Four Kinds of Hard: An Understanding of Cancer and Death among Latino Community Leaders

Early integration of palliative care after a diagnosis of cancer improves outcomes, yet such care for Latino populations is lacking in rural regions of the United States. We used a participatory action research design with Latino community leaders from emerging immigrant communities in North Carolina to explore sociocultural perspectives on cancer and death. Thematic analysis was conceptualized as Four Kinds of Hard represented by four themes: Receiving an Eviction Notice, Getting in the Good Book, Talking is (Sometimes) Taboo, and Seeing Their Pain Makes us Suffer. These themes captured fears of deportation, coping with cancer through faithfulness, ambivalence about advance care planning, and a desire to spare families from suffering. Findings suggest strategies to improve conversations about end-of-life wishes when facing advanced illness and death. This study demonstrates the importance of training Latino community leaders to improve palliative care and bridge service gaps for Latino families living in emerging rural communities.

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A Qualitative Study on Making Rural Communities More Dementia-Friendly

Innovation in Aging ◽

10.1093/geroni/igaa057.899 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 281-281

Author(s):

Melissa OConnor ◽

Megan Pedersen ◽

Rachel Grace

Keyword(s):

Rural Communities ◽

The United States ◽

Community Dwelling ◽

Community Leaders ◽

Survey Question ◽

Telephone Surveys ◽

Know How ◽

Intergenerational Programs ◽

The World ◽

Personal Connections

Abstract Recent studies on attitudes toward dementia in the United States, such as the World Alzheimer Report 2019, have found that fear and stigma are still widespread among the general public. This may be particularly true in rural communities. In the current study, community-dwelling adults in small Midwestern communities responded to the open-ended survey question, “What do you think could be done to make your community more welcoming for people with Alzheimer’s disease and other forms of dementia?” Participants (N=242) ranged in age from 18-88 (M=40, SD=21). The sample was 68% female, and 61% lived in communities of 50,000-150,000 people, while 39% lived in smaller towns. Most participants (61.2%) did not personally know someone with dementia. Data were collected via paper and telephone surveys. Responses to the open-ended question were analyzed using open, axial, and selective coding. The following themes emerged: greater exposure to individuals with dementia; educational workshops about dementia; more intergenerational programs; greater accessibility of respite care and other services; more fundraising efforts; and community leaders talking about dementia. Responses included, “Have more intergenerational programs that bring together Alzheimer’s patients and children in a positive environment.” “When I was in school, we visited an Alzheimer’s unit. That was a great experience.” “I know what it is, but I don’t know anything else. I wish I was more informed. I don’t know how to help.” These findings indicate that residents of rural communities are motivated to help individuals with dementia, but need more guidance, education, and personal connections/exposure.

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Inpatient Palliative Care Consult: A Marker for High Risk of Readmission or Death in Discharged Oncology Inpatients

Journal of Palliative Care ◽

10.1177/0825859719869062 ◽

2019 ◽

pp. 082585971986906

Author(s):

Debbie Selby ◽

Anita Chakraborty ◽

Audrey Kim ◽

Jeff Myers

Keyword(s):

Emergency Department ◽

Palliative Care ◽

High Risk ◽

Acute Care ◽

Disease Process ◽

Emergency Department Visits ◽

Advanced Illness ◽

Phone Calls ◽

Palliative Care Teams ◽

Advance Care

Background: Emergency department visits or readmission to hospital are common particularly among those with advanced illness. Little prospective data exist on early outcomes specifically for patients seen by a palliative care consult service during their acute care admission, who are subsequently discharged home. Methods: This study followed 62 oncology patients who had had a palliative care consult during their admission to acute care with weekly phone calls postdischarge for 4 weeks. Events recorded included death, readmission, emergency department visits, and admission to a palliative care unit. Results: By the end of the study, 32 (52%) of 62 had had at least 1 event, (readmission, emergency department visit, or death), with the majority of these occurring in the first 2 weeks postdischarge. The overall 4-week death rate was 14 (22.6%) of 62. Conclusions: These data suggest that the need for a palliative care consult identifies inpatients at very high risk for early deterioration and underlines the critical importance of advance care planning/goals-of-care discussions by the oncology and palliative care teams to ensure patients and families understand their disease process and have the opportunity to direct their care decisions.

