The growing understanding of correlations between experiences and memories from a period of intensive care treatment and complaints of mental character has led to the development of various patient follow-up offers. Little, however, is known about what follow-up may mean to patients. The aim of this study was to explore the meaning of patients' lived experience of being followed-up in a programme consisting of patient diaries, post-intensive care unit (ICU) conversations and visits back to the ICU. Field notes were made from encounters with patients (n = 10) during follow-up. Then they were interviewed twice, at about 6 months (n = 8) and at about 18 months (n = 6) after discharge from hospital. The first interview focused on the patients' experience during intensive care and on their reflections on the experience. The second interview had a particular focus on the meaning for each individual of the sources for understanding that they had been offered. The data was analysed by using a hermeneutic-phenomenological approach. The study corroborated earlier research that found that patients seek to understand experiences they have undergone. They search for meaning in experiences and memories. It is realized that the diary as text and photos, in addition to conveying care and love, is important to induce postexperience reflections. It provided guideposts that follow-up conversations could pursue in the patient's quest for meaning. The conversation also provided an opening for, and could in itself be essential to, the patient's willingness to talk about experiences. It allowed the nurse to accompany the patient in his quest for meaning. The return visit appeared to be significant in the patient's quest for meaning. It was via 'feeling' the room that 'things' fell into place. The study is important in elucidating aspects that are beneficial in the patient's follow-up and which lay the basis for further development of existing and new follow-up offers.

PurposeThe aim of this study is to examine family members’ experiences of end-of-life decision-making processes in Norwegian intensive care units (ICUs) to ascertain the degree to which they felt included in the decision-making process and whether they received necessary information. Were they asked about the patient’s preferences, and how did they view their role as family members in the decision-making process?MethodsA constructivist interpretive approach to the grounded theory method of qualitative research was employed with interviews of 27 bereaved family members of former ICU patients 3–12 months after the patient’s death.ResultsThe core finding is that relatives want a more active role in end-of-life decision-making in order to communicate the patient’s wishes. However, many consider their role to be unclear, and few study participants experienced shared decision-making. The clinician’s expression “wait and see” hides and delays the communication of honest and clear information. When physicians finally address their decision, there is no time for family participation. Our results also indicate that nurses should be more involved in family–physician communication.ConclusionsFamilies are uncertain whether or how they can participate in the decision-making process. They need unambiguous communication and honest information to be able to take part in the decision-making process. We suggest that clinicians in Norwegian ICUs need more training in the knowledge and skills of effective communication with families of dying patients.Electronic supplementary materialThe online version of this article (doi:10.1007/s00134-011-2253-x) contains supplementary material, which is available to authorized users.

In this article, we report findings from a qualitative study that explored how the relatives of intensive care unit patients experienced the nurses' role and relationship with them in the end-of-life decision-making processes. In all, 27 relatives of 21 deceased patients were interviewed about their experiences in this challenging ethical issue. The findings reveal that despite bedside experiences of care, compassion and comfort, the nurses were perceived as vague and evasive in their communication, and the relatives missed a long-term perspective in the dialogue. Few experienced that nurses participated in meetings with doctors and relatives. The ethical consequences imply increased loneliness and uncertainty, and the experience that the relatives themselves have the responsibility of obtaining information and understanding their role in the decision-making process. The relatives therefore felt that the nurses could have been more involved in the process.

Patients' recollections of intensive care are often a confusing mixture of 'reality', past experiences and vivid dreams. Many intensive care patients find it difficult to make sense of their experiences. In our intensive care unit, for several years, we have been using patient diaries to record the patient's stay in intensive care. The diaries are utilised as part of a follow-up programme that helps the patient to understand, and come to terms with, their intensive care admission. The diaries have been positively evaluated by both patients and staff, and are a valuable tool for learning from patents' experiences.