"It doesn't Always Have to Be an Expert": Professionals' Perceptions of Practical Aspects of the Existential Dimension of Care for People Approaching Death.

'Existential' can be seen as a broad term for issues surrounding people's experiences and way of thinking about life. This study examined availability of existential care and found that many different staff categories performed existential care. Existential care is associated with conversations and experienced as both easy and difficult; several factors were cited, e.g. insufficient time, stress and the difficulty of addressing existential questions for oneself. Respondents reported need for education, guidance and reflection around existential issues and care. Existential care is described as a natural part of patient care that all professional categories have a responsibility to offer.

"What it is like to be human": The existential dimension of care as perceived by professionals caring for people approaching death.

OBJECTIVES: Existential/spiritual questions often arise when a person suffers from a serious and/or life-threatening illness. "Existential" can be seen as a broad inclusive term for issues surrounding people's experience and way of thinking about life. To be able to meet patients' existential needs, knowledge is needed about what the existential dimension includes. The aim of this study was to investigate how professionals caring for people with life-threatening disease perceive the existential dimension of care. METHODS: This study is based on a mixed method design utilizing a digital survey with open- and closed-ended questions. Descriptive statistics were applied to closed-ended questions and a qualitative descriptive approach was used for the responses to the open-ended questions. Healthcare professionals at specialized palliative care units, an oncology clinic and municipal healthcare within home care and a nursing home in Sweden answered the survey. RESULTS: Responses from 77 professionals expressed a broad perspective on existential questions such as thoughts about life and death. Identifying existential needs and performing existential care was considered a matter of attitude and responsiveness and thus a possible task for any professional. Existential needs centered around the opportunity to communicate, share thoughts and experiences, and be seen and heard. Existential care was connected to communication, sharing moments in the present without doing anything and was sometimes described as embedded in professionals' ordinary care interventions. The existential dimension was considered important by the majority of respondents. SIGNIFICANCE OF RESULTS: This study indicates that with the right attitude and responsiveness, all professionals can potentially contribute to existential care, and that existential care can be embedded in all care. The existential dimension of care can also be considered very important by health professionals in a country that is considered secular.

End-of-life dreams and visions as perceived by palliative care professionals: A qualitative study.

OBJECTIVE: End-of-life dreams and visions (ELDVs) have been suggested to be prevalent psychic phenomena near death that can provide meaning and comfort for the dying. There is a lack of studies from the secular Nordic countries. The aim of this study was to determine whether palliative care professionals in a Nordic country have experience of patients expressing dreams, visions, and/or inner experiences and, if so, how they are perceived. METHOD: Focus-group interviews with 18 professionals in end-of-life palliative care were subjected to qualitative content analysis. RESULTS: Most (15/18) professionals had experience of patients with ELDVs. A dominant content was deceased loved ones. According to most professionals, many patients perceived their ELDVs as real and could report them with clarity. The experience could result in peacefulness for patients, as well as loved ones, and reduce fear of death. Some professionals themselves perceived ELDVs to be real and a normal part of dying while a few found them scary. Most professionals, however, found ELDVs hard to grasp. Many tried to explain the phenomena as the result of medical circumstances and confusion, although reporting that they considered most patients to be normal and of sound mind in connection with their reports on ELDVs. Most patients wanted to talk about their ELDVs, but some could be reluctant due to fear of being considered crazy. The professionals were open-minded and reported having no problem talking about it with the patients and tried to normalize the experience thereby calming the patient and loved ones. SIGNIFICANCE OF RESULTS: The results strengthen the suggestion that ELDVs are common phenomena near death, worldwide. Although most professionals in palliative care recognized ELDVs as beneficial to patients, many found the phenomena hard to grasp and sometimes difficult to distinguish from confusion, indicating a continuous need for exploration and education.

Using the Delphi technique to achieve consensus on bereavement care in palliative care in Europe: An EAPC White Paper.

