Happiness at the end of life: A qualitative study

2021 ◽  
pp. 1-7
Author(s):  
Tan Seng Beng ◽  
Wong Ka Ghee ◽  
Ng Yun Hui ◽  
Ooi Chieh Yin ◽  
Khoo Wei Shen Kelvin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
End Of Life ◽  
Terminal Illness ◽  
Terminally Ill ◽  
Social Connections ◽  
Targeted Interventions ◽  
Pain And Suffering ◽  
The University ◽  
Eudaimonic Happiness

Abstract Objective Dying is mostly seen as a dreadful event, never a happy experience. Yet, as palliative care physicians, we have seen so many patients who remained happy despite facing death. Hence, we conducted this qualitative study to explore happiness in palliative care patients at the University of Malaya Medical Centre. Method Twenty terminally ill patients were interviewed with semi-structured questions. The results were thematically analyzed. Results Eight themes were generated: the meaning of happiness, connections, mindset, pleasure, health, faith, wealth, and work. Our results showed that happiness is possible at the end of life. Happiness can coexist with pain and suffering. Social connections were the most important element of happiness at the end of life. Wealth and work were given the least emphasis. From the descriptions of our patients, we recognized a tendency for the degree of importance to shift from the hedonic happiness to eudaimonic happiness as patients experienced a terminal illness. Significance of results To increase the happiness of palliative care patients, it is crucial to assess the meaning of happiness for each patient and the degree of importance for each happiness domain to allow targeted interventions.

scholarly journals A Survey of Attitudes and Beliefs about Care, Compassion and Communities Networks in Palliative Care. A Preliminary Study for the Development of a Compassionate University

Healthcare ◽  
2021 ◽  
Vol 9 (8) ◽  
pp. 946
Author(s):  
Silvia Librada Flores ◽  
Sonia Herminia Roa Trujillo ◽  
Nurlian Torrejano Gonzálex ◽  
María del Pilar García Buitrago ◽  
Miguel Ángel Lucas Díaz
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Terminal Illness ◽  
Statistical Significance ◽  
Training Needs ◽  
Living Environment ◽  
Self Compassion ◽  
Level Of Knowledge ◽  
The University ◽  
And Training

The aim of this study was to know the level of knowledge, sensitivities and training needs regarding care of people at the end of life in medicine, nursing and psychology students/academic and administration university personnel; and to identify skills to perceive and expressed values related to compassion it in their living environment. Method: a descriptive observational study was conducted among undergraduate medical, nursing and psychologist students, academic and administration personnel of the University of Bogotá in Colombia the survey was based on a web-based questionnaire (November 2019–April 2020). Levels of knowledge and sensitivities about care of people at the end of life, educational needs and compassion were assessed. Descriptive and comparative measures and statistical significance tests used, Student’s t and ANOVA (α = 0.05). Results: 465 people answered the survey; students (82.4%), academic (13.1%) and administration personnel (4.5%). 81.6% knew about palliative care concepts. 64.7% had not cared for other people with advanced or terminal illness. 44.7% talked about death without problems. The most evaluated training competences were humanity, dignity and compassion. Mean levels for compassion by Gilbert’s scale were 70.55 for self-compassion, 72.61 for compassion for others and 60.47 for compassion from others. Significant differences were found by age and gender in self-compassion values. Conclusions: the level of knowledge, sensitivities and training needs regarding care of people at the end of life in the University and the values related to compassion enables the development of Compassionate Universities.

scholarly journals Parents' Voices Supporting Music Therapy within Pediatric Palliative Care

2005 ◽  
Vol 5 (3) ◽  
Author(s):  
Kathryn Lindenfelser
Keyword(s):  
Palliative Care ◽  
Music Therapy ◽  
End Of Life ◽  
Hospice Care ◽  
Terminally Ill ◽  
Children And Families ◽  
Therapy Services ◽  
Hospice And Palliative Care ◽  
The University ◽  
Parents Experiences

It has been my experience that parents are willing and open to express their voices to promote and advocate for music therapy services for their terminally ill children. By listening to parents' voices when providing care for terminally ill children, much can be done to ease the suffering of children and families at the end of life (Widger & Wilkins, 2004). My music therapy masters research at the University of Melbourne with Dr. Katrina McFerran will investigate bereaved parents' experiences of music therapy with their terminally ill child. This inquiry unfolded through my music therapy work with several children and families within hospice and palliative care. Parents have reflected that music therapy was a vital component in their child's care at the end of life. As one mom commented, "I don't care what anyone says, it has made a world of a difference." In order to further explore parents' experiences of music therapy, in-depth interviews will be conducted and transcripts will be analyzed using phenomenological strategies. It has been reported that parents find the interview process helpful in working through grief. They have also reported feeling an overall eagerness to share their child's story in order to provide input that might assist other families in the future (Widger & Wilkins, 2004). This article will describe pediatric palliative and hospice care, discuss parents as advocates for their terminally ill children, portray the use of music therapy within pediatrics, and share an example of music therapy with Jack.

