Lisbeth Thoresen

• Thoresen, Lisbeth & Vigeland, Anne (2025). Hjelp de døde – dødens materielle, rituelle og politiske aspekter. Tidsskrift for omsorgsforskning. ISSN 2387-5976. 11(2), p. 80–92. doi: 10.18261/tfo.11.2.9. Full text in Research Archive Show summary

  Basert på intervjuer med dødsdoulaer (ikke-medisinske hjelpere) har kunstneren Every Ocean Hughes laget videoverket One Big Bag. I videoen viser en dødsdoula frem og forteller om ulike ting hen trenger for å stelle døde personer i hjemmet. Ved siden av dødens materielle aspekter og praktiske råd er fremtredende trekk ved videoen dødsdoulaens raske bevegelser, slag mot kroppen og stamping med føttene. I artikkelen synliggjøres hvordan One Big Bag er egnet til å tematisere og problematisere sider ved døden, og vi diskuterer hva det betyr at konteksten for One Big Bag er kunstmuseet – for innholdet og for publikum på museet. Videoen er handlingsmettet og detaljrik, og vi har organisert analysen under følgende overskrifter: dødens praktiske og materielle sider; dødens rituelle og eksistensielle sider og dødens politiske sider; samt en analyse av One Big Bag på kunstmuseet. Videoverket gjør dødens materielle, rituelle og politiske sider tydeligere og betydningsfulle. Innholdet i verket og plasseringen av videoverket i en black box i museets samlingsutstilling bidrar til læring, til å bli berørt samt ro og et slags fellesskap mellom publikum gjennom en kollektiv opplevelse.

• Brøderud, Linn; Romøren, Maria; Hermansen, Karin Berg; Sævareid, Trygve Johannes Lereim; Thoresen, Lisbeth & Pedersen, Reidar (2025). Barriers and facilitators in implementing advance care planning for frail older patients acutely admitted to geriatric hospital units: a nested qualitative study. Frontiers in Health Services. 5. doi: 10.3389/frhs.2025.1646541. Full text in Research Archive Show summary

  Background: Appropriate communication with patients is increasingly crucial in a growing elderly population to prevent both over- and undertreatment. Advance care planning (ACP) is recognized as a valuable communication process for patients, their relatives and healthcare professionals that facilitates future care and medical decision-making. Despite its importance, the uptake remains low, particularly among frail, older patients in hospitals. Methods: This qualitative substudy is nested within a cluster randomized controlled trial. Data collection involved eight semi-structured interviews conducted in acute geriatric hospital units receiving our implementation support program, along with informal data from interactions with the units during the implementation process. The aim was to explore healthcare professionals' perspectives on the barriers and facilitators to ACP implementation and their experiences with the implementation support program. A semi-structured interview guide was used. The data was analyzed using content analysis. Results: Factors influencing ACP implementation were identified at three levels: a) the organizational level, b) the national level, and c) the clinical level. Participants recognized the critical role of timing, context, and patients' capacity. However, there was meaningful opportunities for ACP conversations in acute geriatric units. Overall, the experiences underscored the complex interplay of individual motivation and interest, organizational support, prioritization, available time and resources, and systemic factors that influence the integration of ACP into clinical practice, as well as the fact that research can act as both a barrier and a facilitator in implementation efforts. Discussion: This study illustrates the significant challenges in implementing ACP in acute hospital care. Despite a generally positive perception of ACP, its implementation was hindered by barriers such as overwhelming workload, production-oriented healthcare, the biomedical model, and lack of prioritization. These factors creates a cycle where short-term demands overshadow preventive and patient-centered interventions, limiting their perceived and documented benefits. Breaking this cycle will likely require targeted investment in the implementation of complex interventions.

• Torvund, Solveig Kristine Kolstad; Thoresen, Lisbeth; Magelssen, Morten & Fredheim, Olav Magnus Søndenå (2025). Conceptual barriers to palliative sedation: insights from focus group interviews with specialist palliative care professionals. BMC Palliative Care. 24(1). doi: 10.1186/s12904-025-01931-y. Full text in Research Archive Show summary

  Palliative sedation is considered an essential measure when other methods cannot provide sufficient symptom control in end-of-life. Prior research suggests that health care professionals find boundaries between palliative sedation, routine symptom management and euthanasia ambiguous. Appropriate implementation of palliative sedation depends on palliative care clinicians being confident in conceptual understanding of palliative sedation. The aim of this study was to understand specialist palliative care professionals' conceptualization of distinctions between symptom management, palliative sedation, and euthanasia; how perceived boundary ambiguities act as barriers to timely initiation of palliative sedation; and potential strategies to overcome these barriers. Methods This is an explorative qualitative phenomenological study, based on focus group interviews, utilizing reflexive thematic analysis. Four focus groups were interviewed at specialist palliative care departments across four Norwegian hospitals. Participants were 11 nurses and 12 physicians with at least one year of experience within specialist palliative care. Results Through thematic analysis two core themes were developed; the distinction between symptom management and palliative sedation, and the distinction between palliative sedation and euthanasia. Important sub-themes were definitional uncertainties, complexity of gradual medication titration, timing of sedation, indications for sedation, communication, and concerns about hastening death. Conclusion Even within specialist palliative care, different end-of-life treatment concepts are not experienced clear-cut. These conceptual ambiguities impede appropriate initiation of palliative sedation. Overcoming such barriers requires multi-level interventions: enhancing practitioners' definitional knowledge, fostering awareness of clinical intention during end-of-life treatment, promoting interprofessional dialogue, and developing more explicit clinical guidelines.

• Westbye, Siri Færden; Romøren, Maria; Ahmed, Marc; Hermansen, Karin Berg; Brøderud, Linn & Wahl, Astrid Klopstad [Show all 9 contributors for this article] (2025). Measuring the level of implementation of advance care planning – a fidelity-based cross-sectional study. Frontiers in Health Services. 5. doi: 10.3389/frhs.2025.1629242. Full text in Research Archive Show summary

  Introduction Advance care planning (ACP) is supported by evidence, legal and ethical principles and ACP guidelines. However, this complex intervention is often poorly implemented. This article presents a novel fidelity scale to measure the implementation of ACP and reports the preliminary testing of the scale at baseline in a larger trial aiming at implementing ACP in hospitals in Norway. Method The research design conducted was a cross-sectional measurement of fidelity to guidelines, conducted in 12 geriatric hospital units in Norway recruited using purposive sampling. The sample size for the larger trial was determined, based on prior research, to be at least four clusters in each arm. Due to the possibility of unit drop-out during the project period and to secure sufficient power, we included six units in the intervention arm and six in the control arm. For the baseline measurement we developed an ACP fidelity scale including three subscales: implementation, quality and penetration rate, each with 4–11 items. We ensured face and content validity through input from relevant theories and research, experts and users. Items were scored from 1 to 5, with 1 indicating no implementation and 5 indicating full implementation. Data was analyzed using descriptive statistics, Cronbach's alpha and calculation of interrater reliability for the scales. Further psychometric testing could not be conducted at this stage due to the lack of variance in the items. Results The mean score for the implementation subscale was 1.213, with a median of 1, a standard deviation (SD) of 0.08, a standard error (SE) of 0.01, a variance of 0.01, and a range of 0.28 (minimum 1.14 and maximum 1.42). The scores in the subscale showed that none of the units had recommended implementation measures. Only a few professionals reported they had heard of ACP, but not the whole staff. Cronbach's alpha could not be estimated due to the lack of variation in the scores for this subscale. On the quality subscale, which assesses whether ACP is practiced in accordance with practice guidelines, the mean score was 1.11, the median was 1, the SD was 0.48, the SE was 0.06, the variance was 0.13, and the range was 1.27 (minimum 1 and maximum 2.27). The scores in this subscale showed that ACP was practiced sporadically by the palliative care team in only one unit, while the other staff did not engage in this practice at all. Cronbach's alpha for the subscale on quality was 0.887 (11 items) showing an acceptable internal consistency. For the penetration rate subscale, which measures how widespread the practice is, the mean score was 1.08, the median was 1, the SD was 0.28, the SE was 0.05, the variance was 0.08, and the range was from a minimum of 1 to a maximum of 2. Among the total number of admitted geriatric patients, only 10% had received ACP in only one of the 12 units. Also, for this subscale, the model for Cronbach's alpha could not be applied. There was little variation in the low measurements, thus the interrater reliability was high, reflected in the Intraclass Correlation Coefficient (ICC). The ICC was 0,916 [−0,721,0.976] for the implementation subscale, 1.00 for the quality subscale, and 1.00 for the penetration rate subscale. Conclusion Our findings indicate very low implementation of ACP in acute geriatric hospital units in Norway. The newly developed ACP fidelity scale has the potential to serve as an important tool for improving the quality of healthcare services for older patients. However, more data is needed to validate the psychometric properties of the scale. Our study should be considered as a preliminary study, and the scale should be used with caution as long as its properties are not well validated. Clinical Trial Registration ClinicalTrials.gov , NCT05681585.

• Thoresen, Lisbeth; Aas, Eline; McCaffrey, Nikki; Engel, Lidia; Løkkevik, Nina & Michel, Yvonne Anne [Show all 7 contributors for this article] (2025). What matters to patients with cancer receiving home care at the end of life? A qualitative study comparing patients’ and healthcare professionals’ views. International Journal of Qualitative Studies on Health and Well-being. ISSN 1748-2623. 20(1). doi: 10.1080/17482631.2025.2517358. Full text in Research Archive Show summary

  Purpose To improve care for patients in the last phase of life, healthcare professionals (HCPs) need to understand what matters to them in terms of care and follow-up. Therefore, in our study, we investigated how patients with cancer in Norway who are receiving home care perceive their situations and what matters to them at the end of life and compared it with HCPs’ views on what matters to such patients. Methods Following a qualitative design, we conducted in-depth interviews with eight patients with late-stage cancer living at home and four focus group interviews with 21 hCPs, mainly nurses. Patients and HCPs were recruited from two municipalities in Southeast and mid-Norway. The study period lasted from December 2020 to October 2022. We performed reflexive, thematic analyses of both data sets. Results The views of all eight patients and all 21 hCPs were interpreted according to five themes: cancer impacts all aspects of life, navigating the healthcare system, living with dying, the paramount importance of relationships, and dying at home. Conclusion Entering the end of life, patients feel exhausted, lonely, and abandoned. They lack confidence in HCPs and the healthcare system. HCPs characterized plans and predictability as being important during end-of-life care, whereas patients were often hesitant to talk about and plan for the last phase of life.

