scholarly journals The Desires of Their Hearts: The Multidisciplinary Perspectives of African Americans on End-of-Life Care in the African American Community

2016 ◽  
Vol 34 (6) ◽  
pp. 510-517 ◽  
Author(s):  
Ramona L. Rhodes ◽  
Bryan Elwood ◽  
Simon C. Lee ◽  
Jasmin A. Tiro ◽  
Ethan A. Halm ◽  
...  
Keyword(s):  
Palliative Care ◽  
African American ◽  
African Americans ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
Culturally Sensitive Intervention

Background: Studies have identified racial differences in advance care planning and use of hospice for care at the end of life. Multiple reasons for underuse among African American patients and their families have been proposed and deserve further exploration. Objective: The goal of this study was to examine perceptions of advance care planning, palliative care, and hospice among a diverse sample of African Americans with varying degrees of personal and professional experience with end-of-life care and use these responses to inform a culturally sensitive intervention to promote awareness of these options. Methods: Semistructured interviews and focus groups were conducted with African Americans who had varying degrees of experience and exposure to end-of-life care both personally and professionally. We conducted in-depth qualitative analyses of these interviews and focus group transcripts and determined that thematic saturation had been achieved. Results: Several themes emerged. Participants felt that advance care planning, palliative care, and hospice can be beneficial to African American patients and their families but identified specific barriers to completion of advance directives and hospice enrollment, including lack of knowledge, fear that these measures may hasten death or cause providers to deliver inadequate care, and perceived conflict with patients’ faith and religious beliefs. Providers described approaches they use to address these barriers in their practices. Conclusion: Findings, which are consistent with and further elucidate those identified from previous research, will inform design of a culturally sensitive intervention to increase awareness and understanding of advance care planning, palliative care, and hospice among members of the African American community.

IMPROVING END-OF-LIFE CARE AND ADVANCE CARE PLANNING FOR FRAIL OLDER ADULTS IN CANADA

2018 ◽  
pp. 1-7
Author(s):  
J. Downar ◽  
P. Moorhouse ◽  
R. Goldman ◽  
D. Grossman ◽  
S. Sinha ◽  
...  
Keyword(s):  
Older Adults ◽  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Frail Older Adults ◽  
Key Concepts ◽  
Advance Care

We present five Key Concepts that describe priorities for improving end-of-life care for frail older adults in Canada, and recommendations based on each Key Concept. Key Concept #1: Our end-of-life care system is focused on cancer, not frailty. Key Concept #2: We need better strategies to systematically identify frail older adults who would benefit from a palliative approach. Key Concept #3: The majority of palliative and end-of-life care will be, and should be, provided by clinicians who are not palliative care specialists. Key Concept #4: Organizational change and innovative funding models could deliver far better end-of-life care to frail individuals for less than we are currently spending. Key Concept #5: Improving the quality and quantity of advance care planning for frail older adults could reduce unwanted intensive care and costs at the end of life, and improve the experience for individuals and family members alike.

Outpatient palliative care at a tertiary cancer center: Perceptions, pathways, and pitfalls.

2012 ◽  
Vol 30 (34_suppl) ◽  
pp. 28-28
Author(s):  
Kavitha Ramchandran ◽  
Sandy Trieu ◽  
Stephanie Harman ◽  
Judy Passaglia ◽  
Janet Rodriguez ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Cancer Center ◽  
Care Planning ◽  
Life Care ◽  
Code Status ◽  
Wide Range ◽  
Advance Care

28 Background: To describe an outpatient palliative care program at a quaternary cancer center- Stanford Cancer Institute. Outpatient palliative care (PC) programs are still in their nascency. Best practices are still being developed and key performance metrics are being delineated. This is a description of Stanford Cancer Institute outpatient PC program. Methods: Observational study of the first six months of encounters to the outpatient PC program. Description of potential barriers to launch and growth, as well as description of resources required for continued success. Data evaluated included program volume, referral patterns, advance care planning, symptom assessment and team structure as collected by the clinical team. Results: Initial barriers to program initiation included lack of funding and infrastructure. Additional barriers included coordination between teams, flow of care (patients late for next appointments), and cultural perceptions of palliative care as equal to end of life care. There are 32 referring practitioners to the program. Over the first six months the outpatient PC program has seen growth with volume increasing from 10 consults per month to 26 consults per month for a total of 60 patients. At the time of initial consult, 11 of the 60 patients seen had an advance directive. Only 1 patient had a physician order for life sustaining treatment (POLST). Code status was documented in 21 of the 60 patients. Conclusions: Our program had multiple barriers to launch: perceptions that palliative care equaled end of life care, lack of infrastructure and funding, and difficulty with coordination between teams. With administrative support the program secured funding, developed infrastructure with the assistance of IT, Cancer Center administration, and Care Coordination. Consults now come from a wide range of providers. Based on preliminary data indicating a very low percentage of completion of these tasks by patients on initial consult there is need for outpatient palliative care for advance care planning. Future growth will include continued penetration of the cancer center, increasing volume of consults, and additional assessments of patient satisfaction, symptom improvement, and hospital utilization.

scholarly journals Palliative Care With Dementia and Family Caregiver Involvement (A Collaborative Symposium between the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups)

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 786-786
Author(s):  
Jenny van der Steen ◽  
Christopher Johnson ◽  
Sheryl Zimmerman
Keyword(s):  
Palliative Care ◽  
Interest Groups ◽  
End Of Life ◽  
Family Caregivers ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Healthcare Professionals ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

