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- Benedetti, Franzisca Domeisen, et al.
(author)
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International palliative care experts' view on phenomena indicating the last hours and days of life
- 2013
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In: Supportive Care in Cancer. - : Springer Science and Business Media LLC. - 0941-4355 .- 1433-7339. ; 21:6, s. 1509-1517
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Journal article (peer-reviewed)abstract
- Providing the highest quality care for dying patients should be a core clinical proficiency and an integral part of comprehensive management, as fundamental as diagnosis and treatment. The aim of this study was to provide expert consensus on phenomena for identification and prediction of the last hours or days of a patient's life. This study is part of the OPCARE9 project, funded by the European Commission's Seventh Framework Programme. The phenomena associated with approaching death were generated using Delphi technique. The Delphi process was set up in three cycles to collate a set of useful and relevant phenomena that identify and predict the last hours and days of life. Each cycle included: (1) development of the questionnaire, (2) distribution of the Delphi questionnaire and (3) review and synthesis of findings. The first Delphi cycle of 252 participants (health care professionals, volunteers, public) generated 194 different phenomena, perceptions and observations. In the second cycle, these phenomena were checked for their specific ability to diagnose the last hours/days of life. Fifty-eight phenomena achieved more than 80 % expert consensus and were grouped into nine categories. In the third cycle, these 58 phenomena were ranked by a group of palliative care experts (78 professionals, including physicians, nurses, psycho-social-spiritual support; response rate 72 %, see Table 1) in terms of clinical relevance to the prediction that a person will die within the next few hours/days. Twenty-one phenomena were determined to have "high relevance" by more than 50 % of the experts. Based on these findings, the changes in the following categories (each consisting of up to three phenomena) were considered highly relevant to clinicians in identifying and predicting a patient's last hours/days of life: "breathing", "general deterioration", "consciousness/cognition", "skin", "intake of fluid, food, others", "emotional state" and "non-observations/expressed opinions/other". Experts from different professional backgrounds identified a set of categories describing a structure within which clinical phenomena can be clinically assessed, in order to more accurately predict whether someone will die within the next days or hours. However, these phenomena need further specification for clinical use.
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- Forsberg, Karl-Anton, et al.
(author)
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Meanings of participating in a lifestyle programme for persons with psychiatric disabilities.
- 2011
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In: Scandinavian Journal of Caring Sciences. - : Wiley. - 0283-9318 .- 1471-6712. ; 25:2, s. 357-364
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Journal article (peer-reviewed)abstract
- Lifestyle changes that affect physical and psychological health are described in research literature; however, the meaning of participating in a lifestyle intervention programme together with the staff has not been described. This study illuminates meanings of participating in a lifestyle programme as experienced by persons with psychiatric disabilities. The first author interviewed five women and six men with schizophrenia and depressive syndrome, aged 26-53, participating in a lifestyle programme. The transcribed interviews were analysed using a phenomenological hermeneutic approach inspired by the philosophy of Ricoeur. Meanings of participating in a lifestyle programme include my health can be improved as both the physical effects and the obstacles are considered and the daily life is partially given a changed content in new experiences and by participating in something to take pride in. The meanings of participating together with the staff mean an increased sense of closeness and equality with the staff expressed in changes in relationships and the difference between the two groups being revealed and also in becoming aware of the life situation, an insight into the loss of a healthy life but also hope for the future is expressed. The conclusions that could be drawn from this study are that a lifestyle intervention affects health and other important life areas such as the content of daily life and the relationship with the carers, which appears to affect the sense of hope and the ability to see new possibilities. Carers should find situations and activities where the residents and carers participate under equal conditions giving the residents the opportunity to leave the sick roll, experience equality and develop good relationships.
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| 4. |
- Lindqvist, Olav, et al.
(author)
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Complexity in Non-Pharmacological Caregiving Activities at the End of Life : An International Qualitative Study
- 2012
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In: PLoS Medicine. - San Francisco : Public Library of Science. - 1549-1277 .- 1549-1676. ; 9:2, s. e1001173-
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Journal article (peer-reviewed)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.
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| 5. |
- Lindqvist, Olav, et al.
(author)
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Four essential drugs needed for quality care of the dying : a Delphi-study based international expert consensus opinion
- 2013
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In: Journal of Palliative Medicine. - : Mary Ann Liebert Inc. - 1096-6218 .- 1557-7740. ; 16:1, s. 38-43
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Journal article (peer-reviewed)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.
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| 8. |
- Näppä, Ulla, et al.
(author)
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Avoiding harmful palliative chemotherapy treatment in the end of life : development of a brief patient-completed questionnaire for routine assessment of performance status
- 2012
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In: The journal of supportive oncology. - : Elsevier. - 1544-6794. ; 10:6, s. 230-237
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Journal article (peer-reviewed)abstract
- BACKGROUND: Earlier studies have shown that up to 43% of patients with incurable cancer are treated with palliative chemotherapy in the last month of their lives. Although pretreatment blood tests are acceptable, the patient's general condition may not permit further palliative chemotherapy treatment (PCT). Presently, there is no patient self-assessment tool available to monitor performance status during PCT.OBJECTIVES: To describe the development process of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire, and the testing of its psychometric properties.METHODS: The questionnaire was developed by the authors based on the Eastern Cooperative Oncology Group Performance Status Rating (ECOG PSR) scale as well as their clinical experience with PCT. Adult patients who were diagnosed with epithelial cancers (n = 118) were enrolled to test the PSPC questionnaire for reliability, sensitivity for change, and validity.RESULTS: After stepwise modifications of the PSPC questionnaire, psychometric tests revealed acceptable values for reliability (via a test-retest method), sensitivity for change (via a comparison of patients with progressive disease over time), and validity (via a comparison of the PSPC vs the Edmonton Symptom Assessment System [ESAS]).LIMITATIONS: At this stage of questionnaire development, we are unable to conclude whether the PSPC is superior to the conventional ECOG PSR in the evaluation of performance status and the prediction of chemotherapy response.CONCLUSION: Psychometric tests suggest that the PSPC questionnaire may be a useful patient-completed tool in the late stages of cancer disease to routinely monitor performance status in palliative chemotherapy treatments so as to minimize the risk of inflicting more harm than good.