• Aurén-Møkleby, Eva Margareta; Aasbø, Gunvor; Mengshoel, Anne Marit; Solbrække, Kari Nyheim & Thoresen, Lisbeth (2025). Kept at a Distance: A Qualitative Study of Bereaved Individuals’ Experiences of How Death Was Addressed When Their Partner Died at Home. Qualitative Health Research. ISSN 1049-7323. doi: 10.1177/10497323251328294. Full text in Research Archive Show summary

  Open awareness and dialogue concerning dying are considered essential for planning and realizing death at home. Moreover, much help and support throughout the dying process and death trajectory are provided by a person’s next of kin, often a spouse or partner. To explore how death was addressed among couples when one of the partners had died at home, we interviewed 14 bereaved individuals. The results were grouped into the following themes: “Idea(l)s and realities of communication,” “Different kinds of talks,” and “Unspoken understandings and showing without talking.” We found that prevailing narratives about how death should be discussed in socially and culturally expected ways affected how the bereaved addressed the imminent death of their partner, both at the time and in their retrospective reflections. In a few cases, death had been talked about directly using words such as “death” and “dying,” although indirect or avoidant discussions about death were more common. The bereaved mentioned unspoken understandings about how it was unnecessary to address death—that is, one just knew. In cases where the couple could not share a silent understanding, the bereaved had experienced loneliness. Death could also be addressed through actions, such as becoming closer or the ill person arranging for an easier subsequent life for their partner. To reduce the expectations that dying people and their partners might have to interact in certain ways at the end of life, it is important to acknowledge that awareness of dying can be expressed and shared in various ways.

• Krawczyk, Marian; Solbrække, Kari Nyheim & Thoresen, Lisbeth (2025). Extending the concept of total pain to cancer survivorship. Frontiers in Sociology. 9. doi: 10.3389/fsoc.2024.1387096. Full text in Research Archive Show summary

  More people are surviving cancer than ever before. While there is a growing body of research on quality of life in cancer survivorship, we still do not have a good understanding of the lived complexities that many people experience after successful treatment. Inspired by the literature on existential concerns in cancer survivorship, we consider how the concept of ‘total pain’, which emerged from the contemporary hospice movement, may be useful to think about experiences of suffering in cancer survivorship, using interviews from a Norwegian research project Rethinking Cancer Survivorship. We find that the concept of total pain encapsulates concerns for existential suffering and also has unique features which offer new forms of understanding and action. This includes its origins within cancer care; how it addresses the individual as a whole and re-centres the body; its reliance on and recognition of the limits of narrative; how it attends to relationality; and how the concept may afford unique insights for service development. Dying from cancer and surviving cancer are different processes, but total pain can serve as a useful conceptual compass to orient our understandings of those who experience this illness, regardless of disease outcome

• Romøren, Maria; Hermansen, Karin Berg; Sævareid, Trygve Johannes Lereim; Brøderud, Linn Benita; Westbye, Siri Færden & Wahl, Astrid Klopstad [Show all 10 contributors for this article] (2024). Implementation of advance care planning in the routine care for acutely admitted patients in geriatric units: protocol for a cluster randomized controlled trial. BMC Health Services Research. 24. doi: 10.1186/s12913-024-10666-0. Full text in Research Archive Show summary

  Background Acutely ill and frail older adults and their next of kin are often poorly involved in treatment and care decisions. This may lead to either over- or undertreatment and unnecessary burdens. The aim of this project is to improve user involvement and health services for frail older adults living at home, and their relatives, by implementing advance care planning (ACP) in selected hospital wards, and to evaluate the clinical and the implementation interventions. Methods This is a cluster randomized trial with 12 hospital units. The intervention arm receives implementation support for 18 months; control units receive the same support afterwards. The ACP intervention consists of 1. Clinical intervention: ACP; 2. Implementation interventions: Implementation team, ACP coordinator, network meetings, training and supervision for health care personnel, documentation tools and other resources, and fidelity measurements with tailored feedback; 3. Implementation strategies: leadership commitment, whole ward approach and responsive evaluation. Fidelity will be measured three times in the intervention arm and twice in the control arm. Here, the primary outcome is the difference in fidelity changes between the arms. We will also include 420 geriatric patients with one close relative and an attending clinician in a triadic sub-study. Here, the primary outcomes are quality of communication and decision-making when approaching the end of life as perceived by patients and next of kin, and congruence between the patient’s preferences for information and involvement and the clinician’s perceptions of the same. For patients we will also collect clinical data and health register data. Additionally, all clinical staff in both arms will be invited to answer a questionnaire before and during the implementation period. To explore barriers and facilitators and further explore the significance of ACP, qualitative interviews will be performed in the intervention units with patients, next of kin, health care personnel and implementation teams, and with other stakeholders up to national level. Lastly, we will evaluate resource utilization, costs and health outcomes in a cost-effectiveness analysis. Discussion The project may contribute to improved implementation of ACP as well as valuable knowledge and methodological developments in the scientific fields of ACP, health service research and implementation science.

• Fredheim, Olav Magnus Søndenå; Torvund, Solveig Kristine Kolstad; Thoresen, Lisbeth & Magelssen, Morten (2024). How should respiratory depression and loss of airway patency be handled during initiation of palliative sedation? Acta Anaesthesiologica Scandinavica. ISSN 0001-5172. 68(5), p. 675–680. doi: 10.1111/aas.14396. Full text in Research Archive Show summary

  Background Loss of airway patency has been reported during initiation of palliative sedation. In present guidelines the loss of airway patency during initiation of palliative sedation is not addressed. Airway patency can be restored by jaw thrust/chin lift or placing the patient in the recovery position. Aim A structured ethical analysis of how respiratory depression and loss of airway patency during initiation of palliative sedation should be handled. The essence of the dilemma is whether it is appropriate to apply simple non-invasive methods to restore airway patency in order to avoid the patient's immediate death. Design A structured analysis based on the four principles of healthcare ethics and stakeholders' interests. Results Beneficence and autonomy support a decision not to regain airway patency whereas non-maleficence lends weight to a decision to restore airway patency. Whether the proportionality criterion of the principle of double effect is met depends on the features of the individual case. The ethical problem appears to be a genuine dilemma where important values and arguments point to different conclusions. Conclusion Whether to restore airway patency when the airway is obstructed during initiation of palliative sedation will ultimately be based on clinical judgment taking into account both any known patient preferences and relevant clinical information. There are strong arguments favoring both options in this clinical and ethical dilemma. The fact that a clear and universal recommendation cannot be made does not imply indifference regarding what is the clinically and ethically best option for each individual patient.

• Karlsen, Heidi; Magelssen, Morten & Thoresen, Lisbeth (2024). Kommunale etikkomiteer kan ikke bæres av enkeltpersoners engasjement alene. Nordisk tidsskrift for helseforskning. ISSN 1504-3614. 20(2). doi: 10.7557/14.7168. Full text in Research Archive Show summary

  Mange ansatte i kommunale helse- og omsorgstjenester som opplever etiske utfordringer i sin arbeidshverdag, mangler arenaer for å diskutere slike problemstillinger. I et prosjekt fikk fire kommuner implementeringsstøtte til å etablere kommunale etikkomiteer, et tverrfaglig forum hvor ansatte, pasienter og pårørende kan få hjelp til å drøfte etisk krevende problemstillinger. I kommunehelsetjenesten er etablering av etikkomiteer å anse som et nybrottsarbeid, som hittil har vært lite systematisk undersøkt. Ved prosjektstart oppnevnte deltakerkommunene to ressurspersoner, og disse ble komiteenes ledere eller sekretærer. I denne studien har vi undersøkt disse ressurspersonenes erfaringer med å koordinere og lede kommunenes etikkarbeid, inkludert å lede konkrete etikkdrøftinger. Data fra tre fokusgrupper, supplert og validert med data fra fem dialogseminarer over tre år, ble analysert ved hjelp av refleksiv tematisk analyse. Funnene viser at refleksjon over etiske spørsmål kan ha betydning utover enkeltstående saker, men også at ressurspersonene fikk omfattende arbeidsoppgaver og ansvar innen implementering, kompetansebygging, markedsføring og forankring. For å unngå å være avhengig av enkeltpersoners innsats, bør komiteenes rammevilkår forbedres.

• Aurén-Møkleby, Eva Margareta; Aasbø, Gunvor; Fredheim, Olav Magnus Søndenå; Mengshoel, Anne Marit; Solbrække, Kari Nyheim & Thoresen, Lisbeth (2024). “It turned out right for both of us”: A qualitative study about a preference for home death and actual place of death. Death Studies. ISSN 0748-1187. doi: 10.1080/07481187.2024.2369847. Full text in Research Archive Show summary

  This qualitative study was conducted in Norway to explore couples’ preference for home death when one of the partners was dying from cancer, and what made home death possible or not. We conducted dyad interviews with five couples. After the patients’ death, the spouses participated in individual interviews. The data were interpreted using thematic narrative analysis. One patient died at home, and three died in a healthcare institution. The narratives show how interdependency and mutual care were important when dealing with home death. When care needs were manageable at home, home was perceived a safe place and the preferred place for death. When care needs were experienced to become unmanageable at home, the sense of safety changed and admission to a health care institution was considered the best option. Regardless of place of death, the spouses experienced the end to have turned out right for their partner and themselves.

• Trier, Ellen Marie Lykke; Synnes, Oddgeir & Thoresen, Lisbeth (2024). Fysiske omgivelsers betydning for pårørende i palliative enheter: en foto-elisiteringsstudie. Nordisk sygeplejeforskning. ISSN 1892-2678. 14(2-2024), p. 1–18. doi: 10.18261/nsf.14.2.3. Full text in Research Archive
• Bjørnelv, Gudrun Maria Waaler; Aas, Eline; Aaltonen, Mari; Hagen, Terje P.; Thoresen, Lisbeth & Forma, Leena (2024). Place of living at end-of-life according to cause of death: a comparative analysis of all decedents 70 years or older in 2009-2013 in Finland and Norway. Annals of Palliative Medicine. ISSN 2224-5820. 13(3). doi: 10.21037/apm-23-269. Full text in Research Archive Show summary

  Background: Time at home at end-of-life is perceived as valuable to individuals. Increasing home care is therefore often a political goal. Yet, little is known about where individuals live towards their end-of-life. Our aim was to describe where individuals reside their last 6 months of life in Finland and Norway, and how this differed by cause of death, sex, age, marital status, and income. Methods: We used individual-leveled national registry data on all decedents aged >70 years in 2009–2013 to describe the number of days individuals spent at home, in hospital, in long-term care (LTC) and short-term care (STC) facilities. We described the place of residence for all and by causes of death: cancer, diseases of the circulatory system, disease in the respiratory system, and mental and behavioral disorders (primarily dementia). We analyzed how age, marital status (indicating informal care), and income associated with place of residence. Analyses were stratified by sex and country. Results: During the last 6 months of life, decedents in Finland (n=186,017) and Norway (n=159,756) spent similar amounts of days in hospital (8 and 11 days) and in STC facilities (15 and 13 days). Finnish decedents spent more days at home (96 vs. 84 days) and fewer days in LTC facilities (64 vs. 80 days). Living arrangement differed similarly by cause of death in the two countries, e.g., decedents from cancer and mental and behavioral disorders spent 123 [113] vs. 29 [21] days at home in Finland (Norway). In both countries, for all causes of death, lower age and marital status were associated with more days at home, for both males and females. While those with higher income spent more days at home in Norway, the opposite was found in Finland. Conclusions: Older individual’s living arrangements in the last 6 months of life were similar in Finland and Norway but differed by cause of death. Younger individuals and those with access to informal care spent more days at home, compared to their counterparts. With aging populations, more individuals will likely need LTC at their end of life. Policies should align with these needs when developing future health care services.

