Conceptual Models and Mechanisms of Action that Underpin End-of-Life Care Interventions to Improve Spiritual Well-Being

Author(s):  
Victoria Liang-Xin Liu ◽  
Shih-Chun Lin ◽  
Richard Harding
2019 ◽  
Vol 68 (1) ◽  
pp. 25-39
Author(s):  
Konstantinos Mastorakis ◽  
Massimo Continisio ◽  
Maria Francesca Siotto ◽  
Luca Navarini ◽  
Franco Carnevale ◽  
...  

Nel 2010 è stata emanata in Italia la Legge 38, che punta a migliorare formazione e tirocini nel campo delle cure palliative, sebbene al momento non esista un sistema nazionale di monitoraggio di tali pratiche su scala nazionale. A livello internazionale l’eutanasia si è andata sempre più configurando come trattamento possibile fra le cure di fine vita, mentre in Italia resta formalmente illegale. Esistono alcuni studi italiani sulle prospettive dei pazienti rispetto alle cure palliative e all’eutanasia, ma la letteratura relativa alla percezione degli operatori sanitari palliativisti è esigua. Scopo del presente studio è l’indagine di tali percezioni, sia rispetto alla qualità delle cure palliative sia al potenziale ruolo dell’eutanasia nelle cure di fine vita in Italia. La ricerca è stata condotta in tre hospice romani. È stato sviluppato e somministrato un questionario con 75 item graduati secondo la scala Likert a 5 punti, utilizzando come metodi di analisi l’analisi fattoriale e, per la parte statistica, SPSS. Il questionario è stato completato da 56 soggetti. Nella percezione dei partecipanti, i fattori rilevanti per la qualità delle cure palliative sono risultati sette: sofferenza fisica e sociale, benessere psicologico e spirituale, benessere emozionale, partecipazione alle decisioni, compassione, speranza ed empatia. Inoltre, le cure palliative ridurrebbero il desiderio di morte e di eutanasia. I fattori più importanti che emergono dal lavoro sono la sofferenza o il benessere sociali, fisici e psicologici. Gli operatori sanitari coinvolti nello studio non sostengono l’ipotesi dell’eutanasia e anzi ritengono che le cure palliative riducano il desiderio di ottenerla. ---------- In 2010, the State Law no 38 was enacted in Italy, seeking to improve palliative care education and training. There is currently no national monitoring system for palliative care practices in Italy. Euthanasia has become increasingly available internationally as an alternative amidst end-of-life care options, although in Italy this is not the case, and it is formally illegal. Although there are a few studies regarding patients’ perspectives regarding the issue of palliative care and euthanasia in Italy, there is limited literature focused on the perspectives of palliative care health care professionals. The purpose of this study is to explore the perspectives of hospice workers regarding both the quality of palliative care and the potential role of euthanasia in end-of-life care in Italy. This research was conducted with hospice clinicians in three hospices in Rome. A 75 item 5-point Likert scale questionnaire was developed and administered. Factor analysis was used, and descriptive statistics were performed using SPSS. Fifty-six respondents completed the questionnaire. From participants’ perspectives, there are seven significant factors explaining the quality of palliative care in Italy: social and physical suffering, psychological and spiritual well-being, emotional well-being, participation in decision making, compassion, hope, and empathy in care, while reducing patients’ desire for death and euthanasia. The most important of these factors regard social, physical and psychological suffering and well-being. Hospice workers in this study did not support euthanasia and felt that palliative care decreases the patient’s desire for euthanasia. * The manuscript was presented as an abstract in an International Congress on Palliative Care.


2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks

Abstract Research on end-of-life care in nursing homes comes largely from the viewpoint of staff or family members. We examined patient perspectives on end-of-life care, preferences for care, and quality of life in long-term care settings. We hypothesized that fulfillment of the Self Determination Theory (SDT) needs of autonomy, competence, and relatedness would be related to better well-being and that the degree to which end-of-life care preferences are seen as possible in the setting would be related to SDT need fulfillment and well-being. Preliminary data, collected from older individuals at the end of life (over 55, presence of significant chronic disease, in long term care setting) (n= 72), demonstrated that autonomy, competence, and relatedness measures were moderately and significantly correlated with well-being as measured by life satisfaction, higher positive affect, lower negative affect, and overall quality of life measures The degree to which residents believed that their end-of-life care preferences could be honored in the setting was also significantly correlated with autonomy, competence, relatedness, positive affect, and psychological quality of life. These results are consistent with SDT and suggest that if long term care settings can promote autonomy, connection, and competence in making end of life decisions, possibly by discovering and fulfilling preferences for end of life care, individuals who end their lives on those settings have potential for greater satisfaction and happiness. These results suggest that SDT is a useful framework for ongoing research on how to improve the end of life experiences of older adults in long term care.


2021 ◽  
pp. bmjspcare-2020-002672
Author(s):  
Sinead Donnelly ◽  
Simon Walker

ObjectiveTo understand the unique ethical and professional challenges confronting first and second year doctors in caring for people who are dying, and to learn what factors help or hinder them in managing these.Method6 first year and 7 second year doctors were interviewed one-to-one by a senior palliative medicine physician (SD), quarterly over 12 months, using a semistructured approach. Thematic analysis was conducted with the findings, following the general inductive approach.Results21 hours of recorded interviews were analysed by SD, and ethical and professional issues were identified. These were discussed with SW, and sorted into seven broad categories. The participants’ accounts of the issues convey a strong ethical sensitivity, developed through their undergraduate training. A recurring challenge for them through their first 12–24 months of work as doctors is being responsible for the decisions, knowing that what they do can have life and death consequences. The participants frequently describe senior doctors as an important source of support, and the lack of such support as leading to moral distress and demoralisation. Another important factor is having opportunity to discuss and reflect on the decisions after they are made. Where such reflection had been facilitated properly, participants displayed considerable growth in their ability to manage ethical challenges.ConclusionSenior support and opportunities for reflection need to be recognised as key factors in enabling first and second year to respond appropriately to ethical challenges in end-of-life care, and in sustaining their well-being through this critical stage of their professional life.


2015 ◽  
Vol 9 (1) ◽  
pp. e14-e14 ◽  
Author(s):  
Stephanie Sivell ◽  
Hayley Prout ◽  
Noreen Hopewell-Kelly ◽  
Jessica Baillie ◽  
Anthony Byrne ◽  
...  

ObjectivesTo present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.MethodsEight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.ResultsThe main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers’ training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.ConclusionsThe ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.


Author(s):  
Emilie Hill-Smith

Through an in-depth analysis of current and historical literature, this thesis explores the question: what is hospice and end of life care for children? I will dissect the various dimensions of children’s hospice care and how it has evolved over time. Also in my thesis, I will draw from my personal experiences in volunteering at a children’s hospice to discuss the support and care that volunteers receive. Through this literature review I hope to bring to light to a subject that is often overlooked or too difficult for people to discuss. I will propose plans to better the care for children and families who are facing the end of life. My thesis will summarize the current literature available about the type of care that children receive worldwide and how this care affects families and children’s well-being. There has been minimal research done on children in end of life due to the topic’s sensitive nature. My goals is to inform the public of an under discussed but important topic in paediatric medicine.


2012 ◽  
Vol 15 (7) ◽  
pp. 812-820 ◽  
Author(s):  
Natalie Evans ◽  
Arantza Meñaca ◽  
Jonathan Koffman ◽  
Richard Harding ◽  
Irene J. Higginson ◽  
...  

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