scholarly journals Older Persons’ Thoughts about Death and Dying and their Experiences of End-of-Life Care: A Qualitative Study

2020 ◽  
Author(s):  
Johanna Tjernberg ◽  
Christina Bökberg
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Older Persons ◽  
Death And Dying ◽  
Life Care ◽  
Healthy Persons

Abstract Background: Few studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons’ perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life.Aim: To explore thoughts about death and dying and experiences of end-of-life care among older persons living in nursing homes.Methods: This study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4).Results: The analysis resulted in the identification of three main thematic categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. The older persons did not fear death itself but had some worries about dying. Spending the last stage of life at a nursing home contributed to different thoughts and feelings among the older persons. With a few exceptions, older persons characterized life at the nursing home as boring and felt they were surrounded by people who did not belong there.Conclusions: This study indicates a need for older persons to talk about death, dying and end-life issues. Furthermore, this study highlighted that the co-residence of cognitively healthy persons and persons with dementia in the same ward adversely affected cognitively healthy persons. This situation resulted in there being not enough time to both handle the care needs of persons with dementia and have the conversations that cognitively healthy persons desired, such as conversations about thoughts about existence, that could have improved their quality of life.Trial registration: NCT02708498 Date of registration 16 February 2016.

scholarly journals Older persons’ thoughts about death and dying and their experiences of end-of-life care: a qualitative study

2020 ◽  
Author(s):  
Johanna Tjernberg ◽  
Christina Bökberg
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Older Persons ◽  
Death And Dying ◽  
Life Care ◽  
Healthy Persons

Abstract Background: Few studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons’ perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life.Aim: To explore thoughts about death and dying and experiences of end-of-life care among older persons living in nursing homes.Methods: This study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4).Results: The analysis resulted in the identification of three main thematic categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. The older persons did not fear death itself but had some worries about dying. Spending the last stage of life at a nursing home contributed to different thoughts and feelings among the older persons. With a few exceptions, older persons characterized life at the nursing home as boring and felt they were surrounded by people who did not belong there.Conclusions: This study indicates a need for older persons to talk about death, dying and end-life issues. Furthermore, this study highlighted that the co-residence of cognitively healthy persons and persons with dementia in the same ward adversely affected cognitively healthy persons. This situation resulted in there being not enough time to both handle the care needs of persons with dementia and have the conversations that cognitively healthy persons desired, such as conversations about thoughts about existence, that could have improved their quality of life.Trial registration: NCT02708498 Date of registration 16 February 2016.

scholarly journals Older persons’ thoughts about death and dying and their experiences of care in end-of-life: a qualitative study

BMC Nursing ◽  
2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Johanna Tjernberg ◽  
Christina Bökberg
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
Older Persons ◽  
Death And Dying ◽  
Living Condition ◽  
Care Needs ◽  
Healthy Persons

Abstract Background Few studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons’ perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life. Aim To explore thoughts about death and dying and experiences of care in end-of-life among older persons living in nursing homes. Methods This study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4). Results The analysis resulted in the identification of three main thematic categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. The older persons did not fear death itself but had some worries about dying. Spending the last stage of life at a nursing home contributed to different thoughts and feelings among the older persons. With a few exceptions, older persons characterized life at the nursing home as boring and felt they were surrounded by people who did not belong there. Conclusions This study indicates a need for older persons to talk about death, dying and end-life issues. Furthermore, this study highlighted that the co-residence of cognitively healthy persons and persons with dementia in the same ward adversely affected cognitively healthy persons. This situation resulted in there being not enough time to both handle the care needs of persons with dementia and have the conversations that cognitively healthy persons desired, such as conversations about thoughts about existence, that could have improved their quality of life. Trial registration NCT02708498 Date of registration 16 February 2016.

scholarly journals Older persons’ thoughts about death and dying and their experiences of care in end-of-life: a qualitative study

2020 ◽  
Author(s):  
Johanna Tjernberg ◽  
Christina Bökberg
Keyword(s):  
Quality Of Life ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
Older Persons ◽  
Death And Dying ◽  
Living Condition ◽  
Care Needs ◽  
Healthy Persons

