Cultural Values, Preferences and Goals and of End of Life Care of Family Members of Patients with Life-Limiting Illness in Kumasi, Ghana: A Community-Based Study (TH370C)

Abstract This study aims to investigate whether attitude and perception on late-life death and dying, end-of-life care plans and preferences could be better understood from current values shared between aging parents and their adult children in the multi-cultural city-bound country, Singapore. We are in the process of interviewing 20 aging parent-adult child dyads. Up to date, six semi-structured interviews were completed and transcribed. We performed Content analysis to analyze the transcripts. Preliminary findings showed that both aging parents and adult children rarely discussed this issue, although parents had their own plans or preferences. The major barriers against open conversations about death and dying of aging parents include: the perception of not-yet time to talk about this issue (without knowing when the right time is) and tendency to have conversations about death in tandem with finances, but not death itself. Although specific end-of-life care plans or arrangements were not thought out thoroughly, aging parents expressed a high level of trust and reliance on close family members’ decisions regarding their end-of-life care. They tended to agree on joint decision-making process within family, even though adult children had no or unmatched ideas about their aging parents’ end-of-life wishes. This did not necessarily align with previous findings in Western countries, underscoring individuals’ control over their own death and dying process. Open conversation within family, family-involved advance care planning, or joint decision-making processes may be warranted to promote quality of life and death in older Singaporeans and well-being of their family members of all ages.

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Course and predictors of posttraumatic stress-related symptoms among family members of deceased ICU patients during the first year of bereavement

Critical Care ◽

10.1186/s13054-021-03719-x ◽

2021 ◽

Vol 25 (1) ◽

Author(s):

Siew Tzuh Tang ◽

Chung-Chi Huang ◽

Tsung-Hui Hu ◽

Wen-Chi Chou ◽

Li-Pang Chuang ◽

...

Keyword(s):

Social Support ◽

Posttraumatic Stress ◽

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Life Care ◽

Ptsd Symptoms ◽

Icu Patients ◽

Clinically Significant ◽

Bereaved Family

Abstract Background/Objective Death in intensive care units (ICUs) may increase bereaved family members’ risk for posttraumatic stress disorder (PTSD). However, posttraumatic stress-related symptoms (hereafter as PTSD symptoms) and their precipitating factors were seldom examined among bereaved family members and primarily focused on associations between PTSD symptoms and patient/family characteristics. We aimed to investigate the course and predictors of clinically significant PTSD symptoms among family members of deceased ICU patients by focusing on modifiable quality indicators for end-of-life ICU care. Method In this longitudinal observational study, 319 family members of deceased ICU patients were consecutively recruited from medical ICUs from two Taiwanese medical centers. PTSD symptoms were assessed at 1, 3, 6, and 13 months post-loss using the Impact of Event Scale-Revised (IES-R). Family satisfaction with end-of-life care in ICUs was assessed at 1 month post-loss. End-of-life care received in ICUs was documented over the patient’s ICU stay. Predictors for developing clinically significant PTSD symptoms (IES-R score ≥ 33) were identified by multivariate logistic regression with generalized estimating equation modeling. Results The prevalence of clinically significant PTSD symptoms decreased significantly over time (from 11.0% at 1 month to 1.6% at 13 months post-loss). Longer ICU stays (adjusted odds ratio [95% confidence interval] = 1.036 [1.006, 1.066]), financial insufficiency (3.166 [1.159, 8.647]), and reported use of pain medications (3.408 [1.230, 9.441]) by family members were associated with a higher likelihood of clinically significant PTSD symptoms among family members during bereavement. Stronger perceived social support (0.937 [0.911, 0.965]) and having a Do-Not-Resuscitate (DNR) order issued before the patient’s death (0.073 [0.011, 0.490]) were associated with a lower likelihood of clinically significant PTSD symptoms. No significant association was observed for family members’ satisfaction with end-of-life care (0.988 [0.944, 1.034]) or decision-making in ICUs (0.980 [0.944, 1.018]). Conclusions The likelihood of clinically significant PTSD symptoms among family members decreased significantly over the first bereavement year and was lower when a DNR order was issued before death. Enhancing social support and facilitating a DNR order may reduce the trauma of ICU death of a beloved for family members at risk for developing clinically significant PTSD symptoms.

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Nursing Home Resident, Family, and Staff Perspectives on Hospital Transfers for End-of-Life Care

OMEGA - Journal of Death and Dying ◽

10.1177/0030222821997708 ◽

2021 ◽

pp. 003022282199770

Author(s):

Janet Sopcheck ◽

Ruth M. Tappen

Keyword(s):

Emergency Department ◽

Nursing Home ◽

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Terminally Ill ◽

South Florida ◽

Care Planning ◽

Life Care ◽

Advance Care

Residents who are terminally ill often experience transfers to the emergency department resulting in hospitalizations, which may be potentially avoidable with treatment in the nursing home. This qualitative study explored the perspectives of 15 residents, 10 family members, and 20 nursing home staff regarding end-of-life care and the circumstances prompting resident transfers. Data analysis of participant interviews conducted January to May 2019 in a South Florida nursing home identified four themes related to transfer to the hospital: time left to live, when aggressive treatments would be unavailing, not knowing what the nursing home can do, and transfer decisions are situation-dependent. Study findings underscore the importance of increasing resident and family awareness of treatments available in the nursing home and person-centered advance care planning discussions. Further research should explore the reasons for residents’ and family members’ choice of aggressive therapies and their goals for care at the end of life.