• Thoresen, Lisbeth & Bondevik, Hilde (2024). En stille stund med mor – dødsleiet i nyere norsk skjønnlitteratur. Tidsskrift for omsorgsforskning. ISSN 2387-5976. doi: 10.18261/tfo.10.1.2. Full text in Research Archive Show summary

  Døden og dødsleiet er et sentralt motiv i kunst og litteratur. For den allmenne leseren, men også for helsepersonell og forskere, kan litterære fortellinger bidra til økt forståelse for det å leve med sykdom, være døende og dødsleiet. Hensikten med denne artikkelen er å undersøke hvordan dødsleiet fremstilles i de tre norske romanene Selveiersanger (2021) av Marianne Marthinsen, Mor om natten av Niels Fredrik Dahl (2017) og Nåde av Linn Ullmann (2002). Vår lesning kan karakteriseres som fenomenologisk og erfaringsnær. Det innebærer at lesningen er preget av hva romanene vekker i oss. De tre romanene synliggjør hvordan et dødsleie alltid inngår i en større livsfortelling. Videre utfordrer de tre fortellingene kulturelle idealer om den fredfulle døden og forestillinger om forsoning og tilgivelse. Skjønnlitteraturen treffer og utfordrer antagelser om døden og dødsleiet på andre måter enn helsepolitiske målsettinger og helsefaglige idealer og retningslinjer.

• Michel, Yvonne Anne; Aas, Eline; Augestad, Liv Ariane; Burger, Emily Annika; Thoresen, Lisbeth & Bjørnelv, Gudrun Maria Waaler (2024). Healthcare use and costs in the last six months of life by level of care and cause of death. BMC Health Services Research. 24(1). doi: 10.1186/s12913-024-10877-5. Full text in Research Archive Show summary

  Background: Existing knowledge on healthcare use and costs in the last months of life is often limited to one patient group (i.e., cancer patients) and one level of healthcare (i.e., secondary care). Consequently, decision-makers lack knowledge in order to make informed decisions about the allocation of healthcare resources for all patients. Our aim is to elaborate the understanding of resource use and costs in the last six months of life by describing healthcare use and costs for all causes of death and by all levels of formal care. Method: Using five national registers, we gained access to patient-level data for all individuals who died in Norway between 2009 and 2013. We described healthcare use and costs for all levels of formal care—namely primary, secondary, and home- and community-based care —in the last six months of life, both in total and differentiated across three time periods (6-4 months, 3-2 months, and 1-month before death). Our analysis covers all causes of death categorized in ten ICD-10 categories. Results: During their last six months of life, individuals used an average of healthcare resources equivalent to €46,000, ranging from €32,000 (Injuries) to €64,000 (Diseases of the nervous system and sense organs). In terms of care level, 63% of healthcare resources were used in home- and community-based care (i.e., in-home nursing, practical assistance, or nursing home care), 35% in secondary care (mostly hospital care), and 2% in primary care (i.e., general practitioners). The amount and level of care varied by cause of death and by time to death. The proportion of home- and community-based care which individuals received during their last six months of life varied from 38% for cancer patients to 92% for individuals dying with mental diseases. The shorter the time to death, the more resources were needed: nearly 40% of all end-of-life healthcare costs were expended in the last month of life across all causes of death. The composition of care also differed depending on age. Individuals aged 80 years and older used more home- and community-based care (77%) than individuals dying at younger ages (40%) and less secondary care (old: 21% versus young: 57%). Conclusions: Our analysis provides valuable evidence on how much healthcare individuals receive in their last six months of life and the associated costs, broken down by level of care and cause of death. Healthcare use and costs varied considerably by cause of death, but were generally higher the closer a person was to death. Our findings enable decision-makers to make more informed resource-allocation decisions and healthcare planners to better anticipate future healthcare needs.

• Thoresen, Lisbeth (2024). "Total pain" - et nøkkelbegrep i den palliative omsorgen for døende pasienter Men hva når pasienten overlever? In Solbrække, Kari Nyheim & Bondevik, Hilde (Ed.), Kreftoverlevelse på nye måter. Scandinavian Academic Press . ISSN 9788230403310. p. 215–233. doi: 10.62342/SAP.OA.2010. Full text in Research Archive Show summary

  I dagens Norge er det mer enn 300 000 personer som har hatt kreft, eller som lever med kreftsykdom. Kunnskapen om de sosiale og personlige sidene ved det å overleve en kreftsykdom er likevel begrenset, noe denne boka tar opp i bred forstand. Vekker alle former for kreft, bivirkninger av behandlingen eller senvirkninger like mye empati? Hvilket språk er tilgjengelige for dem som rammes? Hvem setter dagsorden for hvordan sykdom generelt, og kreft spesielt, tas opp offentlig? Hvilke stemmer blir hørt? Og hvordan kan kreftoverlevere i større grad forstås og møtes på egne premisser? I denne antologien undersøker forskere med ulik fagbakgrunn hvordan det erfares å få kreft, og hvordan disse erfaringene er knyttet til storsamfunnets forestillinger om kreft og kreftoverlevelse. På film, i blogger og andre personlige beretninger beskrives ofte kreftoverleveren som en helt. På hvilken måte påvirker dette idealet om heroisme mennesker som lever med – og har levd med – kreft? Boka tar særlig for seg erfaringer med gynekologisk kreft, kolorektal kreft og lungekreft, kreftformer som har vært lite synlige i dagens kulturelle offentlighet. Den bygger på nyskapende forskning og vil være interessant for alle som er i berøring med kreft, også helsepersonell.

• Aurén-Møkleby, Eva Margareta; Thoresen, Lisbeth; Mengshoel, Anne Marit; Solbrække, Kari Nyheim & Aasbø, Gunvor (2023). ‘It’s not just about me’: a qualitative study of couples’ narratives about home death when one of the partners is dying of cancer. Palliative Care & Social Practice. 17. doi: 10.1177/26323524231189517. Full text in Research Archive Show summary

  Background: Most cancer patients state a preference for home death. Care and support from primary caregivers are important to enable dying at home. A preference for home death from the perspective of couples has rarely been investigated.<p> <p>Objectives: To explore how a preference for home death is understood and enacted in couples where one of the partners is dying of cancer.<p> <p>Design: A qualitative interview research design with a narrative approach was used.<p> <p>Methods: Five couples participated in dyad interviews. During the analysis, two interviews that particularly illuminated couples’ shared and individual views were chosen as the primary cases.<p> <p>Results: The interviews show, in two highly different ways, how a preference for home death is a significant relational matter. The interviews are presented as two cases: ‘Struggles in an Unknown Terrain’ and ‘Reliance at the Kitchen Table’. They show how a preference for home death can be understood and enacted as a struggle or as reliance based on the couple’s shared biography and the partner’s ability to care for the partner during the end-of-life phase. The analysis highlighted the negotiations that underpin a preference for home death. In these negotiations, the couples drew on idealised understandings of home death. These ideas were supported by cultural values related to autonomy and independence as well as participation and citizenship. Thus, in the negotiations about being cared for and caring, legitimate dependency and the maintenance of a reciprocal relationship were balanced. The presence of healthcare professionals and medical devices in the home had to be balanced with the need to maintain a sense of self and an authentic home.<p> <p>Conclusion: A relational perspective on a preference for home death made us attentive to couples’ negotiations. These negotiations give couples the opportunity to re-evaluate and reconfirm individual and mutual needs in the end-of-life phase.

• Werdofa, Hirut Megersa; Thoresen, Lisbeth; Lulseged, Belayneh & Lindahl, Anne Karin (2023). 'I believe respect means providing necessary treatment on time' - a qualitative study of health care providers' perspectives on disrespect and abuse during childbirth in Southwest Ethiopia. BMC Pregnancy and Childbirth. 23(1). doi: 10.1186/s12884-023-05567-9. Full text in Research Archive Show summary

  Abstract Background The majority of maternal deaths occur in low-income countries, and facility-based childbirth is recognised as a strategy to reduce maternal mortality. However, experiences of disrespect and abuse during childbirth are reported as deterrents to women’s utilisation of health care facilities. Health care providers play a critical role in women’s experiences during childbirth; yet, there is limited research on service providers’ views of disrespect and abuse in Ethiopia. Therefore, this study aimed to explore providers’ perspectives on disrespect and abuse during childbirth in a teaching hospital in Southwest Ethiopia. Method Qualitative study was conducted in a tertiary teaching hospital in Jimma Ethiopia. In-depth interviews were conducted with 32 purposefully selected health care providers, including midwives, obstetrics and genecology resident’s, senior obstetricians and nurses. Interviews were audio-recorded, transcribed and thematically analysed using the qualitative data analysis software program MAXQDA. Results Three major themes were identified from the health care providers’ perspectives: (1) respectful and abusefree care, (2) recognised disrespect and abuse; and (3) drivers of women’s feelings of disrespect and abuse. The first theme indicates that most of the participants perceived that women were treated with respect and had not experienced abuse during childbirth. The second theme showed that a minority of the participants recognised that women experienced disrespect and abuse during childbirth. The third theme covered situations in which providers thought that drivers for women felt disrespected. Conclusion Most providers perceived women’s experiences as respectful, and they normalized, and rationalized disrespect and abuse. The effect of teaching environment, the scarcity of resources has been reported as a driver for disrespect and abuse. To ensure respectful maternity care, a collaborative effort of administrators, teaching institutions, professional associations and researchers is needed. Such collaboration is essential to create a respectful

• Karlsen, Heidi; Magelssen, Morten & Thoresen, Lisbeth (2023). "Det er dårlig gjort å ha møte uten oss det gjelder" Erfaringer fra pårørende som har deltatt i etikkdrøftinger med kommunale etikkomiteer. Tidsskrift for omsorgsforskning. ISSN 2387-5976. 9(1), p. 1–7. doi: 10.18261/tfo.9.1.10. Full text in Research Archive Show summary

  Bakgrunn: Det er sjelden at pårørende og pasienter inviteres til å drøfte etisk vanskelige situasjoner i kommunale etikkomiteer. I vår studie deltok pårørende i 10 av 54 drøftinger, mens pasienter ikke deltok i noen. Hva kan vi lære av pårørendes deltakelse i etikkdrøftinger? Metode: Dybdeintervjuer med seks pårørende som har deltatt i etikkdrøftinger. Materialet er analysert ved hjelp av en refleksiv tematisk innholdsanalyse. Hovedresultat: Pårørende var usikre i møte med etikkomiteene. De hadde behov for god og tilpasset informasjon om hva etikkomiteen var, hva formålet med drøftingen skulle være, og hva som var forventet av dem. «Etikkspråket» var et ukjent språk for deltakerne, men de ønsket å medvirke i drøftinger og beslutninger som angikk pasienten. Pårørende formidlet etisk ladede oppfatninger og erfaringer gjennom personlige fortellinger og følelser. Etikkomitémøter synes å være en egnet arena for reell brukermedvirkning for pårørende. Konklusjon: Kommunale etikkomiteer kan bidra til pårørendemedvirkning og bedre samhandling, men fordrer god informasjon, gode prosesser og at pårørendes tilnærming til etikk lyttes til og anerkjennes. En prinsippbasert etikkdrøfting kan utfylles og nyanseres med narrativ etikk.

