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dc.contributor.advisorLorem, Geir
dc.contributor.authorLind, Ranveig
dc.date.accessioned2013-04-11T08:54:13Z
dc.date.available2013-04-11T08:54:13Z
dc.date.issued2013-01-24
dc.description.abstractThis thesis is based on the decision-making process involved in treatment termination in intensive care. ICU patients often have impaired consciousness and may therefore lack capacity to consent. In such cases, the health care personnel have the decision-making authority, but where a serious intervention for the patient is involved, information should if possible be obtained from the patient’s next-of-kin about what the patient would have wanted. The reason for conducting this study was that we in Norwegian intensive care practice knew little of the experiences of family members from situations where life-critical decisions are made on behalf of patients and which ethical and value issues the families experience as crucial. This thesis therefore examines the experiences of bereaved family members from the decision-making process when treatment of ICU patients is terminated. The study examined what participation in the decision-making process might involve, what it might signify to have responsibility in such situations and whether the family knew the patient’s preferences for such a situation. Questions were also directed at the family’s communication with doctors and nurses. Four ICUs at Norwegian university hospitals selected potential participants. 21 qualitative interviews with 27 relatives of deceased ICU patients were analysed using two different qualitative approaches. The most important finding was that most families in the study had wanted to be more included in the decision-making process, in order to contribute what they knew about the patient’s preferences and values. Only a few of the families were included in a process over time. These were very satisfied with the way they were treated, the care they were shown, communication with clinicians and the termination process itself. The other families also experienced being shown much care, but communication with physicians was random, too seldom and could be disrespectful. The families pointed out that nurses generally did not attend family-physician meetings and nurses expressed themselves vaguely regarding treatment prospects and prognosis. When the end of treatment was approaching, these families were either just informed that it was to be terminated or were informed and asked to consent to the decision. The consequences for the families were uncertainty about the basis for the decision, a sense of loneliness around unanswered questions, lack of clarity about their own role and a feeling of responsibility for the patient. The study concludes that, even though communication about treatment termination is demanding and context-dependent, the family’s perspective could still be given more consideration. We identify several specific factors which we believe to be important for the improvement of the circumstances around treatment termination. Because these situations are complex and compound, doctors and nurses could first of all become more aware of and relate to the ethical aspects of the situation. Secondly, we believe there is a need for more training in communication with families in ethically difficult situations. Doctors and nurses can and should work more systematically and methodically as a team in their approach to patients’ families.en
dc.description.doctoraltypeph.d.en
dc.description.popularabstractDet har manglet kunnskap om hvilke erfaringer pårørende i Norge har fra situasjoner der livsavgjørende beslutninger fattes på vegne av intensivpasienter. Hvilke etiske og verdimessige spørsmål opplever pårørende som kritiske? Avhandlingen undersøker derfor de etterlattes erfaringer fra beslutningsprosessen om å avslutte behandling av intensivpasienter, hva delaktighet i denne prosessen kunne innebære, hva det kunne bety å ha ansvar i slike situasjoner og om de pårørende kjente pasientens preferanser. Familiens opplevelse av kommunikasjonen med leger og sykepleiere ble også undersøkt. Forskeren analyserte 21 kvalitative intervju med 27 etterlatte pårørende til avdøde intensivpasienter. De fleste pårørende hadde ønsket å være mer inkludert i beslutningsprosessen, for å kunne bidra med det de visste om pasientens preferanser og verdier. Mange opplevde at kommunikasjonen med leger var tilfeldig, for sjelden og kunne være krenkende. Når behandlingen nærmet seg slutten, ble familiene ofte bare informert om at behandlingen skulle avsluttes, eller de ble informert og bedt om å gi sin tilslutning til beslutningen. Konsekvensene for mange pårørende var usikkerhet om beslutningsgrunnlaget, opplevelse av ensomhet rundt ubesvarte spørsmål, usikkerhet om egen rolle og erfaring av ansvar for pasienten. Studien konkluderer med at familiens perspektiv kan ivaretas bedre ved at både leger og sykepleiere blir mer bevisst på situasjonens etiske aspekter, arbeider systematisk og planmessig som et team og trener sammen på kommunikasjon med pårørende.en
dc.description.sponsorshipHelse Nord Norsk Sykepleierforbund Norges Forskningsråden
dc.descriptionThe papers of this thesis are not available in Munin: <br/>1. Lind, R., Lorem, G., Nortvedt, P., & Hevrøy, O.: 'Family members’ experiences of “wait and see” as a communication strategy in end-of-life decisions', Intensive Care Medicine (2011), vol. 37(7):1143-1150. Available at <a href=http://dx.doi.org/10.1007/s00134-011-2253-x>http://dx.doi.org/10.1007/s00134-011-2253-x</a> <br/>2. Lind, R., Lorem, G. F., Nortvedt, P., & Hevrøy, O.: 'Intensive care nurses’ involvement in the end-of-life process – perspectives of relatives', Nursing Ethics (2012), vol. 19(5):666-676. Available at <a href=http://dx.doi.org/10.1177/0969733011433925>http://dx.doi.org/10.1177/0969733011433925</a> <br/>3. Lind, R., Nortvedt, P., Lorem, G., & Hevrøy, O.: 'Family involvement in the end-of-life decisions of competent intensive care patients', Nursing Ethics (2012), (published online before print). Available at <a href=http://dx.doi.org/10.1177/0969733012448969>http://dx.doi.org/10.1177/0969733012448969</a>en
dc.identifier.urihttps://hdl.handle.net/10037/5074
dc.identifier.urnURN:NBN:no-uit_munin_4788
dc.language.isoengen
dc.rights.accessRightsopenAccess
dc.rights.holderCopyright 2013 The Author(s)
dc.subject.courseIDDOKTOR-003en
dc.subjectVDP::Medisinske Fag: 700::Helsefag: 800::Sykepleievitenskap: 808en
dc.subjectVDP::Medical disciplines: 700::Health sciences: 800::Nursing science: 808en
dc.titleFamily members' experiences of decision-making processes in the context of withholding or withdrawing treatment in the ICU. A qualitative interview studyen
dc.typeDoctoral thesisen
dc.typeDoktorgradsavhandlingen


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