Journal of palliative medicine
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Obtaining informed consent is a key protection that should be afforded universally to people using health services and the basis around which any participation in clinical trials is built. Randomized controlled effectiveness studies are necessary to answer key questions in hospice and palliative care, in order to help systematically improve the quality of care. In order to be properly generalizable, such trials need to have broad inclusion criteria to reflect the population most likely to be affected by the condition. ⋯ This article outlines five different ethically valid consent approaches and discusses their applicability to hospice and palliative care research trials. These include: consent by the patient (at the time of enrolment, in advance of the study, or delayed until after the study has commenced); a proxy (or legally authorised representative); or a consent waiver. Increased use of the less traditional modes of informed consent may lead to greater participation rates in hospice and palliative care trials, thereby improving the evidence base more rapidly in part by better reflecting the population served and hence improving generalizability.
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Meta Analysis
Pediatric palliative care in Canada and the United States: a qualitative metasummary of the needs of patients and families.
Qualitative research is becoming more common in pediatric palliative care and end-of-life care. The present article systematically reviews and summarizes qualitative and survey-based research on pediatric palliative and end-of-life care pertaining to the needs of patients and their families. ⋯ The results of this metasummary highlight the needs of patients and families to be taken into consideration in the creation of high-quality pediatric palliative and end-of-life care services and guidelines.
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Standardized approaches for assessing and classifying cancer pain are required to improve treatment of patients with complex pain profiles. The Edmonton Classification System for Cancer Pain (ECS-CP) offers a starting point for the evolution of a standardized international classification system for cancer pain and was introduced into multisite research initiatives of the European Palliative Care Research Collaborative (EPCRC). ⋯ The ECS-CP is a clinically relevant systematic framework, which is able to detect differences in salient pain classification features across diverse settings and countries. Further validation studies need to be conducted in varied advanced cancer and palliative care settings to advance the development of the ECS-CP toward an internationally recognized pain classification system.