• Bjørvik, Eira; Thoresen, Lisbeth; Salamonsen, Anita; Fauske, Lena & Solbrække, Kari Nyheim (2023). Exploring the Impact of Interview Location on Knowledge Development. International Journal of Qualitative Methods (IJQM). 22. doi: 10.1177/16094069231168483. Full text in Research Archive Show summary

  In ethnographic and participatory studies, the study location is often claimed to have an obvious significance, whereas, in the methodology literature on qualitative interviews, this aspect is frequently treated as a pragmatic issue. Based on this background, there are claims that the location of an interview should be understood as a fundamental, active aspect of the research process as well as a sensitizing concept. Considering this ambition, the aim of this article is to develop further insights into how different interview locations may contribute to knowledge development regarding the issue being studied. Based upon a study on cancer survivorship and experiences from conducting interviews in three different settings, namely the participants’ home, an office on the university’s premises, and a cancer care center located at a hospital, this paper illustrates how the choice of location may have an impact and evoke insights and knowledge regarding the research issue. The interviews conducted in private homes provided insights into how life post cancer implicated a more house-bound lifestyle than before, with a risk of becoming isolated. The hospital setting yielded responses that were more mixed. While some could not stand coming there, others considered the hospital to represent safety. The third interview location, an office at the university, was the most ‘formal’ location and seemed to resonate with the participants’ present busy but exhausting work life.

• Westbye, Siri Færden; Rostoft, Siri; Romøren, Maria; Thoresen, Lisbeth; Wahl, Astrid Klopstad & Pedersen, Reidar (2023). Barriers and facilitators to implementing advance care planning in naïve contexts - where to look when plowing new terrain? BMC Geriatrics. 23(1). doi: 10.1186/s12877-023-04060-4. Full text in Research Archive Show summary

  Background Advance care planning (ACP) is a way of applying modern medicine to the principle of patient autonomy and ensuring that patients receive medical care that is consistent with their values, goals and preferences. Robust evidence supports the benefits of ACP, but it remains an underutilized resource in most countries. This paper goes from the naïve point of view, and seeks to identify the barriers and facilitators to implementation in unfamiliarized contexts and in a whole system approach involving the clinical, institutional and policy level to improve the implementation of ACP. Methods Qualitative interviews were chosen to enable an explorative, flexible design. Qualitative interviews were conducted with 40 health care professionals and chief physicians in hospitals and in municipalities. The thematic analysis was done following Braun and Clarke’s strategy for thematic analysis. Results The main reported barriers were the lack of time and space, a lack of culture and leadership legitimizing ACP, lack of common communication systems, and unclear responsibility about who should initiate, resulting in missed opportunities and overtreatment. Policy development, public and professional education, and standardization of documentation were reported as key to facilitate ACP and build trust across the health care system. Conclusions Progressively changing the education of health professionals and the clinical culture are major efforts that need to be tackled to implement ACP in unfamiliarized contexts, particularly in contexts where patient's wishes are not legally binding. This will need to be tackled through rectifying the misconception that ACP is only about death, and providing practical training for health professionals, as well as developing policies and legislation on how to include patients and caregivers in the planning of care.

• Thoresen, Lisbeth; Larsen, Berit Hofset & Rugseth, Gro (2022). Sorting out the ethical aspects? A discussion article on filming in healthcare institutions. Sykepleien Forskning. ISSN 1890-2936. doi: 10.4220/Sykepleienf.2022.88890en. Full text in Research Archive
• Larsen, Marie Hamilton; Mengshoel, Anne Marit; Andersen, Marit Helen; Borge, Christine Råheim; Ahlsen, Birgitte & Dahl, Kari Gire [Show all 15 contributors for this article] (2022). “A bit of everything”: Health literacy interventions in chronic conditions – a systematic review. Patient Education and Counseling. ISSN 0738-3991. 105(10), p. 2999–3016. doi: 10.1016/j.pec.2022.05.008. Full text in Research Archive Show summary

  Objective: To systematically evaluate health literacy (HL) interventions in chronic conditions by exploring theoretical perspectives, intervention content and effectiveness. Method: We searched MEDLINE, Cochrane, CINAHL, EMBASE, ERIC, Web of Science and PsycINFO. Standardised systematic review methods were used, and sequences informing our research question were extracted and analysed. The study includes a descriptive summary of the included papers. Results: We included 39 unique interventions, with diabetes and heart disease as the most targeted chronic conditions. Fifty-four percent of papers included a definition of HL, but the studies showed significant heterogeneity of theoretical underpinnings, modes, measures and content. We identified 23 HL measures, mostly assessing functional HL. The HL interventions were often more complex than the measures indicated. A significant change in HL was found in 28 studies. Study quality was generally poor. Conclusions: Interventions optimizing HL appear important to improve health outcomes in chronic conditions. To ensure cumulative knowledge development of this field we need theory-based interventions, consistency in methods and more tailored and comprehensive measures to capture the interventions’ complexity. Practice implications: A more valid understanding of HL interventions and measurements is needed to reach an agreed understanding of their components and intentions.

• Thoresen, Lisbeth & Rugseth, Gro (2022). "Kommer noen til å dø?" : Om den medierte åpenheten om døden. Tidsskrift for forskning i sygdom og samfund. ISSN 1604-3405. 37(37), p. 43–63. Full text in Research Archive Show summary

  Å være åpen om alvorlig sykdom og død har blitt et normativt og moralsk imperativ. I Norge har den nye åpenheten fått synlig utløp gjennom flere populære dokumentarserier på statskanalen NRK. I artikkelen søker vi å forstå mer av fenomenet åpenhet, slik det spiller seg ut på TV og særlig knyttet til åpenhet om alvorlig sykdom og død. Vi redegjør for noen aktuelle teoretiske perspektiver på åpenheten, før vi beskriver og diskuterer hvordan åpenhet fremstilles i en episode fra NRK-serien Helene sjekker inn. Den aktuelle episoden er fra en hospiceavdeling. Et sentralt poeng fra vår analyse er at mens både NRK og hospicefilosofien argumenterer for betydningen av å være åpen om døden, kan personer som er i livets siste fase fortsatt ha behov for å skjerme seg fra døden som realitet. Gjennom språkbruk, kroppslige gester og aktive handlinger viser både pasienter og ansatte i episoden at åpenhet også har grenser og at døden ikke lar seg fullstendig avdekke, men fortsatt hviler i en form for ikke-viten.

• Trier, Ellen Marie Lykke; Haugland, Trude & Thoresen, Lisbeth (2022). Palliative enheter i de kommunale helse- og omsorgstjenestene – en kartleggingsstudie Palliative Care Units in the Municipal Health and Care Services: A Mapping Study. Tidsskrift for omsorgsforskning. ISSN 2387-5976. 8(3), p. 1–19. doi: 10.18261/tfo.8.3.6. Full text in Research Archive Show summary

  Bakgrunn: Palliative enheter i helse- og omsorgstjenestene i kommunene inngår i det særskilt organiserte palliative tilbudet i Norge. Anbefalt lokalisering, organisering, oppgaver og kompetanse for enheter er beskrevet i Palliasjon i kreftomsorgen – handlingsprogram, Nasjonal faglig retningslinje. Flere helsepolitiske dokumenter etterspør et bedre kunnskapsgrunnlag for palliative tjenester. Hensikten med studien var å kartlegge hvordan lokalisering, organisering, oppgaver og kompetanse i eksisterende palliative enheter samsvarer med anbefalingene. Metode: Beskrivende kartleggingsstudie med bruk av spørreskjema til ledere/ansatte i de 49 palliative enhetene i kommunenes helse- og omsorgstjeneste, som er registrert i Nasjonalt register over palliative virksomheter. Hovedresultater: Studien har svar fra 47 av de 49 kommunene som har registrert en palliativ enhet. Kun en tiendedel av norske kommuner har en palliativ enhet med minstekravet på minimum fire senger. Enhetene er lokalisert i helsehus, bo- og behandlingssentre og på sykehjem. Korttidsopphold til døende pasienter er det mest brukte inntakskriteriet. Bemanningsnormen for sykepleiere og helsefagarbeidere samt for lege er oppfylt i varierende grad. Majoriteten av enhetene har fysioterapeut, og en fjerdedel har prest, men ingen har sosionom som deltar i tverrfaglig teamarbeid. Konklusjon: Lokalisering, organisering, oppgaver og kompetanse i palliative enheter avviker fra anbefalingene i Palliasjon i kreftomsorgen – handlingsprogram, Nasjonal faglig retningslinje. Palliative enheter i helse- og omsorgstjenestene i kommunene utgjør ikke et likeverdig tilbud i hele landet.

• Rivedal, Sunniva; Bondevik, Hilde; Thoresen, Lisbeth & Aasbø, Gunvor (2022). Den sensitiverte kroppen: en fenomenologisk studie av småbarnsmødres omsorgserfaringer og helse. Tidsskrift for kjønnsforskning. ISSN 0809-6341. p. 20–33. doi: 10.18261/tfk.46.1.3. Full text in Research Archive Show summary

  Kvinner som gjennomlever graviditet og spebarnstid har særskilte kroppslige erfaringer. Tidligere forskning på hvordan småbarnsmødre balanserer arbeid ute og hjemme, har på ulike måter belyst dette som en psykososiokulturell konflikt med helsemessige implikasjoner. Målsettingen for denne studien er å benytte kroppsfenomenologiske perspektiver til å utvikle kunnskap om hvordan yrkesaktive småbarnsmødre erfarer sine kropper i den daglige omsorgen for sine barn, og på hvilke måter disse erfaringene kan bidra til større forståelse for småbarnsmødres helse og sårbarhet. Studien er basert på ni kvalitative dybdeintervjuer med utvalgte mødre som arbeidet tilnærmet fulltid og hadde to barnehagebarn hver. Vi studerte det empiriske materialet ved hjelp av en tematisk analyse. I artikkelen utforskes kroppen som omsorgsgrunnlag og kroppslig krysspress gjennom måter «å gjøre» og «å kjenne» kroppslige omsorgserfaringer på. Småbarnsmødrenes kroppslige erfaringer fortolkes som sensitivert kroppslighet overfor barna, og den slitne kroppen fremstår som spesielt sårbar. Den kontinuerlig tilstedeværende og beredte kroppen, sammen med bestrebelser for å likestille foreldrekroppen, betraktes som avgjørende for denne sårbarheten. Gjennom fortolkning og begrepsutvikling i denne studien synliggjøres og økes bevisstheten om forholdet mellom kroppslige omsorgserfaringer, kjønn og helse.

