Den gylne regel for prioritering av rusbehandling og psykisk helsevern – en kvalitativ studie

BAKGRUNN Det har i mange år vært bred politisk enighet om å prioritere rusbehandling og psykisk helsevern i spesialisthelsetjenesten. Mellom 2014 og 2021 gjaldt «den gylne regel», som innebar at det skulle være en høyere relativ vekst innenfor psykisk helsevern og tverrfaglig spesialisert rusbehandling enn i somatiske helsetjenester. Formålet med denne studien var å undersøke forståelsen av den gylne regels rolle i prioritering av ressurser til rus- og psykiatrifeltet i spesialisthelsetjenesten blant norske helseledere og -byråkrater. MATERIALE OG METODE Studien baser seg på en ettårig etnografisk studie av prioriteringer i norske helseforetak og -byråkrati. Dokumenter, møteobservasjoner og tolv kvalitative dybdeintervju ble analysert med kvalitativ diskursiv metode. RESULTATER Den gylne regel bidro til økt satsning på rusbehandling og psykisk helsevern i helseforetakene, ifølge helseledere. Samtidig var den gylne regel kun en av mange konkurrerende og tidvis motstridende føringer de måtte ta hensyn til. Mange drivere motvirket en større vekst innenfor rusbehandling og psykisk helsevern enn i somatikken. Flere tok til orde for at den gylne regel var et umulig oppdrag. Ufullstendig måloppnåelse ble forklart med demografisk utvikling, finansieringsordninger og manglende oppfølging av regelen. FORTOLKNING Helseprioriteringer gjennomføres i institusjoner som ivaretar mange politiske interesser og samfunnsoppdrag. Funnene i studien illustrerer kompleksiteten når politiske prioriteringer skal gjennomføres i praksis.publishedVersio

Clinical ethics dilemmas in a low-income setting - a national survey among physicians in Ethiopia

Background Ethical dilemmas are part of medicine, but the type of challenges, the frequency of their occurrence and the nuances in the difficulties have not been systematically studied in low-income settings. The objective of this paper was to map out the ethical dilemmas from the perspective of Ethiopian physicians working in public hospitals. Method A national survey of physicians from 49 public hospitals using stratified, multi-stage sampling was conducted in six of the 11 regions in Ethiopia. Descriptive statistics were used and the responses to the open-ended question “If you have experienced any ethical dilemma, can you please describe a dilemma you have encountered in your own words?” were analyzed using a template analysis process. Results A total of 587 physicians responded (response rate 91,7%), and 565 met the inclusion criteria. Twelve of 24 specified ethically challenging situations were reported to be experienced often or sometimes by more than 50% of the physicians. The most frequently reported challenge concerned resource distribution: 93% agreed that they often or sometimes had to make difficult choices due to resource limitation, and 83% often or sometimes encountered difficulties because patients were unable to pay for the preferred course of treatment. Other frequently reported difficulties were doubts about doing good or harming the patient, relating to conflicting views, concern for family welfare, disclosure issues and caring for patients not able to consent. Few reported dilemmas related to end-of-life issues. The 200 responses to the open-ended question mirrored the quantitative results. Discussion Ethiopian physicians report ethical challenges related more to bedside rationing and fairness concerns than futility discussions and conflicts about autonomy as described in studies from high-income countries. In addition to the high report of experienced challenges, gravity of the dilemmas that are present in their narratives are striking. Recognition of the everyday experiences of physicians in low-income settings should prompt the development of ethics teaching and support mechanisms, discussion of ethical guidelines as well as increase our focus on how to improve the grave resource scarcity they describe.publishedVersio

Importance of systematic deliberation and stakeholder presence: A national study of clinical ethics committees

