Crossing the River Styx: the power of music, spirituality and religion at the end of life

2019 ◽  
Vol 11 (4) ◽  
pp. 226
Author(s):  
Barbara Salas
Keyword(s):  
End Of Life ◽  
Spiritual Care ◽  
End Of Life Care ◽  
Terminal Illness ◽  
Spiritual Experience ◽  
Life Care ◽  
Quest For Meaning ◽  
Spirituality And Religion ◽  
The Individual

Dying from a terminal illness involves a period of transition throughout which the person deals with multiple losses, including the loss of one’s own life. The awareness of death makes the individual confront spiritual questions that touch the very nature of existence, and music can help intensify that spiritual experience bringing new meaning to the end of life. The reasons why spirituality, religion and music can facilitate the existential quest for meaning and provide an overall improvement of the quality of life at the end of life will be explored, aiming to suggest that a humanist approach to end-of-life care in which alleviation of suffering and consideration of the specific needsof the patient including spiritual care and therapy with music would be desirable to help patients during the dying process.

scholarly journals Caregiver perceptions of end-of-life care in patients with high-grade glioma

2020 ◽  
Vol 8 (2) ◽  
pp. 171-178
Author(s):  
John T Fortunato ◽  
Meredith Van Harn ◽  
Sameah A Haider ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Care Planning ◽  
High Grade ◽  
Life Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract Background Patients dying from high-grade gliomas (HGG) suffer from high symptom burden in the end-of-life (EoL) phase. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess caregiver perception on quality of EoL care of HGG patients. Methods Caregivers prospectively participated in the Toolkit After-Death Bereaved Family Member Interview, part of the Toolkit of Instruments to Measure End-of-Life Care (TIME survey). This validated survey assesses EoL care in areas such as physical comfort and emotional support, advance care planning, focus on the individual, attention to family, and coordination of care. The quality of EoL care was measured by domain scores (0 = care was always optimal, 1 = care was always suboptimal) or with a 0-10 scale. Results Of the 55 enrolled family caregivers, 44 completed the interview and rated the overall care high (8.90 ± 1.36/10), perceived that patients’ wishes were respected (9.46 ± 0.95) and that they died in dignity (9.65 ± 0.98). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16), and care coordination (0.11). Attention to family (0.25) needed improvement. Only 41% of caregivers were confident that they knew what to do at the time of death and 46% felt that the healthcare team did not provide them with someone to turn to in distress. Conclusions Caregivers reported high overall satisfaction with EoL HGG care, though attention to family and communication needed improvement. Focus should therefore be on improved caregiver communication to improve EoL care, caregiver burnout, and bereavement in HGG populations.

scholarly journals QOLP-14. CAREGIVER PERCEPTIONS OF END OF LIFE CARE IN PATIENTS WITH HIGH GRADE GLIOMA

2019 ◽  
Vol 21 (Supplement_6) ◽  
pp. vi200-vi200
Author(s):  
John Fortunato ◽  
Lonni Schultz ◽  
Joel Phillips ◽  
Tobias Walbert
Keyword(s):  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
High Grade ◽  
Life Care ◽  
Coordination Of Care ◽  
Advance Care ◽  
The Individual ◽  
Eol Care

Abstract INTRODUCTION Patients dying from high-grade gliomas (HGG) often suffer from a high symptom burden in the end-of-life (EoL) phase. Since patients with HGG typically do not follow up with providers in the EoL phase, information about quality of life and symptom management is sparse. Family caregivers are most informed about the patient’s symptoms and disease course. The aim of this study is to assess the quality of EoL care of HGG patients from the caregiver perspective. METHODS Caregivers participated in the Toolkit After-Death Bereaved Family Member Interview (TIME survey). This validated survey assesses EoL care by calculating “domain scores” (DS) in five different areas: 1) physical comfort and emotional support, 2) advance care planning, 3) focus on the individual, 4) attention to family, and 5) coordination of care. Caregivers also rated aspects of care using a 10 point Likert scale. RESULTS In a prospective study, 40 of 55 enrolled family caregivers completed the interview a median of 26 days after death. 68% of caregivers were female. DS indicate the quality of care. (0 = no opportunity to improve care, 1 = care was always sub-optimal). Caregivers perceived high satisfaction with information and decision-making (0.18), advance care planning (0.19), focus on the individual (0.16) and coordination of care (0.11). Attention to family (0.25) was not as well rated. Caregivers rated the overall care 8.90 ±1.36/10 on a 0–10 scale. CONCLUSIONS Caregivers reported a high overall satisfaction with EoL care provided, though attention to family could be improved. While previous research suggests the importance of good physician communication in allowing patients to die with dignity, more focus should be on the caregiver in the EoL phase to improve end of life care, caregiver burnout and bereavement.