Abstract Background: Few studies have focused on how older persons living in nursing homes perceive their last period of life. Furthermore, previous research on older persons’ perceptions of death and dying is limited. Hence, there is an urgent need to explore their experiences during their final period in life.Aim: To explore thoughts about death and dying and experiences of care in end-of-life among older persons living in nursing homes.Methods: This study employed a qualitative approach including individual interviews with 36 older persons living in Swedish nursing homes. Questions related to quality of life; physical health; thoughts about death, dying, and the future; and experiences related to the living condition and environment were asked. The interview transcripts were analysed through content analysis. The study was approved by the Regional Ethics Review Board (reference number: 2015/4).Results: The analysis resulted in the identification of three main thematic categories: The unavoidable and unknown end of life, Thoughts on control and Living your last period of life at a nursing home. The older persons did not fear death itself but had some worries about dying. Spending the last stage of life at a nursing home contributed to different thoughts and feelings among the older persons. With a few exceptions, older persons characterized life at the nursing home as boring and felt they were surrounded by people who did not belong there.Conclusions: This study indicates a need for older persons to talk about death, dying and end-life issues. Furthermore, this study highlighted that the co-residence of cognitively healthy persons and persons with dementia in the same ward adversely affected cognitively healthy persons. This situation resulted in there being not enough time to both handle the care needs of persons with dementia and have the conversations that cognitively healthy persons desired, such as conversations about thoughts about existence, that could have improved their quality of life.Trial registration: NCT02708498 Date of registration 16 February 2016.

scholarly journals Do Palliative Care Teams in Nursing Homes Improve the Quality of End-of-Life Care for Nursing Home Residents?

2019 ◽  
Author(s):  
Helena Temkin-Greener Helena Temkin-Greener ◽  
Dana Mukamel ◽  
Susan Ladwig ◽  
Thomas , Caprio ◽  
Sally Norton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Life Care ◽  
Palliative Care Teams

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 Advance care planning preferences in Chinese nursing home residents: results from two cross-sectional studies in Hong Kong and Taiwan

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Xinyi Xu ◽  
Shu-Wen Tu ◽  
Chia-Chin Lin
Keyword(s):  
Hong Kong ◽  
Nursing Home ◽  
End Of Life ◽  
Advance Directive ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Completion Rate ◽  
Life Care ◽  
Term Care

Abstract Background The proportion of hospital deaths has declined in the past few decades, while the proportions of nursing home deaths have increased. This trend of increasing deaths in long-term care facilities underlines the importance of improving end-of-life care provisions in these settings to meet individual preferences and needs. Under these circumstances, a comprehensive understanding of end-of-life care preferences in local nursing home residents can help healthcare professionals and policymakers develop strategies to increase the advance directive completion rate and quality of care. This study aimed to explore and compare advance directive and end-of-life care preferences of nursing home residents in Hong Kong and Taiwan. Methods A structured questionnaire was developed by the research team to investigate advance directive and end-of-life care preferences in older Chinese nursing home residents. Nursing home residents with frail or pre-frail status and over the age of 64 were invited to participate in the study, and information on demographics, functional status, advance directive experiences, and end-of-life care expectations was collected through questionnaire interviews. Results A total of 325 eligible participants from 32 facilities completed the survey, including 238 older residents in Hong Kong and 87 in Taiwan. A significantly lower proportion of the Hong Kong residents had completed an advance directive compared with the Taiwanese (3 vs. 13%, p = 0.001). Among participants who did not have an advance directive, 46% of the Taiwanese participants said they would consider completing one in the future, compared with 20% of the Hong Kong participants (p < 0.001). A total of 79% of the Hong Kong participants and 80% of the Taiwanese participants responded that prolonging life in the given hypothetical dying scenario was “not important” (p = 0.76). Only 14% of participants in Hong Kong and 18% of participants in Taiwan reported prior occurrence of end-of-life care discussions with family members or health professionals (p = 0.37). Conclusions This paper adds evidence in support of improving end-of-life communication and the advance directive completion rate in nursing homes in Hong Kong and Taiwan. Further research is necessary to explore cross-cultural differences in end-of-life preferences and its applications in predicting decision-making and the quality of end-of-life care.

