The aim of this study was to explore the experience of carers of family members dying at home with particular reference to their expectations and preparedness for the dying process. It was a qualitative, longitudinal study which initially followed a grounded theory approach. However, as a theatrical metaphor became apparent from the data the approach changed to dramaturgical analysis. Face to face semi-structured interviews were conducted with fifteen carers before and after the death of their family member. Carers were found to be performing a leading role in home palliative care but they experienced a universal sense of uncertainty and of being unrehearsed for their role in the dying process. They were reluctant to seek information to give them a script for their performance because it was painful and difficult to contemplate their family member dying. They needed the direction of health professionals and the support of paid carers but had variable experiences of these services. Carers’ performance types were also variable but tended to be towards the combative or the pragmatic end of a continuum. Their experience was illuminated through the dramaturgical metaphor of a play called the Carer’s Initiation. The climax of the play was the death of the family member followed by the finale in which they watch over the body until it is removed and they finally face a future without their family member. The carer’s initiation highlighted policy and practice implications for improving the preparation and support of carers for the dying process.

Allt fler människor i samhället dör på sjukhus. Detta gör att sjuksköterskan får ett större ansvarsområde i sin yrkesfunktion i relation till patientens döendeprocess. När patienten kommer till insikt om att livet är på väg att ta slut aktiveras en av de mest grundläggande försvarsmekanismer som människan har, ångest. För att sjuksköterskan skall kunna stödja patienten i upplevelsen av oro och ångest i döendeprocessen är det av betydelse att öka kunskapen inom omvårdnadsvetenskapen. Därför var syftet med denna litteraturstudie att beskriva patienters upplevelse av oro och ångest i döendeprocessen. I litteraturstudien granskades 11 vetenskapliga artiklar. I resultatet framkom 5 teman: ångest en del av döden, behovet av att få diskutera sin upplevelse av ångest, faktorer som påverkar patientens upplevda oro och ångest, patientens ångest relaterat till vårdteamet och familjen och att acceptera döden i relation till oro och ångest. Ångest är något naturligt för patienten att uppleva i döendeprocessen. Ångesten håller tillbaks patienten och gör att patienten får möjlighet att sammanfatta sitt levda liv vilket i slutändan gör att patienten kan acceptera döden. Det finns många faktorer som påverkar, framkallar och förstärker den ångesten patienten upplever. Detta kan vara alltifrån en förändring i omvårdnadsrutiner till ett symtom som inte går att kontrollera. Det finns även en positiv sida av ångest då de relationer patienten har till människor i sin omgivning kan förstärkas. Sjukvården ser patienten och närstående som en enhet vilket medförde att patienten kände sig tvingad att dela med sig av informationen till närstående, vilket förstärkte patientens ångest. Det behövs mer forskning för att öka kunskapen hos hälso- och sjukvårdspersonal om patienters upplevelser av ångest i döendeprocessen. / An increasing number of persons from the society die in hospitals rather than at home. This allows the nurse to gain a greater responsibility in their professional function in relation to the patients’ process of dying. When the patient realizes that life has reached its end, anxiety is perceived which is a natural defense mechanism of humans. To provide a basis for nurses to support the patient in this experience of anxiety, it is essential to improve the knowledge of the dying process in nursing science. The purpose of this literature study was therefore to describe patients’ experience of anxiety during the process of dying. In this study, 11 scientific articles was scrutinized and used as a basis for the result. This revealed five classes of studies: anxiety as a part of death, patients need for discussing their experience of anxiety, elements that affect the patients experienced anxiety, the patients anxiety related to the care team and the family and the acceptance of death related to anxiety. Anxiety is a natural part of the dying process. The anxiety slows down the patient, who is then able to summarize its life and to finally accept death. Many elements affects, provoke and amplifies the experienced anxiety for example changed routines or untreatable symptoms. There are also beneficial effects of anxiety since relations that the patient have with its relatives may be strengthened. However, healthcare currently consider the patient and its relatives as a unit, which may force patients to share information about their health status which may lead to an amplified sense of anxiety. More research is essential in order to enhance the knowledge among healthcare personnel of patients’ experience of anxiety in the process of dying.