Tag: open access

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.

Caregiver Stories

The Family Caregiver Alliance’s Caregiver Stories web page is a collection of personal narratives that shed light on the diverse experiences of individuals providing care to their loved ones. These stories capture the challenges, triumphs, and emotional journeys of caregiving across different situations and relationships. From spouses caring for partners with chronic illnesses to adult children looking after aging parents, each story offers a glimpse into the unique and often complex dynamics of being a caregiver. The narratives serve not only as a source of inspiration and empathy for those who might not be caregivers but also as a valuable resource for individuals seeking connection and understanding in their own caregiving journeys. This webpage addresses all different types of illnesses and caregiving dynamics, including Alzheimer’s, diabetes, cancer, autism, and so much more.

While there is no link to submit stories on the website, the stories seem to be provided by community members who are engaged with the family caregiver alliance. While they are urating the stories, there is quite a variety of types of stories, ranging from casual and blog-like to more formal articles. The communal aspect of this page allows the reader to search for what they’re looking for with keywords and categories.

One story provided is from a mother describing how she and her husband have cared for their daughter with complicated type one diabetes. Britani was a once-healthy young woman who, at 22, developed type 1 diabetes. Over the years since then, her health deteriorated, leading to unexplained and debilitating symptoms. Despite numerous visits to various medical institutions, their family was left without a clear diagnosis, and Britani’s condition continues to worsen. This narrative portrays the immense challenges faced by Britani’s caregivers, her parents, who juggle the responsibilities of caring for her while trying to maintain a life outside her health concerns. The toll on both Britani and her caregivers is evident, with hospitalizations, experimental treatments, and the constant struggle against physical and emotional pain. The story also touches on the financial strain, as the caregivers cannot afford to stay home full time and must continue working. Despite the hardships, their new granddaughter brings joy to their lives, too. Throughout peritoneal dialysis insulin shots, bathing, trouble sleeping, and more, Britani remains remarkably strong, facing each day with minimal complaints despite the unimaginable pain she endures. The caregivers express a deep love and willingness to sacrifice for Britani, highlighting the profound impact of chronic illness on both the patient and those who care for them.

Another story example is that of Lisa and her husband Richard. Their life, initially filled with love, family, and what Lisa describes as “vibrant Italian passion,” took a drastic turn in 1998 when Richard’s behavior and health began to change. Despite numerous attempts to find a diagnosis and solution, it wasn’t until a CT scan revealed the extent of Richard’s condition—his brain was shrinking, and a large mass was present. The couple faced the harsh reality of Early-Onset Alzheimer’s, and began attending classes and finding support from the Family Caregiver Alliance. The challenges escalated when their home caught fire, leading to the heartbreaking decision to place Richard in a facility dedicated to Alzheimer’s care. Lisa’s account is a raw and emotional portrayal of the toll this devastating disease took on their relationship and family. Richard’s passing eight months later left a profound void, and Lisa, in coping with overwhelming grief, turned to cooking as a form of self-care. Her book, “Good Grief Cooking,” is a resource she provides for those facing similar loss. Through her story, Lisa emphasizes the importance of seeking support, sharing experiences with other caregivers, and finding ways to navigate the complexities of grief.

The stories provided in the Caregiver Stories are a great resource for those who are currently caregivers to their loved ones, either looking to share their stories or hear stories from others. This website could be used in a classroom setting for students in healthcare looking to understand how to support and understand not just their patients, but the other people taking care of them.

Graphic perspectives on caring, aging and end-of-life

In this article, a writer and English professor reviews various graphic narrative depictions of aging including Joyce Farmer’s Special Exits, Roz Chast’s Can’t We Talk about Something More Pleasant?, and most prominently Nigel Baines’ Afloat: A Memoir about Mum, Dementia, and Trying Not to Drown. Venema summarizes each of these books’ plotlines and connections to their authors own lives, specifically as retellings of their parents’ experiences. She also explores the benefits of using comics and graphic narratives to tell end-of-life stories in complex, unconventional, temporally warped, and often nonlinear formats. Each of these books could be used as resources in class syllabi on aging, healthcare systems, and care from family and friend support systems, but this comprehensive review could be a useful introductory material for a graphic medicine course.

Living with Huntington’s Disease

This is a five-minute video narrated by a 46 year old woman who acts as an in-home caregiver for her father, who has Huntington’s disease, a terminal genetic disease that children have a 50% chance of inheriting from their parents. She describes the disease as “having Alzheimer’s, Parkinson’s, and ALS all together.” Panning from the bedroom to the kitchen, the video follows this woman throughout routine moments of taking care of her dad, such as getting him out of bed and feeding him. In between clips, statistics and factual information about Huntington’s are flashed on the screen. Recently, she found out she had the gene and is beginning to get symptoms herself, but is in a clinical trial for a drug. This is a very moving, emotionally impactful video that also provides a lot of basic information about what it is like to live with Huntington’s and take care of someone who has it. It is rare to find such a nuanced blend of the emotional and the informational, as well as a perspective of a person taking care of someone with the very same disease, just at different stages. It would be useful to play for discussion material in a class about genetic diseases or family members who act as caregivers or in a discussion about how personal narrative and statistical information can be combined to communicate a message. It could also be used as an example video in an assignment for students to create narratively infused informational interview videos about a certain disease.