scholarly journals End of life breast cancer care in women with severe mental illnesses

2021 ◽  
Vol 11 (1) ◽  
Author(s):  
Guillaume Fond ◽  
Vanessa Pauly ◽  
Audrey Duba ◽  
Sebastien Salas ◽  
Marie Viprey ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Palliative Care ◽  
Health Disparities ◽  
Major Depression ◽  
End Of Life ◽  
High Intensity ◽  
Bipolar Disorders ◽  
Mental Illnesses ◽  
Targeted Interventions ◽  
Eol Care

AbstractLittle is known on the end-of-life (EOL) care of terminal breast cancer in women with severe psychiatric disorder (SPD). The objective was to determine if women with SPD and terminal breast cancer received the same palliative and high-intensity care during their end-of-life than women without SPD. Study design, setting, participants. This population-based cohort study included all women aged 15 and older who died from breast cancer in hospitals in France (2014–2018). Key measurements/outcomes. Indicators of palliative care and high-intensity EOL care. Multivariable models were performed, adjusted for age at death, year of death, social deprivation, duration between cancer diagnosis and death, metastases, comorbidity, smoking addiction and hospital category. The analysis included 1742 women with SPD (287 with bipolar disorder, 1075 with major depression and 380 with schizophrenia) and 36,870 women without SPD. In multivariate analyses, women with SPD had more palliative care (adjusted odd ratio aOR 1.320, 95%CI [1.153–1.511], p < 0.001), longer palliative care follow-up before death (adjusted beta = 1.456, 95%CI (1.357–1.555), p < 0.001), less chemotherapy, surgery, imaging/endoscopy, and admission in emergency department and intensive care unit. Among women with SPD, women with bipolar disorders and schizophrenia died 5 years younger than those with recurrent major depression. The survival time was also shortened in women with schizophrenia. Despite more palliative care and less high-intensity care in women with SPD, our findings also suggest the existence of health disparities in women with bipolar disorders and schizophrenia compared to women with recurrent major depression and without SPD. Targeted interventions may be needed for women with bipolar disorders and schizophrenia to prevent these health disparities.

Association between perceptions of prognosis and end-of-life outcomes for patients with advanced lung and gastrointestinal cancer.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 6503-6503
Author(s):  
Carlisle E. W. Topping ◽  
Madeleine Elyze ◽  
Rachel Plotke ◽  
Lauren Heuer ◽  
Charu Vyas ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Gastrointestinal Cancer ◽  
Controlled Trial ◽  
Terminally Ill ◽  
Cancer Type ◽  
Linear Regression Models ◽  
Care Intervention ◽  
Eol Care ◽  
At Home

6503 Background: Many patients with advanced cancer maintain misperceptions of their prognosis and are thus unprepared to make difficult decisions regarding their end-of-life (EOL) care. However, studies examining the associations between patients’ perceptions of their prognosis and their EOL outcomes are limited. Methods: We conducted a secondary analysis using longitudinal data from a randomized controlled trial of a palliative care intervention for patients with newly diagnosed incurable lung and non-colorectal gastrointestinal cancer. We administered the Prognosis and Treatment Perceptions Questionnaire to assess patients’ perceptions of their prognosis at baseline, week-12, and week-24, using the final assessment closest to death. We used multivariate logistic and linear regression models, adjusting for age, gender, marital status, cancer type, and randomization to the palliative care intervention, to examine the associations among patients’ perceptions of their prognosis with the following EOL care outcomes abstracted from the electronic health record: 1) hospice utilization and length-of-stay (LOS); 2) hospitalizations in the last 30 days of life; 3) receipt of chemotherapy in the last 30 days of life; and 4) location of death. Results: We enrolled 350 patients in the parent trial, of which 80.5% (281/350) died during the study period and were included in this analysis. Overall, 59.4% (164/276) of patients reported that they were terminally ill, and 66.1% (154/233) reported that their cancer was likely curable at the assessment closest to death. In multivariate analyses, patients who reported that their cancer was likely curable were less likely to utilize hospice (OR = 0.25, 95%CI 0.10-0.61, P = 0.002) or die at home (OR = 0.56, 95%CI 0.32-0.98, P = 0.043), and more likely to be hospitalized in the last 30 days of life (OR = 2.28, 95%CI 1.20-4.32, P = 0.011). In contrast, patients’ report that they were terminally ill was only associated with lower likelihood of hospitalizations in the last 30 days of life (OR = 0.52, 95%CI 0.29-0.92, P = 0.025). Patients’ perceptions of their prognosis were not associated with hospice LOS or chemotherapy administration in the last 30 days of life. Conclusions: Patients’ perceptions of their prognosis are associated with important EOL outcomes including hospice utilization, hospitalizations at the EOL, and death at home. Interventions are needed to enhance patients’ perceptions of their prognosis in order to optimize their EOL care.

scholarly journals Can there be a Disability Studies Theory of "End-of-Life Autonomy?"

