Feeling like a burden to others and the wish to hasten death in patients with advanced illness: A systematic review

Background: Bereavement support is a key component of palliative care, with different types of support recommended according to need. Previous reviews have typically focused on specialised interventions and have not considered more generic forms of support, drawing on different research methodologies. Aim: To review the quantitative and qualitative evidence on the effectiveness and impact of interventions and services providing support for adults bereaved through advanced illness. Design: A mixed-methods systematic review was conducted, with narrative synthesis of quantitative results and thematic synthesis of qualitative results. The review protocol is published in PROSPERO ( www.crd.york.ac.uk/prospero , CRD42016043530). Data sources: The databases MEDLINE, Embase, PsycINFO, CINAHL and Social Policy and Practice were searched from 1990 to March 2019. Studies were included which reported evaluation results of bereavement interventions, following screening by two independent researchers. Study quality was assessed using GATE checklists. Results: A total of 31 studies were included, reporting on bereavement support groups, psychological and counselling interventions and a mix of other forms of support. Improvements in study outcomes were commonly reported, but the quality of the quantitative evidence was generally poor or mixed. Three main impacts were identified in the qualitative evidence, which also varied in quality: ‘loss and grief resolution’, ‘sense of mastery and moving ahead’ and ‘social support’. Conclusion: Conclusions on effectiveness are limited by small sample sizes and heterogeneity in study populations, models of care and outcomes. The qualitative evidence suggests several cross-cutting benefits and helps explain the impact mechanisms and contextual factors that are integral to the support.

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Assessment of the wish to hasten death in patients with advanced disease: A systematic review of measurement instruments

Palliative Medicine ◽

10.1177/0269216316669867 ◽

2016 ◽

Vol 31 (6) ◽

pp. 510-525 ◽

Cited By ~ 12

Author(s):

Mercedes Bellido-Pérez ◽

Cristina Monforte-Royo ◽

Joaquín Tomás-Sábado ◽

Josep Porta-Sales ◽

Albert Balaguer

Keyword(s):

Systematic Review ◽

Advanced Disease ◽

Measurement Instruments ◽

Wish To Hasten Death

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Understanding patients’ experiences of the wish to hasten death: an updated and expanded systematic review and meta-ethnography

BMJ Open ◽

10.1136/bmjopen-2017-016659 ◽

2017 ◽

Vol 7 (9) ◽

pp. e016659 ◽

Cited By ~ 32

Author(s):

Andrea Rodríguez-Prat ◽

Albert Balaguer ◽

Andrew Booth ◽

Cristina Monforte-Royo

Keyword(s):

Systematic Review ◽

Meaning In Life ◽

Assisted Suicide ◽

Advanced Disease ◽

Sense Of Self ◽

Free Text ◽

Qualitative Synthesis ◽

Care Plans ◽

Wish To Hasten Death ◽

Life Threatening

ObjectivesPatients with advanced disease sometimes express a wish to hasten death (WTHD). In 2012, we published a systematic review and meta-ethnography of qualitative studies examining the experience and meaning of this phenomenon. Since then, new studies eligible for inclusion have been reported, including in Europe, a region not previously featured, and specifically in countries with different legal frameworks for euthanasia and assisted suicide. The aim of the present study was to update our previous review by including new research and to conduct a new analysis of available data on this topic.SettingEligible studies originated from Australia, Canada, China, Germany, The Netherlands, Switzerland, Thailand and USA.ParticipantsStudies of patients with life-threatening conditions that had expressed the WTHD.DesignThe search strategy combined subject terms with free-text searching of PubMed MEDLINE, Web of Science, CINAHL and PsycInfo. The qualitative synthesis followed the methodology described by Noblit and Hare, using the ‘adding to and revising the original’ model for updating a meta-ethnography, proposed by Franceet al. Quality assessment was done using the Critical Appraisal Skills Programme checklist.Results14 studies involving 255 participants with life-threatening illnesses were identified. Five themes emerged from the analysis: suffering (overarching theme), reasons for and meanings and functions of the WTHD and the experience of a timeline towards dying and death. In the context of advanced disease, the WTHD emerges as a reaction to physical, psychological, social and existential suffering, all of which impacts on the patient’s sense of self, of dignity and meaning in life.ConclusionsThe WTHD can hold different meanings for each individual—serving functions other than to communicate a genuine wish to die. Understanding the reasons for, and meanings and functions of, the WTHD is crucial for drawing up and implementing care plans to meet the needs of individual patients.

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The effectiveness of a non-physician provider-led palliative care intervention to improve outcomes in patients with cancer.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e24110 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e24110-e24110

Author(s):

Audrey Ready ◽

Alexander Knee ◽

Vida Rastegar ◽

Mihaela Stefan

Keyword(s):

