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End of life of patients treated with haemodialysis as narrated by their close relatives
Sophiahemmet University.ORCID iD: 0000-0002-3647-1686
Sophiahemmet University.ORCID iD: 0000-0002-0197-9121
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2015 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 4, 776-784 p.Article in journal (Refereed) Published
Abstract [en]

AIM: The study aimed to describe end of life for patients treated with maintenance haemodialysis as narrated by their close relatives.

INTRODUCTION: Many 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.

DESIGN: Qualitative and descriptive.

METHODS: Qualitative 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.

FINDINGS: In 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.

CONCLUSIONS: Different 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.

Place, publisher, year, edition, pages
2015. Vol. 29, no 4, 776-784 p.
Keyword [en]
End of life, End-stage renal disease, Haemodialysis, Qualitative content analysis, Qualitative interviews, Retrospective interviews
National Category
URN: urn:nbn:se:shh:diva-1814DOI: 10.1111/scs.12209PubMedID: 25754028OAI: diva2:794376
Available from: 2015-03-11 Created: 2015-03-11 Last updated: 2016-03-10Bibliographically approved
In thesis
1. Living with haemodialysis close to death - patients' and close relatives' experiences
Open this publication in new window or tab >>Living with haemodialysis close to death - patients' and close relatives' experiences
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

The overall aim of this thesis is to generate  understanding and knowledge a bout the experiences of  patients living with haemodialysis, and their close relati ves, near the end of life. In studies I and II we  conducted a series of 31 qualitative interviews over a period of 12 months with 8 severely ill patients  (aged 66–87) treated with haemodialysis. For study I the text of the interviews was analysed using  phenomenological hermeneutics to describe and to el ucidate the meanings of being severely ill living  with haemodialysis when nearing end of life. For study II the text was analysed using qualitative content  analysis to describe inner thoughts and feelings  relating to death and dying of these patients. For studies III and IV, we conducted 14 retrospective qualitative interviews with close relatives of  deceased patients treated with haemodialysis about th eir experiences during end of the patient’s life.  For paper III the interview text was analysed usi ng phenomenological hermeneu tics to describe and  elucidate the meanings of being a close relative at the  end of life of a severely ill family member treated  with maintenance haemodialysis. For paper IV the text was analysed using qualitative content analysis to  describe end of life for the patients from the perspective of their close relatives. The findings of study I suggest that being severely i ll and living with haemodialysis near the end of life  means living with suffering from a deteriorating body, a high symptom burden, and dependence on  advanced medical technology, simultaneously with r econciliation and well-being. The meanings of living  with illness and dialysis are intertwined with the meanings of being old.  Study II shows that thoughts and feelings about deat h and dying are significant and complex for those  living with haemodialysis as they approach the end of life. Patients experience  a multifaceted presence of  death. Their awareness of approaching death may include their repressing of thoughts of death, not as  denial, but to allow them to focus on living as fully as possible the time they have left. Study III shows that close relatives strive to maintain balance and well-being for themselves and for  the patient, which we interpreted as their striving to regain balance, and inner equilibrium in their  changed and challenged rhythm of life. Study IV shows that after gradual deterioration and increasing  care needs, older patients in haemodialysis care with  co-morbidities follow three different main paths at  the end of life: uncertain anticipation of death; awaiting death after dialysis withdrawal; and sudden but  not unexpected death. The ends of their lives are marked by complex symptoms and existential issues  related to haemodialysis treatment and withdrawal, and  their uncertainty of what  to expect at the end of  life suggests the need for increased continuity and coordination of whole person care. Both patients and  their close relatives are often alone with their existential thoughts. In their complex lifeworlds, intertwined meanings  of living with illness and maintenance of life with  haemodialysis treatment near the end of life show that patients live in a borderland of living-dying that is  shared by the close relative. Patients and close relatives focus on living when death is close but uncertain,  with severe illness and the maintenance of life through advanced technology.  Integrating the philosophy of palliative care (with a focus on symptom relief, team work,  communication, relationships, and support of family members) into dialysis care, may support health  care professionals in haemodialysis units and other re nal contexts, to improve the care of severely ill  patients, both earlier in their illness and as they approach the end of their lives.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet, 2013. 65 p.
Close relative, Death, Dying, End of life, End-stage renal disease, haemodialysis, Palliative care, Phenomenological-hermeneutics, Qualitative content analysis, Retrospective interviews, Serial interviews
National Category
urn:nbn:se:shh:diva-1362 (URN)978-91-7549-195-0 (ISBN)
Public defence
2013-06-14, Erforssalen, Sophiahemmet Högskola, Valhallavägen 91, Ingång R, Stockholm, 13:00
Available from: 2013-05-23 Created: 2013-05-23 Last updated: 2016-06-09Bibliographically approved

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Axelsson, LenaLundh Hagelin, CarinaAndreassen Gleissman, Sissel
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