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End of Life Stroke Care: perspectives of health-care professionals and family members
Linköping University, Department of Social and Welfare Studies, Division of Nursing Science. Linköping University, Faculty of Medicine and Health Sciences.
2019 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Introduction

Even though medical improvements have reduced the mortality rates for patients afflicted by stroke, mortality during the first few days at hospital is significant. Today, there is an increasing recognition that the principles of palliative and supportive care are important components of meeting the needs of patients severely afflicted by stroke even in acute settings. However, there is limited knowledge about which factors have an impact on the end-of-life care (EoLC) for these patients or about how these last days of life are experienced from the family members’ perspective.

Aim

The overall aim of this thesis was to describe the EoLC of patients severely afflicted by stroke and to identify factors impacting upon EoLC for the patients and their family members in Sweden out of various contexts and methods.

Design and Methods

This thesis is based upon four papers employing qualitative, quantitative and mixed-method designs.

Paper I is a qualitative study based on focus-group interviews with 41 health-care professionals (HCPs) in different professions related to stroke care at three stroke units. The aim was to study ethical dilemmas, different approaches and what consequences they had among health HCPs; the data was analysed using content analysis. The result inspired the design and conduct of the following studies.

Paper II is a quantitative comparative study based on a retrospectively registered questionnaire from the Swedish Registry of Palliative Care (SRPC). Patients dying of stroke (n =1626) were compared with patients dying from cancer (n=1626), according to symptoms, symptom management and communication with the patient and family members during the last week of life. Data was statistically calculated using OR.

Paper III is a mixed-method study employing a sequential explanatory design. In the first, quantitative, part, 995 stroke patients who died in hospital were compared with 631 stroke patients who died at nursing homes, according to symptoms, symptom management and communication with the patient and family members during the last week of life. The quantitative data was statistically calculated using OR and the qualitative data was analysed using content analysis. Nine significant differences drawn from the quantitative results regarding care were chosen to be discussed by twelve nurses working in stroke units.

Paper IV is a qualitative interview study with the aim to study the family member descriptions of the trajectory from admission to the hospital until their loved one died. A semi-structured interview guide was used, and data was analysed using thematic analyses.

Results

Factors that had an impact on EoLC were consequences related to the difficulties around decision-making about withholding or withdrawing life-sustaining treatment. Non-decisions or not holding to the decision generated communication barriers causing obstacles in inter-professional collaboration and ethical dilemmas within the team (Study I). The absence of a mutual approach to care resulted in underprovided palliation, undignified medical treatment and ambiguity in care, generating feelings of distrust among the family members. The results described in Study I of underprovided palliation were further investigated in Study II. The differences in knowledge about whether symptoms were present or not in patients afflicted by stroke compared to patients with cancer were significant. For example, the HCPs in the stroke group did not know if pain was present nine times more frequently than in the cancer group. These differences in knowledge about whether symptoms were present of not were also identified in Study III. Here, HCPs at the nursing home more often had knowledge about whether a symptom was present in patients dying of stroke or not, compared to HCPs at hospitals. This study also identifies differences in the presence of the symptoms being compared and whether the patient’s suffering was fully relieved. The nurses working at stroke units explained that these differences were a consequence of the stroke unit’s aim (saving lives), no previous relationship to the patient and ambiguity in the evaluation of symptoms. The patient’s altered levels of consciousness increased the difficulties in evaluation. In addition, the hospital setting’s aim increased the risk of prolonged treatment, for example nutrition supplied during the last day of life, and underprovided palliation of for example, pain compared to nursing homes. In Study IV, family members were seeking trust through mutual collaboration and creating relationships with the HCPs. If the family did not feel that their search for trust was taken care of, it generated feelings of distrust allied with anxiety and memories of failing to do the best for their loved one at in the end of life. During the trajectory at the hospital, family members were “seeking trust in chaos”, “seeking clarity when deciding about living or dying” and finally they were “seeking trust in care as a final act of love”.

Conclusions:

The results of this thesis suggest that the absence of a coherent approach contributes to developing ethical dilemmas within the HCPs. The ambiguity in care had an impact on the quality on EoLC, with an increased risk of unnecessary suffering and questionable symptom management. The prevailing culture at acute-care hospitals affected the HCPs’ attitudes towards EoLC, with attention being predominantly on life-sustaining treatments. There is an increasing recognition of the need for improvement in the PC approach at acute-care hospitals in order to create equal quality of care during end of life, irrespective of the place of death for patients dying of stroke. Furthermore, family members need to feel trust, which is achieved through relationships and collaboration with HCPs. In the striving to accomplish a wholly compensatory care of quality during the trajectory, this thesis can be a source of knowledge and guidance for nurses and for teams at the stroke unit.