2011 ◽  
Vol 31 (4) ◽  
Author(s):  
Harold Braswell
Keyword(s):  
End Of Life ◽  
Disability Studies ◽  
Terminal Illness ◽  
Medical Condition ◽  
Terminally Ill ◽  
Persons With Disabilities ◽  
Self Development ◽  
Relational Process

<p>Keywords</p><p>ADA, autonomy, bioethics, end-of-life, euthanasia, terminal illness</p><p>Abstract</p><p>In this article, I examine the possibility of a disability studies theory of "end-of-life autonomy." I define "end-of-life autonomy" as an individual's legally protected and medically enacted decision to die in response to a serious incurable medical condition. Disability studies scholars criticize such autonomy when it is exercised by persons with disabilities, but are divided on its application to the terminally ill. But the problem with end-of-life autonomy is not determining the correct population to which it applies; it is the ableism underlying the concept of "autonomy" itself. I redefine "autonomy" as a relational process of self-development that is oriented toward a greater recognition of dependence. This rethinking can make the ADA more responsive to terminally ill individuals, and helps lay the foundation for a disability studies theory of end-of-life autonomy.</p>

scholarly journals Preferences for place of care and place of death: What, how, when and who to ask?

2019 ◽  
Author(s):  
Katrin Gerber ◽  
BARBARA HAYES ◽  
CHRISTINA BRYANT
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Final Stage ◽  
Terminally Ill ◽  
Healthcare Systems ◽  
Place Of Death ◽  
Preference Assessments ◽  
Terminally Ill Patients ◽  
Key Questions

As healthcare systems worldwide are confronted with increasing numbers of ageing and terminally ill patients, the topic of where people want to spend their last days has received considerable attention. However, the strategies that researchers and clinicians use to capture these end-of-life views vary greatly in four key questions. These include: what, how, when and who to ask about location preferences. We will argue that how researchers and clinicians choose to answer these questions directly influences their findings. Based on these considerations, we will highlight ways to improve future palliative care and empirical end-of-life studies by addressing the precision, methods, timing and sources of preference assessments. Only when we are able to accurately identify where people want to spend their last days, can we begin to meet the needs of patients as they approach the final stage of their lives.

scholarly journals Recalibrating the ‘world map’ of palliative care development

2019 ◽  
Vol 4 ◽  
pp. 77
Author(s):  
Nicole Baur ◽  
Carlos Centeno ◽  
Eduardo Garralda ◽  
Stephen Connor ◽  
David Clark
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Grey Literature ◽  
Primary Data ◽  
Online Questionnaire ◽  
Documentary Sources ◽  
European Languages ◽  
Data Limitations ◽  
The University ◽  
Care Development

Background: Despite growing interest from policy makers, researchers and activists in the global development of palliative care, there is still little science to underpin it. This study presents the methods deployed in the creation of a ‘world map’ of palliative care development. Building on two previous iterations, with improved rigour and taking into account reviewers’ feedback, the aim of this recalibrated version of the study is to determine the level of palliative care development in 198 United Nations recognised countries in 2017, whilst ensuring comparability with previous versions. We present methods of data collection and analysis. Methods and analysis: Primary data on the level of palliative care development in 2017 was collected from in-country experts through an online questionnaire and, where required, supplemented by published documentary sources and grey literature. Data relating to the total population of each country as well as per capita opioid consumption were derived from independent sources. Data analysis was conducted according to a new scoring system and algorithm developed by the research team.   Ethics and dissemination: The study was approved by the University of Glasgow College of Social Sciences Research Ethics Committee. Findings of the study will be disseminated in peer-reviewed journals, as a contribution to the second edition of the Global Atlas of Palliative Care at the End-of-Life, and via social media, including the Glasgow End of Life Studies Group blog and the project website. Limitations of the study: There are potential biases associated with self-reporting by key in-country experts. In some countries, the identified key expert failed to complete the questionnaire in whole or part and data limitations were potentially compounded by language restrictions, as questionnaires were available only in three European languages. The study relied in part on data from independent sources, the accuracy of these data could not be verified.