scholarly journals END-OF-LIFE CARE PREFERENCES AND WELL-BEING IN LONG-TERM CARE RESIDENTS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S669-S669
Author(s):  
Kelly Shryock ◽  
Jacinta Dickens ◽  
Anisha Thomas ◽  
Suzanne Meeks
Keyword(s):  
Quality Of Life ◽  
Positive Affect ◽  
End Of Life ◽  
End Of Life Care ◽  
Long Term Care ◽  
Well Being ◽  
Life Care ◽  
Term Care

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.

scholarly journals ‘. . . and then no more kisses!’ Exploring patients’ experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care A mixed-methods study

2019 ◽  
Vol 34 (2) ◽  
pp. 219-230 ◽  
Author(s):  
Maria Heckel ◽  
Alexander Sturm ◽  
Stephanie Stiel ◽  
Christoph Ostgathe ◽  
Franziska A Herbst ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
End Of Life ◽  
End Of Life Care ◽  
Multidrug Resistant ◽  
Life Care ◽  
Hygiene Measures ◽  
Patients Wishes

Background: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients. Objectives: To integrate patients’ perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms’ diagnosis, protection and isolation measures on their well-being and patients’ wishes and needs regarding their care. Design: A mixed-methods convergent parallel design embedded quantitative data on the patients’ multidrug-resistant bacterial microorganisms’ trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. Setting/participants: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. Results: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms’ diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients’ quality of life. Patients’ wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. Conclusion: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms’ diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms’ policies of hospitals.

scholarly journals Quality of dying and quality of end-of-life care of nursing home residents in six countries: An epidemiological study

2018 ◽  
Vol 32 (10) ◽  
pp. 1584-1595 ◽  
Author(s):  
Lara Pivodic ◽  
Tinne Smets ◽  
Nele Van den Noortgate ◽  
Bregje D Onwuteaka-Philipsen ◽  
Yvonne Engels ◽  
...  
Keyword(s):  
Nursing Home ◽  
End Of Life ◽  
Epidemiological Study ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Life Care ◽  
Quality Of Dying

scholarly journals Nursing home staff’s perspective on end-of-life care of German nursing home residents: a cross-sectional survey

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Anke Strautmann ◽  
Katharina Allers ◽  
Alexander Maximilian Fassmer ◽  
Falk Hoffmann
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
Nursing Staff ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Hospital Death ◽  
Life Care ◽  
Cross Sectional

Abstract Background Nursing homes are becoming more important for end-of-life care. Within the industrialised world, Germany is among the countries with the most end-of-life hospitalizations in nursing home residents. To improve end-of-life care, investigation in the status quo is required. The objective was to gain a better understanding of the perspectives of nursing home staff on the current situation of end-of-life care in Germany. Methods A cross-sectional study was conducted as a postal survey among a random sample of 1069 German nursing homes in 2019. The survey was primarily addressed to nursing staff management. Data was analyzed using descriptive statistics. Staff was asked to rate different items regarding common practices and potential deficits of end-of-life care on a 5-point-Likert-scale. Estimations of the proportions of in-hospital deaths, residents with advance directives (AD), cases in which documented ADs were ignored, and most important measures for improvement of end-of-life care were requested. Results 486 (45.5%) questionnaires were returned, mostly by nursing staff managers (64.7%) and nursing home directors (29.9%). 64.4% of the respondents rated end-of-life care rather good, the remainder rated it as rather bad. The prevalence of in-hospital death was estimated by the respondents at 31.5% (SD: 19.9). Approximately a third suggested that residents receive hospital treatments too frequently. Respondents estimated that 45.9% (SD: 21.6) of the residents held ADs and that 28.4% (SD: 26.8) of available ADs are not being considered. Increased staffing, better qualification, closer involvement of general practitioners and better availability of palliative care concepts were the most important measures for improvement. Conclusions Together with higher staffing, better availability and integration of palliative care concepts may well improve end-of-life care. Prerequisite for stronger ties between nursing home and palliative care is high-quality education of those involved in end-of-life care.

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