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Living with haemodialysis close to death - patients' and close relatives' experiences
Sophiahemmet University.ORCID iD: 0000-0002-3647-1686
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.
Keyword [en]
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
Nursing
Identifiers
URN: urn:nbn:se:shh:diva-1362ISBN: 978-91-7549-195-0 (print)OAI: oai:DiVA.org:shh-1362DiVA: diva2:622930
Public defence
2013-06-14, Erforssalen, Sophiahemmet Högskola, Valhallavägen 91, Ingång R, Stockholm, 13:00
Opponent
Supervisors
Available from: 2013-05-23 Created: 2013-05-23 Last updated: 2016-06-09Bibliographically approved
List of papers
1. Living with haemodialysis when nearing end of life
Open this publication in new window or tab >>Living with haemodialysis when nearing end of life
2012 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 1, 45-52 p.Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES: The aim of this study was to describe and to elucidate the meanings of being severely ill living with haemodialysis when nearing end of life.

INTRODUCTION: To have end stage renal disease and to be treated with maintenance haemodialysis implies being dependent on lifelong treatment. Several studies have reported that these patients suffer a high symptom burden and an impaired quality of life due to both disease and treatment. In the dialysis unit, where the focus is on handling technology and maintaining life, end of life care may be neglected or overlooked. Nevertheless, mortality rates show that about one-fourth of patients in haemodialysis care are in their last year of life.

DESIGN: A qualitative interpretative design was used.

METHODS: Serial qualitative interviews over a period of 12 months were conducted with eight patients (aged 66-87). Altogether text of 31 interviews was interpreted using a phenomenological hermeneutical method in three phases. The study is ethically approved.

FINDINGS: The structural analysis resulted in 11 subthemes and thereafter the following three themes were formulated; being subordinate to the deteriorating body, changing outlook on life and striving for upheld dignity. The comprehensive interpretation revealed that being severely ill living with haemodialysis near the end of life means living with suffering simultaneously with reconciliation and well-being. Further, the meanings are understood as intertwined with being old.

CONCLUSIONS: Findings contribute to an increased awareness of the complexities of these patients' life worlds and their meanings, and thus of the importance to listen to their experiences and their understandings. Findings suggest that to integrate the philosophy of palliative care in haemodialysis units may improve care for patients who are living with haemodialysis and approaching the end of their lives.

Keyword
End stage renal disease, Haemodialysis, End of life, Palliative care, Phenomenological hermeneutics, Serial interviews, Qualitative, Lived experience
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-1191 (URN)10.1111/j.1471-6712.2011.00902.x (DOI)21605154 (PubMedID)
Available from: 2012-11-27 Created: 2012-11-27 Last updated: 2014-09-29Bibliographically approved
2. Thoughts on death and dying when living with haemodialysis approaching end of life
Open this publication in new window or tab >>Thoughts on death and dying when living with haemodialysis approaching end of life
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2012 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 15-16, 2149-59 p.Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES: To describe inner thoughts and feelings relating to death and dying when living with haemodialysis approaching end of life.

BACKGROUND: Patients who undergo maintenance haemodialysis suffer a significant symptom burden and an impaired quality of life. The high mortality rate in these patients indicates that about one-fourth of them are in their last year of life, suggesting the presence of death and dying in the haemodialysis unit.

DESIGN: A qualitative descriptive design was used. Methods.  A total of 31 qualitative interviews were conducted with eight patients (aged 66-87) over a period of 12 months. Qualitative content analysis was used to analyse data.

RESULTS: The analysis revealed 10 subthemes that were sorted into three main themes. Being aware that death may be near comprises being reminded of death and dying by the deteriorating body, by the worsening conditions and deaths of fellow patients, and by knowing haemodialysis treatment as a border to death. Adapting to approaching death comprises looking upon death as natural, preparing to face death, hoping for a quick death and repressing thoughts of death and dying. Being alone with existential thoughts comprises a wish to avoid burdening family, lack of communication with healthcare professionals and reflections on haemodialysis withdrawal as an hypothetic option.

CONCLUSIONS: Living with haemodialysis approaching, the end of life involves significant and complex existential issues and suffering, and patients are often alone with their existential thoughts.

RELEVANCE TO CLINICAL PRACTICE: Nurses and other healthcare professionals in haemodialysis settings need to combine technical and medical abilities with committed listening and communication skills and be open to talking about death and dying, with sensitivity to individual and changeable needs.

Keyword
Death, Dying, End of life, End-stage renal disease, Haemodialysis, Qualitative content analysis, Qualitative interviews, Serial interviews
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-1174 (URN)10.1111/j.1365-2702.2012.04156.x (DOI)22788556 (PubMedID)
Available from: 2012-11-08 Created: 2012-11-08 Last updated: 2014-09-29Bibliographically approved
3. Meanings of being a close relative of a family member treated with haemodialysis
Open this publication in new window or tab >>Meanings of being a close relative of a family member treated with haemodialysis
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2015 (English)In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 24, no 3/4, 447-456 p.Article in journal (Refereed) Published
Abstract [en]

AIMS AND OBJECTIVES:

To describe and elucidate the meanings of being a close relative of a severely ill family member treated with maintenance haemodialysis approaching the end of life.

BACKGROUND:

End-stage renal disease together with comorbidities, haemodialysis treatment and high mortality rates also affects the lives of close relatives, who report burdens and impaired quality of life. To improve care, more understanding is needed of close relatives' experiences during these patients' end of life.

DESIGN:

This study has a qualitative interpretative design.

METHODS:

Fourteen retrospective qualitative interviews were conducted with close relatives (aged 48-93 years) of deceased patients who had been treated with haemodialysis. The interview text was interpreted using a phenomenological hermeneutical method in three phases.

RESULTS:

The findings of the structural analysis were formulated as six themes: Striving to be supportive and helpful without doing harm to the ill person's self; Needing increasing strength and support; Balancing the will to help with one's own ongoing life; Increasing responsibility involving dilemmas; Striving for a good life together in the present and Living with awareness of death.

CONCLUSIONS:

Close relatives strive for balance and well-being accompanying their ill family member through the end of life. They are facing moral dilemmas and growing demands as their responsibility increases with the deterioration of their family member. Support from and interaction with the healthcare professionals is then of significance.

RELEVANCE TO CLINICAL PRACTICE:

Findings challenge healthcare professionals in haemodialysis settings to identify close relatives' individual resources and needs towards the patients' end of life. Healthcare professionals in haemodialysis settings need to offer close relatives opportunities to talk about the future and what may be expected at end of life, with or without haemodialysis. They should also contact the closest relative after the death as they may need confirmation and closure.

Keyword
Close relative, Death, Dying, End of life, End-stage renal disease, Haemodialysis, Phenomenological hermeneutics, Qualitative interviews, Retrospective interviews
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-1360 (URN)10.1111/jocn.12622 (DOI)24811430 (PubMedID)
Available from: 2013-05-23 Created: 2013-05-23 Last updated: 2015-05-11Bibliographically approved
4. End of life of patients treated with haemodialysis as narrated by their close relatives
Open this publication in new window or tab >>End of life of patients treated with haemodialysis as narrated by their close relatives
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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.

Keyword
End of life, End-stage renal disease, Haemodialysis, Qualitative content analysis, Qualitative interviews, Retrospective interviews
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-1814 (URN)10.1111/scs.12209 (DOI)25754028 (PubMedID)
Available from: 2015-03-11 Created: 2015-03-11 Last updated: 2016-03-10Bibliographically approved

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