scholarly journals Quality of End-of-Life Care Provided to Patients With Different Serious Illnesses

2016 ◽  
Vol 176 (8) ◽  
pp. 1095 ◽  
Author(s):  
Melissa W. Wachterman ◽  
Corey Pilver ◽  
Dawn Smith ◽  
Mary Ersek ◽  
Stuart R. Lipsitz ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care

scholarly journals Validation of the Chinese version of the Care Evaluation Scale for measuring the quality of structure and process of end-of-life care from the perspective of bereaved family

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Juanjuan Zhao ◽  
Liming You ◽  
Hongmei Tao ◽  
Frances Kam Yuet Wong
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Mainland China ◽  
Chinese Version ◽  
Life Care ◽  
Quality Of Dying ◽  
Bereaved Family ◽  
Quality Of Structure ◽  
Care Evaluation

Abstract Background Assessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in Mainland China. The aim of this study is to validate the Chinese version of the Care Evaluation Scale (CES). Methods From January to December 2017, a cross-sectional online survey was conducted among bereaved family members of cancer patients from 10 medical institutes. The reliability of the CES was assessed with Cronbach’s α, and structural validity was evaluated by confirmatory factor analysis. Concurrent validity was tested by examining the correlation between the CES total score and overall satisfaction with end-of-life care, quality of dying and death, and quality of life. Results A total of 305 valid responses were analyzed. The average CES score was 70.7 ± 16.4, and the Cronbach’s α of the CES was 0.967 (range: 0.802–0.927 for the 10 domains). The fit indices for the 10-factor model of CES were good(root-mean-square error of approximation, 0.047; comparative fit index, 0.952; Tucker–Lewis index, 0.946; standardized root mean square residual, 0.053). The CES total score was highly correlated with overall satisfaction with medical care (r = 0.775, P < 0.01), and moderately correlated with patients’ quality of life (r = 0.579, P < 0.01) and quality of dying and death (r = 0.570, P < 0.01). In addition, few associations between CES total score and demographic characteristics, except for the family members’ age. Conclusions The Chinese version of the CES is a reliable and valid tool to evaluate the quality of structure and process of end-of-life care for patients with cancer from the perspective of bereaved family in Mainland China.

scholarly journals Life-and-Death Attitude and Its Formation Process and End-of-Life Care Expectations Among the Elderly Under Traditional Chinese Culture: A Qualitative Study

2021 ◽  
pp. 104365962110214
Author(s):  
Lei Lei ◽  
Quanxi Gan ◽  
Chunyan Gu ◽  
Jing Tan ◽  
Yu Luo
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Formation Process ◽  
End Of Life Care ◽  
Chinese Culture ◽  
Life Quality ◽  
The Elderly ◽  
Life Care ◽  
Life And Death ◽  
The Individual

Introduction With the global aging process intensified, the demand for end-of-life care has surged, especially in China. However, its development is restricted. Understanding the life and death attitude among the elderly and its formation process, and clarifying their needs, are so important to promote social popularization of end-of-life care. Methodology This qualitative study included 20 elderly residents in Nan and Shuangbei Communities, Chongqing City, People’s Republic of China. Data were collected through semistructured in-depth individual interviews and processed by thematic analysis method. Results Three themes and eight subthemes were identified: Characteristics of formation process (passive thinking, closed and single), life-and-death attitude (cherish and enjoy life, quality of life priority, let death take its course) and expectations of end-of-life care (preferences, basic needs, good death). Discussion Life-and-death attitude and end-of-life care expectations of the elderly support the development and delivery of end-of-life care. Furthermore, the individual-family-hospital linkage discussion channel needs to be further explored.