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End-of-Life Doulas: Documenting Their Backgrounds and Services

OMEGA - Journal of Death and Dying ◽

10.1177/00302228211047097 ◽

2021 ◽

pp. 003022282110470

Author(s):

Amy Dellinger Page ◽

Jonelle H. Husain

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Qualitative Interviews ◽

Family Members ◽

Demographic Characteristics ◽

Life Care ◽

Healthcare Settings ◽

Survey Results ◽

Original Survey

This is an exploratory study to document the demographic characteristics, backgrounds, and services provided by trained and certified INELDA end-of-life doulas. Like birth doulas, end-of-life doulas represent a divergent, yet complementary form of care for dying persons. The purpose of end-of-life care is to facilitate comfort of the dying person and their closest family members. Surveys were completed by 618 end-of-life doulas regarding their demographic characteristics, employment backgrounds, services, and their experiences providing end of life care to dying persons and their closest family members. Follow-up qualitative interviews were also conducted with a subset of 39 respondents who completed the original survey. Results show that trained doulas are largely white (91.4%), female (90.4%), hold a Bachelor’s (32.3%) or Masters (32.4%) degree, and are employed outside of their EOLD work (70.1%). Qualitative data details services provided to dying persons and family members in addition to the benefits and challenges of working with traditional healthcare settings.

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Understanding Bereaved Family Members’ Dissatisfaction with End-of-Life Care in Nursing Homes

Journal of Gerontological Nursing ◽

10.3928/00989134-20120906-94 ◽

2012 ◽

Vol 38 (10) ◽

pp. 49-60 ◽

Cited By ~ 23

Author(s):

Genevieve N. Thompson ◽

Susan E. McClement ◽

Verena H. Menec ◽

Harvey M. Chochinov

Keyword(s):

Nursing Homes ◽

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Life Care ◽

Bereaved Family

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A thematic analysis of in-hospital end-of-life care experiences of surviving family members

Death Studies ◽

10.1080/07481187.2019.1648341 ◽

2019 ◽

pp. 1-11

Author(s):

Shannon Johnson ◽

Anne Kelemen ◽

Coleia Grimes ◽

Susannah Stein ◽

Hunter Groninger

Keyword(s):

End Of Life ◽

Thematic Analysis ◽

End Of Life Care ◽

Family Members ◽

Life Care

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Barriers and facilitators to optimal supportive end-of-life palliative care in long-term care facilities: a qualitative descriptive study of community-based and specialist palliative care physicians’ experiences, perceptions and perspectives

BMJ Open ◽

10.1136/bmjopen-2020-037466 ◽

2020 ◽

Vol 10 (8) ◽

pp. e037466

Author(s):

Patricia Harasym ◽

Sarah Brisbin ◽

Misha Afzaal ◽

Aynharan Sinnarajah ◽

Lorraine Venturato ◽

...

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Long Term Care ◽

Symptom Assessment ◽

Assessment Tools ◽

Life Care ◽

Community Based ◽

Term Care

ObjectiveThe COVID-19 pandemic has highlighted ongoing challenges to optimal supportive end-of-life care for adults living in long-term care (LTC) facilities. A supportive end-of-life care approach emphasises family involvement, optimal symptom control, multidisciplinary team collaboration and death and bereavement support services for residents and families. Community-based and palliative care specialist physicians who visit residents in LTC facilities play an important role in supportive end-of-life care. Yet, perspectives, experiences and perceptions of these physicians remain unknown. The objective of this study was to explore barriers and facilitators to optimal supportive end-of-life palliative care in LTC through the experiences and perceptions of community-based and palliative specialist physicians who visit LTC facilities.DesignQualitative study using semi-structured interviews, basic qualitative description and directed content analysis using the COM-B (capability, opportunity, motivation - behaviour) theoretical framework.SettingResidential long-term care.Participants23 physicians who visit LTC facilities from across Alberta, Canada, including both in urban and rural settings of whom 18 were community-based physicians and 5 were specialist palliative care physicians.ResultsMotivation barriers include families’ lack of frailty knowledge, unrealistic expectations and emotional reactions to grief and uncertainty. Capability barriers include lack of symptom assessment tools, as well as palliative care knowledge, training and mentorship. Physical and social design barriers include lack of dedicated spaces for death and bereavement, inadequate staff, and mental health and spiritual services of insufficient scope for the population.ConclusionFindings reveal that validating families’ concerns, having appropriate symptom assessment tools, providing mentorship in palliative care and adapting the physical and social environment to support dying and grieving with dignity facilitates supportive, end-of-life care within LTC.

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