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Dying, dependency and death: Exploring palliative care access gaps for children

2024· preprint· en· W4392387688 on OpenAlexaffabout
Christina Lamb

Bibliographic record

VenueWellcome Open Research · 2024
Typepreprint
Languageen
FieldMedicine
TopicEthics and Legal Issues in Pediatric Healthcare
Canadian institutionsAthabasca UniversitySt. Michael's Hospital
FundersWellcome TrustWellcome
KeywordsPalliative careEnd-of-life careContext (archaeology)Meaning (existential)AutonomyMedicineLife expectancyPopulationPersonalismPsychologyNursingPolitical scienceLawHistoryPsychotherapist

Abstract

fetched live from OpenAlex

Death has become a medicalized event. As such, end-of-life care has become entrenched in an over-reliance on individual patient autonomy to guide ethical decision making. Subsequently, the process of dying and the event of death are not primarily valued as life events - that is, as life-affirming phases of living. Rather, dying and death are viewed through the lens of medical options of when and how to die versus why dying and death are meaningful. This presents a problem for addressing the pediatric palliative care access gap and the Global Common Good. Specifically, in the context of important life events, one of which is death, we need space to be dependent on our inter-personal relationships to make crucial life decisions that affect our well-being. Recognizing dependency and inter-personalism is particularly important for pediatric populations. Children are uniquely placed to draw on their families and caregivers to make affirming life decisions in end-of-life care. This is particularly challenging to do in the Canadian context when Specialized Pediatric Palliative Care is not equitably available but options such as assisted death may soon be. Importantly, the meaning of death and dying is largely unexplored for this population. To advance ethical care at the end-of-life, more emphasis needs to be placed on the meaning that end of life events hold for Canadian children. In this paper I will outline the relevance of dependency and inter-personalism to attend to dying and death as meaningful phases of living for Canadian children and in relation to the pediatric palliative care access gap, the Global Common Good and Global Health Bioethics.

Fetched live from OpenAlex and de-inverted. Abstracts are not stored in this database: the inverted indexes are 8.6 GB of the frame’s 9.3 GB of text, and the host has 13 GB free.

How this classification was reachedexpand

Full frame distilled prediction

Teacher imitation

Not calibrated prevalence, not ground truth. Human validation pending. Learned from the 10,348 direct Codex labels and 10,348 direct Gemma labels. Candidate is the union of thresholded teacher heads; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels or direct frontier model labels.

metaresearch head score (Codex)0.004
metaresearch head score (Gemma)0.001
Version: codex-gemma-dda1882f352aValidation status: machine_predicted_unvalidated
Candidate categoriesMeta-epidemiology (narrow), Scholarly communication, Open science, Research integrity
Consensus categoriesnone
DomainCandidate signal: none · Consensus signal: none
Study designCandidate signal: Observational · Consensus signal: none
GenreCandidate signal: Empirical · Consensus signal: Empirical
Teacher disagreement score0.323
Threshold uncertainty score1.000

Codex and Gemma teacher scores by category

CategoryCodexGemma
Metaresearch0.0040.001
Meta-epidemiology (narrow)0.0000.000
Meta-epidemiology (broad)0.0010.000
Bibliometrics0.0010.000
Science and technology studies0.0010.000
Scholarly communication0.0020.000
Open science0.0020.014
Research integrity0.0010.007
Insufficient payload (model declined to judge)0.0000.000

Machine scores (provisional)

The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.

Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.

Opus teacher head0.574
GPT teacher head0.572
Teacher spread0.002 · how far apart the two teachers sit on this one work
Validation statusscore_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from it

Classification

machine, unvalidated

Machine predicted; a candidate call from one teacher head, not a consensus.

Study designObservational
Domainnot available
GenreEmpirical

How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".

Quick stats

Citations1
Published2024
Admission routes2
Has abstractyes

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