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  • 1.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Benzein, Eva
    Persson, Carina
    Complexities of the processes towards palliative care for patients with end-stage kidney disease: Physicians' and nurses' perspectives2017Conference paper (Other academic)
  • 2.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Klang, Birgitta
    Lundh Hagelin, Carina
    Sophiahemmet University.
    Jacobson, Stefan H
    Andreassen Gleissman, Sissel
    Sophiahemmet University.
    End of life of patients treated with haemodialysis as narrated by their close relatives2015In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 29, no 4, p. 776-784Article in journal (Refereed)
    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.

  • 3.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Benzein, Eva
    Lindberg, Jenny
    Persson, Carina
    End-of-life and palliative care of patients on maintenance hemodialysis treatment: A focus group study2019In: BMC Palliative Care, ISSN 1472-684X, E-ISSN 1472-684X, Vol. 18, no 1, article id 89Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Despite 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.

    METHODS: Four focus group interviews were conducted with renal nurses (17) and physicians (5) in Sweden. Qualitative content analysis was used to analyze data.

    RESULTS: Participants 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.

    CONCLUSIONS: Nurses 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.

  • 4. Sandgren, Anna
    et al.
    Axelsson, Lena
    Sophiahemmet University.
    Bylund Grenklo, Tove
    Benzein, Eva
    Family members' expressions of dignity in palliative care2017Conference paper (Other academic)
  • 5.
    Axelsson, Lena
    Sophiahemmet University.
    Living with haemodialysis close to death - patients' and close relatives' experiences2013Doctoral 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.

  • 6.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Randers, Ingrid
    Sophiahemmet University.
    Jacobson, Stefan H
    Klang, Birgitta
    Living with haemodialysis when nearing end of life2012In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 26, no 1, p. 45-52Article in journal (Refereed)
    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.

  • 7.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Klang, Birgitta
    Lundh Hagelin, Carina
    Sophiahemmet University.
    Jacobson, Stefan H
    Andreassen Gleissman, Sissel
    Sophiahemmet University.
    Meanings of being a close relative of a family member treated with haemodialysis2015In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 24, no 3/4, p. 447-456Article in journal (Refereed)
    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.

  • 8.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Alvariza, Anette
    Carlsson, Nina
    Cohen, S. Robin
    Sawatzky, Richard
    Årestedt, Kristofer
    Measuring quality of life in life-threatening illness: Content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers2019Conference paper (Other academic)
  • 9.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Benzein, Eva
    Lindberg, Jenny
    Persson, Carina
    Processes toward the end of life and dialysis withdrawal: Physicians' and nurses' perspectives2019In: Nursing Ethics, ISSN 0969-7330, E-ISSN 1477-0989, article id 969733019848050Article in journal (Refereed)
    Abstract [en]

    BACKGROUND: Nurses and physicians in nephrology settings provide care for patients with end-stage kidney disease receiving hemodialysis treatment along a complex illness trajectory.

    AIM: The aim was to explore physicians' and nurses' perspectives on the trajectories toward the end of life involving decisions regarding hemodialysis withdrawal for patients with end-stage kidney disease.

    RESEARCH DESIGN AND PARTICIPANTS: A qualitative research approach was used. Four mixed focus group interviews were conducted with renal physicians (5) and nurses (17) in Sweden. Qualitative content analysis was used to analyse data.

    ETHICAL CONSIDERATIONS: Ethical approval was obtained (Dnr 2014/304-31).

    FINDINGS AND DISCUSSION: Findings illuminated multi-faceted, intertwined processes encompassing healthcare professionals, patients, and family members. The analysis resulted in four themes: Complexities of initiating end-of-life conversations, Genuine attentiveness to the patient's decision-making process, The challenge awaiting the family members' processes, and Negotiating different professional responsibilities. Findings showed complexities and challenges when striving to provide good, ethical care which are related to beneficence, nonmaleficence, and self-determination, and which can give rise to moral distress.

    CONCLUSION: There are ethical challenges and strains in the dialysis context that healthcare professionals may not always be prepared for. Supporting healthcare professionals in not allowing complexities to hinder the patient's possibilities for shared decision-making seems important. An open and continual communication, including family meetings, from dialysis initiation could serve to make conversations involving decisions about hemodialysis withdrawal a more natural routine, as well as build up a relationship of trust necessary for the advance care planning about the end of life. Healthcare professionals should also receive support in ethical reasoning to meet these challenges and handle potential moral distress in the dialysis context.

