Lisa Sweet1, Dimitrios Adamis2, David J Meagher3, Daniel Davis4, David C Currow5, Shirley H Bush6, Christopher Barnes7, Michael Hartwick8, Meera Agar9, Jessica Simon10, William Breitbart11, Neil MacDonald12, Peter G Lawlor13. 1. Division of Palliative Care, University of Ottawa, Ottawa, Ontario, Canada; Bruyère Research Institute, Ottawa, Ontario, Canada. 2. Research and Academic Institute of Athens, Athens, Greece. Electronic address: dimaadamis@yahoo.com. 3. Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, Ontario, Canada; Cognitive Impairment Research Group, Department of Psychiatry, Graduate Entry Medical School, University of Limerick, Limerick, Ireland. 4. Department of Public Health and Primary Care, University of Cambridge, Cambridge, United Kingdom. 5. Discipline of Palliative and Supportive Services, Bedford Park, South Australia, Australia; Flinders Centre for Clinical Change, Flinders University, Bedford Park, South Australia, Australia. 6. Division of Palliative Care, University of Ottawa, Ottawa, Ontario, Canada; Bruyère Research Institute, Ottawa, Ontario, Canada; Palliative Care Unit, Bruyère Continuing Care, Ottawa, Ontario, Canada. 7. Division of Palliative Care, University of Ottawa, Ottawa, Ontario, Canada; Palliative Care Unit, Bruyère Continuing Care, Ottawa, Ontario, Canada. 8. Division of Palliative Care, University of Ottawa, Ottawa, Ontario, Canada; Division of Critical Care, Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Critical Care Response Team, The Ottawa Hospital, Ottawa, Ontario, Canada. 9. Discipline of Palliative and Supportive Services, Bedford Park, South Australia, Australia; Department of Palliative Care, Braeside Hospital, HammondCare, Sydney, New South Wales, Australia; South West Sydney Clinical School, University of New South Wales, Sydney, New South Wales, Australia. 10. Division of Palliative Medicine, Department of Oncology and Department of Internal Medicine, University of Calgary, Calgary, Alberta, Canada. 11. Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York, USA; Department of Psychiatry, Weill Medical College of Cornell University, New York, New York, USA. 12. Department of Oncology, McGill University, Montreal, Quebec, Canada. 13. Division of Palliative Care, University of Ottawa, Ottawa, Ontario, Canada; Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, Ontario, Canada; Bruyère Research Institute, Ottawa, Ontario, Canada; Ottawa Hospital Research Institute, Ottawa, Ontario, Canada.
Abstract
CONTEXT: Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges. OBJECTIVES: Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PC patients. METHODS: Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines. RESULTS: Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models. CONCLUSION: Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC.
CONTEXT: Delirium occurs commonly in settings of palliative care (PC), in which patient vulnerability in the unique context of end-of-life care and delirium-associated impairment of decision-making capacity may together present many ethical challenges. OBJECTIVES: Based on deliberations at the Studies to Understand Delirium in Palliative Care Settings (SUNDIPS) meeting and an associated literature review, this article discusses ethical issues central to the conduct of research on delirious PCpatients. METHODS: Together with an analysis of the ethical deliberations at the SUNDIPS meeting, we conducted a narrative literature review by key words searching of relevant databases and a subsequent hand search of initially identified articles. We also reviewed statements of relevance to delirium research in major national and international ethics guidelines. RESULTS: Key issues identified include the inclusion of PC patients in delirium research, capacity determination, and the mandate to respect patient autonomy and ensure maintenance of patient dignity. Proposed solutions include designing informed consent statements that are clear, concise, and free of complex phraseology; use of concise, yet accurate, capacity assessment instruments with a minimally burdensome schedule; and use of PC friendly consent models, such as facilitated, deferred, experienced, advance, and proxy models. CONCLUSION:Delirium research in PC patients must meet the common standards for such research in any setting. Certain features unique to PC establish a need for extra diligence in meeting these standards and the employment of assessments, consent procedures, and patient-family interactions that are clearly grounded on the tenets of PC.
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