• Thoresen, Lisbeth; Larsen, Berit Hofset & Rugseth, Gro (2022). Etikk ryddet av veien? En diskusjonsartikkel om filming i helseinstitusjoner. Sykepleien Forskning. ISSN 1890-2936. 17. doi: 10.4220/Sykepleienf.2022.88890. Full text in Research Archive Show summary

  Den statseide allmennkringkasteren NRK har hatt stor suksess med dokumentarserier som Helene sjekker inn, Jeg mot meg og Sinnssykt. Her får seerne innblikk i virkelige personers sykdomserfaringer. Som helsefaglige forskere deler vi interessen for pasienters subjektive erfaringer, men vi er også godt kjent med alle de forskningsetiske skrankene som må forseres for å få tilgang til intervjuer med pasienter. Vi har derfor blitt opptatt av hvordan NRK går frem for å få tillatelse fra institusjoner, helsepersonell og pasienter. Hvilke etiske vurderinger gjør ledere og helsepersonell når det gjelder deltakelse i seriene? Hvilke etiske utfordringer diskuteres? Hvordan, og med hvem? Hvordan begrunnes avgjørelser om hvorvidt institusjonen skal delta eller ikke? Vi bruker episoden Helene sjekker inn på hospice som utgangspunkt for en nødvendig diskusjon om de etiske sidene ved journalisters krav om innsyn, åpenhet og ytringsfrihet satt opp mot helsepersonells plikt til å beskytte pasienters personvern og integritet.

• Karlsen, Heidi Marie; Magelssen, Morten & Thoresen, Lisbeth (2022). Etikkdrøftinger i kommunale etikkomiteer – hva bidrar det til? En studie av helsepersonells erfaringer. Nordisk sygeplejeforskning. ISSN 1892-2678. p. 1–14. doi: 10.18261/nsf.12.2.2. Full text in Research Archive
• Thoresen, Lisbeth & Røberg, Anne-Stine Bergquist (2022). The construction of the responsible patient in complex palliative care: interpreting palliative care policies. Palliative Care & Social Practice. 16. doi: 10.1177/26323524221118586. Full text in Research Archive Show summary

  Background: To contribute with knowledge to health policy development, this article presents a critical discourse analysis of two Norwegian official reports on palliative care published in 1999 and 2017. Methods: We identify, describe and discuss how linguistic features in policy documents contribute to and engender a distinct change from 1999 to 2017 in how patients are framed, documenting the development of palliative care. Results: The analysis identifies and considers two interwoven discourses: the discourse of accountability and the discourse of complexity. The patient moves from being described as in need of care, in the 1999 report, to being described as an active and responsible patient making proper choices, in the 2017 report. Conclusion: Result of this policy development might be less involvement of professionals and focus on existential questions, and more responsibility on patients for their prospective wellbeing and health: a change that we argue should be considered and counteracted in upcoming policy processes considering palliative care.

• Werdofa, Hirut Megersa; Lindahl, Anne Karin; Lulseged, Belayneh & Thoresen, Lisbeth (2022). Women’s perspectives on disrespect and abuse experiences during childbirth in a teaching hospital in Southwest Ethiopia: a qualitative study. Sexual and Reproductive Health Matters (SRHM). 30(1). doi: 10.1080/26410397.2022.2088058. Full text in Research Archive Show summary

  There is evidence that women in Ethiopia often face disrespect and abuse in health care facilities during childbirth. Disrespect and abuse (D&A) violate women’s right to dignified, respectful health care and decrease their trust in health care facilities. There is a need for more insight into women’s perspectives on D&A during childbirth in different contexts. Therefore, this study aimed to explore women’s perspectives on D&A during childbirth in a teaching hospital in South-West Ethiopia. A qualitative study was conducted from November 2017 to February 2018 using in-depth interviews and focus group discussions. Postnatal women were purposively chosen and scheduled for interviews six weeks postpartum. Data saturation occurred once 32 women were interviewed, and four focus group discussions were conducted. A thematic analysis method was used to analyse the data using MAXQDA qualitative analysis software. Three main themes emerged from the data: disrespect and abuse, its contributors, and perceived consequences. The subthemes of D&A include neglected care, non-consented care, physical abuse, lack of privacy, loss of autonomy, objectification, lack of companionship, and verbal abuse. The subthemes of contributors include health care provider-related, health care system-related, and women-related contributors. The subthemes of perceived consequences include the fear of using health care facilities. Women in Ethiopia experienced D&A. Health system factors, such as the teaching environment and scarcity of supplies, contribute the most to the identified D&A. Therefore, providers, administrators, training institutions, and researchers must collaborate to address these health system factors to reduce disrespect and abuse during childbirth in teaching hospitals.

• Skilbred, Anette; Solbrække, Kari Nyheim & Thoresen, Lisbeth (2022). Begjær til besvær: en analyse av Solberg-regjeringens strategi for seksuell helse, «Snakk om det!». Norsk sosiologisk tidsskrift. 6(4), p. 1–16. doi: 10.18261/nost.6.4.2. Full text in Research Archive Show summary

  I 2016 la daværende regjering fram en politisk strategi for hvordan Norges befolkning skal få bedre seksuell helse. I denne artikkelen undersøker vi hvilke normer omkring seksualitet og seksuell helse som konstrueres i strategien, og vi argumenterer for at den kan leses som en form for styring av befolkningen i helt bestemte retninger. Styringen er konstituert av to sentrale diskurser strategien fremmer: en grensediskurs og en opplysningsdiskurs. Begge diskursene viser seg å være nært knyttet til andre sosiale og kulturelle strømninger som helse i dag gjerne kobles til, der egenskaper som rasjonalitet og selvkontroll står fram som sentrale verdier, mens mer begjærlige sider av seksualiteten tones ned. Så til tross for at daværende helseminister Bent Høie innledningsvis i strategien påpeker at «Vi snakker fortsatt for lite og for sjelden om at seksualitet er en fantastisk kraft […]», viser vår analyse at strategien inneholder en iboende forståelse av seksualitet som noe borgerne kontinuerlig bør mestre, kontrollere og avgrense, slik at såkalte problemområder som hiv, klamydia, abort og smitte holdes på lang avstand. Dermed kan det virke som om selve intensjonen med strategien ifølge Høie, nemlig å hylle seksualitet som en fantastisk og helsebringende kraft, ender opp i en nokså rasjonell og regissert seksuell praksis.

• Magelssen, Morten; Karlsen, Heidi Marie & Thoresen, Lisbeth (2021). Establishing Clinical Ethics Committees in Primary Care: A Study from Norwegian Municipal Care. HEC Forum. ISSN 0956-2737. p. 1–14. doi: 10.1007/s10730-021-09461-9. Full text in Research Archive Show summary

  Abstract Would primary care services benefit from the aid of a clinical ethics committee (CEC)? The implementation of CECs in primary care in four Norwegian municipalities was supported and their activities followed for 2.5 years. In this study, the CECs’ structure and activities are described, with special emphasis on what characterizes the cases they have discussed. In total, the four CECs discussed 54 cases from primary care services, with the four most common topics being patient autonomy, competence and coercion; professionalism; cooperation and disagreement with next of kin; and priority setting, resource use and quality. Nursing homes and home care were the primary care services most often involved. Next of kin were present in 10 case deliberations, whereas patients were never present. The investigation indicates that it might be feasible for new CECs to attain a high level of activity including case deliberations within the time frame. It also confirms that significant, characteristic and complex moral problems arise in primary care services.

• Sævareid, Trygve Johannes Lereim; Pedersen, Reidar & Thoresen, Lisbeth (2021). Etiske dilemmaer knyttet til avstand og nærhet som følge av covid-19. Omsorg: Nordisk tidsskrift for Palliativ Medisin. ISSN 0800-7489. 38(1), p. 32–36. Full text in Research Archive
• Magelssen, Morten; Pedersen, Reidar; Karlsen, Heidi Marie & Thoresen, Lisbeth (2020). Implementing clinical ethics committees as a complex intervention: presentation of a feasibility study in community care. BMC Medical Ethics. 21(82). doi: 10.1186/s12910-020-00522-1. Full text in Research Archive Show summary

  Background How should clinical ethics support services such as clinical ethics committees (CECs) be implemented and evaluated? We argue that both the CEC itself and the implementation of the CEC should be considered as ‘complex interventions’. Main text We present a research project involving the implementation of CECs in community care in four Norwegian municipalities. We show that when both the CEC and its implementation are considered as complex interventions, important consequences follow – both for implementation and the study thereof. Emphasizing four such sets of consequences, we argue, first, that the complexity of the intervention necessitates small-scale testing before larger-scale implementation and testing is attempted; second, that it is necessary to theorize the intervention in sufficient depth; third, that the identification of casual connections charted in so-called logic models allows the identification of factors that are vital for the intervention to succeed and which must therefore be studied; fourth, that an important part of a feasibility study must be to identify and chart as many as possible of the causally important contextual factors. Conclusion The conceptualization of the implementation of a CEC as a complex intervention shapes the intervention and the way evaluation research should be performed, in several significant ways. We recommend that researchers consider whether a complex intervention approach is called for when studying CESS implementation and impact.

