BAKGRUND: Att uppleva existentiellt lidande är en naturlig del av att vara människa. Att lindra lidande ingår i sjuksköterskors ansvarsområde. En god kommunikationsförmåga krävs för att skapa ett samtal som lindrar lidandet. SYFTE: Att belysa sjuksköterskors erfarenheter av att möta patienter med existentiellt lidande. METOD: Litteraturbaserad studie grundad på fjorton kvalitativa vetenskapliga artiklar. RESULTAT: Ur analysen av datamaterialet framkom tre kategorier såsom: Strävan mot lindring, hinder för ett adekvat professionellt yrkesutövande och professionell och personlig påverkan med nio underkategorier. KONKLUSION: När sjuksköterskor får utbildning och kunskap i hur existentiellt lidande kan hanteras blir de betydligt bättre på att tillgodose patienters behov av detta. Avsaknad av tydliga regelverk, som betonar vikten av att se patienters existentiella lidande, gör att den delen av omvårdnaden hamnar i skymundan. / BACKGROUND: To experience the existential suffering is a natural part of being human. To relieve suffering is part of nurses' responsibility. It requires good communication skills to create an encounter to alleviate the suffering. OBJECTIVE: To elucidate nurses' experiences of meeting patients with existential suffering. METHOD: Literature-based study, based on fourteen qualitative research articles. RESULTS: Three categories emerged from the analysis: Striving towards alleviation, barriers to adequate practicing professional and professional and personal impact with nine subcategories. CONCLUSION: When nurses are educated and get the knowledge about how existential suffering can be managed, they become much better at meeting the needs of patients. Lack of a distinct regulatory framework which emphasizes the importance of recognizing patients' existential suffering, puts that part of caring in the background.

Background: Living with an incurable disease means facing existential challenges that the person must relate to. Being in a palliative phase also means that the person undergoes a lot of changes which often causes suffering. Suffering in palliative care is seen as multidimensional, something that affects the whole person, which is why a holistic view is a central part of palliative care. Aim: The aim of this literature study was to describe patient's experiences of existential suffering in the palliative phase. Method: A literature study based on ten qualitative articles. Results: Four main themes were found; experiences of a changed life-situation, experiences of loneliness, experiences of meaningless and experiences of loss. Conclusion: The study shows, from an existential point of view that coping and handling with an imminent death is complex and difficult in several ways. Patients in palliative care are a vulnerable patient group whose existential suffering may be enhanced by the way health professionals provide care. The study also shows a need for further research in this area aiming to support health care professionals to alleviate existential suffering.

Background: When a patient suffer from a disease and is in need of palliative care, it is normal to have existential questions and thoughts. For some patients these questions can be painful and the nurse need to have knowledge about dealing with these kind of questions and thoughts to be able to relieve and/or prevent this kind of suffering. Aim: The aim was to describe how the nurse can prevent the existential suffering among patients with palliative care. Method: A literature-based study was based on eight qualitative studies. Results: The results showed that nurses meet patients in the palliative care environment which may suffer from existential problems when their questions and thoughts don´t get answered. It showed that the most important a nurse can do is to give time to these calls and build up a safe relation to the patient. This allows the nurse to read the patients existential questions and observing possibly suffering. The result is organized in two categories "To see and confirm" and " To listen and give support" and see subcategories " Use body language", " Create reliable relationship", respond to the existential questions", "Give the patient time", " take help from others in hard situations" and "to focus on other things" Conclusion: It is easy to only focus on the physical illness while caring for a patient and believe that it is creating suffering. Extensive human suffering is not shown at first sight although it is just as important to relieve.