Background: Case consultation performed by clinical ethics committees (CECs) is a complex activity which should be evaluated. Several evaluation studies have reported stakeholder satisfaction in single institutions. The present study was conducted nationwide and compares clinicians’ evaluations on a range of aspects with the CEC’s own evaluation. Methods: Prospective questionnaire study involving case consultations at 19 Norwegian CECs for 1 year, where consultations were evaluated by CECs and clinicians who had participated. Results: Evaluations of 64 case consultations were received. Cases were complex with multiple ethical problems intertwined. Clinicians rated the average CEC consult highly, being both satisfied with the process and perceiving it to be useful across a number of aspects. CEC evaluations corresponded well with those of clinicians in a large majority of cases. Having next of kin/patients present was experienced as predominantly positive, though practised by only half of the CECs. The educational function of the consult was evaluated more positively when the CEC used a systematic deliberation method. Conclusions: CEC case consultation was found to be a useful service. The study is also a favourable evaluation of the Norwegian CEC system, implying that it is feasible to implement well-functioning CECs on a large scale. There are good reasons to involve the stakeholders in the consultations as a main rule.acceptedVersio

“Death audit is a fight” – provider perspectives on the ethics of the Maternal and Perinatal Death Surveillance and Response (MPDSR) system in Ethiopia

Background Maternal and neonatal health are regarded as important indicators of health in most countries. Death auditing through, for example, the Maternal and Perinatal Death Surveillance and Response (MPDSR) is viewed as key to preventing maternal and newborn mortality. However, little is known about the implications of implementing perinatal auditing for healthcare professionals in low-income contexts. This study aimed to explore the ethical and practical consequences clinicians experience concerning MPDSR reporting practices in Ethiopia. Methods Qualitative semi-structured in-depth individual interviews were conducted with 16 healthcare workers across professions at selected facilities in Ethiopia. The interview questions were related to clinicians’ experiences with, and perceptions of, death auditing. Their strategies for coping with newborn losses and the related reporting practices were also explored. The material was analyzed following systematic text condensation, and the NVivo11 software was used for organizing and coding the data material. Results Participants experienced fear of punishment and blame in relation to the perinatal death auditing process. They found that auditing did not contribute to reducing perinatal deaths and that their motivation to stick to the obligation was negatively affected by this. Performing audits without available resources to provide optimal care or support in the current system was perceived as unfair. Some hid information or misreported information in order to avoid accusations of misconduct when they felt they were not to blame for the baby’s death. Coping strategies such as engaging in exceedingly larger work efforts, overtreating patients, or avoiding complicated medical cases were described. Conclusions Experiencing perinatal death and death reporting constitutes a double burden for the involved healthcare workers. The preventability of perinatal death is perceived as context-dependent, and both clinicians and the healthcare system would benefit from a safe and blame-free reporting environment. To support these healthcare workers in a challenging clinical reality, guidelines and action plans that are specific to the Ethiopian context are needed.publishedVersio

‘I wanted to go, but they said wait’: Mothers’ bargaining power and strategies in careseeking for ill newborns in Ethiopia

Introduction To prevent the 2.6 million newborn deaths occurring worldwide every year, health system improvements and changes in care-taker behaviour are necessary. Mothers are commonly assumed to be of particular importance in care-seeking for ill babies; however, few studies have investigated their participation in these processes. This study explores mothers’ roles in decision making and strategies in care-seeking for newborns falling ill in Ethiopia. Methods A qualitative study was conducted in Butajira, Ethiopia. Data were collected during the autumn of 2015 and comprised 41 interviews and seven focus group discussions. Participants included primary care-takers who had experienced recent newborn illness or death, health care workers and community members. Data were analysed using thematic analysis. Results Choices about whether, where and how to seek care for ill newborns were made through cooperation and negotiation among household members. Mothers were considered the ones that initially identified or recognised illness, but their actual opportunities to seek care were bounded by structural and cultural constraints. Mothers’ limited bargaining power, contained by financial resources and gendered decision making, shaped their roles in care-seeking. We identified three strategies mothers took on in decision making for newborn illness: (a) acceptance and adaptation (to the lack of options), (b) negotiation and avoidance of advice from others, and (c) active care-seeking and opposition against the husband’s or community’s advice. Conclusion While the literature on newborn health and parenting emphasizes the key role of mothers in care-seeking, their actual opportunities to seek care are shaped by factors commonly beyond their control. Efforts to promote care-seeking for ill children should recognise that mothers’ capabilities to make decisions are embedded in gendered social processes and financial power structures. Thus, policies should not only target individual mothers, but the wider decision making group, including the head of households and extended family.publishedVersio