• Holmen, Heidi; Larsen, Marie Hamilton; Sallinen, Merja Helena; Thoresen, Lisbeth; Ahlsen, Birgitte & Andersen, Marit Helen [Show all 10 contributors for this article] (2020). En balansegang: helsepersonells erfaringer med mennesker med kronisk sykdom - en oversiktsartikkel av kvalitative studier. BestPractice nordic. Full text in Research Archive
• Thoresen, Lisbeth & Røberg, Anne-Stine Bergquist (2020). Pasienttilpassede forløp i NOU 2017:16 På liv og død. En kritisk lesning. Omsorg: Nordisk tidsskrift for Palliativ Medisin. ISSN 0800-7489. 2, p. 61–64. Full text in Research Archive
• Holmen, Heidi; Larsen, Marie Hamilton; Sallinen, Merja Helena; Thoresen, Lisbeth; Ahlsen, Birgitte & Andersen, Marit Helen [Show all 10 contributors for this article] (2020). Working with patients suffering from chronic diseases can be a balancing act for health care professionals - a meta-synthesis of qualitative studies. BMC Health Services Research. doi: 10.1186/s12913-019-4826-2. Full text in Research Archive Show summary

  Background: The number of patients with long-term chronic diseases is increasing. These patients place a strain on health care systems and health care professionals (HCPs). Presently, we aimed to systematically review the literature on HCPs’ experiences working with patients with long-term chronic diseases such as type 2 diabetes, chronic obstructive pulmonary disease (COPD), and chronic kidney disease (CKD). Method: A systematic search of papers published between 2002 and July 2019 was conducted in the Embase, AMED, PsycINFO, MEDLINE, CINAHL, and COCHRANE databases to identify studies reporting qualitative interviews addressing HCPs’ experiences working with adults with COPD, CKD or type 2 diabetes. An interdisciplinary research group were involved in all phases of the study. With the help of NVivo, extracts of each paper were coded, and codes were compared across papers and refined using translational analysis. Further codes were clustered in categories that in turn formed overarching themes. Results: Our comprehensive search identified 4170 citations. Of these, 20 papers met our inclusion criteria. Regarding HCPs’ experiences working with patients with COPD, CKD, or type 2 diabetes, we developed 10 subcategories that formed three overarching main themes of work experiences: 1) individualizing one’s professional approach within the clinical encounter; 2) managing one’s emotions over time; 3) working to maintain professionalism. Overall these three themes suggest that HCPs’ work is a complex balancing act depending on the interaction between patient and professional, reality and professional ideals, and contextual support and managing one’s own emotions. Conclusion: Few qualitative studies highlighted HCPs’ general working experiences, as they mainly focused on the patients’ experiences or HCPs’ experiences of using particular clinical procedures. This study brings new insights about the complexity embedded in HCPs’ work in terms of weighing different, often contrasting aspects, in order to deliver appropriate practice. Acknowledging, discussing and supporting this complexity can empower HCPs to avoid burning out. Leaders, health organizations, and educational institutions have a particular responsibility to provide HCPs with thorough professional knowledge and systematic support. Trial registration: PROSPERO number: CRD42019119052.

• Sævareid, Trygve Johannes Lereim; Pedersen, Reidar & Thoresen, Lisbeth (2020). Nursing home residents with cognitive impairment can participate in advance care planning: A qualitative study. Journal of Advanced Nursing. ISSN 0309-2402. 77(2), p. 879–888. doi: 10.1111/jan.14661. Full text in Research Archive Show summary

  Aims: To describe advance care planning in nursing homes when residents with cognitive impairment and/or their next of kin participated and identify associated challenges. Design: A qualitative study of nine advance care planning conversations in four Norwegian nursing home wards. During the implementation of advance care planning, we purposively sampled residents with cognitive impairment, their next of kin and healthcare personnel. The implementation followed a “whole‐ward” approach aimed at involving the whole ward in fostering an inclusive, holistic advance care planning discussion. Involving as many residents as possible, preferably together with their next of kin, were central. Methods: From observed and audio‐recorded advance care planning conversations that took place from November 2015 to June 2016, we conducted a thematic analysis of the transcripts and field notes. Reporting adhered to the COREQ guidelines. Results: Residents actively relayed their preferences regarding healthcare and end‐of‐life issues, despite the cognitive impairment. Next of kin provided constructive support and conversations were largely resident‐focused. However, involving residents was also challenging, findings included: residents’ preferences were often vague, relevant medical information from healthcare personnel lacked and the next of kin were sometimes unaware of the resident's previously held preferences. Moreover, residents tended to focus more on the past and present than the future end‐of‐life care. Conclusions: Residents with cognitive impairment can participate actively and meaningfully in advance care planning, if the healthcare personnel actively listens. However, several challenges can arise. Supported decision‐making can improve communication and resident involvement, reinforcing a relational understanding of autonomy. Impact: Persons with cognitive impairment should be invited to participate in advance care planning. Their participation may make its benefits and more person‐centred care attainable to persons that are often not involved. Successful involvement of persons with cognitive impairment in advance care planning may rely on robust implementation.

• Solli, Karianne Oldertrøen; Boer, Marjolein Lotte De; Solbrække, Kari Nyheim & Thoresen, Lisbeth (2019). Male partners' experiences of caregiving for women with cervical cancer-a qualitative study. Journal of Clinical Nursing (JCN). ISSN 0962-1067. 28(5-6), p. 987–996. doi: 10.1111/jocn.14688. Full text in Research Archive
• Thoresen, Lisbeth; Pedersen, Reidar; Lillemoen, Lillian; Gjerberg, Elisabeth & Førde, Reidun (2019). Advance care planning in Norwegian nursing homes – limited awareness of the residents’ preferences and values? A qualitative study. BMC Geriatrics. 19(1), p. 1–6. doi: 10.1186/s12877-019-1378-6. Full text in Research Archive Show summary

  Background 52% of all deaths in Norway occur in nursing homes. Still advance care planning (ACP) is scarce and heterogeneous. To improve the implementation and practice of ACP in nursing homes, knowledge about health care professionals’ views on ACP is vital. The objective of this study is to explore nurses and physicians’ aims and experiences with carrying out ACP in nursing homes. Methods Semi-structured group interviews were conducted with 20 health care professionals, recruited from nursing homes where ACP was performed regularly. Qualitative content analysis was used to analyse the data. Results The primary aim of the nursing home professionals when doing ACP in nursing homes were to build alliances with next of kin to avoid misunderstandings and future conflicts. Two main experiences with ACP were described: i) due to the sensitivity of ACP issues, it was important to balance directness with being sensitive, and ii) when the physicians raised questions concerning future medical treatment, the answers from residents as well as next of kin were often hesitant and unclear. Conclusion Our study add insights into how ACP is practiced in nursing homes and the professionals’ agenda. A focus on medical issues and achieving consensus with next of kin may result in lack of involvement of the residents and limited awareness of the residents’ needs. Interdisciplinary approaches, ACP-training and tailored guidelines may improve the implementation and practice of ACP.

• Sævareid, Trygve Johannes Lereim; Thoresen, Lisbeth; Gjerberg, Elisabeth; Lillemoen, Lillian & Pedersen, Reidar (2019). Improved patient participation through advance care planning in nursing homes—A cluster randomized clinical trial. Patient Education and Counseling. ISSN 0738-3991. 102, p. 2183–2191. doi: 10.1016/j.pec.2019.06.001. Full text in Research Archive Show summary

  Objective: To improve patient participation in advance care planning in nursing homes where most patients have some degree of cognitive impairment. Methods: This was a pair-matched cluster randomized clinical trial with eight wards in eight Norwegian nursing homes. We randomized one ward from each of the matched pairs to the intervention group. We included all patients above 70. The primary outcome was prevalence of documented patient participation in end-of-life treatment conversations. The intervention included implementation support using a whole-ward approach where regular staff perform advance care planning and invite all patients and next of kin to participate. Results: In intervention group wards the patients participated more often in end-of-life treatment conversations (p < 0.001). Moreover, the patient’s preferences, hopes AND worries (p = 0,006) were more often documented, and concordance between provided TREATMENT and patient preferences (p = 0,037) and next of kin participation in advance care planning with the patient (p = 0,056) increased. Conclusion: Improved patient participation – also when cognitively impaired - is achievable through advance care planning in nursing homes using a whole-ward approach. Practice implications: Patients with cognitive impairment should be included in advance care planning supported by next of kin. A whole-ward approach may be used to implement advance care planning.

• Sævareid, Trygve Johannes Lereim; Førde, Reidun; Thoresen, Lisbeth; Lillemoen, Lillian & Pedersen, Reidar (2019). Significance of advance care planning in nursing homes: views from patients with cognitive impairment, their next of kin, health personnel, and managers. Clinical Interventions in Aging. ISSN 1176-9092. 14, p. 997–1005. doi: 10.2147/CIA.S203298. Full text in Research Archive Show summary

  Purpose: Advance care planning (ACP) performed by regular staff, which also includes patients with cognitive impairment and their next of kin, is scarcely studied. Thus, we planned an implementation study including key stakeholders (patients, next of kin, and health care personnel) using a whole-ward/system approach to ACP. We explored how they experienced ACP and its significance. Patients and methods: This qualitative study is part of a mixed-method implementation study of ACP. In four nursing homes, we did qualitative interviews and audio-recordings of meetings. We completed 20 individual semistructured interviews with participants soon after ACP conversations. The interviews included patients with cognitive impairment, their next of kin, and health care personnel. We also conducted four focus group interviews with staff and managers in the nursing homes and audio-recorded four network meetings with the project teams implementing ACP. Results: All participants appreciated taking part in ACP. Patients and next of kin focused more on the past and present than future treatment preferences. Still, ACP seemed to contribute to a stronger patient focus on end-of-life conversations. More generally, ACP seemed to contribute to valuable information for future decision-making, trusting relations, improved end-of-life communication, and saving time and resources. Conclusion: Safeguarding a strong patient focus on ACP and fostering a person-centered care culture in nursing home wards seem to be achievable through implementation of ACP that includes regular staff, patients with cognitive impairment, and their next of kin.

• Thoresen, Lisbeth (2019). "Kvinder tager sig af det afsjælede Legeme". Et kvinneperspektiv på den andres død. In Gripsrud, Birgitta Haga & Thoresen, Lisbeth (Ed.), Alt som lever må dø : døden som tverrfaglig kunnskapsfelt. Scandinavian Academic Press. ISSN 9788230402344. p. 147–172. Full text in Research Archive
• Gripsrud, Birgitta Haga & Thoresen, Lisbeth (2019). Alt som lever, må dø : døden som tverrfaglig kunnskapsfelt. In Gripsrud, Birgitta Haga & Thoresen, Lisbeth (Ed.), Alt som lever må dø : døden som tverrfaglig kunnskapsfelt. Scandinavian Academic Press. ISSN 9788230402344. p. 9–32. Full text in Research Archive Show summary

  Døden angår oss. Våre dødsforestillinger sier noe om hvem vi er, hvordan vi oppfatter oss selv, og hva som er viktig for oss. Tanatologi er vitenskapen og læren om døden. Den utgjør et voksende tverrfaglig felt internasjonalt. Alt som lever, må dø bidrar til å sette tanatologien på kartet i Norge. Boka springer ut fra et nytt nordisk nettverk av forskere som arbeider med døden fra ulike perspektiver og ulike fag: idéhistorie, filosofi, helsefag, kulturstudier, litteraturvitenskap, psykososiale studier, sosiologi og teologi. Er døden vårt siste tabu, eller snakker vi tvert imot mer om den enn før?I vår tid er døden blitt et medisinsk anliggende som først og fremst håndteres av helsepersonell. Hvordan skal vi forholde oss til døden som enkeltindivider og samfunn?