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Current landscape of combined oncology/palliative care training in the United States.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.31_suppl.68 ◽

2019 ◽

Vol 37 (31_suppl) ◽

pp. 68-68 ◽

Cited By ~ 1

Author(s):

Ramy Sedhom ◽

Arjun Gupta ◽

Thomas J. Smith ◽

Arif Kamal

Keyword(s):

Palliative Care ◽

Health Systems ◽

Medical Oncology ◽

The United States ◽

Cancer Therapies ◽

Early Integration ◽

Key Stakeholders ◽

Oncology Care ◽

Care Training ◽

New Cancer Therapies

68 Background: Recent calls by ASCO and others recommend early integration of oncology and palliative care. The rapid growth of new cancer therapies (e.g. immunotherapy) and their associated side effects and prognostic uncertainty suggest the need for oncologists to have palliative care sub-specialization. Despite the logical integration of oncology and palliative care training, the current landscape of ACGME training programs for these fields is unknown. Methods: We explored the ERAS Fellowship Website (https://www.aamc.org/services/eras/) on June 15, 2019, and collected information on Medical oncology, Medical Oncology/Hematology, and Hospice and Palliative Medicine (HPM) Programs. We identified institutions/ health systems that offered both Medical Oncology and HPM programs. We also identified institutions/ health systems that offered other Fellowships combined with Medical Oncology. We validated information by verifying each training program's website. Results: 152 unique programs offered Medical Oncology fellowship (144 combined with hematology) and 131 unique programs offered HPM fellowship. 7 Medical Oncology programs had tracks that allowed combination with geriatrics or infectious disease. 73 unique institutions/ health systems offered both Medical Oncology and HPM training separately, but no programs offered a combined Medical Oncology/ HPM track. Conclusions: Despite the call to better integrate palliative care in oncology care, we did not find any published descriptions of tracks combining Medical Oncology and HPM training. Successful examples of integrating Medical Oncology with other disciplines such as geriatrics exist. Trainees may still forge their own pathway and do sequential fellowships in Medical Oncology and HPM, but investment by key stakeholders is essential to pilot novel educational programs to address workforce issues in this field. It remains unknown how many programs accommodate combined or sequential training for interested applicants, or how they are funded.

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Building definitional consensus in palliative care

10.1093/med/9780198821328.003.0005 ◽

2021 ◽

pp. 35-43

Author(s):

Russell K. Portenoy

Keyword(s):

Palliative Care ◽

Supportive Care ◽

End Of Life ◽

Life Experience ◽

Model Of Care ◽

Advanced Illness ◽

Early Integration ◽

Global Consensus ◽

Strong Focus ◽

History Of

Definitional inconsistencies and confusion about core principles and practices have been part of the history of palliative care for more than five decades. The term ‘palliative care’ was first used to describe clinical services that had a singular focus on end of life care, particularly in the context of cancer; the ‘good death’ was its definitional touchstone. Modern use of the term ‘hospice’ predated this label and described services with the same intent, and ‘supportive care’, a term that emerged decades later, referenced elements that were comparable. Over time, the use of these labels evolved, and although global consensus has not yet been achieved, the development of palliative care as a clinical discipline has promoted greater agreement. Specialists increasingly favour the use of ‘palliative care’ to depict a multiprofessional model of care appropriate for all populations with potentially life-limiting chronic illnesses, the goal of which is to enhance the potential for a satisfactory quality of life and end of life experience by preventing or managing the suffering and illness burden of the patient and family. Around the world, specialists use both ‘palliative care’ and ‘hospice’ to describe programmes that advance the objectives of palliative care; ‘hospice’ is usually preferred when programmes serve those with advanced illness and short prognosis in a home-like environment. ‘Supportive care’ is generally applied to a parallel oncology-based model with a strong focus on problems related to cancer treatment. As specialist palliative care programmes are continuing to emerge globally, expansion of the model of care is occurring through early integration approaches that include the efforts of non-specialists. This chapter discusses the evolving perspectives on the definitions applied to palliative care and related terms, and the core principles and practices that have supported its global development.

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What are social work students being taught about palliative care?

