Palliative Notfälle nehmen einen nicht unerheblichen Anteil an der Gesamtzahl von Rettungsdiensteinsätzen ein. Die vorliegende Arbeit beschäftigt sich mit der Thematik von Einsätzen und Patientenverfügungen bei Palliativpatienten im rettungsdienstlichen Alltag.  Im Rahmen dieser Arbeit wurden Rettungsdienstmitarbeiter der Berufsfeuerwehr Essen vor und nach einer Schulungsmaßnahme zur Thematik von Patientenverfügungen und Palliativversorgung befragt.  Es zeigte sich, dass Handlungsunsicherheit im Umgang mit Palliativpatienten und Patientenverfügungen besteht. Wünschenswert ist daher die Aufnahme des Faches Palliativmedizin in die Ausbildungscurricula der rettungsdienstlichen Berufe.  Weiterhin konnte festgestellt werden, dass die gesetzlichen Rahmenbedingungen zur Feststellung der Verbindlichkeit von Patientenverfügungen für nichtärztliches Personal nicht geklärt scheinen und dass hier Nachbesserungsbedarf besteht.

Med palliativ vård menas att inriktningen på vården är att lindra symptomen, möjligheten att bota sjukdomen finns inte längre. Läkaren ska då försäkra sig om att livsuppehållande behandlingar inte längre kan påverka sjukdomsförloppet, ta största möjliga hänsyn till patientens önskemål och ta det avgörande beslutet att avsluta eller avbryta en livsuppehållande behandling. Palliativ vård är på många områden numera utbyggd till avancerade hemsjukvårdsteam. Tidigare studier har i huvudsak fokuserat på anhöriga eller vårdpersonal och då särskilt sjuksköterskans upplevelser av att vårda palliativa patienter. Därför är det viktigt att tydliggöra patientperspektivet. Syftet med denna litteraturstudie var att beskriva befintlig forskning om hur patienter inom palliativ vård upplever den sista tiden i livet. Metoden som använts är litteraturstudie och resultatet är funnit i 10 vetenskapliga artiklar. Resultatet redovisas med hjälp av fyra kategorier; Hopp och hopplöshet, Mening och maktlöshet, Tillgänglighet och ensamhet samt Acceptans. Slutsatsen är att den som är allvarligt sjuk och står inför döden bör mötas och behandlas av palliativ vård som grundas i hopp, mening, tillgänglighet och acceptans. För att förbättra den sista tiden i livet för patienten inom palliativ vård när det gäller bevarad värdighet finns det, med stöd i studiens resultat, specifika aspekter att beakta. Patienten bör delta i sin vård så långt det är möjligt; Hopp är inte alltid kopplat till bot; Vårdarna bör underlätta sociala kontakter; Vårdarna bör vara tillgängliga, även när det inte finns något att säga; Allvarlig information bör ges stegvis; och Teamarbete med flera olika professioner.

The emotional impact of serious illness in families is recognised. To enhance well-being in families living we must understand how distress is experienced within families; from this, evidenced-based systemic distress interventions can be derived. However, the success of systemic intervention programmes is reliant on whether families will seek help (or not) for distress. This PhD by publication explores emotional distress and help-seeking in families living with advanced cancer. Papers one and two used systematic review techniques. Paper one evidenced distress as a systemic construct and proposes the tiered model of distress to convey current understandings. Paper two offers the attaining normality model to convey why some people seek help for distress to achieve a new normality whereas some choose not to seek help to maintain normality. Together, these papers evidence gaps in systemic understandings of distress and help-seeking; from this an exploratory cross-sectional multiple case study of families was proposed. Papers three and four provided methodological underpinning to this research through the development of the DESCARTE model: The Design of Case Study Research in Healthcare (paper three) used in the case study design; paper four reflects on multi-perspective interviewing methods used. Distress and help-seeking are conceived as systemic relational phenomena, occurring within the family system and arising from relational interaction with healthcare. Distress is conveyed through four themes: interdependent distress, living in uncertainty, unnecessary distress and oscillatory distress; from this, possible systemic intervention designs are offered (paper five). Non-help-seeking for distress was the predominant response in families. The mutuality model of help-seeking is proposed to synthesise current understandings (paper six). Families describe how healthcare interactions cause unnecessary distress and shapes families’ help-seeking behaviours. Findings indicate significant gaps between the rhetoric of palliative care policy and families’ experience. To improve families’ wellbeing, relational care must be embedded in policy and practice.