Syrén, Susanne (2010). Det outsagda och ohörsammade lidandet. Tillvaron för personer med långvarig psykossjukdom och deras närstående (Being in the world with long term psychotic illness – the unspoken and unheard suffering), Linnaeus University Dissertations No 6/2010. ISBN: 978-91-86491-07-9. Written in Swedish with a summary in English. Aim: The overall aim of the thesis was to describe the lived experience of being in the world with long term psychotic illness. This is described from three perspectives; the perspective of persons diagnosed with long term psychotic disorder; the perspective of their relatives; and a family perspective. Method: Three studies were conducted guided by a reflective lifeworld approach grounded in phenomenology. The data were generated through individual, group, and family interviews. Data were analyzed for essential meanings of being in the world. Results: Persons with long term psychotic illness live in a borderland of paradoxes between the usual and unusual. For the ill persons the existence is incomprehensible and defenceless with feelings of not being at home in the body and in the world. They search for themselves in a care context that is contradictory, simultaneously good and hostile. These experiences are mostly unspoken, a struggle with doubts about having health or illness, what is good or evil, and about being usual or unusual. The relatives exist in a dilemma of the possible and impossible, a continual infinite struggle. Co-existing with their ill family member is a communion and a longing for togetherness is prominent. Relatives struggle with responsibilities for themselves and for their ill family member. In these unheard struggles the relatives yearn for participation in the formal care context. Family interviews with persons with long term psychotic illness and their relatives revealed a co-existence hovering between chaos and boredom while striving for a peaceful and quiet life. Thefamilies search for constancy and predictability in the presence of incomprehensible and threatening dangers. The experience of being a We balances the unshared meanings of being in the world and the loss of being able to experience and do things together. The experience of being a We keeps their individual existence and co- existence from falling apart.Conclusion: Persons with long term psychotic illness and their relatives have to withstand extensive existential suffering, which is unspoken and unheard. Formal caring should be existential caring, supporting the ill person’s comprehensibility and understanding of life, and feelings and experiences of being at home. Further, relatives should be acknowledged both as persons and carers and invited to participate in formal care. These results also point to the importance of strengthening feelings of togetherness and of being a We through systemic oriented existential conversations, where the ill person, their relative and a formal carer converse together.

Bakgrund: Palliativ vård innebär att ge vård till patienter i livets slutskede där målet syftar till att lindra lidandet. Lidandet anses vara ett problemområde för den palliativa patienten. Existentiellt lidande yttrar sig individuellt och är vanligt förkommande för palliativa patienter. Sjuksköterskan besitter fyra ansvarsområden enligt ICN:s etiska kod, vilket innefattar att främja hälsa, lindra lidande, förebygga sjukdom och återställa hälsa. Kommunikationen är ett viktigt verktyg för att anpassa omvårdnaden utifrån den unika patientens behov. Syfte: Undersöka sjuksköterskans förmåga att kommunicera med patienter i livets slutskede och om detta kunde bidra med att lindra det existentiella lidandet. Metod: En allmän litteraturstudie som var skapad utifrån ett systematiskt förhållningssätt med en induktiv ansats. Resultat: Kommunikationen visade sig ha en betydande roll för att lindra lidandet hos den existentiellt lidande patienten. Viktiga egenskaper som identifierades var sjuksköterskans kommunikation via relation samt kommunikationsverktygen: empatisk kommunikation, tid och tidpunkt, en relation byggd på förtroende samt sjuksköterskans förmåga att initiera till samtal. Slutsats: Litteraturstudien påvisade flera kommunikationsverktyg som kunde vara behjälpligt i kommunikationen med den existentiellt lidande patienten. Att som sjuksköterska kunna identifiera patientens behov av att samtala, utläsa lämplig tidpunkt samt att kunna tolka när det finns ett behov av att ta ett steg tillbaka ansågs viktigt. / Background: Palliative care involves providing care to patients in the final stages of life where the goal is to alleviate suffering. Suffering is considered a problem area for the palliative patient. Existential suffering manifests itself individually and is common in palliative care. The nurse has four responsibilities under the ICN Code of Ethics, which includes promoting health, alleviating suffering, preventing illness and restoring health. Communication is an important tool for adapting nursing based on the unique patient’s needs. Purpose: To investigate the nurse's ability to communicate with patients at the end of life and whether this could help alleviate existential suffering. Method: A general literature study that was created based on a systematic approach with an inductive focus. Results: Communication proved a major significant role in alleviating the suffering of the existentially suffering patient. Important characteristics that were identified were the nurse's communication through relationship and the communication tools: empathic communication, time and moment, a relationship based on trust and the nurse's ability to initiate conversations. Conclusion: The literature study identified several communication tools that could be helpful in communicating with the existentially suffering patient. As a nurse, being able to identify the patient's need to talk, read out the appropriate time and to be able to interpret when there is a need to take a step back was considered important.