Persistent socioeconomic inequalities in location of death and receipt of palliative care: A population-based cohort study

2020 ◽  
Vol 34 (10) ◽  
pp. 1393-1401
Author(s):  
Luke Mondor ◽  
Walter P Wodchis ◽  
Peter Tanuseputro
Keyword(s):  
Palliative Care ◽  
Cohort Study ◽  
End Of Life ◽  
Terminal Illness ◽  
Home Visits ◽  
Population Based ◽  
Relative Index ◽  
Deprived Neighbourhoods ◽  
Location Of Death ◽  
Index Of Inequality

Background: Providing equitable care to patients in need across the life course is a priority for many healthcare systems. Aim: To estimate socioeconomic inequality trends in the proportions of decedents that died in the community and that received palliative care within 30 days of death (including home visits and specialist/generalist physician encounters). Design: Cohort study based on health administrative data. Socioeconomic position was measured by area-level material deprivation. Inequality gaps were quantified annually and longitudinally using the slope index of inequality (absolute gap) and relative index of inequality (relative gap). Setting/Participants: A total of 729,290 decedents aged ⩾18 years in Ontario, Canada from 2009 to 2016. Results: In 2016, the modelled absolute gap (corresponding 95% confidence interval) between the most- and least-deprived neighbourhoods in community deaths was 4.0% (2.9–5.1%), which was 8.6% (6.2–10.9%) of the overall mean (46.6%). Relative to 2009, these inequalities declined modestly. Inequalities in 2016 were evident for palliative home visits (6.8% (5.8–7.8%) absolute gap, 26.3% (22.5–30.0%) relative gap) and for physician encounters (6.8% (5.7–7.9%) absolute gap, 13.2% (11.0–15.3%) relative gap), and widened from 2009 for physician encounters only on the absolute scale. Inequalities varied considerably across disease trajectories (organ failure, terminal illness, frailty, and sudden death). Conclusion: Key measures of end-of-life care are not achieved equally across socioeconomic groups. These data can be used to inform policy strategies to improve delivery of palliative and end-of-life services.

scholarly journals Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

BMJ Open ◽  
2020 ◽  
Vol 10 (10) ◽  
pp. e037483
Author(s):  
Holly Standing ◽  
Rebecca Patterson ◽  
Mark Lee ◽  
Sonia Michelle Dalkin ◽  
Monique Lhussier ◽  
...  
Keyword(s):  
Palliative Care ◽  
Qualitative Study ◽  
Information Sharing ◽  
End Of Life ◽  
End Of Life Care ◽  
Social Care ◽  
Hospital Admissions ◽  
Sufficient Information ◽  
Life Care ◽  
Health And Social Care

ObjectivesTo explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care that meets patient preferences.DesignQualitative study using interviews and focus groups.SettingHealth and Social Care Services in the North of England.Participants71 participants, 62 health and social care professionals, 9 patients and family members.ResultsFour key themes were identified: information sharing challenges; information sharing systems; perceived benefits of an EPaCCS and barriers to use and requirements for an EPaCCS. Challenges in sharing information were a source of frustration for health and social care professionals as well as patients, and were suggested to result in inappropriate hospital admissions. Current systems were perceived by participants to not work well—paper advance care planning (ACP) documentation was often unavailable or inaccessible, meaning it could not be used to inform decision-making at the point of care. Participants acknowledged the benefits of an EPaCCS to facilitate information sharing; however, they also raised concerns about confidentiality, and availability of the increased time and resources required to access and maintain such a system.ConclusionsEPaCCS offer a potential solution to information sharing challenges in end-of-life care. However, our findings suggest that there are issues in the initiation and documentation of end-of-life discussions that must be addressed through investment in training in order to ensure that there is sufficient information regarding ACP to populate the system. There is a need for further qualitative research evaluating use of an EPaCCS, which explores benefits and challenges, uptake and reasons for disparities in use to better understand the potential utility and implications of such systems.

Self-Determination, End-of-Life Decisions, and the Role of Nurse Practitioners

2015 ◽  
Vol 21 (1) ◽  
pp. 11-14 ◽  
Author(s):  
Heather Bradley
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Nurse Practitioners ◽  
Nurse Practitioner ◽  
Terminally Ill ◽  
Self Determination ◽  
End Of Life Decisions ◽  
Supportive Role ◽  
Societal Changes

Nurse practitioners should be aware that societal changes could lead to their being asked to actively assist terminally ill patients who wish to end their lives, as opposed to their current supportive role in palliative care. With physician staff shortages and the need for nurse practitioners to fill the gaps, end-of-life responsibilities could be placed in the hands of nurse practitioners, rather than being reserved for physicians alone (Sagon, 2013). End-of-life matters raise uncertainties about the nurse practitioner role because it differs state by state, relates to ethics, reflects the religious beliefs of those involved, and concerns the conflict of nurses simultaneously caring for their patients while advocating for their right to self-determination in choosing to end their lives.

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