Omsorg under press – i sykehjemspasienters siste livsfase

Av alle dødsfall i Norge i 2016 skjedde 50 prosent på sykehjem og 30 prosent på sykehus. Ofte er det ikke tatt en samtale om pasientens ønsker for behandling og pleie i livets siste fase, noe som kan føre til dårlig beslutningsgrunnlag og unødvendige sykehusinnleggelser. Studiens hensikt var å få en bedre forståelse av sykepleiernes erfaringer med den siste fasen i pasientens liv på sykehjem. På sikt vil dette kunne øke kunnskapsgrunnlaget om de utfordringer sykepleiere står overfor i møte med døende pasienter og deres pårørende. Det ble foretatt seks semistrukturerte intervjuer med sykepleiere på sykehjem i en bykommune i Norge. Tre sykehjem av ulik størrelse ble inkludert. Både erfarne (det vil si de med mer enn ti års arbeidserfaring) og nyutdannede sykepleiere (de med mindre enn to års arbeidserfaring) ble intervjuet. Hovedfunnet var at sykepleierne ga uttrykk for å ha et svært sammensatt ansvarsområde og et stort faglig ansvar mot slutten av pasientens liv. Det kom frem et ønske om at en forberedende samtale mellom pasient, pårørende, sykepleier og lege om pasientens ønsker for livets siste fase innføres som en fast ordning. Studien synliggjør behovet for mer fagpersonell i sykehjem.publishedVersio

Muligheter og begrensninger for sykepleierne i pasientens preterminale og terminale fase. En kvalitativ fenomenologisk studie

Bakgrunn 40 % av den norske befolkning dør i sykehjem. Pasienter i preterminal og terminal fase trenger ro, kjente personer og kjente omgivelser. En samtale om pasientens ønsker for behandling og pleie i livets siste fase er ofte ikke tatt, og dette fører til dårlig beslutningsgrunnlag og unødvendige sykehusinnleggelser. Hensikt Studiens hensikt var å øke forståelsen for hvilke erfaringer og utfordringer sykepleierne står overfor mot avslutningsfasen av pasientens liv i sykehjem og et ønske om at en slik forståelse vil bidra til at sykepleiere kan stå bedre rustet til å mestre disse situasjonene. Metode Det ble foretatt seks semistrukturerte intervju med sykepleiere i sykehjem i en bykommune i Norge. Tre sykehjem av ulik størrelse ble inkludert. Ved å inkludere sykehjem både med og uten døgnkontinuerlig legetjeneste håpet jeg å kunne si noe om hvilken rolle tilgang til legetjeneste har for sykepleiernes følelse av ansvar. Det ble også intervjuet både erfarne (dvs. med mer enn ti års arbeidserfaring) og nyutdannede sykepleiere (med mindre enn to års arbeidserfaring i sykehjem) Resultater Sykepleierne beskriver en travel hverdag, men de har en opplevelse av å bidra på en god måte overfor både pasient og pårørende i de aller fleste tilfeller. Sykepleierne gir uttrykk for å ha et svært sammensatt ansvarsområde mot slutten av pasientens liv. De har et sterkt ønske om å ivareta pasienten med respekt og verdighet, samtidig som de ønsker å ivareta pårørende på en omsorgsfull måte. Videre gir de uttrykk for at de føler et stort faglig ansvar. Lang yrkeserfaring kompenserer noe for en ofte manglende legedekning. Konklusjon Det kommer frem et ønske fra informantene om at en forberedende samtale mellom pasient, pårørende, sykepleier og lege, om pasientens ønsker for livets siste fase, innføres som en fast ordning

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

Assessing quality of care for the dying from the bereaved relatives’ perspective: using pre-testing survey methods across seven countries to develop an international outcome measure

Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives’ perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying

Good Quality Care for Cancer Patients Dying in Hospitals, but Information Needs Unmet: Bereaved Relatives’ Survey within Seven Countries

Background Recognized disparities in quality of end-of-life care exist. Our aim was to assess the quality of care for patients dying from cancer, as perceived by bereaved relatives, within hospitals in seven European and South American countries. Materials and Methods A postbereavement survey was conducted by post, interview, or via tablet in Argentina, Brazil, Uruguay, U.K., Germany, Norway, and Poland. Next of kin to cancer patients were asked to complete the international version of the Care Of the Dying Evaluation (i-CODE) questionnaire 6–8 weeks postbereavement. Primary outcomes were (a) how frequently the deceased patient was treated with dignity and respect, and (b) how well the family member was supported in the patient's last days of life. Results Of 1,683 potential participants, 914 i-CODE questionnaires were completed (response rate, 54%). Approximately 94% reported the doctors treated their family member with dignity and respect “always” or “most of the time”; similar responses were given about nursing staff (94%). Additionally, 89% of participants reported they were adequately supported; this was more likely if the patient died on a specialist palliative care unit (odds ratio, 6.3; 95% confidence interval, 2.3–17.8). Although 87% of participants were told their relative was likely to die, only 63% were informed about what to expect during the dying phase. Conclusion This is the first study assessing quality of care for dying cancer patients from the bereaved relatives’ perspective across several countries on two continents. Our findings suggest many elements of good care were practiced but improvement in communication with relatives of imminently dying patients is needed. (ClinicalTrials.gov Identifier: NCT03566732). Implications for Practice Previous studies have shown that bereaved relatives’ views represent a valid way to assess care for dying patients in the last days of their life. The Care Of the Dying Evaluation questionnaire is a suitable tool for quality improvement work to help determine areas where care is perceived well and areas where care is perceived as lacking. Health care professionals need to sustain high quality communication into the last phase of the cancer trajectory. In particular, discussions about what to expect when someone is dying and the provision of hydration in the last days of life represent key areas for improvement

Assessing quality of care for the dying from the bereaved relatives’ perspective: Using pre- testing survey methods across seven countries to develop an international outcome measure

Background: The provision of care for dying cancer patients varies on a global basis. In order to improve care, we need to be able to evaluate the current level of care. One method of assessment is to use the views from the bereaved relatives. Aim: The aim of this study is to translate and pre-test the ‘Care Of the Dying Evaluation’ (CODETM) questionnaire across seven participating countries prior to conducting an evaluation of current quality of care. Design: The three stages were as follows: (1) translation of CODE in keeping with standardised international principles; (2) pre-testing using patient and public involvement and cognitive interviews with bereaved relatives; and (3) utilising a modified nominal group technique to establish a common, core international version of CODE. Setting/participants: Hospital settings: for each country, at least five patient and public involvement representatives, selected by purposive sampling, fed back on CODETM questionnaire; and at least five bereaved relatives to cancer patients undertook cognitive interviews. Feedback was collated and categorised into themes relating to clarity, recall, sensitivity and response options. Structured consensus meeting held to determine content of international CODE (i-CODE) questionnaire. Results: In total, 48 patient and public involvement representatives and 35 bereaved relatives contributed to the pre-testing stages. No specific question item was recommended for exclusion from CODETM. Revisions to the demographic section were needed to be culturally appropriate. Conclusion: Patient and public involvement and bereaved relatives’ perceptions helped enhance the face and content validity of i-CODE. A common, core international questionnaire is now developed with key questions relating to quality of care for the dying