Sammanfattning Den palliativa vården karaktäriseras av en värdegrund med ledorden empati, närhet, helhet och kunskap. Syftet med värdegrunden är att främja individens livskvalitet, lindra lidande och erbjuda ett existentiellt stöd i livets slut. Grunden för en god personcentrerad vård bygger på att relation mellan vårdare, patient och närstående främjas samt att bli lyssnad på och sedd som person. Existentiell smärta är vanligt förekommande hos patienter i palliativt skede som känslor av ensamhet, isolering, meningslöshet, separation och dödsångest. Patienten ger uttryck av behov att bli bemött med respekt, empati och inte bli övergiven av sin vårdgivare. Flera studier har påvisat brister där sjukvården inte kan definiera och förstå existentiella behov. Syftet med studien var att beskriva sjuksköterskors perspektiv på att arbeta med existentiell smärta hos patienter i palliativt skede. Metoden som valdes för studien var en litteraturöversikt för att undersöka kunskapsläget inom området. Databaserna CINAHL complete, PubMed, PsycINFO samt SweMed+ genomsöktes systematiskt med valda sökord vilket resulterade i att 16 artiklar identifierades som svarade mot studiens syfte utifrån valda urvalskriterium. Resultatet visade att sjuksköterskor såg ett ansvar för att skapa en god relation och kommunikation till patient och närstående, i arbetet med existentiell smärta hos patienter i palliativt skede. Viktiga komponenter för en fördjupad relation var tid, tajming, närvaro och visad empati. Lyhördhet hos sjuksköterskan sågs som viktigt för att kunna tolka och lindra patientens existentiella smärta. Många sjuksköterskor såg arbetet som meningsfullt i de situationer då de kände att de lindrade patientens existentiella smärta. Arbetet innebar känslomässig involvering och i en del situationer var balansen mellan distans och närvaro svårt att identifiera. Arbetet öppnade även upp för reflektion kring livet och döden. En del sjuksköterskor beskrev arbetet med existentiell smärta hos patienten som för mödosamt och såg det inte som deras uppgift att sitta ner och prata om döden. Sjuksköterskorna saknade verktyg för att kunna handla och hantera i olika situationer med existentiell smärta hos patienten. Slutsatsen i föreliggande studie var sjuksköterskors möten med patienter med existentiell smärta i palliativt skede ser olika ut då varje människa är unik med olika behov och resurser. Arbetet med existentiell smärta hos patienter involverade sjuksköterskan känslomässigt och balansen mellan närvaro och distans var svår att identifiera. Mer utbildning, diskussion och träning i att bemöta existentiell smärta behövs för att stärka sjuksköterskor i deras arbete med patienten i palliativt skede. / Abstract Palliative care is characterized by a foundation of values ​​with the catchwords empathy, holism and knowledge. The purpose of the values ​​is to promote the individual's quality of life, alleviate suffering and offer an existential support in the end of life. The foundation for a good person-centered care is based on the relationship between caregiver, patient and next of kin are being promoted and being listened to and seen as a person. Existential pain is common in patients in palliative phase such as loneliness, isolation, meaninglessness, separation and death anxiety. The patient gives the expression of needs to be met with respect, empathy and not be abandoned by his caregiver. Several studies have demonstrated the gaps where the health care system can't define and understand the existential needs. The aim of the study was to describe the nurses' perspectives on working with existential pain in patients in the palliative phase. The method chosen for the study was a literature review to examine the state of knowledge in the field. The databases CINAHL complete, PubMed, PsycINFO and SweMed+ were systematically searched with selected keywords, which resulted in 16 articles being identified which corresponded to the study's aim based on the chosen selection criteria. The result showed that nurses saw a responsibility to create a good relationship and communication with the patient and next of kin, in the work with existential pain in patients in the palliative phase. Important components for a deeper relationship were time, timing, attendance and shown empathy. Responsiveness of the nurse was seen as important to be able to interpret and alleviate the patient's existential pain. Many nurses saw the work as meaningful in the situations which they felt that they alleviated the patient's existential pain. The work involved emotional involvement and in some situations where the balance between distance and presence was difficult to identify. The work also opened up for reflection on life and death. Some nurses described the work with existential pain of the patient as too laborious and did not see it as their duty to sit down and talk about death. Some nurses described that they missing tools to be able to act and handle in different situations with existential pain in the patient. Conclusion in this study, the nurses' meetings with patients with existential pain in palliative stage is different as each person is unique with different needs and resources. The work of existential pain in patients involved the nurse emotionally and the balance between the presence and distance were difficult to identify. More education, discussion and training in addressing existential pain are needed to strengthen nurses in their work with the patient in palliative phase.

