Birgit H. Rasmussen

Nurses' work in a hospice and in an oncological unit in Sweden.

ABSTRACT This paper presents the results of a work-sampling study aimed at describing and comparing the activities of nurses at a freestanding in-patient hospice and a hospital oncological unit. Data suggests that although patient care at both sites is structured by organizational routines, the content and quantity of the nurses’ physical and emotional labor differed markedly. Hospice nurses spend significantly more of their working time with patients and/or relatives (37%) than the oncological nurses (21%). When they are with patients the nurses in both settings are most often performing a physical activity such as helping patients with their daily activities in the hospice, and helping patients with needs in relation to investigations and treatment in the oncological unit. [Article copies available for a fee from The Haworth Document Delivery Service: 1-800-342-9678. E-mail address: getinfo@haworthpressinc.com  ]

Patients' initial steps to cancer diagnosis in Denmark, England and Sweden: What can a qualitative, cross-country comparison of narrative interviews tell us about potentially modifiable factors?

Objectives To illuminate patterns observed in International Cancer Benchmarking Programme studies by extending understanding of the various influences on presentation and referral with cancer symptoms. Design Cross-country comparison of Denmark, England and Sweden with qualitative analysis of in-depth interview accounts of the prediagnostic process in lung or bowel cancer. Participants 155 women and men, aged between 35 and 86 years old, diagnosed with lung or bowel cancer in 6 months before interview. Setting Participants recruited through primary and secondary care, social media and word of mouth. Interviews collected by social scientists or nurse researchers during 2015, mainly in participants’ homes. Results Participants reported difficulties in interpreting diffuse bodily sensations and symptoms and deciding when to consult. There were examples of swift referrals by primary care professionals in all three countries. In all countries, participants described difficulty deciding if and when to consult, highlighting concerns about access to general practitioner appointments and overstretched primary care services, although this appears less prominent in the Swedish data. It was not unusual for there to be more than one consultation before referral and we noted two distinct patterns of repeated consultation: (1) situations where the participant left the primary care consultation with a plan of action about what should happen next; (2) participants were unclear about under which conditions to return to the doctors. This second pattern sometimes extended over many weeks during which patients described uncertainty, and sometimes frustration, about if and when they should return and whether there were any other feasible investigations. The latter pattern appeared more evident in the interviews in England and Denmark than Sweden. Conclusion We suggest that if clear action plans, as part of safety netting, were routinely used in primary care consultations then uncertainty, false reassurance and the inefficiency and distress of multiple consultations could be reduced.

Being disconnected from life : meanings of existential loneliness as narrated by frail older people

ABSTRACT Objectives: This study illuminated the meanings of existential loneliness (EL) as narrated by frail older people. Method: Data were collected through individual narrative interviews with 23 people 76–101 years old receiving long-term care and services. A phenomenological hermeneutical analysis was performed, including a naïve reading and two structural analyses as a basis for a comprehensive understanding of EL. Result: Four themes were identified related to meanings of EL: (1) being trapped in a frail and deteriorating body; (2) being met with indifference; (3) having nobody to share life with; and (4) lacking purpose and meaning. These intertwined themes were synthesized into a comprehensive understanding of EL as ‘being disconnected from life’. Conclusion: Illness and physical limitation affects access to the world. When being met with indifference and being unable to share ones thoughts and experiences of life with others, a sense of worthlessness is reinforced, triggering an experience of meaninglessness and EL, i.e. disconnection from life. It is urgent to develop support strategies that can be used by health care professionals to address older people in vulnerable situations, thereby facilitating connectedness.

Public awareness of palliative care in Sweden

Objective: The aim of this study was to investigate the awareness of palliative care (PC) in a general Swedish population. Design: We developed an e-survey based on a similar study conducted in Northern Ireland, consisting of 10 questions. Closed questions were primarily analyzed using descriptive statistics. Open questions were subject to inductive qualitative analysis. Subjects: The study utilized a population sample of 7684 persons aged 18–66, of which 2020 responded, stratified by gender, age and region. Results: Most participants reported ‘no’ (n = 827, 41%) or ‘some’ (n = 863, 43%) awareness of PC. Being female or older were associated with higher levels of awareness, as was a university-level education, working in a healthcare setting and having a friend or family member receiving PC. Most common sources of knowledge were the media, close friends and relatives receiving PC, as well as working in a healthcare setting. Aims of PC were most frequently identified as ‘care before death’, ‘pain relief’, ‘dignity’ and a ‘peaceful death’. The preferred place of care and death was one’s own home. The main barriers to raising awareness about PC were fear, shame and taboo, along with perceived lack of information and/or personal relevance. The term ‘palliative care’ was said to be unfamiliar by many. A number of strategies to enhance awareness and access to PC were suggested, largely reflecting the previously identified barriers. Conclusions: This survey found limited awareness of palliative care in an adult sample of the Swedish general public ≤ 66 years, and points to a more widespread disempowerment surrounding end-of-life issues.