Palliative & Supportive Care ◽

10.1017/s1478951518001049 ◽

2019 ◽

Vol 17 (5) ◽

pp. 536-541 ◽

Cited By ~ 1

Author(s):

Gary L. Stein ◽

Cathy Berkman ◽

Bonnie Pollak

Keyword(s):

Palliative Care ◽

Social Work ◽

Social Workers ◽

Advance Care Planning ◽

The United States ◽

Care Practice ◽

Care Planning ◽

Theory Approach ◽

Online Questionnaire ◽

Advance Care

AbstractObjectivePalliative social workers have taken steps to increase the numbers of social workers trained and competent to deliver effective psychosocial palliative care. Despite these developments, masters of social work (MSW) programs have only begun to develop curricula preparing students for entry-level practice. This study sought to determine the type and extent of content areas included in MSW courses dedicated to palliative care or with content related to palliative care practice.MethodA cross-sectional study using an online questionnaire was conducted. All 248 accredited MSW programs in the United States and 32 programs in Canada were invited to participate. Participants were asked to name the courses in their MSW program that were dedicated to, or included content on, palliative care, and submit the syllabi for these courses. Data comprised course content for each class session and required readings. A grounded theory approach was used to identify the topics covered.ResultOf the 105 participating programs that responded to the survey, 42 submitted 70 syllabi for courses with at least some palliative care content. There were 29 topics identified. The most common topic was grief, loss, and bereavement, followed closely by behavioral and mental health issues, and supporting family and friends; cultural perspectives and advance care planning were also common topics. For the 10 syllabi from courses dedicated to palliative care, supporting family was the most common topical area, followed closely by interprofessional practice and advance care planning.Significance of resultsAlthough there are many challenges to introducing palliative care content into MSW programs, including unqualified faculty and competing course material and electives of equally compelling content, there are model curricula for dedicated palliative care courses. With the large growth of palliative care programs, the time is ripe to add specialty palliative care courses and to add palliative care content into existing courses.

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Perceptions of Advance Care Planning Among Latino Adults in the Community Setting

Creative Nursing ◽

10.1891/1078-4535.22.2.106 ◽

2016 ◽

Vol 22 (2) ◽

pp. 106-113 ◽

Cited By ~ 1

Author(s):

Elizabeth McLean ◽

Leah Habicht ◽

Jane Foote

Keyword(s):

Decision Making ◽

Advance Care Planning ◽

Community Setting ◽

The United States ◽

Community Research ◽

Care Planning ◽

Competent Patient ◽

American Values ◽

Latino Community ◽

Advance Care

Rates of advance care planning (ACP) among Latinos are as low as 10% compared to an average of 26% among adults living in the United States. Typical American values of autonomy and self-determination that underlie ACP often conflict with the values of group decision-making, fatalism, and respect for hierarchy that influence decision making in the Latino community. Research suggests that community-based initiatives and culturally competent patient education improves rates of ACP in the Latino community. Findings discuss the use of culturally sensitive and linguistically appropriate ACP video education with Latinos in a metropolitan community setting, as well as recommendations for practice.

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Demenz aus palliativmedizinischer Perspektive: warum ein krankheitsspezifisches Advance Care Planning wichtig ist

Therapeutische Umschau ◽

10.1024/0040-5930/a000974 ◽

2018 ◽

Vol 75 (2) ◽

pp. 105-111 ◽

Cited By ~ 3

Author(s):

Ralf J. Jox ◽

Francesca Bosisio ◽

Eve Rubli Truchard

Keyword(s):

Palliative Care ◽

Advance Care Planning ◽

Care Planning ◽

Advance Care ◽

Menschen Mit Demenz

Zusammenfassung. Die Palliative Care muss sich im Zuge des demographischen Wandels vieler Gesellschaften rund um den Globus tiefgreifend wandeln. Sie muss mehr und mehr mit der Geriatrie zusammenarbeiten und geriatrische Expertise integrieren. Eine der zentralen Herausforderungen Geriatrischer Palliative Care ist die ethisch angemessene Therapieentscheidung für Menschen, die nicht mehr urteilsfähig sind. Nachdem der bisherige Ansatz herkömmlicher Patientenverfügungen erwiesenermassen enttäuscht hat, wird aktuell, gerade auch in deutschsprachigen Ländern, das systemische Konzept des Advance Care Planning (ACP) verfolgt. In diesem Artikel wird zunächst ACP mit seinen Zielen, Elementen und Effekten vorgestellt. Sodann wird gezeigt, weshalb es für Menschen mit Demenz eines adaptierten ACP-Programms bedarf und was ein solches demenzspezifisches ACP beinhalten muss.

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