Det existentiella lidandet återfinns i samband med frågor som rör människans frihet, tillvarons mening, känslor av ensamhet och isolering i livssituationen samt i mötet med döden. Dessa frågor är universellt mänskliga och uppträder därför oavsett människans bekännande till eller avståndstagande från andlighet eller religiositet. Syftet med denna litteraturstudie var dels att beskriva hur det existentiella lidandet tar sig uttryck hos cancerpatienter i kurativ vård men också att beskriva sjuksköterskors bemötanden gentemot dessa patienter och de möten som uppstår mellan patienter och sjuksköterskor. De resultat som framkom av studien visade på att det existentiella lidandet karaktäriseras av förändringar och är en stor del av det totala lidande som cancerpatienter utstår. Samtidigt är emellertid sjuksköterskor, till följd av rädsla och okunskap, i många fall oförmögna att möta de förväntningar och behov som patienterna har. Den teoretiska referensram som använts utgörs av valda delar av Katie Erikssons omvårdnadsteori. / The existential suffering is found in relation to questions about human freedom, meaning of existence, feelings of loneliness and isolation in life and encountering death. These questions are of a universal human character and are therefore to appear irrespective of human confession to or dissociation from spirituality or religiosity. The aim of this review was partly to describe the existential suffering in cancer patients in curative care, partly to describe nurses´ treatments to these patients and the encounters that arise between patients and nurses. The findings emerging in the study revealed that the existential suffering is characterized by changes and is a great part of the total suffering that cancer patients endure. At the same time are nurses, as a result of fear and ignorance, in many cases unable to encounter the patients´ experiences and needs. The theoretical framework used, consist of selected parts of Katie Eriksson´s nursing theory.

