| 1. |
- Axelsson, Lena
(författare)
-
Living with haemodialysis close to death - patients' and close relatives' experiences
- 2013
-
Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- 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.
|
|
| 2. |
- Axelsson, Lena, et al.
(författare)
-
Thoughts on death and dying when living with haemodialysis approaching end of life
- 2012
-
Ingår i: Journal of Clinical Nursing. - : Wiley. - 0962-1067 .- 1365-2702. ; 21:15-16, s. 2149-59
-
Tidskriftsartikel (refereegranskat)abstract
- 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.
|
|
| 3. |
|
|
| 4. |
|
|
| 5. |
- Klarare, Anna, et al.
(författare)
-
Team Interactions in Specialized Palliative Care Teams: A Qualitative Study
- 2013
-
Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 16:9, s. 1062-1069
-
Tidskriftsartikel (refereegranskat)abstract
- Background: Teamwork is a standard of care in palliative care and that is emphasized by leading organizations. When interdisciplinary teams communicate their varied assessments, outcomes may be more than additive due to the synthesis of information. Interprofessionality does not guarantee multidimensionality in health care interventions, however, and that interprofessional teams promote collaboration may be questioned. Aim: The aim was to explore team interaction among team members in specialized palliative care teams. Design: Semistructured interviews were conducted with health professionals working in specialized palliative home care teams. The interviews were analyzed by content analysis. Setting/participants: Participants were recruited from specialized palliative care units in Sweden. The 15 interviewees included 4 men and 11 women. Physcians, nurses, paramedical staff, and social workers were included. Results: Organizational issues like resources and leadership have a great impact on delivery of care. Competence was mirrored in education, collaboration, approach, and support within the team; while communication was described as key to being a team, resolving conflict, and executing palliative care. Conclusion: Communication and communication patterns within the team create the feeling of being a team. Team climate and team performance are significantly impacted by knowledge and trust of competence in colleagues, with other professions, and by the available leadership. Proportions of different health professionals in the team have an impact on the focus and delivery of care. Interprofessional education giving clarity on one's own professional role and knowledge of other professions would most likely benefit patients and family caregivers.
|
|
| 6. |
|
|
| 7. |
- Lindqvist, Olav, et al.
(författare)
-
Complexity in Non-Pharmacological Caregiving Activities at the End of Life : An International Qualitative Study
- 2012
-
Ingår i: PLoS Medicine. - San Francisco : Public Library of Science. - 1549-1277 .- 1549-1676. ; 9:2, s. e1001173-
-
Tidskriftsartikel (refereegranskat)abstract
- Background: In late-stage palliative cancer care, relief of distress and optimized well-being become primary treatment goals. Great strides have been made in improving and researching pharmacological treatments for symptom relief; however, little systematic knowledge exists about the range of non-pharmacological caregiving activities (NPCAs) staff use in the last days of a patient's life. Methods and Findings: Within a European Commission Seventh Framework Programme project to optimize research and clinical care in the last days of life for patients with cancer, OPCARE9, we used a free-listing technique to identify the variety of NPCAs performed in the last days of life. Palliative care staff at 16 units in nine countries listed in detail NPCAs they performed over several weeks. In total, 914 statements were analyzed in relation to (a) the character of the statement and (b) the recipient of the NPCA. A substantial portion of NPCAs addressed bodily care and contact with patients and family members, with refraining from bodily care also described as a purposeful caregiving activity. Several forms for communication were described; information and advice was at one end of a continuum, and communicating through nonverbal presence and bodily contact at the other. Rituals surrounding death and dying included not only spiritual/religious issues, but also more subtle existential, legal, and professional rituals. An unexpected and hitherto under-researched area of focus was on creating an aesthetic, safe, and pleasing environment, both at home and in institutional care settings. Conclusions: Based on these data, we argue that palliative care in the last days of life is multifaceted, with physical, psychological, social, spiritual, and existential care interwoven in caregiving activities. Providing for fundamental human needs close to death appears complex and sophisticated; it is necessary to better distinguish nuances in such caregiving to acknowledge, respect, and further develop end-of-life care.
|
|
| 8. |
- Lindqvist, Olav, et al.
(författare)
-
Four essential drugs needed for quality care of the dying : a Delphi-study based international expert consensus opinion
- 2013
-
Ingår i: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 16:1, s. 38-43
-
Tidskriftsartikel (refereegranskat)abstract
- Abstract Purpose: The majority of dying patients do not have access to necessary drugs to alleviate their most common symptoms, despite evidence of drug efficacy. Our aim was to explore the degree of consensus about appropriate pharmacological treatment for common symptoms in the last days of life for patients with cancer, among physicians working in specialist palliative care. Material and methods: Within OPCARE9, a European Union seventh framework project aiming to optimize end-of-life cancer care, we conducted a Delphi survey among 135 palliative care clinicians in nine countries. Physicians were initially asked about first and second choice of drugs to alleviate anxiety, dyspnea, nausea and vomiting, pain, respiratory tract secretions (RTS), as well as terminal restlessness. Results: Based on a list of 35 drugs mentioned at least twice in the first round (n=93), a second Delphi round was performed to determine ≤5 essential drugs for symptom alleviation in the last 48 hours of life that should be available even outside specialist palliative care. There was ≥80% consensus among the participants (n=90) regarding morphine, midazolam, and haloperidol as essential drugs. For RTS, there was consensus about use of an antimuscarinic drug, with 9%-27% of the physicians each choosing one of four different drugs. Conclusion: Based on this consensus opinion and other literature, we suggest four drugs that should be made available in all settings caring for dying patients with cancer, to decrease the gap between knowledge and practice: morphine (i.e., an opioid), midazolam (a benzodiazepine), haloperidol (a neuroleptic), and an antimuscarinic.
|
|
| 9. |
|
|
| 10. |
|
|
