Etiske dilemmaer for sykehjemsleger under covid-19-pandemien

Bakgrunn: Sykehjemsbeboere var ekstra sårbare for et alvorlig forløp av covid-19. Tidlig i pandemien ble det derfor bestemt at sykehjemmene måtte beskyttes gjennom tiltak som besøksforbud og testing- og isolasjonsregimer. Dette medførte nye rutiner og retningslinjer for sykehjemsleger. Studier nasjonalt og internasjonalt viser at pandemien ga nye etiske dilemmaer for helsepersonell. Målet med denne studien var å bedre forstå sykehjemslegenes etiske problemstillinger under pandemien. Materiale og metode: Ni semistrukturerte dybdeintervju med sykehjemsleger ved fem sykehjem i Bergen ble analysert med Attride-Stirlings tematiske nettverksanalyse. Resultater: Legene fortalte om utfordringer knyttet til det å bestemme behandlingsnivå, sette grenser for lindrende behandling, tilpasse besøksrestriksjoner, og vurdere tvang ved testing og isolasjon. Dette medførte krevende etiske avveielser, der legene sto overfor interessekonflikter og verdivalg. En sentral avveining var hensynet til den enkelte beboer sett mot fellesskapet. Fortolkning: Sykehjemslegene i vår studie opplevde at det var vanskelig å veie sikring av beboernes autonomi mot hindring av smittespredning. Hovedfunn: Å bestemme behandlingsnivå samt å gi adekvat lindring ved livets sluttfase var krevende. Håndhevelse av besøksrestriksjoner førte til etiske dilemmaer spesielt knyttet til omsorg for døende og kreft- og slagpasienter. Bruk av tvang ved testing og isolasjon for å stoppe smittespredning måtte veies mot hensynet til beboernes autonomi. Et sentralt dilemma var hensynet til den enkelte beboer mot hensynet til fellesskapet.publishedVersio

“The challenge is the complexity” – A qualitative study about decision-making in advanced lung cancer treatment

Introduction The value of shared decision-making and decision aids (DA) has been well documented yet remain difficult to integrate into clinical practice. We wanted to investigate needs and challenges regarding decision-making about advanced lung cancer treatment after first-line therapy, focusing on DA applicability. Methods Qualitative data from separate, semi-structured focus groups with patients/relatives and healthcare professionals were analysed using systematic text condensation. 12 patients with incurable lung cancer, seven relatives, 12 nurses and 18 doctors were recruited from four different hospitals in Norway. Results The participants described the following needs and challenges affecting treatment decisions: 1) Continuity of clinician-patient-relationships as a basic framework for decision-making; 2) barriers to information exchange; 3) negotiation of autonomy; and 4) assessment of uncertainty and how to deal with it. Some clinicians feared DA would steal valuable time and disrupt consultations, arguing that such tools could not incorporate the complexity and uncertainty of decision-making. Patients and relatives reported a need for more information and the possibility both to decline or continue burdensome therapy. Participants welcomed interventions supporting information exchange, like communicative techniques and organizational changes ensuring continuity and more time for dialogue. Doctors called for tools decreasing uncertainty about treatment tolerance and futile therapy. Conclusion Our study suggests it is difficult to develop an applicable DA for advanced lung cancer after first-line therapy that meets the composite requirements of stakeholders. Comprehensive decision support interventions are needed to address organizational structures, communication training including scientific and existential uncertainty, and assessment of frailty and treatment toxicity.publishedVersio

Factors affecting quality of end-of-life hospital care - a qualitative analysis of free text comments from the i-CODE survey in Norway.

BackgroundThe ERANet-LAC CODE (Care Of the Dying Evaluation) international survey assessed quality of care for dying cancer patients in seven countries, by use of the i-CODE questionnaire completed by bereaved relatives. The aim of this sub study was to explore which factors improve or reduce quality of end-of-life (EOL) care from Norwegian relatives' point of view, as expressed in free text comments.Methods194 relatives of cancer patients dying in seven Norwegian hospitals completed the i-CODE questionnaire 6-8 weeks after bereavement; recruitment period 14 months; response rate 58%. Responders were similar to non-responders in terms of demographic details.104 participants (58% spouse/partner) added free text comments, which were analyzed by systematic text condensation.ResultsOf the 104 comments, 45% contained negative descriptions, 27% positive and 23% mixed. 78% described previous experiences, whereas 22% alluded to the last 2 days of life. 64% of the comments represented medical/surgical/oncological wards and 36% palliative care units. Four main categories were developed from the free text comments: 1) Participants described how attentive care towards the practical needs of patients and relatives promoted dignity at the end of life, which could easily be lost when this awareness was missing. 2) They experienced that lack of staff, care continuity, professional competence or healthcare service coordination caused uncertainty and poor symptom alleviation. 3) Inadequate information to patient and family members generated unpredictable and distressing final illness trajectories. 4) Availability and professional support from healthcare providers created safety and enhanced coping in a difficult situation.ConclusionsOur findings suggest that hospitals caring for cancer patients at the end of life and their relatives, should systematically identify and attend to practical needs, as well as address important organizational issues. Education of staff members ought to emphasize how professional conduct and communication fundamentally affect patient care and relatives' coping

Baseline frailty status and outcomes important for shared decision-making in older adults receiving transcatheter aortic valve implantation, a prospective observational study.

