Att leva nära döden : patienters och vårdpersonals erfarenheter inom hospicevård

Sammanfattning: This research focused on experiences of dying patients and hospice nurses in a hospice unit. The research objectives were to (i) acquire more extensive knowledge about how dying patients and hospice nurses experience life and death and (ii) describe patients who were cared for during a 10-year period in an inpatient hospice ward. Data were gathered via interviews with 19 nurses and 11 patients. An interpretive description method was used to analyze interview results. Data were also gathered from institutional care records that included gender, age, marital status, diagnosis, referral source, and length of stay (666 women and 555 men). Descriptive statistics were used to describe basic features of the study's data and to compare differences between women and men. The main finding from interviewing the nurses was that they were struggling to acknowledge and unveil the person within the weakening body. In doing so, they used various strategies such as (i) striving to understand patients’ experiences of body function loss; (ii) encouraging patients to uphold body functions and daily habits; (iii) acknowledging and balancing patients’ need for body control; and (iv) providing tender care for the body. After 2 years of work in hospice care, nurses described that facing the dying and death of many patients had an impact on daily work and private life. The close relationship with the dying patient led to existential issues concerning the meaning of life and death, which were conceptualized into this theme: death as an agent of change. Eleven years later, the presence of death took a less dominant place in the nurses’ lives, and the theme became: death as a companion in life. In the long-term, nurses emphasized that their relationships with dying patients fostered their professional and personal growth. The findings from interviewing the patients revealed that when death became a reality, life took on new meaning, and they acquired new values that were important to preserve or protect; this triggered need for feeling secure within this situation. These revelations were manifest in three sub-themes: (i) when possible death becomes a reality; (ii) living with death as a reality, and (iii) a need for a feeling of security. And this main theme was conceptualized: making sense of life close to death. Results regarding patients in hospice ward care over a 10-year period revealed significant differences between women and men. More women than men were single, had cancer with relatively short trajectories, and were referred from the oncology department. More men than women were diagnosed with types of cancer with somewhat longer trajectories. Despite longer trajectories, length of stay was shorter for men than for women. The most frequent referral source was the hospital. But compared to women, men (particularly younger men) were more often referred from home-based hospice care. The findings expand knowledge about dying and its various configurations; consequently, care and support needs will vary. For the dying person, it is important to know that care is provided according to the person’s preferences and given when needed.