Au cours du siècle dernier, des améliorations au niveau des conditions de vie ainsi que des avancées importantes dans les sciences biomédicales ont permis de repousser les frontières de la vie. Jusqu’au début du XXe Siècle, la mort était un processus relativement bref, survenant à la suite de maladies infectieuses et avait lieu à la maison. À présent, elle survient plutôt après une longue bataille contre des maladies incurables et des afflictions diverses liées à la vieillesse et a le plus souvent lieu à l’hôpital. Pour comprendre la souffrance du malade d’aujourd’hui et l’aborder, il faut comprendre ce qu’engendre comme ressenti ce nouveau contexte de fin de vie autant pour le patient que pour le clinicien qui en prend soin. Cette thèse se veut ainsi une étude exploratoire et critique des enjeux psychologiques relatifs à cette mort contemporaine avec un intérêt premier pour l’optimisation du soulagement de la souffrance existentielle du patient dans ce contexte. D’abord, je m’intéresserai à la souffrance du patient. À travers un examen critique des écrits, une définition précise et opérationnelle, comportant des critères distinctifs, de ce qu’est la souffrance existentielle en fin de vie sera proposée. Je poserai ainsi l’hypothèse que la souffrance peut être définie comme une forme de construction de l’esprit s’articulant autour de trois concepts : intégrité, altérité et temporalité. D’abord, intégrité au sens où initialement l’individu malade se sent menacé dans sa personne (relation à soi). Ensuite, altérité au sens où la perception de ses conditions extérieures a un impact sur la détresse ressentie (relation à l’Autre). Et finalement, temporalité au sens où l’individu souffrant de façon existentielle semble bien souvent piégé dans un espace-temps particulier (relation au temps). Ensuite, je m’intéresserai à la souffrance du soignant. Dans le contexte d’une condition terminale, il arrive que des interventions lourdes (p. ex. : sédation palliative profonde, interventions invasives) soient discutées et même proposées par un soignant. Je ferai ressortir diverses sources de souffrance propres au soignant et générées par son contact avec le patient (exemples de sources de souffrance : idéal malmené, valeurs personnelles, sentiment d’impuissance, réactions de transfert et de contre-transfert, identification au patient, angoisse de mort). Ensuite, je mettrai en lumière comment ces dites sources de souffrance peuvent constituer des barrières à l’approche de la souffrance du patient, notamment par l’influence possible sur l’approche thérapeutique choisie. On constatera ainsi que la souffrance d’un soignant contribue par moment à mettre en place des mesures visant davantage à l’apaiser lui-même au détriment de son patient. En dernier lieu, j'élaborerai sur la façon dont la rencontre entre un soignant et un patient peut devenir un espace privilégié afin d'aborder la souffrance. J'émettrai certaines suggestions afin d'améliorer les soins de fin de vie par un accompagnement parvenant à mettre la technologie médicale au service de la compassion tout en maintenant la singularité de l'expérience du patient. Pour le soignant, ceci nécessitera une amélioration de sa formation, une prise de conscience de ses propres souffrances et une compréhension de ses limites à soulager l'Autre. / Until the beginning of the 20th century, death was a relatively brief process occurring in the home, most often resulting from diverse infectious diseases. Nowadays, death predominantly occurs inside institutions, after a long battle with an incurable disease or due to the multiple debilities of aging. To understand and address patients' suffering at their end-of-life today, we must better grasp what this new type of death engenders in terms of emotional experience as much for the patient as for the clinician taking care of him. This thesis is an exploratory and analytical study of the psychological issues related to contemporary death with a prime interest for the optimization of existential suffering relief in this context. First, I will focus on the patient's suffering. Through an analytic review of the literature, I will propose a precise and operational definition of existential suffering in the end-of-life context, with some distinctive features. I will propose the hypothesis that suffering can be defined as a construction of the mind. This hypothesis will be articulated around the idea that existential suffering stems from three sources: integrity, otherness, and temporality. First, integrity in the sense that the patient initially feels threatened in his own person (relation to the self). Then, otherness in the sense that the perception of his external conditions has an impact on his distress (relation to the Other). And finally, temporality in the sense that the patient suffering existentially often seems trapped in a specific time frame (relation to time). After, I will focus on the clinician's suffering. In the end-of-life context, high-stake interventions such as palliative sedation or invasive treatments are sometimes brought up or even proposed by a clinician. I will describe many sources of suffering affecting the clinician and generated by his contact with the patient (examples of clinician's sources of suffering: damaged ideals, personal values, sense of failure, transference and countertransference reactions, identification processes, death anguish). Then, I will illustrate how these sources of suffering can constitute barriers to addressing the patient's suffering by influencing the choice of therapeutic approaches. Through this exercise we will discover that the clinician's suffering sometimes causes him to initiate interventions aimed at relieving his own distress at the expense of his patient. Finally, I will elaborate on how the encounter between a patient and a clinician can become a privileged context to address suffering. I will suggest ways of improving end-of-life care by providing a context of care that manages to put biotechnology in the service of compassion and by maintaining the singularity of the patient's experience. For the clinician, this will require an improvement of his training, an acknowledgement of his own sources of suffering and an understanding of his limits to help others.