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"#Let'sTalkAboutDeath" Storytelling Event in Louisville, KY.

This storytelling event captured 7 diverse perspectives on death.

Photo of Justin Magnuson, MA, LMT
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The following death related stories were collected on May 31, 2016, in the upstairs of a small pub. The group shared short introductions before partnering up to interview each other, from the introductions it was clear that everyone had a perspective that brought them to the evening festivities. The following is hopefully a close interpretation of the interviews:

Interview of Stacy Ledington, Elder Law of Louisville,by Debbie Tuggle, retired ICU nurse

Stacy shared the story of the first client she had when she went into elder law. A friend of a friend was referred to her to complete some legal paperwork. The client was a 50 year-old Multiple Sclerosis patient who was losing the use of her hands and was afraid she was losing the ability to speak. At the meeting was the client's mother and two girlfriends, the client was completing the legal process to withdrawal food and receive hydration only. Stacy felt honored and responsible to orchestrate the process, but was shocked how long it took for a person to die once food was stopped. She recalled sending a sympathy card before the woman passed because she had expected her death to happen faster. 

Interview of Debbie Tuggle by Stacy Ledington

Debbie recalled the story of a 40 year-old ICU patient who became incapacitated followed being hit by an automobile and despite multiple organ failures was kept alive by his mother who was not prepared to let him die. The patient  lived for six weeks despite protests to, "pull the plug," as his body slowly shut down. Initially he retained cognitive function, but due to diminished lung capacity became delirious, ultimately suffering brain failure, and over the course of his dying, lost digits. His death caused financial devastation to his mother, who in her 60s was not prepared for her own future. The situation caused strife with the nurses who were torn how to make the best choice for both of them.

Interview of Ellen Green, Hosparus Director of Grief Counseling, by JJ Sicotte, filmmaker 

Ellen relayed a story to JJ about the importance of family in supporting each other through life's phases. When she was pregnant with her daughter she experienced a lot of distress that her husband could often not do anything to help. During these times her mother would stand by her bedside and hold a cold wash cloth to her forehead to comfort her. Her daughter had diabetes as she grew up and her mother often helped look after her. Later in life Ellen's mother developed ALS following a hospital stay. Ellen observed her daughter holding a cold wash cloth to her forehead as her mother had done while she was pregnant. Ellen commented on how the process fascinated her, that it instilled in her the circle of life and how death isn't the end of life. 

Interview of JJ Sicotte, by Ellen Green

JJ shared the story of how he came to work on the documentary about the visions the dying often have, Death is but a Dream. His project is inspired by his grandmother who had a near death experience in 1981, the intention of the film is to show that death visions are healing and comforting for the dying and their loved ones. 

The documentary captures interviews of a hospice physician in Buffalo who is doing clinical research on end-of-life dreams and visions. The film is not trying to prove the visions occur or how, but that they are healing. The physician has completed 1,400 interviews, the themes that are currently emerging are they dying seeing relatives they love, who have passed, pets, and messages of hope. 

A Conversation between Annette Mtangi and Sherron Alexander (both nurses with ICU background)

Annette and Sherron's interview emerged as a conversation between peers with years of experience working with families in dire medical conditions. Three themes emerged from the conversation; the dichotomy of waiting for palliative care too early versus too late, the ethical responsibility of informed consent, and the importance of changing perspectives regarding palliative care.

There is a dichotomy that exists between introducing the withdrawal of care too early, especially for younger patients, and waiting too long. It is necessary to listen to each patient's story and have individualized care.

It is the ethical responsibility of  healthcare workers to inform patients regarding the risks and benefits of all medical options.  They acknowledged it is difficult to deliver bad news and doctors (all healthcare workers) have to let go, that treatment is sometimes futile, and need to say so. Also, families have the right to question the authority of the attending physician. 

Vital to theses changes is education of the public regarding the value and place of palliative medicine, which is probably more effective than educating healthcare personnel. The purpose of which is weighing the quality versus prolonging life. 

Interview of Kel McBride, Clearly Depart, by Lori Earnshaw, Hosparus Palliative Care Physician 

Kel's conversation encapsulated the last 25 'bonus' years of her life that lead her from work as a sexual health advocate, working with marginalized populations, to becoming a "Certified End-of-Life Specialist." The loss of 3 partners in the late 80s to AIDs made her  aware of her own mortality and gave her a 2nd chance to make the most of her life. 

Besides her own brushes with mortality she was involved in end-of-life decisions for her grandmother that was at odds with her father. Her father's difference of opinion put her grandmother's care on a different course, so, Kel advocated for her and found documentation indicating different choices than the decisions her father was making. Despite tension over this disagreement, now they are good. 

Following work in sex education with Planned Parenthood, Kel suffered some health setbacks due to multiple concussions and sought to work for herself. She founded Clearly Depart in September to help individuals make informed end-of-life decisions and plans. She is also working on her certification in thantology and collaborating with Justin and Deb to host a "Before I Die" conference in the fall of 2016. 

Following the storytelling and edits the group reconvened to share about the experience. The overall consensus was that it was a positive experience, one member sharing that she hoped we could continue to host similar events. 

What is a provocation or insight that might inspire others during this challenge?

How can the healthcare system honor such a diverse set of needs?

Tell us about your work experience:

The participants were from a mixture of backgrounds; healthcare, hospice and palliative care, elder law, film making, and end-of-life consulting.

If you participated in an End of Life Storytelling Event, tell us which Chapter or city you came from:

Louisville, KY

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