  • 10.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Björvell, Catrin
    Mattiasson, Anne-Cathrine
    Sophiahemmet University.
    Randers, Ingrid
    Sophiahemmet University.
    Swedish Registered Nurses' incentives to use nursing diagnoses in clinical practice2006In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 15, no 8, p. 936-45Article in journal (Refereed)
    Abstract [en]

    AIMS AND OBJECTIVES: The purpose of this study was to describe Registered Nurses' incentives to use nursing diagnoses in clinical practice. BACKGROUND: The use of nursing diagnoses is scarce in Swedish patient records. However, there are hospital wards were all nurses formulate and use nursing diagnoses in their daily work. This leads to the question of what motivates these nurses who do use nursing diagnoses in clinical practice. DESIGN: A qualitative descriptive design. METHODS: A purposeful sampling of 12 Registered Nurses was used. Qualitative interviews to collect data and a content analysis were performed. RESULTS: Five categories were identified: identification of the patient as an individual and as a whole, a working tool for facilitating nursing care, increasing awareness within nursing, support from the management and influence on the professional role. The principle findings of this study were: (i) that the Registered Nurses perceived that nursing diagnoses clarified the patient's individual needs and thereby enabled them to decide on more specific nursing interventions, (ii) that nursing diagnoses were found to facilitate communication between colleagues concerning patient care and thus promoted continuity of care and saved time and (iii) that nursing diagnoses were perceived to increase the Registered Nurses' reflective thinking leading to a continuous development of professional knowledge. CONCLUSIONS: The present findings suggest that the incentives to use nursing diagnoses originate from effects generated from performing a deeper analysis of the patient's nursing needs. Further research is needed to test and validate the usability and consequences of using nursing diagnoses in clinical practice. Motivating factors found in this study may be valuable to Registered Nurses for the use and development of nursing diagnoses in clinical care. Moreover, these factors may be of relevance in other countries that are in a similar situation as Sweden concerning application of nursing diagnoses.

  • 11.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Randers, Ingrid
    Sophiahemmet University.
    Lundh Hagelin, Carina
    Sophiahemmet University.
    Jacobson, Stefan H
    Klang, Birgitta
    Thoughts on death and dying when living with haemodialysis approaching end of life2012In: Journal of Clinical Nursing, ISSN 0962-1067, E-ISSN 1365-2702, Vol. 21, no 15-16, p. 2149-59Article in journal (Refereed)
    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.

  • 12.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Alvariza, Anette
    Lindberg, Jenny
    Öhlén, Joakim
    Håkanson, Cecilia
    Sophiahemmet University.
    Reimertz, Helene
    Fürst, Carl-Johan
    Årestedt, Kristofer
    Unmet palliative care needs among patients with end-stage kidney disease: a national registry study about the last week of life2018In: Journal of Pain and Symptom Management, ISSN 0885-3924, E-ISSN 1873-6513, Vol. 55, no 2, p. 236-244Article in journal (Refereed)
    Abstract [en]

    CONTEXT: End-stage kidney disease (ESKD) is characterized by high physical and psychological burden and therefore, more knowledge about the palliative care provided close to death is needed.

    OBJECTIVES: To describe symptom prevalence, relief and management during the last week of life, as well as end-of-life communication, in patients with ESKD.

    METHODS: This study was based on data from the Swedish Register of Palliative Care. Patients aged 18 or older who died from a chronic kidney disease, with or without dialysis treatment (ICD-10-SE; N18.5 or N18.9), during 2011 and 2012 were selected.

    RESULTS: 472 patients were included. Of six predefined symptoms, pain was the most prevalent (69%), followed by respiratory secretion (46%), anxiety (41%), confusion (30%), shortness of breath (22%), and nausea (17%). Of patients with pain and/or anxiety, 32% and 44% respectively were only partly relieved or not relieved at all. Of patients with the other symptoms, a majority (55%-84%) were partly relieved or not relieved at all. End-of-life discussions were reported in 41% of patients and 71% of families. A minority died in specialized palliative care: 8% in hospice/in-patient palliative care and 5% in palliative home care. Of all patients, 19% died alone. Bereavement support was offered to 38% of families.

    CONCLUSION: Even if death is expected, the majority of patients dying with ESKD had unmet palliative care needs regarding symptom management, advance care planning, and bereavement support.

  • 13.
    Axelsson, Lena
    et al.
    Sophiahemmet University.
    Alvariza, Anette
    Lindberg, Jenny
    Öhlén, Joakim
    Håkanson, Cecilia
    Sophiahemmet University.
    Reimertz, Helene
    Fürst, Carl Johan
    Årestedt, Kristofer
    Unmet palliative care needs among patients with end-stage kidney disease: A national registry study about the last week of life2017Conference paper (Other academic)
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