AIMS The objective of this study was to examine baseline frailty status (including cognitive deficits) and important clinical outcomes, to inform shared decision-making in older adults receiving transcatheter aortic valve implantation (TAVI). METHODS AND RESULTS We conducted a prospective, observational study of 82 TAVI patients, recruited 2013 to 2015, with 2-year follow-up. Mean age was 83 years (standard deviation (SD) 4.7). Eighteen percent of the patients were frail, as assessed with an 8-item frailty scale. Fifteen patients (18%) had a Mini-Mental Status Examination (MMSE) score below 24 points at baseline, indicating cognitive impairment or dementia and five patients had an MMSE below 20 points. Mean New York Heart Association (NYHA) class at baseline and 6 months was 2.5 (SD 0.6) and 1.4 (SD 0.6), (p < 0.001). There was no change in mean Nottingham Extended Activities of Daily Living (NEADL) scale between baseline and 6 months, 54.2 (SD 11.5) and 54.5 (SD 10.3) points, respectively, mean difference 0.3 (p = 0.7). At 2 years, six patients (7%) had died, four (5%, n = 79) lived in a nursing home, four (5%) suffered from disabling stroke, and six (7%) contracted infective endocarditis. CONCLUSIONS TAVI patients had improvement in symptoms and maintenance of activity of daily living at 6 months. They had low mortality and most patients lived in their own home 2 years after TAVI. Complications like death, stroke, and endocarditis occurred. Some patients had cognitive impairment before the procedure which might influence decision-making. Our findings may be used to develop pre-TAVI decision aids

Hope in action—facing cardiac death: A qualitative study of patients with life-threatening disease

Coping with existential challenges is important when struck by serious disease, but apart from cancer and palliative care little is known about how patients deal with such issues and maintain hope. To explore how patients with life-threatening heart disease experience hope when coping with mortality and other existential challenges, we conducted a qualitative study with semi-structured interviews. We made a purposive sample of 11 participants (26–88 years) who had experienced life-threatening disease: eight participants with serious heart disease, two with cancer, and one with severe chronic obstructive pulmonary disease. Analysis was by systematic text condensation. The findings showed that hope could enhance coping and diminish existential distress when patients were confronted with mortality and other existential challenges. Hope was observed as three types of dynamic work: to shift perception of mortality from overwhelming horror toward suppression or peaceful acceptance, to foster reconciliation instead of uncertainty when adapting to the new phase of life, and to establish go-ahead spirit instead of resignation as their identity. Meaning of life could, hence, be sustained in spite of serious threats to the persons' future, everyday life, and self-conception. The work of hoping could be supported or disturbed by relationships with family, friends, and health care professionals. Hope can be regarded as an active, dynamic state of existential coping among patients with life-threatening disease. Physicians may support this coping and thereby provide personal growth and alleviation of existential distress by skillfully identifying, acknowledging, and participating in the work of hoping performed by the patient

Å dele uvissa og ansvaret. Ein kvalitativ studie av livets grunnvilkår i medisinsk praksis

Existential challenges affect both patients and doctors in clinical practice. The aims of this study have been to explore how patients and doctors experience and cope with existential aspects of being struck by and treating serious disease, respectively, and to examine how existential challenges affect doctor-patient-interactions and decisionmaking processes. We conducted three empirical sub studies with two different qualitative designs: two interview studies and one observational study. We performed qualitative, semi-structured interviews with 10 doctors and 11 patients, and made observations from 10 doctor-patient conversations preceding high-risk cardiac surgery or intervention. Analysis was done by Systematic text condensation, inspired by Giorgi`s method, and pragmatic linguistics. The analysis demonstrated how experiences among patients and doctors can be taken care of and acknowledged in the medical culture. Both patients and doctors experienced standing on their own when facing existential challenges like uncertainty, mortality and responsibility. Existential loneliness could be increased by institutional isolation. Responsibility was experienced as rewarding and created identity, but comprised a particular vulnerability. A broad spectrum of coping strategies was demonstrated in the battle of dealing with these experiences: a positive focus, creating meaning, hope and trust. The ambiguous position of death in medical everyday practice was underlined by mortality being simultaneously acceptable and unacceptable, closely and distantly present. A destiny community for better or worse was described as fundamental in this respect both by patients and doctors. The doctors experienced a continuum from strong support to being let down by their colleagues, and the patients had relations which under given circumstances could be either caring or painful. Sharing the uncertainty and responsibility were means by which doctors and patients could create a supporting alliance in extreme situations where one of them risked losing his or her life and the other risked taking it while trying to save it. Assessing knowledge about preconditions for different outcomes was of great importance in this context. Unalterable fundamental conditions of existence effect patients’ and doctors’ quality of life, interaction and decisions in ways which have clinical consequences, for instance how they experience powerlessness and develop coping strategies. Doctors should elicit existential perspectives in conversations comprising decisions concerning serious disease to improve the quality of informed consent and shared decision-making, because this has importance for the understanding of choices and preferences. Coping strategies aimed at fundamental conditions of existence like mortality, vulnerability and existential loneliness are important to identify among patients and doctors who are struck by or treating life-threatening disease respectively, in order to assess the need for supportive interventions like individual or group conversations. Educational institutions and work places should have an increased focus on the development of doctors’ professional identity and how one can deal with the vulnerable responsibility inherent in the doctor’s role in order to improve working conditions and enhance professional identity

