of the condition, describing the initial use of memory aids, the gradual loss of her mother’s cognitive and physical abilities, and the difficult decision to place her in residential care. Laury’s story also outlines the challenges of saying goodbye to a loved one at the end of a long disease.

This story can be used for a class interested in the social, emotional, and financial impact of long-term disease on both the patient and caregivers/loved ones. This story could also be used to look at death and dying through a personal and empathetic narrative which can lead to discussions about stigma and fears that surround death, especially for those with chronic or terminal illnesses.

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.