Tag: death

Heather McQueen: Dignity in Dying

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.

Campaign for Dignity in Dying

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.

Abecedarian: On Purchasing and Receiving Genetic Information from Two Commercial DNA Companies

This twenty-six line alphabetically organized (abecedarian) poem employs image-rich metaphors circling around themes of colonization creating diaspora, disconnected self image, and fragmenting familial connections over time. Korean American poet Yung Shin uses phrases like “ethnographic afterlife,” “genealogical disruption’s (in)ability,” and “sweet peace of the unborn” to convey messages relating to her line of heritage and the demarcations of life, death, and legacy that define it. She touches on concepts ranging from genes to curses to the Neanderthal Valley, all emphasizing tension between past and future, stringing the present along in perpetual liminality. A sorrowful, thought-provoking poem that embraces uncertainty, Yung Shin’s work is packed to the brim with meaning, where every word counts. This poem would be useful in an anthropologically focused health class because it could broaden perspectives of how interwoven our stories are with our ancestors, as well as a genetics course. In the midst of being taught highly factual information, a short reading reflection assignment on something so ambiguous could be not only a refreshing change of pace, but a moment of inspiration.

What Does It Mean to Die?

“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.

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.

Familia conoce a mujer que recibió corazón de hija con VIH

Shaffrey describes the life of a woman, Brittany Newton, who suffered from a heroin addiction and died when she was 30 years old. She was also HIV-positive–for many years, doctors have transplanted organs from one HIV-positive person to another. This happened in the case of Brittany’s donated heart, and Brittany’s family was able to hear her heart beating in Maria’s, the transplant recipient’s, chest. 5 minute read, appropriate for upper intermediate Spanish learners.

Extreme Measures: Finding a Better Path to the End of Life.

A critical care/palliative care specialist describes hard cases at the end of life, admitting times when she has been unclear about how to advise families making difficult decisions about taking loved ones off of what she describes as the “end of life conveyor belt” of extreme measures seen in emergency rooms. From NYT book review: “Medical training fosters a heroic model of saving lives at any cost. American can-do optimism assumes all problems can and should be solved. Both doctors and patients tend to subscribe to a ‘more is better’ philosophy. If technology exists, surely it should be used. Physicians’ fears of litigation plays a part, as do patients’ fantasies of perpetual life. For too many, death remains unthinkable and unspeakable.” A 25-minute documentary that features her and shows some of these kinds of conversations is available on Netflix (“Extremis,” 2016)

Extremis

25 minute documentary filmed in a hospital that shows patients, families and health care professionals (Dr. Jessica Zitter, pulmonary/ER specialist and palliative care, is featured. See her book Extreme Measures: Finding a Better Path to the End of Life”) dealing with end of life moments. Talking through concrete decisions of whether to take a loved one off a ventilator in the same room where the patient lies captures the difficulty of those decisions in agonizing detail. Short enough to show in a class, might be too intense for many audiences (maybe to stimulate discussion among pre-med or medical students). Could be used with a reading like “Letting go,” by Atul Gawande, but content warnings are essential. Academy Award nominee.

Un suicidio (asistido) en Colombia que nació del amor de un hijo por su madre

The author lived with parents and aunts. When father and her aunts died, she was left alone to help her mother with grief and deteriorating health. The two women struggled with the idea of assisted suicide, but eventually chose that path over further suffering. About 3 pages; workable for intermediate and advanced learners, compelling storytelling for a community group.