Ethical challenges in home mechanical ventilation : A secondary analysis

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Ethical challenges in tracheostomy-assisted ventilation in amyotrophic lateral sclerosis

Author's accepted version (post-print).This is a post-peer-review, pre-copyedit version of an article published in Journal of Neurology. The final authenticated version is available online at: http://dx.doi.org/10.1007/s00415-018-9054-x.Available from 15/09/2019.acceptedVersio

Why does the provision of home mechanical ventilation vary so widely?

There is wide variation in the provision of home mechanical ventilation (HMV) throughout Europe, but the provision of home mechanical ventilation can also vary within countries. In 2008, the overall prevalence of HMV in Norway was 19.9/100,000, and there were huge regional differences in treatment prevalence. The aim of this study is to find explanations for these differences. We gathered multidisciplinary respondents involved in HMV treatment from five hospitals in five different counties to six focus group conversations to explore respondents' views of their experiences systematically. We based the analysis on grounded theory. We found that uneven distribution of “enthusiasm” between hospitals seems to be an important factor in the geographical distribution of HMV. Furthermore, we found that the three subcategories, “high competence,” “spreading competence,” and “multidisciplinary collaboration,” are developed and used systematically in counties with “enthusiasm.” This culture is the main category, which might explain the differences, and is described as “wise enthusiasm.” The last subcategory is “individual attitudes” about HMV among decision-making physicians. The most important factor is most likely the uneven distribution of highly skilled enthusiasm between hospitals. Individual attitudes about HMV among the decision makers may also explain why the provision of HMV varies so widely. Data describing regional differences in the prevalence of HMV within countries is lacking. Further research is needed to identify these differences to ensure equality of provision of HMV

Open chest and pericardium facilitate transpulmonary passage of venous air emboli

Background: Transpulmonary passage of air emboli can lead to fatal brain- and myocardial infarctions. We studied whether pigs with open chest and pericardium had a greater transpulmonary passage of venous air emboli than pigs with closed thorax. Methods: We allocated pigs with verified closed foramen ovale to venous air infusion with either open chest with sternotomy and opening of the pleura and pericardium (n = 8) or closed thorax (n = 16). All pigs received a five-hour intravenous infusion of ambient air, starting at 4-6 mL/kg/h and increased by 2 mL/kg/h each hour. We assessed transpulmonary air passage by transesophageal M-mode echocardiography and present the results as median with inter-quartile range (IQR). Results: Transpulmonary air passage occurred in all pigs with open chest and pericardium and in nine pigs with closed thorax (56%). Compared to pigs with closed thorax, pigs with open chest and pericardium had a shorter to air passage (10 minutes (5-16) vs. 120 minutes (44-212), P < .0001), a smaller volume of infused air at the time of transpulmonary passage (12 mL (10-23) vs.170 mL (107-494), P < .0001), shorter time to death (122 minutes (48-185) vs 263 minutes (248-300, P = .0005) and a smaller volume of infused air at the time of death (264 mL (53-466) vs 727 mL (564-968), P = .001). In pigs with open chest and, infused air and time to death correlated strongly (r = 0.95, P = .001). Conclusion: Open chest and pericardium facilitated the transpulmonary passage of intravenously infused air in pigs

"Fighting the system": Families caring for ventilator-dependent children and adults with complex health care needs at home

