| 1. |
- Friedrichsen, Maria, 1966-, et al.
(författare)
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Assistant nurses' experiences of thirst and ethical dilemmas in dying patients in specialized palliative care — A qualitative study
- 2023
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Ingår i: Journal of Advanced Nursing. - : John Wiley & Sons. - 0309-2402 .- 1365-2648. ; 79:11, s. 4292-4303
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Tidskriftsartikel (refereegranskat)abstract
- AimsTo describe assistant nurses' experiences of thirst and ethical challenges in relation to thirst in terminally ill patients in specialized palliative care (PC) units.DesignA qualitative, reflexive thematic design with an inductive analysis was used.MethodsData were collected during November 2021-January 2023. Twelve qualitative interviews with assistant nurses working in five different specialized PC units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis. The study was guided by the Standards for Reporting Qualitative Research (SRQR).ResultsTwo main themes were found in this study. (1) 'A world of practice for thirst relief' where assistant nurses present a task-oriented world where the knowledge of thirst is an experience-based unspoken knowledge where mainly routines rule. (2) Ethical challenges presents different ethical problems that they meet in their practice, such as when patients express thirst towards the end of their life but are too severely ill to drink or when they watch lack of knowledge in the area among other health professionals.ConclusionThirst in dying patients is a neglected area that assistant nurses work with, without communicating it. Their knowledge of thirst and thirst relief are not expressed, seldom discussed, there are no policy documents nor is thirst documented in the patient's record. There is a need for nurses to take the lead in changing nursing practice regarding thirst.Patient or Public ContributionNo patient or public contribution.ImpactIn palliative care, previous studies have shown that dying patients might be thirsty. Assistant nurses recognize thirst in dying patients, but thirst is not discussed in the team. Nurses must consider the patient's fundamental care needs and address thirst, for example in the nursing process to ensure patients quality of life in the last days of life.Reporting MethodThe study was guided by the SRQR.What does this Article Contribute to the Wider Global Clinical Community?Thirst is a distressing symptom for all humans. However, when a patient is dying, he or she loses several functions and can no longer drink independently. The knowledge from this article contributes to our understanding of current practice and shows an area that requires immediate attention for the improvement of fundamental palliative care delivery.
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| 2. |
- Kastbom, Lisa, et al.
(författare)
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A good death from the perspective of palliative cancer patients
- 2017
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Ingår i: Supportive Care in Cancer. - : SPRINGER. - 0941-4355 .- 1433-7339. ; 25:3, s. 933-939
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Tidskriftsartikel (refereegranskat)abstract
- Although previous research has indicated some recurrent themes and similarities between what patients from different cultures regard as a good death, the concept is complex and there is lack of studies from the Nordic countries. The aim of this study was to explore the perception of a good death in dying cancer patients in Sweden. Interviews were conducted with 66 adult patients with cancer in the palliative phase who were recruited from home care and hospital care. Interviews were analysed using qualitative content analysis. Participants viewed death as a process. A good death was associated with living with the prospect of imminent death, preparing for death and dying comfortably, e.g., dying quickly, with independence, with minimised suffering and with social relations intact. Some were comforted by their belief that death is predetermined. Others felt uneasy as they considered death an end to existence. Past experiences of the death of others influenced participants views of a good death. Healthcare staff caring for palliative patients should consider asking them to describe what they consider a good death in order to identify goals for care. Exploring patients personal experience of death and dying can help address their fears as death approaches.
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| 3. |
- Kastbom, Lisa, 1978-
(författare)
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A good death from the perspective of patients with severe illness and advance care planning (ACP) in patients near end-of-life
- 2021
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- Previous research has indicated that what constitutes a good death is heterogenic and complex although there are some recurrent themes and similarities regardless individual background factors. Studies on advance care planning (ACP), i.e. making proactive plans regarding content of care and treatment limitations, on nursing home (NH) patients are rare. Positive effects of ACPs are shown, but also that these often are lacking. The overall aim with this thesis was to explore the perceptions of a good death from the perspective of patients with severe illness and to investigate, from different perspectives, experiences of ACP in a NH context. In paper I, patients with cancer in a palliative phase were interviewed on their perceptions of a good death. Death was viewed as a process and previous experiences on the death of others influenced their own perceptions. A good death was associated with living with the prospect of imminent death, preparing oneself and others for one’s death and dying comfortably, e.g. without suffering, with independence and with social relations intact. Some were comforted by their belief that death is predetermined, and that after death, there is something else. Others felt uncomfortable when they viewed death as the end of the existence. In paper II, nurses and physicians were interviewed on their experiences of the factors that shape the ACP process in NHs. Exploration of the patient’s preferences regarding content of care and treatment limitations was important, as well as integration of the patient’s preferences and the views of the family members and staff concerning these questions. ACP documentation had to be clear, updated and available for staff and the implementation and reevaluation of ACP were also considered important, according to the participants. Significance of clinicians’ perceiving beneficence as well as fear of accusations of maleficence were shown to be essential factors to contemplate. In a retrospective chart review (paper III), medical records of 367 deceased NH patients were analysed. A high prevalence of ACP was shown, using two different definitions of ACP (ACP I and ACP II). Moreover, adherence to the ACP content was strong and positive associations were seen between ACP and variables of the three research aims, such as: diagnosis (dementia), physician attendance at NH and end-of-life (EOL) care. In paper IV, family members of deceased NH patients were interviewed on their experiences of ACP in NHs. EOL issues were challenging to talk about, although the family members appreciated staff raising these questions. The patient’s preferences were sometimes explicitly or implicitly communicated. However, in some cases, family members had a feeling of the patient’s preferences, although they had not been clearly communicated. Everyday details symbolised staff commitment. The family members viewed the nurse as central. The physician was described as absent and ACP meetings often went unnoticed. Both involvement and lack of involvement could cause the family members feelings of guilt. In conclusion, we found that what constitutes a good death is highly individual, although recurrent themes are seen. EOL conversations are important and challenging and need staff training and experience. It seems important to support healthcare staff not only to initiate ACP in NH patients, but also to involve the patient and family members in the ACP and planning EOL care. Making proactive plans regarding content of care including treatment limitations, could enable patient autonomy, optimise the chances for the patient to experience a good death and enhance for the family members during the dying trajectory and after the patient’s death.