Place, publisher, year, edition, pages
Linköping: Linköping University Electronic Press, 2019. , p. 106
Series
Linköping University Medical Dissertations, ISSN 0345-0082 ; 1698
National Category
Nursing
Identifiers
URN: urn:nbn:se:liu:diva-160476ISBN: 9789176850084 (print)OAI: oai:DiVA.org:liu-160476DiVA, id: diva2:1353375
Public defence
2019-10-11, K3, Kåkenhus, Norrköping, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2019-09-23 Created: 2019-09-23 Last updated: 2019-09-23Bibliographically approved
List of papers
1. Ethical Dilemmas Around the Dying Patient With Stroke: A Qualitative Interview Study With Team Members on Stroke Units in Sweden
Open this publication in new window or tab >>Ethical Dilemmas Around the Dying Patient With Stroke: A Qualitative Interview Study With Team Members on Stroke Units in Sweden
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2014 (English)In: Journal of Neuroscience Nursing, ISSN 0888-0395, E-ISSN 1945-2810, Vol. 46, no 3, p. 162-170Article in journal (Refereed) Published
Abstract [en]

In Sweden, individuals affected by severe stroke are treated in specialized stroke units. In these units, patients are attended by a multiprofessional team with a focus on care in the acute phase of stroke, rehabilitation phase, and palliative phase. Caring for patients with such a large variety in condition and symptoms might be an extra challenge for the team. Today, there is a lack of knowledge in team experiences of the dilemmas that appear and the consequences that emerge. Therefore, the purpose of this article was to study ethical dilemmas, different approaches, and what consequences they had among healthcare professionals working with the dying patients with stroke in acute stroke units. Forty-one healthcare professionals working in a stroke team were interviewed either in focus groups or individually. The data were transcribed verbatim and analyzed using content analysis. The ethical dilemmas that appeared were depending on nondecisions about palliative care or discontinuation of treatments. The lack of decision made the team members act based on their own individual skills, because of the absence of common communication tools. When a decision was made, the healthcare professionals had problems holding to the decision. The devised and applied plans could be revalued, which was described as a setback to nondecisions again. The underlying problem and theme was communication barriers, a consequence related to the absence of common skills and consensus among the value system. This study highlights the importance of palliative care knowledge and skills, even for patients experiencing severe stroke. To make a decision and to hold on to that is a presupposition in creating a credible care plan. However, implementing a common set of values based on palliative care with symptom control and quality of life might minimize the risk of the communication barrier that may arise and increases the ability to create a healthcare that is meaningful and dignified.

Place, publisher, year, edition, pages
Lippincott, Williams andamp; Wilkins, 2014
Keywords
decision making; focus groups; multiprofessional; palliative care; stroke units
National Category
Clinical Medicine Health Sciences
Identifiers
urn:nbn:se:liu:diva-108150 (URN)10.1097/JNN.0000000000000049 (DOI)000336378900007 ()
Available from: 2014-06-26 Created: 2014-06-26 Last updated: 2019-09-23
2. End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer
Open this publication in new window or tab >>End of Life Care for Patients Dying of Stroke: A Comparative Registry Study of Stroke and Cancer
2016 (English)In: PLoS ONE, ISSN 1932-6203, E-ISSN 1932-6203, Vol. 11, no 2, p. e0147694-, article id 26845149Article in journal (Refereed) Published
Abstract [en]

Background

Although stroke is a significant public health challenge and the need for palliative care has been emphasized for these patients, there is limited data on end-of-life care for patients dying from stroke.

Objective

To study the end-of-life care during the last week of life for patients who had died of stroke in terms of registered symptom, symptom management, and communication, in comparison with patients who had died of cancer.

Design

This study is a retrospective, comparative registry study.

Methods

A retrospective comparative registry study was performed using data from a Swedish national quality register for end-of-life care based on WHO`s definition of Palliative care. Data from 1626 patients who had died of stroke were compared with data from 1626 patients who had died of cancer. Binary logistic analyses were used to calculate odds ratios, with 95% CI.

Results

Compared to patients who was dying of cancer, the patients who was dying of stroke had a significantly higher prevalence of having death rattles registered, but a significantly lower prevalence of, nausea, confusion, dyspnea, anxiety, and pain. In addition, the stroke group had significantly lower odds ratios for health care staff not to know whether all these six symptoms were present or not. Patients who was dying of stroke had significantly lower odds ratio of having informative communication from a physician about the transition to end-of-life care and of their family members being offered bereavement follow-up.

Conclusions

The results indicate on differences in end-of-life care between patients dying of stroke and those dying from cancer. To improve the end-of-life care in clinical practice and ensure it has consistent quality, irrespective of diagnosis, education and implementation of palliative care principles are necessary.

Place, publisher, year, edition, pages
PUBLIC LIBRARY SCIENCE, 2016
Keywords
palliative care;stroke, end-of-life-care;
National Category
Nursing
Identifiers
urn:nbn:se:liu:diva-125282 (URN)10.1371/journal.pone.0147694 (DOI)000369552800013 ()26845149 (PubMedID)
Note

Funding agencies: Stroke Riksforbund [2012-00185]; Stahls stiftelse [4813101041]; Forss [479071]

Available from: 2016-02-19 Created: 2016-02-19 Last updated: 2019-09-23

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