BACKGROUND: The WHO definition of palliative care includes bereavement support as integral to palliative care, yet a previous survey of bereavement support in palliative care in Europe has shown a range of service responses to loss. A rigorous approach to agreeing and implementing a palliative care bereavement framework was required. AIM: The aim of this study was to develop consensus on best-practice recommendations for bereavement care principles, structures, processes and delivery based on current practice and evidence. DESIGN: In accordance with Guidance on Conducting and Reporting Delphi Studies, a consensus-building five-round Delphi technique was performed. A scoping review of research literature informed drafting of 54 statements by the EAPC Bereavement Task Force. Evaluation of the statements was performed by an expert panel using a 5-point Likert scale. ⩾80% agreement were defined as essential items and 75%-79% agreement were defined as desirable items. Items with a consensus rating <75% were revised during the process. SETTING/PARTICIPANTS: The Delphi study was carried out by an expert panel among membership organisations of the European Association for Palliative Care. RESULTS: In total, 376 email requests to complete Delphi questionnaire were distributed with a response rate of 23% (n = 87) and a follow-up response-rate of 79% (n = 69). Of the initial 54 statements in six dimensions, 52 statements were endorsed with 26 essential statements and 26 desirable statements. CONCLUSIONS: The six dimensions and 52 statements agreed through this Delphi study clarify a coherent direction for development of bereavement services in palliative care in Europe.

Higher levels of unmet support needs in spouses are associated with poorer quality of life - a descriptive cross-sectional study in the context of palliative home care.

BACKGROUND: Family caregivers often report having unmet support needs when caring for someone with life-threatening illness. They are at risk for psychological distress, adverse physical symptoms and negatively affected quality of life. This study aims to explore associations between family caregivers' support needs and quality of life when caring for a spouse receiving specialized palliative home care. METHODS: A descriptive cross-sectional design was used: 114 family caregivers completed the Carer Support Needs Assessment Tool (CSNAT) and the Quality of Life in Life-Threatening Illness - Family caregiver version (QOLLTI-F) and 43 of them also answered one open-ended question on thoughts about their situation. Descriptive statistics, multiple linear regression analyses, and qualitative content analysis, were used for analyses. RESULTS: Higher levels of unmet support needs were significantly associated with poorer quality of life. All CSNAT support domains were significantly associated with one or more quality of life domains in QOLLTI-F, with the exception of the QoL domain related to distress about the patient condition. However, family caregivers described in the open-ended question that their life was disrupted by the patient's life-threatening illness and its consequences. Family caregivers reported most the need of more support concerning knowing what to expect in the future, which they also described as worries and concerns about what the illness would mean for them and the patient further on. Lowest QoL was reported in relation to the patient's condition, and the family caregiver's own physical and emotional health. CONCLUSION: With a deeper understanding of the complexities of supporting family caregivers in palliative care, healthcare professionals might help to increase family caregivers' QoL by revealing their problems and concerns. Thus, tailored support is needed.

Early integration of palliative care: translation, cross-cultural adaptation and content validity of the Supportive and Palliative Care Indicators Tool in a Swedish healthcare context.

BACKGROUND: Timely identification of patients with palliative care needs is a prerequisite for being able to carry out effective and equal palliative care. The Supportive and Palliative Care Indicators Tool (SPICT) identifies patients likely to benefit from a palliative approach. AIM: The main objective was to describe the translation, cross-cultural adaptation and content validation process of the SPICT-SE. In this process, the prefinal SPICT-SE was tested in focus group interviews to explore how the tool was perceived and interpreted by healthcare professionals in a Swedish healthcare context. METHODS: In this qualitative descriptive study, the translation, cross-cultural adaptation and content validation process of the SPICT-SE was based on a recommended method for cross-cultural adaptation of self-report measures. The process included two independent forward translations, a synthesis, and one independent back-translation. An expert committee consolidated all the versions and developed the prefinal version of the SPICT-SE. The prefinal version of the SPICT-SE was tested in four focus group interviews with physicians and nurses engaged in inpatient or outpatient care in south-west Sweden. A thematic analysis of the transcribed interviews was performed. The SPICT-SE was then revised to the final version. RESULTS: In the thematic analysis, four themes were constructed that together described how the SPICT-SE was perceived and interpreted by healthcare professionals: The mindset is familiar and relevant; the tool needs to be adjusted in order to be clearer; the purpose and consequences of the tool are ambiguous; and the tool supports a palliative approach. CONCLUSION: The SPICT-SE has now been successfully translated, culturally adapted and content validated in a Swedish healthcare context.

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.