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| 4. |
- Kastbom, Lisa, 1978-, et al.
(författare)
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Prevalence, content and significance of advance care planning in nursing home patients
- 2022
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Ingår i: Scandinavian Journal of Primary Health Care. - : Taylor & Francis Ltd. - 0281-3432 .- 1502-7724. ; 40:1, s. 29-38
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Tidskriftsartikel (refereegranskat)abstract
- Objective Studies on advance care planning in nursing homes are rare, and despite their demonstrated favourable effects on end-of-life care, advance care plans are often lacking. Therefore, we wished to explore: (i) the prevalence of advance care plans in a Swedish nursing home setting using two different definitions, (ii) the content of advance care plans, (iii) adherence to the content of care plans and (iv) possible associations between the presence of advance care planning and background characteristics, physician attendance and end-of-life care. Design Retrospective chart review. Setting Twenty-two nursing homes in Sweden. Subjects A total of 367 deceased patients (included between 1 June 2018 and 23 May 2020) who had lived in nursing homes. Main outcome measures Electronic health record data on the prevalence of advance care plans with two different definitions and variables regarding background characteristics, physician attendance and end-of-life care, were collected. Results Of the study population, 97% had a limited care plan (ACP I) documented. When using the comprehensive definition (ACP II), also including patients preferences and involvement of family members in advance care planning, the prevalence was 77%. Patients with dementia more often had care plans, and a higher physician attendance was associated with presence of advance care plans. Prescription of palliative drugs and information to family members of the patients deterioration and impending death were more common in patients with care plans compared to those where such plans were missing. There was adherence to the care plan content. Conclusion In contrast to previous research, this study showed a high prevalence of advance care plans in nursing home patients. Patients with care plans more frequently received prescriptions of palliative drugs and their family members were informed to a greater extent about the patients deterioration and impending death compared to those without care plans. These aspects are often seen as vital components of good palliative care.
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| 5. |
- Kastbom, Lisa, et al.
(författare)
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We have no crystal ball-advance care planning at nursing homes from the perspective of nurses and physicians
- 2019
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Ingår i: Scandinavian Journal of Primary Health Care. - : TAYLOR & FRANCIS LTD. - 0281-3432 .- 1502-7724. ; 37:2, s. 191-199
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Tidskriftsartikel (refereegranskat)abstract
- Objective: To investigate clinicians perspectives on the factors that shape the process of advance care planning in a nursing home context. Design: Interviews. Latent qualitative content analysis. Setting: Nine nursing homes in Sweden. Subjects: 14 physicians and 11 nurses working at nursing homes. Main outcome measures: Participants views on advance care planning (ACP) at nursing homes. Results: The analysis of the interviews resulted in four manifest categories: Exploration of preferences and views, e.g. exploring patient wishes regarding end-of-life issues and restrictions in care at an early stage, and sensitivity to patients readiness to discuss end-of-life issues; Integration of preferences and views, e.g. integration of patients preferences and staffs and family members views; Decision amp; documentation of the ACP, e.g. clear documentation in patients medical records that are up-to-date and available for staff caring for the patient, and Implementation amp; re-evaluation of the ACP, e.g. nurse following up after ACP-appointment to confirm the content of the documented ACP. The latent theme, Establishing beneficence - defending oneself against tacit accusations of maleficence, emerged as a deeper meaning of all the four (manifest) parts of the ACP-process Conclusion: This study stresses the importance of involving patients, family members, and the team in the work with advance care planning in nursing homes. In addition, clear medical record documentation and proficiency in end-of-life communication related to advance care planning for physicians as well as nurses may also be factors that significantly shape advance care planning in a nursing home context.