Bedside rationing and moral distress in nephrologists in sub- Saharan Africa

Background Kidney diseases constitute an important proportion of the non-communicable disease (NCD) burden in Sub-Saharan Africa (SSA), though prevention, diagnosis and treatment of kidney diseases are less prioritized in public health budgets than other high-burden NCDs. Dialysis is not considered cost-effective, and for those patients accessing the limited service available, high out-of-pocket expenses are common and few continue care over time. This study assessed challenges faced by nephrologists in SSA who manage patients needing dialysis. The specific focus was to investigate if and how physicians respond to bedside rationing situations. Methods A survey was conducted among a randomly selected group of nephrologists from SSA. The questionnaire was based on a previously validated survey instrument. A descriptive and narrative approach was used for analysis. Results Among 40 respondents, the majority saw patients weekly with acute kidney injury (AKI) or end-stage kidney failure (ESKF) in need of dialysis whom they could not dialyze. When dialysis was provided, clinical compromises were common, and 66% of nephrologists reported lack of basic diagnostics and medication and > 80% reported high out-of-pocket expenses for patients. Several patient-, disease- and institutional factors influenced who got access to dialysis. Patients’ financial constraints and poor chances of survival limited the likelihood of receiving dialysis (reported by 79 and 78% of nephrologists respectively), while a patient’s being the family bread-winner increased the likelihood (reported by 56%). Patient and institutional constraints resulted in most nephrologists (88%) frequently having to make difficult choices, sometimes having to choose between patients. Few reported existence of priority setting guidelines. Most nephrologists (74%) always, often or sometimes felt burdened by ethical dilemmas and worried about patients out of hospital hours. As a consequence, almost 46% of nephrologists reported frequently regretting their choice of profession and 26% had considered leaving the country. Conclusion Nephrologists in SSA face harsh priority setting at the bedside without available guidance. The moral distress is high. While publicly funded dialysis treatment might not be prioritized in essential health care packages on the path to universal health coverage, the suffering of the patients, families and the providers must be acknowledged and addressed to increase fairness in these decisions

Selling my sheep to pay for medicines – household priorities and coping strategies in a setting without universal health coverage

Background: The first month of life is the period with the highest risk of dying. Despite knowledge of effective interventions, newborn mortality is high and utilization of health care services remains low in Ethiopia. In settings without universal health coverage, the economy of a household is vulnerable to illness, and out-of-pocket payments may limit families’ opportunities to seek health care for newborns. In this paper we explore intra-household resource allocation, focusing on how families prioritize newborn health versus other household needs and their coping strategies for managing these priorities. Methods: A qualitative study was conducted in 2015 in Butajira, Ethiopia, comprising observation, semi-structured interviews, and focus group discussions with household members, health workers, and community members. Household members with hospitalized newborns or who had experienced neonatal death were primary informants. Results: In this predominantly rural and poor district, households struggled to pay out-of-pocket for services such as admission, diagnostics, drugs, and transportation. When newborns fell ill, families made hard choices balancing concerns for newborn health and other household needs. The ability to seek care, obtain services, and follow medical advice depended on the social and economic assets of the household. It was common to borrow money from friends and family, or even to sell a sheep or the harvest, if necessary. In managing household priorities and high costs, families waited before seeking health care, or used cheaper traditional medicines. For poor families with no money or opportunity to borrow, it became impossible to follow medical advice or even seek care in the first place. This had fatal health consequences for the sick newborns. Conclusions: While improving neonatal health is prioritized at policy level in Ethiopia, poor households with sick neonates may prioritize differently. With limited money at hand and high direct health care costs, families balanced conflicting concerns to newborn health and family welfare. We argue that families should not be left in situations where they have to choose between survival of the newborn and economic ruin. Protection against out-of-pocket spending is key as Ethiopia moves towards universal health coverage. A necessary step is to provide prioritized newborn health care services free of charge.publishedVersio