Quality of end-of-life care for Vietnam-era Veterans: Implications for practice and policy

Healthcare ◽  
2021 ◽  
Vol 9 (2) ◽  
pp. 100494
Author(s):  
Ann Kutney-Lee ◽  
Dawn Smith ◽  
Hilary Griffin ◽  
Daniel Kinder ◽  
Joan Carpenter ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Vietnam Era

scholarly journals Last Place of Care and End-of-Life Quality of Life in the United States: Evidence From a National Representative Data Set

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 17-17
Author(s):  
Yifan Lou ◽  
Nan Jiang ◽  
Katherine Ornstein
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
The United States ◽  
Life Care ◽  
Person Centered Care ◽  
Centered Care ◽  
The Relationship

Abstract Background: Quality of life (QoL) during last stage of life has raised expanded interests as an important aspect of person-centered care. Last place of care (LPC), refer to the last place decedents received their formal end-of-life care (EOLC), has been identified as a key indicator of older adults’ end-of-life QoL, but the relationship was understudied. This study explores the association between LPC and end-of-life QoL among American older adults. Methods: Data used seven waves of Last Month of Life data with a total sample of 3068 Medicare decedents in NHATS. Outcome is end-of-life QoL assessed by eleven measures on four domains: pain and symptoms management (SP), quality of healthcare encounter (HE), person-centered care (PC), and overall quality of care (QC). LPC was categorized into home, hospital, nursing home, and residential hospice. Multivariate logistic regression analyses were used to examine the relationship with covariates. Results: LPC varied by most demographic characteristics, except immigration status and education. Older adults whose LPC is hospital, compared to those who had home-care, were less likely to have great experiences on HE, PC, and QC. People dying at nursing homes are more likely to receive care meeting their dyspnea and spiritual needs. Residential hospice is negatively related to respected care, clear coordination, and keeping family informed, but are more likely to provide PS and spiritual care. Discussion: Home-based end-of-life care has certain advantages but still has room to improve on SP and religious concerns. Hospitals should keep reforming their service delivery structure to improve patients’ QoL.

scholarly journals Challenges Related to Informal Care Partners’ Involvement in End-of-Life-Care in Assisted Living

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 16-17
Author(s):  
Molly Perkins ◽  
Ann Vandenberg ◽  
Candace Kemp ◽  
Mary Ball ◽  
Joanna Jungerman ◽  
...  
Keyword(s):  
End Of Life ◽  
Informal Care ◽  
Caregiver Burden ◽  
Assisted Living ◽  
End Of Life Care ◽  
Life Care ◽  
Term Care ◽  
Care Partners ◽  
Relational Factors

Abstract Limited empirical evidence suggests that caregiver burden is greater for informal care partners (family and friends) in assisted living (AL) compared with other long-term care settings, particularly within context of end of life. Using qualitative data from a larger 5-year, 7-site study of end-of-life care in AL funded by the National Institute on Aging (R01AG047408), we investigate informal care partners’ involvement in end-of-life care and identify challenges related to informal caregiving that might contribute to care burden. Grounded theory analysis of ethnographic data and in-depth interviews (average interview length = 97 minutes) with 59 racially and ethnically diverse informal care partners (mean age = 60) shows that informal care partner involvement in end-of-life care varies across participants and over time and is shaped by multiple intersecting social and structural determinants. At individual levels, these include many personal, situational, and relational factors. Personal factors include but are not limited to care partners’ own physical and mental health and material resources (e.g., ability to pay for supplementary care). Situational and relational factors include care partners’ awareness (or lack thereof) of residents’ impending death and the quality of the caregiving relationship. AL and wider community-level factors include understaffing, staff turnover, inadequate hospice support, and lack of access to these services. We find that informal care partners navigate these caregiving challenges through a basic social process we conceptualize as “negotiating risks.” Strategies for easing caregiver burden and improving informal care partner and resident quality of life at end of life are implicated.

Developing methods to improve the quality of end-of-life care

2004 ◽  
Vol 18 (2) ◽  
pp. 200-201 ◽  
Author(s):  
Rhidian A Hughes ◽  
Julia M Addington-Hall ◽  
Fiona Aspinal ◽  
Maria Dunckley ◽  
Irene J Higginson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

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