Abstract This collaborative symposium offered by the Hospice, Palliative, and End-of-Life Care and Nursing Care of Older Adults Interest Groups addresses palliative care including advance care planning considerations for family caregivers and persons with dementia. Family caregivers may need information about palliative and end-of-life care that is specific to the person, the situation or the stage of dementia. This symposium shows information needs also differ by country and setting. Conversations about symptoms, and about current and end-of-life treatment preferences need support from healthcare professionals. The symposium shows results of a study on video recordings with end-of-life preferences and how, as a stand-alone, they may not inform palliative care practice, and integration of information sources for advance care planning is needed. We will also show that a question prompt list with examples of questions to encourage family caregivers to ask healthcare professionals can and should have different contents for different countries as the content reflects socio-cultural differences. In more studies, participants clearly neede information on the disease trajectory and available services. Such needs go beyond need for information on pain and other symptoms, as family caregivers often appreciate opportunities for social activities for persons with dementia. A decision aid study shows that persons with dementia and family caregivers can participate in advance care planning conversations when supported by the right tools. We argue that local client participation is important when developing tools. Overall, the symposium highlights the need for tailored tools to support face-to-face conversations with all stakeholders to encourage person-centred caregiving.

Church leaders and parishioners speak out about the role of the church in advance care planning and end-of-life care

2020 ◽  
pp. 1-7 ◽  
Author(s):  
Danetta Hendricks Sloan ◽  
Tamryn F. Gray ◽  
Darriel Harris ◽  
Theodora Peters ◽  
Anne Belcher ◽  
...  
Keyword(s):  
African American ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Well Being ◽  
Care Planning ◽  
Life Care ◽  
Advance Care ◽  
The Church

Abstract Objective Despite the increased focus on improving advance care planning (ACP) in African Americans through community partnerships, little published research focused on the role of the African American church in this effort. This study examines parishioner perceptions and beliefs about the role of the church in ACP and end-of-life care (EOLC). Method Qualitative interviews were completed with 25 church members (parishioners n = 15, church leader n = 10). The coding of data entailed a direct content analysis approach incorporating team experts for final themes. Results Seven themes emerged: (1) church role on end-of-life, (2) advocacy for health and well-being, (3) health literacy in EOLC, (4) lay health training on ACP and EOLC, (5) church recognized as a trusted source, (6) use of church ministries to sustain programs related to ACP and EOLC, and (7) community resources for EOLC needs. Significance of results The church has a central role in the African American Community. These findings suggest that involving African American churches in ACP and EOLC training can have a positive effect on facilitating planning and care during illness, dying, and death for their congregants.

End-of-life care in nursing home settings: Do race or age matter?

2008 ◽  
Vol 6 (1) ◽  
pp. 21-27 ◽  
Author(s):  
Kimberly S. Reynolds ◽  
Laura C. Hanson ◽  
Martha Henderson ◽  
Karen E. Steinhauser
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Pain Management ◽  
Nursing Homes ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

ABSTRACTObjective:One-quarter of all U.S. chronic-disease deaths occur in nursing homes, yet few studies examine palliative care quality in these settings. This study tests whether racial and/or age-based differences in end-of-life care exist in these institutional settings.Methods:We abstracted residents' charts (N = 1133) in 12 nursing homes. Researchers collected data on indicators of palliative care in two domains of care—advance care planning and pain management—and on residents' demographic and health status variables. Analyses tested for differences by race and age.Results:White residents were more likely than minorities to have DNR orders (69.5% vs. 37.3%), living wills (39% vs. 5%), and health care proxies (36.2% vs. 11.8%; p < .001 for each). Advance directives were highly and positively correlated with age. In-depth advance care planning discussions between residents, families, and health care providers were rare for all residents, irrespective of demographic characteristics. Nursing staff considered older residents to have milder and less frequent pain than younger residents. We found no disparities in pain management based on race.Significance of results:To the extent that advance care planning improves care at the end of life, racial minorities in nursing homes are disadvantaged compared to their white fellow residents. Focusing on in-depth discussions of values and goals of care can improve palliative care for all residents and may help to ameliorate racial disparities in end-of-life care. Staff should consider residents of all ages as appropriate recipients of advance care planning efforts and should be cognizant of the fact that individuals of all ages can experience pain. Nursing homes may do a better job than other health care institutions in eliminating racial disparities in pain management.

Advance Care Planning, Palliative Care, and End-of-Life Care

2017 ◽  
Vol 17 (3) ◽  
pp. 489-501
Author(s):  
Elliott Louis Bedford ◽  
Stephen Blaire ◽  
John G. Carney ◽  
Ron Hamel ◽  
J. Daniel Mindling ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
Advance Care

End-of-life care in non-malignant conditions

2018 ◽  
Vol 11 (1) ◽  
pp. 41-47
Author(s):  
Rachel Lewis
Keyword(s):  
Palliative Care ◽  
Chronic Disease ◽  
End Of Life ◽  
Advance Care Planning ◽  
End Of Life Care ◽  
Care Planning ◽  
Life Care ◽  
High Quality ◽  
Advance Care

End-of-life care refers to the care of patients with progressive, incurable conditions and considered to be in the last year of life. Approximately 75% of end-of-life patients will die from non-malignant conditions. There are significant challenges, both in the identification of patients with chronic disease who are nearing the end of life and in the provision of high-quality palliative care in this group. This article explores the role of GPs in the management of end-of-life care in the most common non-malignant conditions, including management of symptoms and advance care planning.

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