Background: The use of telemedicine was gaining momentum. Although the strength of the therapeutic alliance (TA) correlated with treatment outcomes, there was no research exploring the skills, attitudes and behaviours that enhanced the TA during Skype consultations in palliative care. Aims: This study identified the skills, attitudes and behaviours that affected the TA between palliative care patients and health care professionals during Skype consultations and identified strategies that enhanced the TA. Study Design: Two cycles of action research engaged the participants in self-reflective inquiry and encouraged the identification of strategies that enhanced the TA and the Skype experience. Participants: Six health professionals and nine patients were recruited from a Hospice out patient service in one Health Authority in England. Data Collection: Data from the audio-recorded consultation were managed quantitatively and the TA was measured using the Working Alliance Inventory (S). Qualitative data were collected from participant interviews and focus groups attended by the professionals. Data Analysis: The analysis ran in parallel with the data collection, started after the first consultation and all sources of data were cross-referenced. Thematic analysis was used to sequentially code the qualitative data to help identify, examine and record patterns within the data set. Findings: The findings suggested that it was possible to establish and a positive therapeutic alliance between health professionals and palliative care patients when using Skype. There was a shift in perception for those health professionals who had reservations about their ability to establish a therapeutic alliance (TA) via a computer link. It was demonstrated that advanced communication skills were transferrable between face to face and video consultations. No additional communication skills training was needed to enable a strong TA when using Skype. Including some social talk, working with the patient’s as opposed to the professional’s agenda and actively offering solutions improved the Skype experience for the patients. The strategies that health professionals promoted to enhance the TA included using Skype with appropriately selected patients to complement the existing Service. Mandatory training in the effective use of Skype was recommended even for those health professionals who used Skype socially. Clarification to address the challenge of clinical governance was recommended. In keeping with an action research design the change impacted on both the health professionals own practice and the Organisation’s approach to telemedicine. The potential for using action research to engage nurses and doctors in critical self-reflective inquiry and to empower them to be change facilitators was demonstrated. Conclusion: Although a small sample size, this study identified strategies that enhanced the TA during Skype consultations. The findings were significant because they added to the current body of knowledge about using Skype to facilitate consultations within the palliative care population. Additionally, the findings may be transferable to different populations and healthcare contexts.

