Bakgrund: Döendet är en normal process som ingen kan undkomma. Centralt i den palliativa omvårdnaden är respekten för patientens autonomi och självbestämmande. Upplevelserna av livskvalitet är starkt förenat med existentiellt välbefinnande. Det går inte lindra allt lidande endast det väsentliga i omvårdnaden går att lindra. För att främja en god kommunikation vid livet slut bör den vara hoppingivande och stödjande. Syfte: Syftet var att beskriva patienters upplevelser av sin sista tid i livet. Metod: En kvalitativ studie med narrativ ansats valdes som metod, datamaterialet baserades på sju självbiografier. Resultat: Ur analysen framträdde fyra kategorier: Ett annat synsätt på livet, Det svåra i att vara sjuk, Som patient få utöva egen vilja, Önskan att bevara livskvalitet med elva underkategorier. Konklusion: Ett annat synsätt på livet fås vid det ofattbara beskedet. Det svåra med att vara obotligt sjuk var fysiska symtom och skuldkänslor. Att bli sedd och den egna viljan prioriterades och önskan att bevara livskvalitet fanns. / Background: Death is a normal process from which there are no exceptions. Central aspects of palliative care is to respect the patients autonomy and right to make own decisions. How patients experience their quality of life is strongly associated to their existential wellbeing. It is not possible to ease all suffering, only those parts that are connected to the treatment. To be able to promote a good communication at the end of life is it necessary that it’s encouraging and supportive. Aim: The purpose of this thesis was to describe patients reported experiences as their life came to an end. Methods: A qualitative study with narrative approach was chosen as method, seven self-biographies were included. Results: Four categories emerged: Another perspective on life, The difficulties of being ill, As patient exercise own will, and The desire to retain life-quality with eleven subcategories. Conclusions: Another approach to life is obtained when the unimaginable news is notified. The difficultness about being terminally ill was physical symptoms and feelings of guilt. To be seen and their own will was a priority and the desire to preserve the quality of life.

Bakgrund: Människor som lever med obotlig sjukdom i livets slutskede kan leva med en hotad existens. I dessa fall kan palliativ vård vara en lämplig form av vård. Livskvalitet är ett sätt att mäta individers välbefinnande och påverkas av stöd. Stöd uppfattas som positivt när det sker motgångar i livet. Den subjektiva levda kroppen är där existensen lever genom och kan förändras på grund av sjukdom, då kan även existensen hotas. Sjuksköterskor behöver både stöd och kunskap inom den palliativa vården för att de ska känna trygghet i sitt arbete. Syfte: Beskriva patienters upplevelser av att leva med en obotlig sjukdom i livets slutskede. Metod: En kvalitativ innebördsanalys med sex stycken självbiografier användes för att svara på syftet. Resultat: Fyra teman framkom dessa var; Stöd kan underlätta sorgen, Att välja livskvalitet trots sjukdom, När kroppen inte är som förr och Förändrad syn på livet och döden. Diskussion: Stöd är inte endast en viktig aspekt för personer som lever med en obotlig sjukdom i livets slutskede, det är också viktigt för anhöriga och närstående. Sjuksköterskor behöver känna stöd från sina kollegor för att kunna utföra en så god vård som möjligt. Slutsats: Personer som lever med oboltig sjukdom kan få en förändrad livssyn då livet prioteras på ett sätt som det tidigare inte gjorts. / Background: People, who are living with incurable diseases, can be living with threatening existence. In these cases, palliative care can be an appropriate form of care. Quality of life is a way to measure individual’s well-being, and is affected by received support. Support is perceived as a positive influencer when people are faced with setbacks in life. The subjective lived body is where the existence lives through and may change due to illness, and then even existence is threatened. Nurses need both support and knowledge in the field of palliative care to feel confident in their work. Purpose: The purpose of this thesis is to investigate the patients’ experiences of living with an incurable disease in end life care. Method: In this thesis a qualitative meaning analysis is used. Six autobiographies are used to answer the purpose. Result: Four different themes were identified. They are; support can overcome the grief; Too choose life quality over sickness; When the body is not like it used to be; and lastly, a changed perception on life and death. Discussion: Support is not only important for the patient living with an incurable disease, but also for relatives and friends. Nurses need support from their colleagues so they can give the best care possible. Implication: People living with an incurable diseases can have a changed sight of life, when life portieres different than before.

In the theoretical part the terms hospice, home hospice care and palliative care are defined. History, principles, objectives and the concept of hospice care in the Czech Republic are mentioned. The phases of psychological responses to a serious illness undergone by a patient and the patients´ reaction to impending death are described. The traditional model of dying in the Czech Republic in the home environment, the gradual institutionalization and the taboos surrounding death, and the new inception of humane methods in the care for the dying after the year 1989 are particularized. The current types of hospice care in the Czech Republic and especially home hospice care are described in detail, and also the needs of the dying and those of their loved ones, which is the main topic of my thesis. The aim of this work is to survey the availability of palliative home care services in the Vysočina region, to compare the range of offered services, to map the users´ experience and to identify the risk factors in providing this care. In the realized qualitative research the availability of these services was surveyed through the content analysis of data by the technique of official documents and virtual data analysis. In order to map the users´ experience, managers of two agencies providing home hospice care in the town of Třebíč were addressed, as well as the users or their families to whom these agencies provide their services. The interview method, the technique of a semi-structured interview was used. There are eight providers of home hospice care in the Vysočina region. The Vysočina region supports not only home hospice care, but also supported the establishment of residential hospice services in the Long-Term Care Hospitals in three towns in the Vysočina region and the Palliative Care Department in the Jihlava hospital. These facilities have partially substituted a non-existent hospice in the Vysočina region. Hospice care in the Vysočina region is relatively new. It is necessary to get some experience and discover possible shortcomings. The complexity of the care for the seriously ill can be extended, which may enable the seriously ill patients to stay at home with their relatives as long as possible. Although home hospice care has its limits in terms of pain alleviation and complications resulting from a disease, the users´ experience is satisfactory and meets their expectations. The contribution of the thesis lies in uncovering deficiencies in home hospice care and the provision of identified information to the care providers and other health care workers, thus enhancing the awareness of this care among health professionals and family members of seriously ill patients.