Quality of care for the dying across different levels of palliative care development: A population-based cohort study:

Background: There is a lack of knowledge about how the provision and availability of specialized palliative care relates to the quality of dying in hospital and community-based settings. Aim: We aimed to explore the quality of care during last week of life in relation to different levels of palliative care development. Design: We investigated access to palliative care in Southern Sweden, where one region offers palliative care in accordance with European Association for Palliative Care guidelines for capacity, and the other region offers less developed palliative care. Data on approximately 12,000 deaths during 2015 were collected from the Swedish Register of Palliative Care. The quality of care was investigated by region, and was measured in terms of assessment of oral health and of pain, and end-of-life conversation, companionship at death and artificial nutrition/fluid in the last 24 h. Results: The overall quality of care during last week of life was not consistently better in the region with fully developed palliative care compared with the less developed region. In fact, for patients dying in hospitals and community-based settings, the quality was statistically significantly better in the less developed region. The small proportion of patients who had access to specialized palliative care had superior quality of care during the last week of life as compared to patients in other care settings. Conclusion: The capacity of specialized palliative care does not per se influence the quality of care during the last week of life for patients in other settings.

How wide is the Goldilocks Zone in your health system

In astrophysics, the ‘Goldilocks Zone’ describes the circumstellar habitable zone, in which planets, sufficiently similar to Earth, could support human life. The children’s story of Goldilocks and the Three Bears, one of the most popular fairy tales in the English language, uses this metaphor to describe conditions for life that are neither too hot nor too cold and neither too close to the sun nor too far from its warmth. We propose that the ‘Goldilocks Zone’ also offers an apt metaphor for the struggle that people face when deciding if and when to consult a health care provider with a possible health problem. Drawing on decades of research in Denmark, England and Sweden on people’s accounts of their experiences of accessing health care, this essay considers the ambivalence of health care seeking that individuals face in identifying when it is ‘just right’ to consult a general practitioner and the steps that health systems and individual clinicians might take to widen the zone.

Conversations about Death and Dying with Older People: An Ethnographic Study in Nursing Homes

Nursing homes are often places where older persons “come to die.” Despite this, death and dying are seldom articulated or talked about. The aim of this study was to explore assistant nurses’ experiences of conversations about death and dying with nursing home residents. This study is part of an implementation project through a knowledge-based educational intervention based on palliative care principles. An ethnographic study design was applied in seven nursing homes, where eight assistant nurses were interviewed and followed in their daily assignments through participant observations. The assistant nurses stated that they had the knowledge and tools to conduct such conversations, even though they lacked the time and felt that emotional strain could be a hinder for conversations about death and dying. The assistant nurses used the strategies of distracting, comforting, and disregarding either when they perceived that residents’ reflections on death and dying were part of their illness and disease or when there was a lack of alignment between the residents’ contemplations and the concept of dying well. They indicated that ambivalence and ambiguity toward conversations about death and dying should be taken into consideration in future implementations of knowledge-based palliative care that take place in nursing homes after this project is finalized.

Opening the doors a crack wider: palliative care research data in the public domain

This report builds further on OPCARE9, an EU 7th framework project aiming to identify knowledge gaps in care provision in the last days of life. This study began with curiosity about new ways of generating research questions to meet future challenges in palliative care (PC) and how to better engage disciplines not generally included in PC research. We here describe an innovative methodological approach to generating data; put data relevant for PC research in the public domain; and raise issues about open access in PC research. We aimed to compile research questions from different disciplines, based on raw data consisting of approximately 1000 descriptions of non-pharmacological caregiving activities (NPCAs), generated through previous research. 53 researchers from different fields were sent the full list of NPCAs and asked to generate research questions from their disciplinary perspective. Responses were received from 32 researchers from 9 countries, generating approximately 170 research topics, questions, reflections and ideas, from a wide variety of perspectives, which are presented here. Through these data, issues related to death and dying are addressed in several ways, in line with a new public health approach. By engaging a broader group of disciplines and facilitating availability of data in the public domain, we hope to stimulate more open dialogue about a wider variety of issues related to death and dying. We also introduce an innovative methodological approach to data generation, which resulted in a response rate at least equivalent to that in our Delphi survey of professionals in OPCARE9.