An internationally known advocate in the eating disorder community in Australia sent me information about a webinar which takes place on June 12, 2024. It is entitled, “ “Holding Hope—Exploring Compassionate & Holistic Care Pathways for Longstanding Eating Disorders”.” It is being presented by the National Eating Disorders Collaboration in conjunction with Australia’s Commonwealth Department of Health & Aged Care.
The program is ostensibly about: “This discussion paper explores the multifaceted challenges and ethical complexities of palliative care for people experiencing longstanding eating disorders. It summarises and synthesises lived experience, research and clinical expertise to advocate for the development of palliative care guidelines for longstanding eating disorders.”
“Holding Hope addresses the complex landscape of longstanding eating disorders within the context of palliative care, emphasising compassionate care pathways (as distinct from end-of-life considerations or voluntary assisted dying). While recognising the ongoing discourse surrounding clinical characterisation of eating disorder stage and prognosis, this paper places its emphasis on advocating for compassionate care, primarily through palliative approaches, irrespective of prognosis.” [emphasis added]
The first most obvious and puzzling inconsistency was that the title of the webinar contradicted its explanatory purpose. The title specifically uses the phrase, “Longstanding Eating Disorders.” But then, the explanation uses the phrase, “irrespective of prognosis.”
I understand that “Longstanding Eating Disorders” is simply another derivation for “Severe and Enduring” the phrase more commonly used here in the Republic. Severe and Enduring is certainly a prognosis. And so, this conundrum required further contemplation.
Irrespective of prognosis? To make sure I read and understood the highlighted portion of the above paragraph correctly, I researched the definition for both “irrespective” and “prognosis.”
The most common definition of irrespective was: “without considering; not needing to allow for.”
The most common definition of prognosis was: “the prospect of recovery as anticipated from the usual course of disease or peculiarities of the case.”
So, the webinar is emphasizing compassionate care, through the lens of palliative care without considering the severity and endurance of the eating disorder? Or how advanced the eating disorder is? Or the unique needs of an individual patient? And doesn’t that directly contradict the title of what this webinar is supposed to be about?
Holding Hope(lessness) then states, “It is important to dispel the common misconception that palliative care is synonymous with end-of-life care. Rather, it embodies a comprehensive approach designed to enhance overall well-being and quality of life for individuals navigating the complex interface of physical and mental health challenges due to the impacts of longstanding eating disorders.”
So, me, not being the sharpest knife in the drawer, researched the definition of “palliative care.” The most common definition and/or description was along the lines of: “Palliative care is specialized medical care for people living with a serious illness, such as cancer or heart failure. Patients in palliative care may receive medical care for their symptoms, or palliative care, along with treatment intended to cure their serious illness. Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family.”
But, there is another part to the definition. That part of the definition includes, “Palliative care refers to relieving the symptoms of an incurable medical condition.” [emphasis added]
An incurable medical condition. Have eating disorders ever been characterized as an “incurable medical condition?” For that matter, have eating disorders ever been characterized primarily as a medical condition period?
And yet, our friends at “Holding Hopelessness” seemingly want to:
- Disregard that eating disorders are not currently classified as primarily a medical condition;
- Disregard the question of whether eating disorders can be an incurable medical condition,
- Disregard all medically and scientifically based knowledge on the topic and;
- Disregard any and all prognosis altogether.
Or perhaps “Holding Hopelessness” want to frame the issues to coincide with their limited narrative and the belief system of a few persons.
Then again, perhaps I am the loon looking at “Holding Hopelessness” through the lens of clown show binoculars. Then, I found a 2004 report entitled, Survival After Enrollment in an Australian Palliative Care Program. That report can be found here:
https://www.jpsmjournal.com/article/S0885-3924(03)00534-7/fulltext
This Report included the following information and statistics:
“We analyzed the survival of 1138 patients enrolled over a 30-month period.”
“The mean age was 70.1 years and 55% of the patients were male.”
“The most common cancers were lung (19.1%), colorectal (13.4%) and prostate (5.8%), with nonmalignant disease accounting for 5.6% of all patients.”
“The median length of survival was 54 days, with 9.3% of the patients dying within 7 days and 16.96% of patients living longer than six months.”
Another more recent report in Australia reported the following:
“In 2021–22, almost 3 in 5 (56% or 53,000) palliative care-related hospitalisations ended with the patient dying in hospital – 67% for primary palliative care hospitalisations (69% in public hospitals and 50% in private hospitals) and 43% for other palliative care hospitalisations (41% in public hospitals and 54% in private hospitals).
In 2021–22, almost 2 in 3 (63%) of all people who died in hospital had received palliative care during their final hospitalisation – 41% for primary palliative care and 22% for other palliative care. This proportion was higher in patients with a principal diagnosis of cancer than non-cancer diagnosis.”
These are not my numbers. These are from two comprehensive Australian reports. These numbers contradict “Holding Hopelessness” statement, “It is important to dispel the common misconception that palliative care is synonymous with end-of-life care.”
In this case, the alleged “misconception” seems to be based on numbers, statistics, facts, reason, logic and authoritative reports. With this being the case, are we right to presume “Holding Hopelessness” intends to disregard all of the above attributes and characteristics, ignore medical and scientific research and completely disregard the most recent comprehensive report issued on this topic which was co-authored by twelve (12) reputable research professionals?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11062513/
Just so that it can perpetuate its own narrative and join the ranks of those who place great emphasis on pronouns, and who omit the letter “e” in ob*sity and who exclude medical and scientific knowledge and research so that they may pursue the most popular “ism” of the week.
Good Lord. Holding Hopelessness … your ticket to the Clown Show Convention is waiting for you at the “Will Call” window. The Militant Fat Activists will show you to your seat.
Registration for the event may be found here:
https://butterfly-org-au.zoom.us/webinar/register/WN_IV7bpq1SSy2LbQ940ct0Pw#/registration
A DAD'S JOURNEY WITH EATING DISORDERS 