• Sævareid, Trygve Johannes Lereim; Lillemoen, Lillian; Thoresen, Lisbeth; Førde, Reidun; Gjerberg, Elisabeth & Pedersen, Reidar (2018). Implementing advance care planning in nursing homes - study protocol of a cluster-randomized clinical trial. BMC Geriatrics. 18(1). doi: 10.1186/s12877-018-0869-1. Full text in Research Archive Show summary

  Background Close to half of all deaths in Norway occur in nursing homes, which signals a need for good communication on end-of-life care. Advance care planning (ACP) is one means to that end, but in Norwegian nursing homes, ACP is not common. This paper describes the protocol of a project evaluating an ACP-intervention in Norwegian nursing homes. The aims of this research project were to promote the possibility for conversations about the end of life with patients and relatives; promote patient autonomy; create a better foundation for important decisions in the case of medical emergencies and at the end of life; and gain experiences in order to find out what characterizes good ACP and good implementation strategies. Methods/design This study was a mixed method study including a cluster-randomized clinical trial. Eight nursing home wards or “clusters” were pair-matched, and one ward from each pair was randomly selected for a 12-month intervention. The intervention consisted of implementing an ACP-guideline. Implementation strategies were training and supervision of project teams and staff in using the guideline, written information to patients and next of kin, and information meetings with nursing home staff. The project was evaluated using both quantitative and qualitative data, and both outcome and process evaluation. Quantitative data included patient chart reviews of ACP, diagnoses, patient preferences for decision-making and treatment, values and wishes that are more general, documented life-prolonging treatment and hospitalizations, and concordance between patient wishes and treatment. The primary outcome was documented ACP. Qualitative data included observations of conversations, interviews with patients, next of kin and health care personnel, logs from project coordinators and conversations, and transcripts from meetings with project teams in the intervention group. Discussion This project attempted to increase the quality and use of ACP in Norwegian nursing homes (NH). A mixed methods approach, inclusion of patients with dementia, attempts to involve, as many patients as possible, and a sustainable implementation plan adapted to real life in nursing homes were strengths of the project.

• Thoresen, Lisbeth & Bondevik, Hilde (2018). Jeg steg inn i en annen historie. Om Simone de Beauvoirs bok En lett og rolig død. In Johannessen, Aud; Askeland, Norunn; Jørgensen, Iben Brinch & Ulvestad, Jorun Margrethe (Ed.), Døden i livet. Cappelen Damm Akademisk. ISSN 9788202609597. p. 171–189. doi: 10.23865/noasp.40.ch8. Full text in Research Archive Show summary

  Det er en utbredt oppfatning at døden er lite synlig i vår kultur og at vi snakker lite om den. Utgangspunktet for antologien Døden i livet er å utfordre disse forestillingene fra ulike perspektiv og fagfelt. Forfatterne understreker at døden er til stede i våre liv på mange måter. Vi ser den og opplever den i våre fysiske omgivelser, for eksempel der hvor vi har innrettet oss for å minnes de døde. Vi hører den eller leser om den i taler, dikt, musikalske tekster, salmer, nekrologer, biografier, bildebøker, romaner og avistekster. Vi uttaler oss om død i samtaler med hverandre, i karakteristikker av avdøde og gjennom fagspråk om sykdom og død. Vi viser vår forståelse av døden gjennom visuelle uttrykk som i avisbilder, i bokillustrasjoner og i de språklige bildene og metaforene vi bruker når vi omtaler den. Døden i livet er en tverrfaglig, vitenskapelig antologi. Boken består av 12 fagfellevurderte kapitler og henvender seg til forskere og studenter som har interesse av å sette seg inn i hvordan døden er til stede i vår kultur. Kapitlene er skrevet av forskere fra ulike fagfelt som helsefag, pedagogikk, idéhistorie, religionsvitenskap, litteraturvitenskap, språkvitenskap og retorikk.

• Thoresen, Lisbeth (2018). Forhåndssamtaler og demens – muligheter og utfordringer. Omsorg: Nordisk tidsskrift for Palliativ Medisin. ISSN 0800-7489. p. 46–50. Full text in Research Archive
• Thoresen, Lisbeth (2017). Døden på nordiske sykehjem - medikalisert? In Bondevik, Hilde; Madsen, Ole Jacob & Solbrække, Kari Nyheim (Ed.), Snart er vi alle pasienter. Medikalisering i Norden. Spartacus. ISSN 9788230401859. p. 263–284. Full text in Research Archive
• Thoresen, Lisbeth (2016). Death in Public: Text Analysis of a Newspaper Debate. In Hinerman, Nate & Baumgartner, Holly Lynn (Ed.), Blunt Traumas: Negotiating Suffering and Death. Inter-Disciplinary Press. ISSN 9781848884694. p. 13–22. doi: 10.1163/9781848884694_003. Full text in Research Archive
• Thoresen, Lisbeth & Lillemoen, Lillian (2016). “I just think that we should be informed” - A qualitative study of family involvement in Advance Care Planning in nursing homes. BMC Medical Ethics. 17(1), p. 1–13. doi: 10.1186/s12910-016-0156-7. Full text in Research Archive Show summary

  Background As part of the research project “End-of-life Communication in Nursing Homes. Patient Preferences and Participation”, we have studied how Advance Care Planning (ACP) is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members’ participation and involvement in ACP- conversations may promote nursing home patients’ participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients’ participation in advance care planning. Methods Participant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues. Results We found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives’ involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient’s life at the time. The third analytical theme is patients’ and relatives’ shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death. Conclusions An individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient’s future in the nursing home is to be open to diversity and nuances and to the significance of the patient’s former life and experiences.

• Thoresen, Lisbeth; Ahlzen, Rolf & Solbrække, Kari Nyheim (2016). Advance Care Planning in Norwegian nursing homes-Who is it for? Journal of Aging Studies. ISSN 0890-4065. 38, p. 16–26. doi: 10.1016/j.jaging.2016.04.003. Full text in Research Archive
• Flo, Elisabeth; Husebø, Bettina; Bruusgaard, Pernille; Gjerberg, Elisabeth; Thoresen, Lisbeth & Lillemoen, Lillian [Show all 7 contributors for this article] (2016). A review of the implementation and research strategies of advance care planning in nursing homes. BMC Geriatrics. 16. doi: 10.1186/s12877-016-0179-4. Full text in Research Archive Show summary

  Background Nursing home (NH) patients have complex health problems, disabilities and needs for Advance Care Planning (ACP). The implementation of ACP in NHs is a neglected research topic, yet it may optimize the intervention efficacy, or provide explanations for low efficacy. This scoping review investigates methods, design and outcomes and the implementation of ACP (i.e., themes and guiding questions, setting, facilitators, implementers, and promoters/barriers). Methods A systematic search using ACP MESH terms and keywords was conducted in CINAHL, Medline, PsychINFO, Embase and Cochrane libraries. We excluded studies on home-dwelling and hospital patients, including only specific diagnoses and/or chart-based interventions without conversations. Results Sixteen papers were included. There were large variations in definitions and content of ACP, study design, implementation strategies and outcomes. Often, the ACP intervention or implementation processes were not described in detail. Few studies included patients lacking decision-making capacity, despite the fact that this group is significantly present in most NHs. The chief ACP implementation strategy was education of staff. Among others, ACP improved documentation of and adherence to preferences. Important implementation barriers were non-attending NH physicians, legal challenges and reluctance to participate among personnel and relatives. Conclusion ACP intervention studies in NHs are few and heterogeneous. Variation in ACP definitions may be related to cultural and legal differences. This variation, along with sparse information about procedures, makes it difficult to collate and compare research results. Essential implementation considerations relate to the involvement and education of nurses, physicians and leaders.

• Thoresen, Lisbeth & Öhlén, Joakim (2015). Lived Observations: Linking the Researcher’s Personal Experiences to Knowledge Development. Qualitative Health Research. ISSN 1049-7323. 25(11), p. 1589–1598. doi: 10.1177/1049732315573011. Full text in Research Archive
• Norheim, Kjersti Haugen & Thoresen, Lisbeth (2015). Sykepleiekompetanse i hjemmesykepleien - på rett sted til rett tid? :. Sykepleien Forskning. ISSN 1890-2936. p. 16–22. doi: 10.4220/Sykepleienf.2015.53343. Full text in Research Archive Show summary

  Bakgrunn: Det er bekymring for kompetansenivået i kommunehelsetjenesten etter innføring av samhandlingsreformen. Det foreligger få empiriske studier av reformen og hvordan kompetanseutfordringene er håndtert. Hensikt: Å bidra med kunnskap om tidlige erfaringer med kompetansebehovet i hjemmesykepleien etter innføring av samhandlingsreformen. Metode: To fokusgruppeintervjuer med til sammen elleve sykepleiere, og to individuelle intervjuer med kommunale ledere. Alle informantene var ansatt i samme kommune. Resultat: Utskrivningsklare pasienter oppleves som sykere og mer tidkrevende enn tidligere, men sykepleierne registrerte ingen økning av kompetansekrevende oppgaver. Sykepleiekompetansen ble opplevd som tilfredsstillende, men ikke tilstrekkelig. Samarbeidet mellom ansatte med ulik kompetanse var utfordrende, og sykepleierne opplevde det som vanskelig å få brukt sin kompetanse på rett sted, til rett tid. I tillegg eksisterte det ulik forståelse av hjemmesykepleiens målsettinger og utfordringer. Konklusjon: For å skape det nødvendige handlingsrommet som sykepleierne etterlyser, må de økonomiske rammene økes. God sykepleiekompetanse alene er ikke nok når kvaliteten på tjenesten baserer seg på en gjensidig avhengighet mellom mange ansatte. Kompetansen i hjemmesykepleien må styrkes i alle ledd fordi vi kan forvente en utvikling med flere kompetansekrevende oppgaver. Implementering av samhandlingsreformen og dens idégrunnlag forutsetter en felles forståelse av målsettinger og utfordringer.