Financial risk protection at the bedside: How Ethiopian physicians try to minimize out-of-pocket health expenditures

Background: Out-of-pocket health expenditures can pose major financial risks, create access-barriers and drive patients and families into poverty. Little is known about physicians’ role in financial protection of patients and families at the bedside in low-income settings and how they perceive their roles and duties when treating patients in a health care system requiring high out-of-pocket costs. Objective: Assess physicians’ concerns regarding financial welfare of patients and their families and analyze physicians’ experiences in reducing catastrophic health expenditures for patients in Ethiopia. Method: A national survey was conducted among physicians at 49 public hospitals in six regions in Ethiopia. Descriptive statistics were used. Results: Totally 587 physicians responded (response rate 91%) and 565 filled the inclusion criteria. Health care costs driving people into financial crisis and poverty were witnessed by 82% of respondants, and 88% reported that costs for the patient are important when deciding to use or not use an intervention. Several strategies to save costs for patients were used: 37–79% of physicians were doing this daily or weekly through limiting prescription of drugs, limiting radiologic studies, ultrasound and lab tests, providing second best treatments, and avoiding admission or initiating early discharge. Overall, 75% of the physicians reported that ongoing and future costs to patients influenced their decisions to a greater extent than concerns for preserving hospital resources. Conclusion: In Ethiopia, a low-income country aiming to move towards universal health coverage, physicians view themselves as both stewards of public resources, patient advocates and financial protectors of patients and their families. Their high concern for family welfare should be acknowledged and the economic and ethical implications of this practice must be further explored.publishedVersio

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

Country contextualisation of cost-effectiveness studies: lessons from Ethiopia

Emerging demographic, epidemiological and health system changes in low-income countries require revisions of national essential health services packages in accordance with standard healthcare priority setting methods. Policy makers are in need of explicit and user-friendly methods to compare impact of multiple interventions. We provide experiences of country contextualisation of WHO-CHOICE methods and models to a country level. Results from three contextualised cost-effectiveness analyses (CEAs) are presented, and we discuss how this evidence can inform priority setting in Ethiopia. Existing models for a range of interventions in obstetric and neonatal care, psychiatric and neurological treatment and prevention and treatment of cardiovascular diseases are contextualised to the Ethiopian setting. CEAs are defined as contextualised if they include national analysts and use country-specific input for either costs, epidemiology, demography, baseline coverage or effects. Interventions (n=61) are ranked according to incremental cost-effectiveness rates (ICERs), and expected health outcomes (Disability Adjusted Life Years (DALYs) averted) and budget impacts are presented for each intervention. Dominated interventions (n=30) were excluded. A USD2.8 increase per capita in the annual health budget is needed in Ethiopia (currently at USD28 per capita) for increasing coverage by 20%–75% for all the 22 interventions with positive net health benefits. This investment is expected to give a net benefit at around 0.5 million DALYs averted in return in total, with a willingness to pay threshold at USD2000 per DALY averted. In particular, three interventions, neonatal resuscitation, kangaroo mother care and antibiotics for newborn sepsis, stand out as best buys in an Ethiopian setting. Our method of contextualised CEAs provides important information for policy makers. Rank ordering of interventions by ICERs, together with presentations of expected budget impact and net health benefits, is a clear and policy friendly illustration of possible efficient stepwise pathways towards universal health coverage.publishedVersio