Health Story Hub
Witnessing his father’s decline from cancer, an oncologist wrestles with his own fears and desperation. The story illustrates what happens when roles are flipped and a health professional finds himself at the centre of a family health crisis. What would you, as a health professional, do when faced with a similar situation?
The story could be used to promt discussion about care at end of life and provider-patient communication.
“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.
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, 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.
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.
Heather McQueen, deeply affected by her mother Sheena’s inhumane death from terminal cancer, has committed herself to advocating for legal changes surrounding end-of-life choices. Sheena endured a rare form of anal cancer and faced the intense physical toll of radiotherapy, leaving her with third-degree burns. As her health deteriorated, doctors discovered a stomach-blocking tumor, eliminating treatment options. She spent her final week in the hospital, unable to return home due to the discomfort of the ambulance trip. Heather believes that at that point, her mother should have had the right to choose to die. Heather reflects on her mother’s life and expresses her resentment to the legislation that denied her mother the right to a dignified death.
This narrative can assist a class in unpacking the impact of legislative choices on individuals and families. Discussions can include the role of advocacy in shaping public opinion and influencing legislative changes. This narrative provides an opportunity for students to examine the complexities of patient autonomy, compassion in healthcare, and the potential consequences of restrictive end-of-life care options.
The Campaign for Dignity in Dying website features personal health narratives that share individuals’ experiences with terminal illnesses and their perspectives on end-of-life choices, including assisted dying. These narratives highlight the emotional, ethical, and legislative dimensions of facing death and advocate for the importance of patient autonomy in healthcare decision-making. See, for example, the stories by Sandy Briden (a scientist with a rare and incurable form of cancer), Lesley Close (sister to John Close, who was diagnosed with Motor Neurone Disease), and Heather McQueen (whose mother, Sheena, died from an incurable cancer).
The website can be a classroom resource for exploring topics related to end-of-life care, assisted dying, and the impact of legislative choices on patients and families. Students can discuss the limited accessibility to assisted death and the implications for patients with and without access to dignified death. The website and overall campaign are also a fruitful example of how personal narratives can play a role in advocacy for policy change.
“What Does It Mean to Die?,” an article written by Rachel Aviv, chronicles the conflict between the Winkfield family and the medical staff who declared Jahi Winkfield deceased from brain-death. After a tonsil removal surgery, Jahi began coughing up blood and bleeding from her nose profusely. Her mother, Nalilah, the principal interview throughout the article, described how her daughter was not receiving proper care, which Nalilah attributes to racial discrimination. After continued neglect in the ICU, Jahi’s heart stopped, and two days later, she was declared brain-dead. She was put on a ventilator, but in California, there is a limited amount of time a hospital will allow a patient to remain in care. Due to the malpractice that had already occurred in her daughter’s care before “death,” and religious bases, Nalilah argued for her daughter’s right to remain on the ventilar and be cared for. The article offers contextual information regarding California law and insights from bioethics experts, as well as working physicians. After deciding to move to New Jersey due to their laws regarding religious-based continuation of care laws. Aviv details the controversy that emerged from this case, especially from the interest of the press and the pushback from medical professionals. Jahi continued to receive care from nurses and remained on a ventilator. Nalilah, her family, and some medical professionals believe that Jahi still is not “dead;” Jahi has physical responses, menstruates, and has a lowered heart rate at the sound of her mother’s voice. These facts prove, for some, as evidence for her right to care. However, some argue that this could be a shared delusion in the family. Regardless, the article presents many perspectives that ask the audience to understand the situation from different sides, while still staying grounded in Jahi’s story and Nalilah’s fight for care.
This story could be used in discussions of modern-day bioethics, especially in discussion of continued discrimination of BIPOC patients and families. Furthermore, it could lead to a discussion about the right to care and how we define “death” in different contexts.
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.
In Ishiguro’s dystopian novel, Never Let Me Go, health-care becomes fueled by state-sanctioned human cloning designed to farm organs. The clones live separate from regular society, unknowing of their status as clones until they must begin donations as young adults. The novel is told through the perspective of Kathy, a clone who escaped the donation process, as she recounts her relationships and experiences as a student and carer. For the first part of the novel, the reader does not know Kathy or her classmates are clones until it is revealed to them. If used in a class, it would be best not to reveal this twist.
The novel raises ethical questions about the human experience and the medical system. While fictional and dystopic, the themes of morality, exploitation, and autonomy in medical contexts make this piece a basis for discussions of principle issues in bioethics.
Never Let Me Go uses the first person perspective to put the reader into the shoes of a “clone,” not of someone receiving their organs. This use of perspective is worth noting and could lead to discussions of perspective and identity in healthcare and health narratives. Who do we align ourselves with? How do we relate to characters, or more broadly, to people experiencing circumstances different from our own?