Developing organisational ethics in palliative care.

BACKGROUND: Palliative carers constantly face ethical problems. There is lack of organised support for the carers to handle these ethical problems in a consistent way. Within organisational ethics, we find models for moral deliberation and for developing organisational culture; however, they are not combined in a structured way to support carers' everyday work. RESEARCH OBJECTIVE: The aim of this study was to describe ethical problems faced by palliative carers and develop an adapted organisational set of values to support the handling of these problems. RESEARCH DESIGN: Ethical problems were mapped out using focus groups and content analysis. The organisational culture were developed using normative analysis and focus group methodology within a participatory action research approach. Main participants and research context: A total of 15 registered nurses and 10 assistant nurses at a palliative unit (with 19 patient beds) at a major University Hospital in Sweden. Ethical considerations: The study followed standard ethics guidelines concerning informed consent and confidentiality. FINDINGS: We found six categories of ethical problems (with the main focus on problems relating to the patient's loved ones) and five categories of organisational obstacles. Based on these findings, we developed a set of values in three levels: a general level, an explanatory level and a level of action strategies. DISCUSSION: The ethical problems found corresponded to problems in other studies with a notable exception, the large focus on patient loved ones. The three-level set of values is a way to handle risks of formulating abstract values not providing guidance in concrete care voiced in other studies. CONCLUSION: Developing a three-level set of values adapted to the specific ethical problems in a concrete care setting is a first step towards a better handling of ethical problems.

To Talk or not to Talk About Existential Questions - An Interview Study With Elderly Persons and Patients With Fatal Disease.

Background: Existential experiences often come to the fore in the case of a severe and/or life-threatening disease and in old age. This can evoke a variety of thoughts and emotions. The existential dimension is a concept that encompasses spiritual, religious and secular perspectives. Objective: The aim of this study was to gain a deeper understanding of how patients describe the existential dimension of life and whether and in what way the existential questions are raised in conversations and other forms of support within care. Methods: A qualitative design, with in-depth semi-structured interviews with patients admitted to an out-clinic oncology department at one hospital and participants living in a nursing home. The interviews were analysed using qualitative content analysis. Results: A total of 15 persons were interviewed. The respondents varied in age from 44 to 96. Two main themes emerged: What are existential questions? and Talk about existential questions. The existential questions refer to life as a whole and death as an end of life. It was summarized into three subcategories: The experience of the life, Existing within context and Spirituality and religion. About half of the participants thought it was important to talk about existential questions. They wanted to choose who to talk to, when and about what. Support was received from loved ones, professionals and experiences beyond conversations. Conclusions: The study provide new knowledge of how patients and elderly experience the existential dimension. The respondents emphasized a desire to be selective with whom they shared these questions and thoughts.

"They must have seen it, you know." Body talk, extension talk, and action talk: A qualitative study on how palliative care patients and their significant others express experiencing these nonverbal cues.

Communication about life-threatening disease and palliative care is essential but often experienced as difficult by those concerned and has mainly been studied in terms of its verbal components. Despite the fundamentality of nonverbal communication, its dimensions in care, especially in the communication by patients and their significant others, has not been as extensively examined. Drawing on a secondary qualitative content analysis of data from 23 interviews-15 with patients in specialized palliative home care in Sweden and 8 with their significant others-this study aims at understanding and characterizing how patients verbally express experiences of conveying nonverbal cues about life-threatening disease and its consequences and how their significant others express perceiving these cues. Patients expressed experiences of nonverbal communication in the form of cues conveying meaning about their disease and its consequences, often beyond their control. Whether and how the patients reinforced these cues verbally, depended on individual needs, care for others, and evaluations of relationships. Significant others acknowledged the presence of nonverbal cues and tried to interpret their meaning. Both patients and significant others emphasized the importance of nonverbal cues and actively related to how cues in the form of bodily appearance, aids, objects and acts, serve communicative functions about disease and its consequences. These dimensions of nonverbal communication are characterized as: body talk, extension talk and action talk. This study contributes to an international knowledge base on the complexities of nonverbal communicative aspects in these dimensions and how it affects patients and significant others. Professionals should be aware that dimensions of care, such as prescribed aids, from the patients' perspective can be perceived as nonverbal cues that might "speak of" disease progression.