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| 9. |
- Näppä, Ulla, 1960-, et al.
(author)
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Challenging situations when administering palliative chemotherapy : a nursing perspective
- 2014
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In: European Journal of Oncology Nursing. - : Elsevier. - 1462-3889 .- 1532-2122. ; 18:6, s. 591-597
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Journal article (other academic/artistic)abstract
- Palliative chemotherapy treatments (PCT) are becoming more common for patients with incurable cancer; a basic challenge is to optimize tumour response while minimizing side-effects and harm. As registered nurses most often administer PCT, they are most likely to be confronted with difficult situations during PCT administration. This study explores challenging situations experienced by nurses when administering PCT to patients with incurable cancer.Methods: Registered nurses experienced in administering PCT were asked in interviews to recall PCT situations they found challenging. Inspired by the narrative tradition, stories were elicited and analysed using a structural and thematic narrative analysis.Results: A total of twenty-eight stories were narrated by seventeen nurses. Twenty of these were dilemmas that could be sorted into three storylines containing one to three dilemmatic situations each. The six dilemmatic situations broadly related to three interwoven areas: the uncertainty of the outcome when giving potent drugs to vulnerable patients; the difficulty of resisting giving PCT to patients who want it; and insufficient communication between nurses and physician.Conclusion: Nurses who administer PCT are engaged in a complex task that can give rise to a number of dilemmatic situations. The findings may be interpreted as meaning that at least some situations might be preventable if the knowledge and insight of all team members – nurses, physicians, patients, and relatives – are jointly communicated and taken into account when deciding whether or not to give PCT. Forming palliative care teams early in the PCT trajectory, could be beneficial for staff and patients.
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| 10. |
- Näppä, Ulla, 1960-
(author)
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Dilemmas in palliative chemotherapy when approaching end-of-life
- 2014
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Doctoral thesis (other academic/artistic)abstract
- Background When cure is no longer possible, medical care should aim for a transition to palliative care regardless of disease. Patients with incurable cancer are often treated with palliative chemotherapy (PCT), starting with the intent to prolong life and increase quality of life. Eventually, in the late stages of the disease, the patient reaches a transition phase when further PCT neither prolongs life nor adds any predominantly positive effects.Aim of the thesisStudy I: To analyse the proportion of patients with incurable cancer who received palliative chemotherapy during the last month of life, and to identify their discriminative characteristics.Study II: To develop a questionnaire assessing performance status in palliative chemotherapy, and to test its psychometric properties.Study III: To explore challenging situations experienced by registered nurses when administering palliative chemotherapy to patients with incurable cancer.Study IV: To investigate whether routine use of the Performance Status in Palliative Chemotherapy (PSPC) questionnaire in PCT would affect the proportion of patients receiving PCT during the last month of life, hospital admissions, notifications of performance status, documented decisions of ceasing PCT in the medical records, and/or place of death. A secondary aim was to gather registered nurses’ experiences of PSPC in clinical use.Methods In Studies I and IV, information from the medical records of deceased patients with epithelial cancers was used in descriptive analyses of the proportions of patients receiving PCT in counties in northernmost Sweden. A quantitative design was chosen, using non-parametric statistical methods. In Study II, a brief patient-completed questionnaire assessing performance status was developed and psychometrically tested. In Study III, data from research interviews with registered nurses were analysed qualitatively with a narrative thematic approach.Results Studies I and IV showed that about 25% of patients receiving PCT were treated during the last month of life. This group of patients had more hospital admissions, were less likely to die at home, and had fewer instances of documentation of the decision to cease PCT. The questionnaire developed in Study II was shown to have acceptable psychometric qualities such as reliability, validity, and sensitivity to detect deterioration in performance status. Study IV showed that the questionnaire gave nurses valuable information about patients’ performance status. The results also showed that 97% of nurses and 48% of physicians documented their patients’ performance status in the medical records. Study III demonstrated that when nurses administered PCT they considered futile, they could experience dilemmas created by the unforeseeable outcomes of PCT or stemming from insufficient communication between nurses, patients, next-of-kin, and physicians.Conclusions Administration of PCT can create dilemmatic situations for both the patient and medical staff when approaching end-of-life. This is underlined by the finding that some 25% of treated patients received their last round of PCT as late as during the last month of life. The decisions to cease PCT were less likely to be documented for patients who had received PCT within a month before death. Nurses described situations where they felt they were in the middle of the decision-making process regarding whether or not to continue PCT. They found the treatments were given on the authority of someone else; the physician’s recommendation or the patient’s and/or relatives’ request.The unpredictability of PCT was a continuous theme in the work described in this thesis, emphasizing the necessity of individually assessing every patient before PCT in order to minimize the risk of futile treatments. The attempt to develop a reliable and valid questionnaire for systematic assessment of performance status has increased future possibilities to monitor this parameter in PCT when approaching end-of-life. The questionnaire developed as part of this thesis has provided nurses with increased knowledge of patients’ performance status. If routinely used, it may help decrease the proportion of patients receiving PCT during the last month of life, though this remains to be rigorously proven. Further research efforts are needed to progress in the task of optimizing rather than maximizing the use of PCT when approaching end-of-life.
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