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.

Meet Marleah: Testing positive for the BRCA2 gene at 25

Marleah’s health narrative comes from the CDC.gov website. She discovered she had the BRCA2 gene mutation at age 25. Marleah discusses her navigating the challenges of motherhood while considering surgery after completing her family. She chose to manage her breast cancer risk through frequent screenings and lifestyle choices rather than opting for preventive surgery. Inspired by her mother’s own battle with breast cancer and her own gene mutation discovery, she became a university professor specializing in hereditary cancer research. Her work focuses on understanding the emotional impact of genetic uncertainty and developing strategies to help individuals cope. The narrative highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches.

This narrative could be used to explore the intricate decisions patients face when managing a genetic disease, specifically a BRCA2 gene mutation. Marleah’s story highlights the complexity of decision-making in genetic disease management and underscores the importance of personalized approaches. As a mother, Marleah faced certain ethical dilemmas when it came to decisions about her own health. This story could also be useful for those who are forced to make similar decisions.

Jessica’s story: “It isn’t just dementia that’s a terminal diagnosis – life is”

Jessica delves into her experience grappling with the possibility of inheriting familial Alzheimer’s disease, a rare, inherited form of the condition. Jessica shares her decision-making process, including participation in observational research, contemplating genetic testing, and the emotional impact of receiving the test results. The story not only highlights the unique challenges faced by individuals with a genetic predisposition to dementia but also sheds light on the complex ethical and emotional considerations surrounding genetic testing. Jessica learns she does not carry the gene, leading to a mix of relief and survivor’s guilt. The narrative concludes with an insightful reflection on the importance of embracing life regardless of a terminal diagnosis and offers support to those facing similar decisions.

Students can analyze the emotional, ethical, and practical dimensions of genetic testing, exploring the author’s motivations, challenges, and the aftermath of receiving the results. The story prompts discussions on the broader implications of genetic testing, including family dynamics, reproductive choices, and coping with survivor’s guilt.

Mackenzie: My Faulty Gene

This narrative tells the story of Mackenzie, who, from a young age, was actively involved in raising awareness and support for Huntington’s Disease (HD) due to its prevalence in their family. Mackenzie’s mother, grandfather, and aunt had all been affected by HD, prompting a personal decision to undergo predictive genetic testing at the age of 18. Contrary to expectations, Mackenzie tests negative for the HD gene, leading to a profound shift in life plans and a reevaluation of personal goals. The narrative explores the complex emotional aftermath, including feelings of being lost and survivor’s guilt. Despite the challenges, Mackenzie discovers a renewed purpose in advocating for the HD community and gratitude in the knowledge gained through genetic testing.

Students can analyze the challenges and opportunities presented by genetic testing, exploring the impact of results on personal identity, life goals, and community engagement. The narrative also raises important ethical considerations surrounding predictive testing and the potential psychological effects on patients.

My Abortion is Not a Sad Story

Ebony Wiggins shares her personal experience of having an abortion at 22. She provides insights into the circumstances, decision-making process, and emotional aspects surrounding the event. Growing up in a politically aware household, the narrator emphasizes the importance of choice, destigmatizing abortion through storytelling. The narrative discusses the impact of restrictive abortion laws, particularly on women of color. This narrative can prompt discussions on individual autonomy and the influence of societal and political factors on reproductive health care. Wiggins’ story also shows the importance of diverse perspectives in understanding reproductive health issues. It serves as a case study for examining the intersectionality of reproductive rights and the potential impact of legislation on different demographic groups.

While teaching a fitness class, she had a massive heart attack

This is a news story recounting the experience of Ratona Harr, a 44 year old woman who had a heart attack in the midst of teaching a fitness class. It follows her from when symptoms first began, to when she called 911, to the hospital, to recovery. Including quotes from both Harr and her doctors as well as pictures of Harr and the tattoos she got after the incident, the article gives a personal account of what it is like to suffer a severe heart attack and then cope with recurring conditions over the next three years. It also describes the mental health struggles she faced after the fact, including her fears about going back to teaching. This would be a useful short reading material for med students to discuss the different ways that heart attacks present in men and women, as it describes a much more gradual onset of pain than we typically associate with the archetypal male heart attack. It could also be a helpful case study to integrate into a unit about what realistic long term recovery options may look like for a patient so they can sensitively inform them. While these lessons could be taught in other ways, this resource would be helpful because it gives the perspective of bystanders, healthcare providers, and the patient before, during, and after an emergency.