<p>Abstract</p> <p>Background</p> <p>An increasing number of individuals with complex health care needs now receive life-long and life-prolonging ventilatory support at home. Family members often take on the role of primary caregivers. The aim of this study was to explore the experiences of families giving advanced care to family members dependent on home mechanical ventilation.</p> <p>Methods</p> <p>Using qualitative research methods, a Grounded Theory influenced approach was used to explore the families' experiences. A total of 15 family members with 11 ventilator-dependent individuals (three children and eight adults) were recruited for 10 in-depth interviews.</p> <p>Results</p> <p>The core category, "fighting the system," became the central theme as family members were asked to describe their experiences. In addition, we identified three subcategories, "lack of competence and continuity", "being indispensable" and "worth fighting for". This study revealed no major differences in the families' experiences that were dependent on whether the ventilator-dependent individual was a child or an adult.</p> <p>Conclusions</p> <p>These findings show that there is a large gap between family members' expectations and what the community health care services are able to provide, even when almost unlimited resources are available. A number of measures are needed to reduce the burden on these family members and to make hospital care at home possible. In the future, the gap between what the health care can potentially provide and what they can provide in real life will rapidly increase. New proposals to limit the extremely costly provision of home mechanical ventilation in Norway will trigger new ethical dilemmas that should be studied further.</p

Home mechanical ventilation and specialised health care in the community: Between a rock and a hard place

<p>Abstract</p> <p>Background</p> <p>Home mechanical ventilation probably represents the most advanced and complicated type of medical treatment provisioned outside a hospital setting. The aim of this study was both to explore the challenges experienced by health care professionals in community health care services when caring for patients dependent on home mechanical ventilation, continual care and highly advanced technology, and their proposed solutions to these challenges.</p> <p>Methods</p> <p>Using qualitative research methods, a grounded theory influenced approach was used to explore the respondents' experiences and proposed solutions. A total of 34 multidisciplinary respondents from five different communities in Norway were recruited for five focus groups.</p> <p>Results</p> <p>The core category in our findings was what health care professionals in community health care services experience as "between a rock and a hard place," when working with hospitals, family members, and patients. We further identified four subcategories, "to be a guest in the patient's home," "to be accepted or not," "who decides," and "how much can we take." The main background for these challenges seems to stem from patients living and receiving care in their private homes, which often leads to conflicts with family members. These challenges can have a negative effect on both the community health caregivers' work environment and the community health service's provision of professional care.</p> <p>Conclusions</p> <p>This study has identified that care of individuals with complex needs and dependent on home mechanical ventilation presents a wide range of immense challenges for community health care services. The results of this study point towards a need to define the roles of family caregivers and health care professionals and also to find solutions to improve their collaboration. The need to improve the work environment for caregivers directly involved in home-care also exists. The study also shows the need for more dialogue concerning eligibility requirements, rights, and limitations of patients in the provision and use of ventilatory support in private homes.</p

Hjemmerespiratorbehandling "Mellom barken og veden" En kvalitativ studie av intensivbehandling i hjemmet

Helsepersonell i sykehus, familiemedlemmer og helsepersonell i kommunehelsetjenesten er kritisk viktige for gjennomføringen av hjemmerespiratorbehandling, både i sykehus og i pasientens hjem. Derfor studerte vi deres erfaringer. Vi gjennomførte 11 fokusgrupper og 10 dybdeintervju. Vi fant at ulik fordeling av entusiastiske leger og sykepleiere mellom norske sykehus var hovedårsaken til de store geografiske ulikhetene i hjemmerespiratortilbudet. Familienes største utfordring var kampen mot systemet, det vil si kampen mot kommunehelsetjenesten. De opplevde å være uunnværlige fordi deres egen ekspertise var nødvendig for å sikre den nødvendige kvaliteten på omsorgen. Kommunehelsetjenestens hovedutfordring var å være mellom barken og veden. Helsepersonellet opplevde å være gjest i pasientens hjem og det var ofte konflikter med familiemedlemmer. Vi fant en rekke temaområder relatert til etiske dilemmaer. Disse var nært knyttet til de fire grunnleggende prinsippene i medisinsk etikk; autonomi, velgjørenhet, ikke skade og rettferdighet. Vanskeligst og mest kontroversiell var avgjørelser og behandling av pasienter med nevromuskulære lidelser som utvikler seg raskt. Mange av informantene var blitt mindre entusiastiske til avansert HMV, fordi de hadde erfart at belastningen på de pårørende ble for stor

A successful new method for single left lobe recruitment

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