<p>Nu för tiden finns det livsuppehållande behandling som kan förlänga patienters liv. Detta kan göra det svårt för sjukvårdspersonalen att sätta gränsen för när övergången från kurativ till palliativ vård ska utföras. Syftet med litteraturstudien var att beskriva sjuksköterskors upplevelser och erfarenheter när beslut ska fattas om patienters övergång från kurativ till palliativ vård inom slutenvården.  Studien genomfördes som en litteraturstudie där 15 vetenskapliga artiklar granskades och analyserades. I resultatet framkom det fyra huvudkategorier: <em>delaktighet, tidpunkt, utbildning/erfarenhet och emotionella reaktioner</em>. Då sjuksköterskor spenderade mycket tid med patienter och hade en holistisk syn ansåg många att deras åsikt inte blev respekterad av läkarna när det kom till att vara delaktig i beslut gällande övergången från kurativ till palliativ vård. Tidpunkten hade betydelse för när beslutet fattades samt även när den kurativa behandlingen avslutades. Det fanns en skillnad mellan sjuksköterskor beroende på hur lång erfarenhet de hade och hur säkra de kände sig i sitt arbete. Sjuksköterskor upplevde att det var jobbigt när det inte fanns klara direktiv på hur den fortsatta behandlingen skulle fortlöpa. För att sjuksköterskor skulle känna sig säkrare borde mer och bättre utbildning införas för samtliga professioner inom hälso- och sjukvården samt mer forskning på patienters upplevelser av situationen.</p> / <p>Nowadays, there are life-sustaining treatment that can prolong patients’ lives. This may make it difficult for medical personnel to set the limit for when the transition from curative to palliative care should be performed in institutional care. The purpose of the study was to describe the nurses’ experiences when a decision would be taken on when the patient went from curative to palliative care. In this study fifteen scientific articles were reviewed and analyzed. Four headlines emerged from the result: <em>involvement, point in time, education/experience and feelings</em>. One thing nurses had in common was that they thought that their opinion did not matter for the doctors about the transition from curative to palliative care, even though they spent more time with the patient and had a holistic point of view on the situation. The point in time was important in regards to when the decision was made and when the curative treatment was brought to an end. One difference between nurses was their experience and how secure they felt within their occupation. The nurses felt that it was difficult when there were not straight directives on how the treatment should be carried out. To be more secure in their jobs as nurses, there should be a higher level of education introduced throughout all of the health and medical care fields and there should be more research done about the patient’s experiences in their situation.</p>

This dissertation will support full ethical endorsement of terminal sedation for those most urgently in crisis and need of beneficence, those who are dying and in the final hours or days and suffering. To clarify the practice I first detail ethical differences between euthanasia, physician assisted suicide and terminal sedation. Moreover, I identify new areas where harms and benefits need to be evaluated as affecting not only patients, but also families and caregivers. I evaluate the current practice to allow the development of ethical guidelines and greater consensus on deciding the hard cases. This work may also serve to assist those looking to enlarge the practice in the future with ETS for those with debilitating diseases or disability, but they are not my primary goal. Below is the standard I propose for moral allowability for the use of terminal sedation. I will refer to it often in the pages that follow simply as my standard . Terminal sedation is the appropriate and intentional use of medications (benzodiazepines and/or narcotics) to produce ongoing, deep unconsciousness upon 1) a terminal patient’s (or surrogates) request due to 2) suffering intractable pain or other distressing clinical symptoms intolerable to the patient when 3) death is expected within hours or days (less than two weeks) due to the terminal illness, injury, or disease. I offer two versions of initial guidelines for development of hospital policy. The first version outlines minimal guidelines that ought to be utilized to allow TS for patients who fit my standard. The minimal guideline is based upon the recommendations of the American Medical Association with some modifications. The guideline is admittedly restrictive in hopes of gaining wider societal support for a currently controversial practice. Secondly, I offer more moderate guidelines for policy that could become a standard in the future. It maintains the restrictive focus of the minimal guidelines and offers additional education and support to others which has yet to be broadly provided. The moderate guidelines would mark an important step forward for allowing more choices in dying and offering additional supports to those involved with dying patients.

