Family members’ perceptions of end-of-life care across diverse locations of care

Background: The goal of the study was to assess perceived level of satisfaction with end-of-life care, focusing on the last 48 hours of life. Methods: A 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. Results: Bereaved 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. Conclusions: We 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

Communicating prognostic uncertainty in potential end-of-life contexts: experiences of family members

Background: This 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. Methods: Open-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. Results: Our 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. Conclusion: While 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

Relational use of an electronic quality of life and practice support system in hospital palliative consult care: a pilot study

Objectives: This study is part of an overarching research initiative on the development and integration of an electronic Quality of Life and Practice Support System (QPSS) that uses patient-reported outcome and experience measures in clinical practice. The current study focused on palliative nurse consultants trialing the QPSS with older hospitalized adults receiving acute care. The primary aim of the study was to better understand consultants’ and patients’ experiences and perspectives of use. Method: The project involved two nurse specialists within a larger palliative outreach consult team (POCT) and consenting older adult patients (age 55+) in a large tertiary acute care hospital in western Canada. User-centered design of the QPSS was informed by three focus groups with the entire POCT team, and implementation was evaluated by direct observation as well as interviews with the POCT nurses and three patients. Thematic analysis of interviews and field notes was informed by theoretical perspectives from social sciences. Result: Over 9 weeks, the POCT nurses used the QPSS at least once with 20 patients, for a total of 47 administrations. The nurses most often assisted patients in using the QPSS. Participants referenced three primary benefits of relational use: enhanced communication, strengthened therapeutic relations, and cocreation of new insights about quality of life and care experiences. The nurses also reported increased visibility of quality of life concerns and positive development as relational care providers. Significance of results: Participants expressed that QPSS use positively influenced relations of care and enhanced practices consistent with person-centered care. Results also indicate that electronic assessment systems may, in some instances, function as actor-objects enabling new knowledge and relations of care rather than merely as a neutral technological platform. This is the first study to examine hospital palliative consult clinicians’ use of a tablet-based system for routine collection of patient-reported outcome and experience measures

Effectiveness of a grief intervention for caregivers of people with dementia

In this article, we report on the structure and effectiveness of a grief management coaching intervention with caregivers of individuals with dementia. The intervention was informed by Marwit and Meuser’s Caregiver Grief Model and considered levels of grief, sense of empowerment, coping, and resilience using five methods of delivery. Results indicate that the intervention had significant positive effects on caregivers’ levels of grief and increased their levels of empowerment, coping, and resilience. The intervention was found to be effective across caregivers’ characteristics as well as across five delivery modalities. Through description of this intervention, as well as outcome, this research contributes to the body of knowledge about caregivers’ disenfranchised grief and ways to effectively address it

Family Members\u27 Perceptions Of End-Of-Life Care Across Diverse Locations Of Care

Background The goal of the study was to assess perceived level of satisfaction with end-of-life care, focusing on the last 48 hours of life. Methods A 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. Results Bereaved 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. Conclusions We 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

What is the cultural value of dying in an era of assisted dying?

Assisted dying is now a lawful and integral component of many societies ‘death system’, orienting individual and collective encounters with death and dying. While only a very small number of people living with terminal illness in these societies will opt for an assisted death, the choice, nevertheless, exists for those who satisfy the legal criteria. Theoretically, in these jurisdictions, this turns dying into an optional part of the human life cycle; a final phase of life that, until now, seemed a universal feature of life except in instances of sudden death. As anthropologists specialising in death and dying, we pose the question of how the various cultural scripts that have sought to give meaning to dying in post-industrial Western societies since the mid-20th century might be affected by the advent of assisted dying. We begin by building on both medical and social science literature to construct a working definition of ‘dying’. We then identify four dominant cultural scripts: psychological growth, preparation for death, the suffering experience and the caring experience. After outlining each script, we discuss how it may (or may not) be affected by the increase in assisted dying legislation. We propose that it is the ‘caring’ script; the notion of affective, intergenerational bonds created through the experience of caring for people specifically in the last few months or weeks of their life, which are likely to be most affected. However, we find that access to these cultural scripts is already limited because of the widespread reluctance to recognise and name ‘dying’, and the challenges of doing so. Consequently, the various cultural scripts we identify are negated not by the increase in assisted dying, but rather by a combination of medical advances and institutional orthodoxies which limit opportunity for people to experience themselves, or others, as ‘dying’