Improving decision-making and patient trajectories in advanced lung cancer treatment

A multicenter implementation stud

Drug treatment at the end of life: An epidemiologic study in nursing homes

Objective. To examine drug treatment in nursing home patients at the end of life, and identify predictors of palliative drug therapy. Design. A historical cohort study. Setting. Three urban nursing homes in Norway. Subjects. All patients admitted from January 2008 and deceased before February 2013. Main outcome measures. Drug prescriptions, diagnoses, and demographic data were collected from electronic patient records. Palliative end-of-life drug treatment was defined on the basis of indication, drug, and formulation. Results. 524 patients were included, median (range) age at death 86 (19–104) years, 59% women. On the day of death, 99.4% of the study population had active prescriptions; 74.2% had palliative drugs either alone (26.9%) or concomitantly with curative/preventive drugs (47.3%). Palliative drugs were associated with nursing home, length of stay > 16 months (AOR 2.10, 95% CI 1.12–3.94), age (1.03, 1.005–1.05), and a diagnosis of cancer (2.12, 1.19–3.76). Most initiations of palliative drugs and withdrawals of curative/preventive drugs took place on the day of death. Conclusion. Palliative drug therapy and drug therapy changes are common for nursing home patients on the last day of life. Improvements in end-of-life care in nursing homes imply addressing prognostication and earlier response to palliative needs

‘‘So you think I’ll survive?’’: a qualitative study about doctor-patient dialogues preceding high-risk cardiac surgery or intervention

Objective: To explore doctor-patient interactions and decision-making processes before high-risk cardiac surgery or intervention with special attention to existential challenges. Design, setting and participants: We conducted a qualitative study with data drawn from doctor-patient dialogues preceding high-risk procedures. The study setting was the cardiac department of a university hospital with 24-hour emergency service. We recruited a purposive sample of 10 patients and eight doctors. The patients were categorised as high-risk patients in accordance with EuroSCORE and established angiographic procedural high-risk criteria. Transcripts from the dialogues were analysed with systematic text condensation, inspired by discourse analysis. Main outcome measure: Accounts of doctor-patient interaction reflecting existential aspects of the decisionmaking process. Results: The main existential concerns identified in the doctor-patient interactions were surviving uncertainty, negotiating responsibility and trusting the doctor’s proficiency. When handling uncertainty, doctors imparted complex information about risk, warnings and recommendations, while patients sought and trusted the doctors’ advice. Though the decisions were made in asymmetrical power relations, they were based on a shared responsibility discussed and defined throughout the dialogues. The patients expressed a profound confidence in the doctor’s ability to get them through the high-risk treatment and give the best help possible. Conclusions: Uncertainty, mortality, responsibility and trust are fundamental existential issues concerning both patients and doctors before high-risk procedures, with an impact on decision-making processes. Increasing focus on underlying existential conditions, ethical reasoning and power relations in medical education may improve the quality of shared decision-making and informed consent related to high-risk treatment

‘‘If you cannot tolerate that risk, you should never become a physician’’: a qualitative study about existential experiences among physicians

Background and objectives: Physicians are exposed to matters of existential character at work, but little is known about the personal impact of such issues. Methods: To explore how physicians experience and cope with existential aspects of their clinical work and how such experiences affect their professional identities, a qualitative study using individual semistructured interviews has analysed accounts of their experiences related to coping with such challenges. Analysis was by systematic text condensation. The purposeful sample comprised 10 physicians (including three women), aged 33–66 years, residents or specialists in cardiology or cardiothoracic surgery, working in a university hospital with 24-hour emergency service and one general practitioner. Results: Participants described a process by which they were able to develop a capacity for coping with the existential challenges at work. After episodes perceived as shocking or horrible earlier in their career, they at present said that they could deal with death and mostly keep it at a distance. Vulnerability was closely linked to professional responsibility and identity, perceived as a burden to be handled. These demands were balanced by an experience of meaning related to their job, connected to making a difference in their patients’ lives. Belonging to a community of their fellows was a presupposition for coping with the loneliness and powerlessness related to their vulnerable professional position. Conclusions: Physicians’ vulnerability facing life and death has been underestimated. Belonging to caring communities may assist growth and coping on exposure to existential aspects of clinical work and developing a professional identity