BackgroundThis article reports on the concept of “communicating prognostic uncertainty” which emerged from a mixed methods survey asking family members to rank their satisfaction in seven domains of hospital end-of-life care.MethodsOpen-ended questions were embedded within a previously validated survey asking family members about satisfaction with end-of-life care. The purpose was to understand, in the participants’ own words, the connection between their numerical rankings of satisfaction and the experience of care.ResultsOur study found that nearly half of all family members wanted more information about possible outcomes of care, including knowledge that the patient was “sick enough to die”. Prognostic uncertainty was often poorly communicated, if at all. Inappropriate techniques included information being cloaked in confusing euphemisms, providing unwanted false hope, and incongruence between message and the aggressive level of care being provided. In extreme cases, these techniques left a legacy of uncertainty and suspicion. Family members expressed an awareness of both the challenges and benefits of communicating prognostic uncertainty. Most importantly, respondents who acknowledged that they would have resisted (or did) knowing that the patient was sick enough to die also expressed a retrospective understanding that they would have liked, and benefitted, from more prognostic information that death was a possible or probable outcome of the patient’s admission. Family members who reported discussion of prognostic uncertainty also reported high levels of effective communication and satisfaction with care. They also reported long-term benefits of knowing the patient was sick enough to die.ConclusionWhile a patient who is sick enough to die may survive to discharge, foretelling with family members in potential end of life contexts facilitates the development of a shared and desired prognostic awareness that the patient is nearing end of life.

BackgroundThe goal of the study was to assess perceived level of satisfaction with end-of-life care, focusing on the last 48 hours of life.MethodsA previously validated instrument was used in a telephone survey with bereaved family members (n=90) of patients who died within an organization in British Columbia.ResultsBereaved family members had many unmet needs for information about the patient’s changing condition, the process of dying, how symptoms would be managed and what to do at the time of death. In addition, many bereaved relatives felt that the patient or resident had an unmet need for emotional support and that their own emotional needs were not addressed adequately. The last place of care had the most significant effect on all of these variables, with acute care and residential care having the most unmet needs. Hospice had the fewest unmet needs, followed by the palliative and the intensive care units.ConclusionsWe discuss these findings in relation to overall satisfaction with care, focus on individual, ethno-cultural and diversity issues, information and decision-making, symptom management and attending to the family. We conclude by offering possible practices address the end-of-life needs of patients and family members.

Background: End-of-life doulas are emerging as a potentially important new form of community-based caregiving in the global North, yet we know little about this form of care. The aim of our study was to solicit the perspective of key stakeholders and early innovators in community-based end-of-life care about the development and practices of end-of-life doulas. Methods: We conducted 22 semi-structured interviews with participants in four countries where end-of-life doulas are most active: Australia, Canada, the United States, and the United Kingdom. Findings: This article focuses on participants’ description of the end-of-life doula role and attendant practices, and our findings provide the first detailed taxonomy of the end-of-life doula role and specific services on the basis of the perspective of subject experts in four countries. We situate our findings within literature on the professionalization of caregiving, with particular attention to nomenclature, role flexibility and boundary blurring, and explicit versus tacit knowledge. We also discuss the importance of jurisdictional considerations as the end-of-life doula movement develops. Discussion: We speculate that the end-of-life doula role is potentially experiencing common developmental antecedents similar to other now-professionalized forms of caregiving. Our findings contribute substantial new information to the small body of empirical research about the end-of-life doula role and practices, provide critical firsthand insight as the movement develops, and are the first research to explore end-of-life doulas from a comparative international perspective.

This article applies a micro-meso-macro analytical framework to understand clinicians' experiences and perspectives of using patient-reported outcome and experience measures (PROMs and PREMs) in routine hospital-based palliative care. We structure our discussion through qualitative analysis of a design and implementation project for using an electronic tablet-based tool among hospital-based palliative clinicians to assess patients' and their family caregivers' quality of life concerns and experiences of care. Our analysis identified three categories of practice tensions shaping clinicians' use of PROMs and PREMs in routine care: tensions surrounding implementation, tensions in standardization and quantification, and tensions that arose from scope of practice concerns. Our findings highlight that clinicians necessarily work within the confluence of multiple system priorities, that navigating these priorities can result in irreducible practice tensions, and that awareness of these tensions is a critical consideration when integrating PROMs and PREMs into routine practice.