Meanings of being a close relative of a family member treated with haemodialysis approaching end of life

Axelsson, Lena; Klang, Birgitta; Hagelin, Carina Lundh; Jacobson, Stefan H.; Gleissman, Sissel Andreassen

doi:10.1111/jocn.12622

Cited by 14 publications

(13 citation statements)

References 44 publications

(90 reference statements)

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“…These carers were nervous and conscious of the patients and they anticipated the death of a loved one when they encountered emergent events. It is similar to the study conducted by Axelsson, Klang, Hagelin, Jacobson, and Gleissman (). They mentioned that patient carers should be supportive of haemodialysis patients, who frequently experienced uncertainty about death and dying and Kutash and Northrop () illustrated overwhelming instability among the family carers in an intensive care unit, who described experiencing shock, relief, hope and uncertainty.…”

Section: Discussionsupporting

confidence: 88%

Experience of the waiting area as perceived by haemodialysis patients and family carers

Kim

Bhandari

et al. 2017

Journal of Advanced Nursing

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Section: Discussionsupporting

confidence: 88%

Experience of the waiting area as perceived by haemodialysis patients and family carers

Kim

Bhandari

et al. 2017

Journal of Advanced Nursing

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“…Participants in the present study reflected that family members should also be involved in conversations earlier in the illness trajectory. Likewise, bereaved family members have expressed wishes for earlier invitations to discuss the present and future illness situation regarding deterioration while on hemodialysis [11, 37] and also suggested that healthcare professionals have a responsibility to include aspects other than medical ones in conversations e.g. emotional and social-practical issues [37].…”

Section: Discussionmentioning

confidence: 99%

“…Findings show that routines vary concerning bereavement support. Yet, to offer post-bereavement meetings at dialysis centers has come forth as important to family members [11]. There are in Sweden regional renal care guidelines including bereavement support but still this support of family members is often lacking [14].…”

Section: Discussionmentioning

confidence: 99%

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End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study

et al. 2019

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BackgroundDespite complex illness trajectories and a high symptom burden, palliative care has been sub-optimal for patients with end-stage kidney disease and hemodialysis treatment who have a high rate of hospitalization and intensive care towards end of life. There is a growing awareness that further development of palliative care is required to meet the needs of these patients and their family members. In this process, it is important to explore healthcare professionals’ views on provision of care. The aim of this study was therefore to describe nurses’ and physicians’ perspectives on end-of-life and palliative care of patients treated with maintenance hemodialysis.MethodsFour focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data.ResultsParticipants were committed to giving the best possible care to their patients, but there were challenges and barriers to providing quality palliative care in nephrology settings. Professionals described palliative care as end-of-life care associated with hemodialysis withdrawal or palliative dialysis, but also identified care needs and possibilities that are in line with an earlier integrated palliative approach. This was perceived as complex from an organizational point of view. Participants identified challenges related to coordination of care and different perspectives on care responsibilities that impacted symptom management and patients’ quality of life. Communication issues relating to the provision of palliative care were revealed where the hemodialysis setting was regarded as an impediment, and personal and professional experiences, beliefs and knowledge were considered of major importance.ConclusionsNurses and physicians identified a need for the improvement of both late and earlier palliative care approaches. The results highlighted a requirement for and possibilities of training, counselling and support of health care professionals in the dialysis context. Further, multi-professional palliative care collaborations should be developed to improve the coordination and organization of end-of-life and palliative care of patients and their family members. A climate allowing conversations about advance care planning throughout the illness trajectory may facilitate the gradual integration of palliative care alongside life-prolonging treatment for improved support of patients and families.

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“…Thus, nurses in haemodialysis care may facilitate the dialogue, the planning of end‐of‐life care and follow‐up through the end‐of‐life period. This is of importance also to their close relatives when they are facing moral dilemmas and growing demands with the deterioration of their family member . Findings also show that patients may need closure after their long relationships with the nurses/healthcare professionals in the haemodialysis unit.…”

Section: Discussionmentioning

confidence: 99%

End of life of patients treated with haemodialysis as narrated by their close relatives

Axelsson

Klang

Hagelin

et al. 2015

Scandinavian Caring Sciences

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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.

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Meanings of being a close relative of a family member treated with haemodialysis approaching end of life

Abstract: Meanings of being a close relative of a family member treated with haemodialysis. Background End stage renal disease together with co-morbidities, haemodialysis treatment, Journal of Clinical

Cited by 14 publications

References 44 publications

Experience of the waiting area as perceived by haemodialysis patients and family carers

Experience of the waiting area as perceived by haemodialysis patients and family carers

End-of-life and palliative care of patients on maintenance hemodialysis treatment: a focus group study

End of life of patients treated with haemodialysis as narrated by their close relatives

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