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| 6. |
- Malmström, Annika, 1957-
(författare)
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Studies for Better Treatment of Patients with Glioma
- 2019
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Doktorsavhandling (övrigt vetenskapligt/konstnärligt)abstract
- In Sweden annually over 500 people will be diagnosed with the malignant brain tumor glioma. They are graded from I-IV. The majority are glioblastoma (grade IV) (GBM), these being the most aggressive type. Median survival for those treated with standard of care is expected to be around 15 months. This tumor will mainly affect those 60 years or older.The studies in this thesis focus on treatment of patients with malignant gliomas grade III and IV. The aim of the studies is to improve the care of glioma patients. Papers I and II explored different therapeutic options in randomized trials, to facilitate individualized treatment recommendations. Findings from studies I and II, together with additional trials, demonstrated the importance of analyzing the tumor marker O6-methylguanine DNA methyltransferase (MGMT) methylation status for survival of GBM patients treated with Temozolomide (TMZ). The third paper investigated how the analysis of this marker is implemented internationally.The first study (paper I, Nordic trial) investigated treatment options for patients 60 years or older with GBM. The trial compared standard radiotherapy (SRT) over 6 weeks versus hypofractionated radiotherapy (HRT) over 2 weeks versus single agent TMZ administered in up to six 4 weekly cycles. In all, 342 patients were included in the trial. This study demonstrated that those randomized to TMZ had superior survival as compared to SRT. In addition, quality of life (QoL) data also suggested a better QoL for TMZ treatment than for radiotherapy. The benefit of TMZ treatment seemed to be limited to those with the tumor molecular marker MGMT methylated (inactivated).The second trial (paper II, Neoadjuvant trial) studied whether integrating TMZ treatment with SRT for patients younger than 60 years with GBM (grade IV) and astrocytoma grade III would confer a survival benefit, if administered postoperatively, before the start of SRT (neoadjuvant). TMZ was provided for 2-3 four weekly cycles followed by SRT to patients randomized to neoadjuvant treatment and was compared to postoperative SRT alone. Although this trial could not illustrate any advantage of delaying the start of SRT while administering TMZ for the study cohort in general, for those included as astrocytoma grade III the median survival was found to be superior by 5 years when randomized to neoadjuvant TMZ. This trial also confirmed the importance of MGMT promoter methylation for the efficacy of TMZ.The third study (paper III) investigated international practices for analyzing tumor MGMT promoter methylation status. MGMT analysis can be conducted by various laboratory methods, which in some cases can provide opposing results regarding the MGMT methylation status of the patient´s tumor. This can lead to incorrect treatment recommendations. To establish which methods and cut-offs that are regularly used to determine tumor MGMT status in the clinic, an international survey was provided to those working in the field. We also inquired about opinions regarding an international consensus on how MGMT should be tested. The 152 respondents reported several methodologies and different cut-off levels also for the same method. A majority of respondents warrant international guidelines.In conclusion, the results of the 2 randomized trials contribute to individualized treatment recommendations for patients affected by GBM or astrocytoma grade III. The results of the survey regarding analyses of MGMT clarify the current problematic situation. The request of the respondents regarding international guidelines might contribute to their future development, so that personalized treatment recommendations can be improved.
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| 7. |
- Nilsberth, Camilla, 1968-, et al.
(författare)
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Symptom clusters in palliative-stage cancer correlate with proinflammatory cytokine cluster
- 2023
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Ingår i: Annals of Palliative Medicine. - : AME Publishing Company. - 2224-5820 .- 2224-5839. ; 12:3, s. 458-471
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Tidskriftsartikel (refereegranskat)abstract
- Background: Patients with palliative-stage cancer often suffer from a variety of debilitating symptoms which have been shown to appear in clusters. It is suggested that cytokines cause many such symptoms, and elevated cytokine production has been shown to correlate with symptoms. However, symptom clusters have not been thoroughly analyzed in relation to cytokine clusters. The aim of the present study was to identify symptom clusters and cytokine clusters in Swedish cancer patients, and to investigate correlations between the identified symptom clusters and cytokine clusters. Methods: The EORTC Quality of Life Questionnaire Core 15 Palliative Care questionnaire was completed by 110 cancer patients, with blood samples taken at two time points four weeks apart. Meso scale discovery (MSD) assays were used to analyze 23 cytokines. Statistical analysis was performed using principal component analysis (PCA) of symptoms and cytokines, followed by correlation analysis of the obtained clusters. Results: Three symptom clusters were identified: (I) pain-sleep disorder, (II) gastro-intestinal-fatigue, (III) physical functioning. The cytokines were divided into three clusters that can be characterized as (I) pro-tumorigenic, (II) cell-mediated immune response and (III) proinflammatory. At the second time point, a fourth cytokine cluster was isolated (IV) immunostimulation. Correlations were found at both time points between the proinflammatory cytokine cluster and the physical functioning symptom cluster, and at the week four time point between the proinflammatory cytokine cluster and the gastro-intestinal-fatigue symptom cluster. Conclusions: We show a correlation between symptom clusters and the proinflammatory cytokine cluster. Proinflammatory cytokines are known to cause symptoms that resemble palliative cancer symptoms. Increased knowledge of biochemical processes and their effect on patients’ wellbeing may give clues for counteracting symptoms that affect quality of life (QOL) in palliative cancer care. © Annals of Palliative Medicine. All rights reserved.
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