Tag: ethics

Family Stories of Tay-Sachs Disease

The Cure Tay-Sachs Foundation website contains many resources including information about the disease, carrier statistics, family stories, research initiatives, and fundraising opportunities. Tay-Sachs disease is a rare, fatal genetic condition that destroys nerve cells in the brain and spinal cord primarily in babies and young children. It has a history of affecting people of Ashkenazi Jewish descent but now is seen in other ethnic backgrounds. If you click on the “family stories” tab, you can view over twenty personal narratives of children who were diagnosed with Tay-Sachs, often written by parents. The stories are divided into three short sections documenting the journeys from when they first realized something was wrong, how the illness progressed, and what the family’s ultimate decision was in how to handle it. One of the stories is told from the perspective of an adult with late onset Tay-Sachs as well as bipolar disorder, and she describes the experience of dealing with both conditions simultaneously. Another feature of this website to explore is the “drawings of our kids” tab. You can click on any of over fifty names to see an original drawing of children who have died from Tay-Sachs, all drawn by one of the grandfather of one of the children. The family stories would be a very impactful reading assignment in a course about genetic diseases to increase awareness about the many different ways the same disease can affect individuals and families. It could also fit into a bioethics course to prompt discussions or even essays on if/when it is ethical to stop providing treatment and medical intervention for a patient who has a terminal illness with serious impacts on quality of life for the patient and family.

Former Anti-Vaccine Mom Explains How Movement Pulled Her In, And How She Left

This NPR interview discusses Lydia’s journey from being initially pro-vaccine to joining the anti-vaccination movement after a traumatic experience with her first child’s vaccinations. She describes how online forums fueled her fears, leading her to reject vaccines for her subsequent children. However, Lydia’s perspective shifted during the COVID-19 pandemic, prompting her to research and ultimately decide to vaccinate her children. The story highlights the role of misinformation in the anti-vaccine movement, the challenges faced by healthcare professionals combating disinformation, and the impact of social media. Lydia’s experience also emphasizes the need for open dialogue, fact-based education, and addressing vaccine hesitancy. The interview concludes with Lydia expressing her newfound motivation to pursue nursing school to help educate new parents about vaccines.

Both audio and written transcript are available.

Lydia’s story would be relevant to health-related courses or discussions related to vaccination, healthcare decision-making, and the impact of misinformation.

Health Stories Project

Health Stories Project has an online presence in multiple platforms, including this website as well as Youtube, Facebook, and Twitter. Patients are invited to tell their stories in response to a variety of prompts. The site includes a large, searchable collection of stories about a wide variety of conditions and experiences. The stated purpose of the site is “to give people opportunities to share their personal health experiences and to learn from the experiences of others.” Digging into the privacy policies reveals that information provided can be used for targeted advertising and the site is owned by HPG, LLC, which is described on an assets data management site as “a provider of patient engagement services to pharmaceutical and biotechnology businesses through managed patient and caregiver networks in a variety of therapeutic areas.”

The site is a source of stories, but may be more important for prompting discussion about informed consent and how patient stories are used, as well as how to weigh the benefits of being able to share one’s story (and read stories by others) with the other uses to which these stories may be put. The site states openly at the outset that they are not a non-profit and it doesn’t hide these multiple purposes (nor is it difficult to track down the connection to HPG, LLC); however, they don’t lead with this, either.

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.

My Sister’s Keeper

“My Sister’s Keeper” is a fictional story written by Jodi Picoult. It revolves around the Fitzgerald family, whose lives are profoundly affected by their daughter Kate’s long-term battle with leukemia. In a unique ethical dilemma, the parents conceive another child, Anna, specifically to serve as a compatible donor for Kate. As Anna gets older, she becomes increasingly aware of her role in her sister’s medical procedures. At a certain point, Anna decides to sue her parents for medical emancipation, seeking control over her own body. The story follows the legal battle alongside a struggling family trying to make Kate’s life as good as possible. This combination brings into light the complexities of love, sacrifice, autonomy, and the implications of using one child to save another. This novel explores these issues through the perspective of every character, including the attorney. The mother’s perspective explores grief, strength, and the need to fight for one’s child’s life no matter what. The father’s experience shows an example of someone who wants so desperately for his daughter to live, but also wants to protect the autonomy of his other daughter. The brother’s perspective tells the story of a boy who feels neglected in a family focused on a cancer diagnosis. The two sister’s go back and forth in caring for each other, and it becomes clear through this dialogue that Anna is suing her parents at her sister’s request, as her sister is ready to die. And the attorney, who suffers from epilepsy, explains his support for young Anna, despite her parent’s anger, as he knows what it’s like to not have control over his own body. The combination of perspectives explores the moral issue of bodily autonomy as deeply complex and woven with people and choices to listen to. This novel could be used in classes on medical ethics, as it raises a complex story full of moral dilemmas surrounding medical decisions and familial relationships in the face of childhood illness. It prompts conversation surrounding parental authority, blurred lines between love and autonomy, and childhood cancer.

Specifically, this story shows how cancer can affect a family, touching each person so uniquely. Kate, after a whole life of fighting, was ready to let go, whereas her mother would do anything and everything to keep her alive. Anna was happy to donate blood and organs to her sister, but sued her parents to honor her sister’s wishes, even though she lost her parents’ trust. And the attorney gives an example of when it can be important to support and listen to a child, even when their parents don’t agree. This film highlights that cancer and organ donation are not straightforward issues, and sometimes a person’s wants are contrary to the common narrative.

This book is a longer read, and it is such a complex story, which makes it difficult to break apart for shorter sections, but there is a wonderful film adaptation that could be watched in a class period. The book and film are slightly different, but all of the relevant topics and questions remain. An interesting assignment could be having different people read different perspectives and discuss what their assumptions about the other characters would be after only reading from one point of view.

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.

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.

Never Let Me Go

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?