• Lena Axelsson, Birgitta Klang, Lundh Hagelin Carina C Sophiahemmet University, Stockholm, Sweden. Department of Learning, Informatics, , Stefan H Jacobson, and Gleissman Sissel Andreassen SA Sophiahemmet University, Stockholm, Sweden. Department of Clinical Scienc.
• Sophiahemmet University, Stockholm, Sweden.
• Scand J Caring Sci. 2015 Dec 1; 29 (4): 776-84.

AimThe study aimed to describe end of life for patients treated with maintenance haemodialysis as narrated by their close relatives.IntroductionMany patients undergoing haemodialysis are older, have several comorbidities and underestimated symptoms and are in their last year of life. To improve care, we need to know more about their end-of-life situation.DesignQualitative and descriptive.MethodsQualitative retrospective interviews were conducted with 14 close relatives of deceased haemodialysis patients (3-13 months after death). Data were analysed using qualitative content analysis. The study is ethically approved.FindingsIn the last months, a gradual deterioration in health with acute episodes necessitating hospital admissions was described. This involved diminishing living space and expressions of dejection, but also of joy. Three patterns emerged in the last weeks: uncertain anticipation of death as life fades away; awaiting death after haemodialysis withdrawal; and sudden but not unexpected death following intensive care. Findings show complexities of decisions on haemodialysis withdrawal.ConclusionsDifferent end-of-life patterns all involved increasingly complex care needs and existential issues. Findings show a need for earlier care planning. The identification of organisational factors to facilitate continuity and whole person care to meet these patients' specific care needs with their complex symptom burdens and comorbidities is needed. Findings indicate the need for integration of a palliative care approach in the treatment of patients in haemodialysis care.© 2015 Nordic College of Caring Science.

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