Water balance and chemical denudation in the unglaciated Fugleberget basin (SW Spitsbergen)

This paper gives the results of investigations carried out in the Fugleberget basin which lies on the northern shore of the Hornsund Fiord, in the unglaciated region of raised sea terraces and on the slopes of the Fugleberget (569 m a.s.l.) and the Ariekammen (511 m a.s.l.). The investigations were carried out between 23 July, 1979 and 4 September, 1980, including the polar night. The Fugleberget basin represents well the area of sea terraces and coastal mountains uncovered with glacier and occupying large areas in West Spitsbergen. These areas are characterized by the presence of permafrost. The aim of investigations was to determine such fluvial processes as the duration of the hydrological period, the manner of water supply to the basin and an attempt to define the elements of the water balance. In addition studies were made on hydrological processes, particulary changes in the chemical composition of water, and the magnitude of denudation determined

Organizing end of life in hospital palliative care: a Canadian example

Hospitals remain the most common location of death in a significant number of countries, and specialist palliative care is positioned as a crucial resource for improving hospital care for those nearing end of life. Little is known, however, about a substantive aspect of this work: how hospital palliative clinicians anticipate and organize a patient's dying trajectory. In this paper I draw from a larger original ethnographic research study of palliative specialists in two Canadian hospitals. Abductive analysis resulted in framing their work as affective labour, both reflecting and re-creating a larger affective economy shaping the affective states of everyone involved in the provision and uptake of care. I articulate six analytically ideal outcomes of clinicians' affective labour that organize end of life, including: 1) proactive co-authorship of disease trajectory; 2) mutual acknowledgement of a dying trajectory; 3) naturalizing direction and outcome of care, 4) ensuring a minimum of social disruption, 5) identification as compassionate and efficient care providers, and 6) increased specialist knowledge and interventions. In so doing, clinicians' practices become understandable as labour to meet a diversity of – at times conflicting – individual, societal, and organizational mandates that necessarily include, but extend well beyond, the patient and her immediate social network. This is the first study to consider hospital palliative care as an affective economy, and presents a theoretically innovative and empirically grounded model to advance new ways of conceptualizing hospital palliative care. I conclude by considering how this model, and the unique insights it affords, can inform the future development of end of life care in hospital settings

Surface Decorations of Al-Cu-Fe and Al-Cu-Co Single Quasicrystals

We studied surface decorations of faceted icosahedral Al Cu Fe and decagonal Al Cu Co single quasicrystals by the scanning electron microscopy using primary and secondary electrons. Both types of single quasicrystals exhibited decorations on their facets, however the character of the decorations was totally di erent. Three kinds of decorations has been developed. On icosahedral Al60Cu26Fe14 quasicrystals we found three kinds of decorations: cellular, cavity type and fractal-like. There was no evident di erence in chemical composition between the inner dodecahedra and the decorations of all types. Surface decorations found on decagonal Al73:5Cu17:5Co9 quasicrystals formed a kind of irregular dendritic stars on the separate bright islands

Characteristics of the polar hydrological year 1979/1980 in the basin of the Warenskiold Glacier, SW Spitsbergen

This paper contains thsults of hydrological and hydrochemical investigations carried out in the basin of Werenskiold Glacier against the background of determining climate elements. It also gives chosen elements of the water balance and mass balance determined from year-long investigations of the polar hydrological year 1979-1980