Nu för tiden finns det livsuppehållande behandling som kan förlänga patienters liv. Detta kan göra det svårt för sjukvårdspersonalen att sätta gränsen för när övergången från kurativ till palliativ vård ska utföras. Syftet med litteraturstudien var att beskriva sjuksköterskors upplevelser och erfarenheter när beslut ska fattas om patienters övergång från kurativ till palliativ vård inom slutenvården.  Studien genomfördes som en litteraturstudie där 15 vetenskapliga artiklar granskades och analyserades. I resultatet framkom det fyra huvudkategorier: delaktighet, tidpunkt, utbildning/erfarenhet och emotionella reaktioner. Då sjuksköterskor spenderade mycket tid med patienter och hade en holistisk syn ansåg många att deras åsikt inte blev respekterad av läkarna när det kom till att vara delaktig i beslut gällande övergången från kurativ till palliativ vård. Tidpunkten hade betydelse för när beslutet fattades samt även när den kurativa behandlingen avslutades. Det fanns en skillnad mellan sjuksköterskor beroende på hur lång erfarenhet de hade och hur säkra de kände sig i sitt arbete. Sjuksköterskor upplevde att det var jobbigt när det inte fanns klara direktiv på hur den fortsatta behandlingen skulle fortlöpa. För att sjuksköterskor skulle känna sig säkrare borde mer och bättre utbildning införas för samtliga professioner inom hälso- och sjukvården samt mer forskning på patienters upplevelser av situationen. / Nowadays, there are life-sustaining treatment that can prolong patients’ lives. This may make it difficult for medical personnel to set the limit for when the transition from curative to palliative care should be performed in institutional care. The purpose of the study was to describe the nurses’ experiences when a decision would be taken on when the patient went from curative to palliative care. In this study fifteen scientific articles were reviewed and analyzed. Four headlines emerged from the result: involvement, point in time, education/experience and feelings. One thing nurses had in common was that they thought that their opinion did not matter for the doctors about the transition from curative to palliative care, even though they spent more time with the patient and had a holistic point of view on the situation. The point in time was important in regards to when the decision was made and when the curative treatment was brought to an end. One difference between nurses was their experience and how secure they felt within their occupation. The nurses felt that it was difficult when there were not straight directives on how the treatment should be carried out. To be more secure in their jobs as nurses, there should be a higher level of education introduced throughout all of the health and medical care fields and there should be more research done about the patient’s experiences in their situation.

Objectives: The objective of this thesis is to identify and understand communication and information exchange events and their influencing factors that are precursors to medical errors. Methods: Palliative Sedation Therapy is used as a case study to understand how communication and information sharing occur on an in-patient palliative care unit. Data sources were non-participant observation and interviews. Directed content analysis was used to analyze the data, with previously published conceptual models of communication acting as the guides for this analysis. Results/Discussion: Results identified several communication issues that have the potential to act as precursors to medical error at different points in the communication act. A model identifying the points where these precursors can impact communication was created. Conclusion: These results can be used to identify how improvements to communication and information exchange can increase the effectiveness of communication and reduce the likelihood of medical errors occurring.

Bakgrund: Trycksår är en lokal skada av huden. Skadan ligger ovanför ett benutskott och orsakas av tryck eller en kombination av tryck skjuvning eller friktion. Smärta från trycksåret är ett vanligt förekommande problem som påverkar livskvaliteten negativt. Syfte: Syftet med studien var att undersöka förekomsten av trycksår i livets slutskede samt att se om personer med smärta och trycksår är smärtskattade med VAS/NRS. Syftet var även att se om det fanns något samband mellan trycksår och smärta. Metod: Metoden som använts var en retrospektiv deskriptiv undersökning med kvantitativ ansats. Insamling av data skedde via frågor tagna ur dödsfallsenkäten. Uppgifterna togs ur Svenska palliativregistret samt via journalgranskning. Resultat: Förekomsten av trycksår under 2008-2010 var mellan 29 - 33 %. Under perioden dog 95 (30 %) personer med trycksår, 83 % av dessa trycksår var kategori 1 eller 2 sår. Av de som avled med trycksår upplevde 78 % smärta sista veckan i livet, 59 % hade smärtskattats med VAS/NRS där det visade sig att 69 % skattade över 3 på VAS/NRS skalan. Medianen på VAS/NRS var 6. Inget signifikant samband mellan trycksår och smärta påvisades. Slutsats: Personal som vårdar personer i livets slutskede bör ha en god kunskap om hur, var­för och när trycksår uppkommer mot slutet av livet och även ha ökad kunskap om kroppens smärtmekanismer samt vilken symtomlindring som fungerar. Nyckelord: god död, palliativvård, cancer, Svenska palliativregistret. / Background: Pressure ulcers are a local damage of the skin. The damage is above a bony prominence caused by pressure or a combination of pressure shear and friction. Pain from the pressure ulcer is a common problem that affects quality of life negatively. Aim: The aim of this study was to investigate the incidence of pressure ulcers in palliative care and to see if people with pain and pressure ulcers are pain assessed by VAS/NRS. The aim was also to see if there was any correlation between pressure ulcers and pain. Method: The method used was a retrospective descriptive study with quantitative approach. Data collection was done through questions taken from the Swedish death inquiry. The data were taken from the Swedish palliative register and through journal review. Results: The incidence of pressure ulcers during 2008-2010 was between 29 – 33 %. During the period died 95 (30%) with pressure ulcers, 83% of these pressure ulcers were category 1 or 2 wounds. Of those who died with pressure ulcers 78 % experienced pain last week of life, 59 % had pain assessed by VAS/NRS that showed that 69% estimated above 3 on the VAS/NRS scale. The median on VAS/NRS was 6. No significant correlation between pressure ulcers and pain were found. Conclusion: Staff who care for people in end of life care should have a good knowledge of how, why and when pressure ulcers occur towards the end of life, they should also have greater knowledge of the body's pain mechanisms and pain relief that works. Keywords: Good death, palliative care, cancer, Swedish palliative register.