Quality Of Life ◽

Systematic Review ◽

Palliative Care ◽

Symptom Management ◽

Care Delivery ◽

Outcome Data ◽

Risk Of Bias ◽

Advanced Illness ◽

Management Interventions

e24110 Background: Palliative care (PC) improves symptom burden, patient and family distress and quality of life of patients with advanced illnesses. Previous evidence has shown that non-physician providers (NPP) can be effective in delivering care with minimal physician support. NPP-led PC interventions could potentially address gaps in the workforce and provide access to PC services. The overall objective of this systematic review is to evaluate the effectiveness of NPP-led PC interventions in the management of adults with cancer. Methods: We searched ten electronic databases up to October 2018 for randomized or cluster control trials that evaluated NPP-led interventions in both adults receiving end of life care for advanced malignancies and/or their caregivers. NPPs included nurses, advanced practitioners, social workers or case-worker. Interventions included symptom management, hospice care, advance care planning (ACP) or decision support. We recorded the following outcomes: quality of life, patient symptoms (anxiety, depression, pain or distress), satisfaction with care and ACP. Study quality was assessed using the Cochrane risk of bias tool version 2.0. Results: Overall 5,241 publications were screened, resulting in 207 publications that underwent full text review. 13 studies (n = 2,007 participants) included only patients with diagnoses of cancer and an additional 2 studies (n = 396 participants) focused on mixed diagnoses of advanced illness, including cancer. Only 2 studies focused on both caregivers and patients. A nurse was the lead provider in 13 studies, and an advance practitioner in 2 studies. The NPP-led interventions were mostly psychosocial with four also providing symptom management. Interventions mostly consisted of education, care coordination information and support. A total of 3 studies focused solely on ACP, while 2 additional studies addressed this as part of the planned intervention. Nine studies reported quality of life outcomes and seven studies reported on anxiety and depression. There was considerable heterogeneity among the studies with respect to the nature of the intervention and the diagnoses of the study participants. All but one of the studies examined had high risk of bias, mostly due to issues related to missing outcome data or measurement of the outcome. Conclusions: In the setting of changing models of population health care delivery, the results of this systematic review could provide evidence for implementation of non-physician-led palliative care services outside of clinical trials.

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How and why are subcutaneous fluids administered in an advanced illness population: a systematic review

Journal of Clinical Nursing ◽

10.1111/jocn.13683 ◽

2017 ◽

Vol 26 (9-10) ◽

pp. 1204-1216 ◽

Cited By ~ 11

Author(s):

Liz Forbat ◽

Natalie Kunicki ◽

Michael Chapman ◽

Clare Lovell

Keyword(s):

Systematic Review ◽

Advanced Illness

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What Lies behind the Wish to Hasten Death? A Systematic Review and Meta-Ethnography from the Perspective of Patients

PLoS ONE ◽

10.1371/journal.pone.0037117 ◽

2012 ◽

Vol 7 (5) ◽

pp. e37117 ◽

Cited By ~ 80

Author(s):

Cristina Monforte-Royo ◽

Christian Villavicencio-Chávez ◽

Joaquin Tomás-Sábado ◽

Vinita Mahtani-Chugani ◽

Albert Balaguer

Keyword(s):

Systematic Review ◽

Wish To Hasten Death

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Control and Context Are Central for People With Advanced Illness Experiencing Breathlessness: A Systematic Review and Thematic Synthesis

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2018.09.021 ◽

2019 ◽

Vol 57 (1) ◽

pp. 140-155.e2 ◽

Cited By ~ 8

Author(s):

Natasha Lovell ◽

Simon N. Etkind ◽

Sabrina Bajwah ◽

Matthew Maddocks ◽

Irene J. Higginson

Keyword(s):

Systematic Review ◽

Advanced Illness ◽

Thematic Synthesis

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Attitudes and preferences towards palliative and end of life care in patients with advanced illness and their family caregivers in Latin America: A mixed studies systematic review

Palliative Medicine ◽

10.1177/02692163211029514 ◽

2021 ◽

pp. 026921632110295

Author(s):

Mariana Dittborn ◽

Pamela Turrillas ◽

Matthew Maddocks ◽

Javiera Leniz

Keyword(s):

Systematic Review ◽

Palliative Care ◽

Latin America ◽

End Of Life ◽

End Of Life Care ◽

Universal Access ◽

Empirical Studies ◽

Religious Community ◽

Life Care ◽

Advanced Illness

Background: Achieving universal access to palliative care is considered a global and equity priority. Understanding patients and caregivers’ attitudes and preferences towards palliative and end-of-life care in Latin America is essential to develop person-centred services in the region. Aim: To synthesize and appraise the evidence about patients with advanced illness and their caregivers’ attitudes and preferences towards palliative and end-of-life care in Latin America. Design: Mixed studies systematic review with sequential exploratory synthesis (thematic and narrative synthesis). Quality was assessed using the Mixed-Methods Appraisal Tool. Data sources: MEDLINE, Embase, PsychINFO, Lilacs, Web of Science, Scielo and Scopus to March 2021. Empirical studies examining patient or caregiver attitudes and/or preferences towards palliative and end-of-life care were included. Results: Of 3575 records screened, 45 articles were included, comprising 7 countries and a total of 1220 patients and 965 caregivers (26.8% non-cancer-related participants). Data were organized around seven themes: Symptom management and nutrition; End-of-life medical decisions; Communication patterns; Place of end-of-life care and death; God and religious community as source of hope and support; Caregiver’s role; and Mixed understandings of palliative care. Main findings include; conflicted views around palliative care and pain relief; patients’ preference to be informed about their condition contrasting with caregivers’ reluctance to discuss this with patients; common preference for shared decision-making; and overburdened caregivers lacking professional home-care support. Methodological flaws were found in general. Conclusion: Core themes provide context-specific evidence to inform the design of culturally sensitive palliative and end-of-life care services, models and public policies in Latin America.

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