BMC palliative care
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BMC palliative care · Jan 2014
Voluntary stopping of eating and drinking at the end of life - a 'systematic search and review' giving insight into an option of hastening death in capacitated adults at the end of life.
The terminally ill person's autonomy and control are important in preserving the quality of life in situations of unbearable suffering. Voluntary stopping of eating and drinking (VSED) at the end of life has been discussed over the past 20 years as one possibility of hastening death. This article presents a 'systematic search and review' of published literature concerned with VSED as an option of hastening death at the end of life by adults with decision-making capacity. ⋯ The included articles provide marginal insight into VSED for hastening death. Research is needed in the field of theory-building and should be based on qualitative studies from different perspectives (patient, family members, and healthcare workers) about physiological processes during VSED, and about the prevalence and magnitude of VSED. Based on these findings supportive care interventions for patients and family members and recommendations for healthcare staff should be developed and tested.
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BMC palliative care · Jan 2014
What a wish to die can mean: reasons, meanings and functions of wishes to die, reported from 30 qualitative case studies of terminally ill cancer patients in palliative care.
Despite research efforts over recent decades to deepen our understanding of why some terminally ill patients express a wish to die (WTD), there is broad consensus that we need more detailed knowledge about the factors that might influence such a wish. The objective of this study is to explore the different possible motivations and explanations of patients who express or experience a WTD. ⋯ The distinction between reasons, meanings and functions allows for a more detailed understanding of the motivation for the WTD statements of cancer patients in palliative care situations. Better understanding is crucial to support patients and their relatives in end-of-life care and decision making. More research is required to investigate the types of motivations for WTD statements, also among non-cancer patients.
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BMC palliative care · Jan 2014
Initiating decision-making conversations in palliative care: an ethnographic discourse analysis.
Conversations about end-of-life care remain challenging for health care providers. The tendency to delay conversations about care options represents a barrier that impedes the ability of terminally-ill patients to participate in decision-making. Family physicians with a palliative care practice are often responsible for discussing end-of-life care preferences with patients, yet there is a paucity of research directly observing these interactions. In this study, we sought to explore how patients and family physicians initiated decision-making conversations in the context of a community hospital-based palliative care service. ⋯ Decision-making conversations and the initiation thereof were framed by the organization of care and the referral process prior to initial encounters. While symptom management was taken for granted as part of health care professionals' expected role, engaging in decisions regarding preparation for death implicitly remained under patients' control. This work makes important clinical contributions by exposing the rhetorical function of family physicians' discourse when introducing palliative care decisions.
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BMC palliative care · Jan 2014
Towards a standardised approach for evaluating guidelines and guidance documents on palliative sedation: study protocol.
Sedation in palliative care has received growing attention in recent years; and so have guidelines, position statements, and related literature that provide recommendations for its practice. Yet little is known collectively about the content, scope and methodological quality of these materials. According to research, there are large variations in palliative sedation practice, depending on the definition and methodology used. However, a standardised approach to comparing and contrasting related documents, across countries, associations and governmental bodies is lacking. This paper reports on a protocol designed to enable thorough and systematic comparison of guidelines and guidance documents on palliative sedation. ⋯ We have together developed a comprehensive checklist in a scientifically rigorous manner to allow standardised and systematic comparison. The protocol is applicable to all guidelines on palliative sedation, and the approach will contribute to rigorous and systematic comparison of international guidelines on any challenging topic such as this. Results from the study will provide valuable insights into common core elements and differences between the selected guidelines, and the extent to which recommendations are derived from, or match those in the EAPC framework. The outcomes of the study will be disseminated via peer-reviewed journals and directly to appropriate audiences.
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BMC palliative care · Jan 2014
Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter?
Improving end-of-life care is an important international issue. Recently Nova Scotia researchers conducted a mortality follow-back survey to provide a population-based description of care provided to adults during their last 30 days of life as perceived by knowledgeable bereaved family members. Here we describe the relationship between the location where the decedent received the majority of care during their last 30 days and the informant's perception of the extent of unmet need, as defined by multiple domains of patient-focused, family-centred care. ⋯ Bereaved informants were generally highly satisfied with the decedent's care during their last 30 days but variations were evident. Overall, no one location stood out as exceptionally different in terms of perceived unmet need within each of the patient-focused, family-centred care domains. Communication in various forms and family emotional and spiritual support were consistently viewed as lacking in all locations and identified as targeted areas for impacting quality care at end of life.