This study explored the quality of life (QOL) of advanced cancer patients before and after receiving hospital-based palliative shared care; also compared their quality of life with those of terminal ill patients in palliative care units. Sixty-eight cancer patients in a southern Taiwan hospital were selected, purposive sampling, as our study samples. Among these 68 patients in our study were under three care models; 20 patients were under general care, 17 patients were under hospital-based palliative shared care, and 31 patients were under palliative care. One week after their admission into care units, we evaluated their QOL using MQOL ¡VTaiwan version. The QOL data of these three groups of advanced cancer patients ,then grouped and compared as in general care unit, hospital-based palliative shared care unit, and palliative care unit. All data collected were analyzed using SPSS for Word 10.0 statistic software. Furthermore, we have in-depth interviewed with four chiefs of general care units, five patient caretakers, and one professional of hospital-based palliative share care. Contents of the in-depth interviews focused on in what aspects hospital-based palliative shared care provided help to terminally ill patients in terms of quality of life or life difficulty. Contents of the discussion were then analyzed and interpreted. Results of our analysis, measured by MQOL ¡V Taiwan version, showed there is no significant difference in QOL of advanced cancer patients between hospital-based palliative shared care and general care. But results of our in-depth interview with caretakers and caregives showed interesting aspects: 1. Physical symptoms of advanced cancer patients was brought under control. 2. Psychological symptoms of advanced cancer patients or their family was taken care of. 3. Advanced cancer patients or their family are all benefited from continued advice and instructions. 4. Provide cancer patients and their family with guidance and instructions as to preparing for death. 5. Support the emotional needs of family of advanced cancer patients. 6. Hospital-based palliative shared care offered palliative consultation, supporting patient caretakers and providing improvement QOL for cancer patients. 7. Mindset change to doctors: inform cancer patients or their family of developing cancer symptom so that early intervention can be ensued. 8. Caretakers of general care unit and hospital-based palliative shared care unit formed a joint team, enabling cancer patients and their family feel secured in treatment. In conclusion, hospital-based palliative shared care benefits patients and their family. Comparing with hospital-based palliative shared care, palliative care showed significant improvement in physical symptom domain, psychological domain, and the mean of four domains. In all palliative interventions, palliative care has better effect in improving QOL of cancer patients than hospital-based palliative shared care. By this study, we examined and evaluated the effectiveness of ¡§Hospital-based Palliative Shared Care Program¡¨ promoted by Bureau of Health Promotion, Department of Health, R.O.C. With the in-depth information revealed, we can improve this promotion program and ensure that patient¡¦s needs have been taken care of. We would also recommend any promotion program must focus on patients, and a model of combined effort of palliative shared care should be on top of all.