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• Thoresen, Lisbeth; Rugseth, Gro & Bondevik, Hilde (2020). Fenomenologi i helsefaglig forskning. Universitetsforlaget. ISBN 9788215028897. 140 p. Full text in Research Archive
• Gripsrud, Birgitta Haga & Thoresen, Lisbeth (2019). Alt som lever må dø : døden som tverrfaglig kunnskapsfelt. Scandinavian Academic Press. ISBN 9788230402344. 286 p. Full text in Research Archive

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• Aurén-Møkleby, Eva Margareta; Aasbø, Gunvor & Thoresen, Lisbeth (2024). Døden på kjøkkenet: om sosial usikkerhet og forskningsetisk skjønn i intervjuer med døende pasienter. In Houge, Anette Bringedal & Kruse, Anja Emilie (Ed.), Etisk ubehag. En ærlig lærebok om kvalitativ forskning på sensitive temaer. Universitetsforlaget. ISSN 9788215068558. Full text in Research Archive
• Plassen, Pål & Thoresen, Lisbeth (2023). Kompass. Spørjetime om dødshjelp. [Radio]. NRK, P2. Full text in Research Archive
• Thoresen, Lisbeth (2023). Fra 'ars moriendi til Stortingsmelding om palliasjon' - hva kjennetegner døden i vår tid? Full text in Research Archive
• Thoresen, Lisbeth (2023). Dødsleiet i nyere norsk skjønnlitteratur. Full text in Research Archive
• Ørbæk, Trine; Engelsrud, Gunn Helene; Råheim, Målfrid & Thoresen, Lisbeth (2023). Til forsvar for mennesket i den digitale tidsalder. Full text in Research Archive
• Engelsrud, Gunn Helene; Råheim, Målfrid; Ørbæk, Trine & Thoresen, Lisbeth (2023). Til forsvar for mennesket i den digitale tidsalder. Full text in Research Archive
• Thoresen, Lisbeth (2022). Ektefellers/partners betydning for hjemmedød. Full text in Research Archive
• Husby, Iselin Glåmen & Thoresen, Lisbeth (2022). "Nå overgir jeg meg helt og holdent til andre": Eldre pasienters erfaringer med ECT-behandling. Tidsskrift for psykisk helsearbeid. ISSN 1503-6707. 19(4), p. 280–290. doi: 10.18261/tph.19.4.8. Full text in Research Archive
• Thoresen, Lisbeth (2022). Cicely og David inntar scenen. Omsorg: Nordisk tidsskrift for Palliativ Medisin. ISSN 0800-7489. 4. Full text in Research Archive
• Thoresen, Lisbeth (2021). Designing open awareness in a hospice ward as represented in a Norwegian TV documentary. Full text in Research Archive
• Thoresen, Lisbeth (2021). Home deaths in Norway. Public debates, policy and real deaths. Full text in Research Archive
• Holmen, Heidi; Mengshoel, Anne Marit; Thoresen, Lisbeth; Larsen, Marie Hamilton; Eik, Hedda & Borge, Christine Råheim (2021). En ubetydelig brikke. Full text in Research Archive
• Thoresen, Lisbeth (2020). Kunsten å dø - før og nå. Presentasjon av kapitlet Kvinneminne. Full text in Research Archive
• Magelssen, Morten; Karlsen, Heidi Marie; Pedersen, Reidar & Thoresen, Lisbeth (2020). Correction to: Implementing clinical ethics committees as a complex intervention: presentation of a feasibility study in community care (BMC Medical Ethics, (2020), 21, 1, (82), 10.1186/s12910-020-00522-1). BMC Medical Ethics. 21(1). doi: 10.1186/s12910-020-00534-x. Full text in Research Archive
• Thoresen, Lisbeth (2019). Mellom åpenhet og etikk. Full text in Research Archive
• Thoresen, Lisbeth (2019). Tøyelig etikk? Om åpenhet om sykdom og helse. Full text in Research Archive
• Thoresen, Lisbeth (2019). Tanatologi - tverrfaglige perspektiver på alvorlig sykdom og død. Full text in Research Archive
• Gripsrud, Birgitta Haga & Thoresen, Lisbeth (2019). Døden lar seg ikke overse. p. 22–22. Full text in Research Archive
• Eriksen, Siren; Thoresen, Lisbeth; Johannessen, Ann Karin; Nordhagen, Vera Kristin Lumkjær; Mortensen, Vidar & Stordalen, Jørn [Show all 7 contributors for this article] (2018). Development of an e-learning program in dementia palliative care for health personnel working in Norwegian municipalities. Full text in Research Archive
• Eriksen, Siren; Johannessen, Ann Karin; Mortensen, Vidar; Nordhagen, Vera Kristin Lumkjær; Thoresen, Lisbeth & Grov, Ellen Karine [Show all 7 contributors for this article] (2018). Palliasjon og demens. Utviklingen av e-læringskurs for sykepleiere og leger. Full text in Research Archive
• Thoresen, Lisbeth (2018). Den er jo litt brutal, den biten der, med spørsmål om alvorlig sykdom og død. Om forhåndssamtaler til personer med demens. Full text in Research Archive
• Thoresen, Lisbeth (2018). Forhåndssamtaler - obligatorisk eller frivillig? Full text in Research Archive
• Thoresen, Lisbeth (2018). What are palliation problems represented to be? Comparing two Norwegian policy documents on palliation. Full text in Research Archive
• Lillemoen, Lillian & Thoresen, Lisbeth (2018). Skal vi snakke om døden? Om innføring og gjennomføring av forhåndssamtaler. Full text in Research Archive
• Lillemoen, Lillian & Thoresen, Lisbeth (2018). Hva når pasienten ikke vil eller kan delta? Full text in Research Archive
• Thoresen, Lisbeth (2017). "Den er jo litt brutal den biten der, med spørsmål om alvorlig sykdom og død" - om forhåndssamtaler for personer med demens. Full text in Research Archive
• Lillemoen, Lillian; Thoresen, Lisbeth; Sævareid, Trygve Johannes Lereim; Gjerberg, Elisabeth; Førde, Reidun & Pedersen, Reidar (2017). Forberedende samtaler ved innleggelse I sykehjem. Full text in Research Archive
• Lillemoen, Lillian; Thoresen, Lisbeth; Sævareid, Trygve Johannes Lereim; Gjerberg, Elisabeth; Førde, Reidun & Pedersen, Reidar (2017). Forberedende samtaler på sykehjem og I allmennpraksis. Full text in Research Archive
• Lillemoen, Lillian; Thoresen, Lisbeth; Sævareid, Trygve Johannes Lereim; Førde, Reidun; Gjerberg, Elisabeth & Pedersen, Reidar (2017). Implementing advance care planning (ACP) in Norwegian nursing homes (NH); Facilitators and barriers. Full text in Research Archive
• Lillemoen, Lillian; Sævareid, Trygve Johannes Lereim; Thoresen, Lisbeth; Gjerberg, Elisabeth; Førde, Reidun & Pedersen, Reidar (2017). Influence of an ACP intervention on documentation of end-of-life issues – a cluster randomized clinical trial. Full text in Research Archive
• Lillemoen, Lillian; Thoresen, Lisbeth; Førde, Reidun; Pedersen, Reidar; Gjerberg, Elisabeth & Johannes, Lerheim Sævareid Trygve (2016). Forberedende samtaler I sykehjem - presentasjon av en intervensjonsstudie. Full text in Research Archive
• Thoresen, Lisbeth & Lillemoen, LIllian (2015). Liverpool Care Pathway – tid for ettertanke? Dagens medisin. ISSN 1501-4290. Full text in Research Archive
• Thoresen, Lisbeth (2015). Oral Presentation, ACPEL 2015. Full text in Research Archive
• Thoresen, Lisbeth & Lillemoen, Lillian (2015). Forhåndssamtaler på sykehjem – erfaringer fra en norsk studie. Full text in Research Archive
• Sævareid, Trygve Johannes Lereim; Thoresen, Lisbeth & Pedersen, Reidar (2015). Developing, implementing and evaluating ACP in Norwegian nursing homes (NHs) - a mixed methods study. Full text in Research Archive
• Thoresen, Lisbeth; Lillemoen, Lillian; Sævareid, Trygve Johannes Lereim; Gjerberg, Elisabeth; Førde, Reidun & Pedersen, Reidar (2015). Å avklare behandling. Full text in Research Archive
• Flo, Elisabeth; Husebø, Bettina; Brusgaard, Pernille; Gjerberg, Elisabeth; Thoresen, Lisbeth & Lillemoen, Lillian [Show all 7 contributors for this article] (2015). Implementation and Research Strategies of Advance Care Planning in Nursing Homes. A Review of the Literature. Full text in Research Archive
• Thoresen, Lisbeth & Dahl, Marianne (2015). Sykepleie til den døende pasienten, Grunnleggende kunnskap i klinisk sykepleie Sykepleieboken 1. Cappelen Damm Akademisk. ISSN 9788202427986. p. 926–960. Full text in Research Archive
• Thoresen, Lisbeth (2014). Death in public: Text analysis of a newspaper debate. Full text in Research Archive
• Thoresen, Lisbeth (2014). Hvis hjemmedød er svaret – hva er spørsmålet? Full text in Research Archive
• Thoresen, Lisbeth (2014). Etiske verdier ved livets slutt. Full text in Research Archive
• Thoresen, Lisbeth (2014). Beslutningsprosesser i livets sluttfase – kan forberedende samtaler med pasient og pårørende bidra til at pasienters ønsker og verdier tas hensyn til når beslutninger skal tas? Full text in Research Archive
• Thoresen, Lisbeth (2014). Grey areas in research ethics at hospices and nursing homes. Full text in Research Archive
• Aurén-Møkleby, Eva Margareta & Thoresen, Lisbeth (2025). At Home - Till Death Do Us Part. A Qualitative Study of Couples’ and Bereaved Spouses’ Experiences of Home Death. Universitetet i Oslo. ISSN 9788234806360. Full text in Research Archive Show summary

  This thesis is situated within the field of palliative and end-of-life care. It explores how couples navigate the preference for home death when one partner is seriously ill with cancer. Although many wish to die at home, the majority in Norway die in healthcare institutions. A key condition for home death is cohabitation with a partner, yet little is known about how this preference is discussed and managed within intimate relationships. The thesis introduces the concept of “end-of-shared-life,” emphasizing that preferences for dying at home are shaped by mutual care, practical considerations, and pragmatism — all of which reflect the dynamics of close relationships, in both life and death. Based on three qualitative sub-studies, including 23 interviews with couples and bereaved spouses, this thesis explores how home death is understood, negotiated, and experienced. Findings show that communication is multifaceted: meaning is conveyed through spoken words, silences, and embodied actions. Couples manage uncertainty through routines and implicit interaction, co-constructing meaning in the face of loss. The home emerges as a sanctuary of continuity and closeness, yet its existential significance is challenged as death approaches. The thesis challenges contemporary ideals of openness surrounding death, illustrating how expectations of “a good death” may conflict with lived realities. Not everyone is willing or able to talk about serious illness and dying. Even when the patient passed away in a healthcare facility, the bereaved regarded institutional care as the most appropriate solution for all involved. This should not be seen as a failure to achieve a home death, but rather as a considered response that attends to the needs and circumstances of everyone affected. The thesis contributes a layered understanding of home death as a relational, negotiated process—guided by love, mutual care, ideals, realities, and the tension between independence and interdependence.

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