Advance planning for healthcare and research participation: law, ethics and practice
Bibliographic record
Abstract
This thesis focuses on advance planning for health-related matters, including medical care and participation in research. It brings interdisciplinary attention to the legal and ethical frameworks that govern how people can plan for future incapacity and investigates how the rights to plan ahead are acted upon and supported in practice. Dementia is a particular focus of this thesis as it is a leading cause of cognitive impairment among older people, and advance planning for incapacity is considered part of good dementia care. Advance care planning (ACP) can improve healthcare experiences and end-of-life outcomes, while advance research planning can help to support the appropriate inclusion of people with cognitive impairment in research studies. Papers 1–3 focus on advance planning for medical care, with attention to the under-examined role of lawyers in assisting older clients with ACP. Paper 1 provides a literature review and considers how collaboration between health and legal professionals can strengthen ACP. Paper 2 presents a framework for action to build connections between these typically “siloed” professions. Paper 3 presents findings from a survey of legal practitioners on their practices and experiences in advising clients on ACP. Lawyers perceive this activity as part of their professional role, but report gaps in their knowledge of health system policies and procedures relevant to ACP. These findings support the need for collaborative ACP strategies that involve the legal and health sectors. Papers 4–7 focus on advance research planning and the inclusion of older people with cognitive impairment in research studies. The under-representation of people with dementia in research limits the evidence base to inform advances in treatment and care for this population. The principles and processes that undergird ACP can be applied to planning for involvement in research activities during future periods of incapacity, allowing greater representation of people with dementia in research. Paper 4 examines the Australian ethical and legal context for inclusion of people with dementia in research. Papers 5–7 report on the results of surveys exploring the attitudes of older adults and researchers toward research involving people with dementia. Paper 5 reveals positive attitudes among older adults to involvement in a wide range of research activities in the event of future incapacity, and to making an advance research directive to document their preferences for future research participation. Papers 6 and 7 report on a national survey of Australian dementia researchers, revealing persistent ethical, legal and practical barriers to involving people who lack decisional capacity in research, but positive views on the benefits of advance research planning as a strategy to support inclusion. The thesis includes studies completed in Australia and Canada, two countries with ageing populations and similar health and legal systems. The work advances knowledge to inform strategies to build collaboration between the health and legal sectors, strengthen professional practices, enable older adults to act on their rights to plan for future incapacity and overcome barriers to research participation for people living with reduced decisional capacity.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.238 | 0.245 |
| Meta-epidemiology (narrow) | 0.001 | 0.002 |
| Meta-epidemiology (broad) | 0.003 | 0.002 |
| Bibliometrics | 0.003 | 0.004 |
| Science and technology studies | 0.018 | 0.133 |
| Scholarly communication | 0.037 | 0.030 |
| Open science | 0.005 | 0.035 |
| Research integrity | 0.032 | 0.041 |
| Insufficient payload (model declined to judge) | 0.007 | 0.004 |
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.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; the direct Gemma label and the distilled Codex classifier agree on what is shown here.
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".