Cancer versus non-cancer caregivers: An analysis of communication needs from the 2015 Caregivers in the U.S. study.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 4-4 ◽  
Author(s):  
Erin E. Kent ◽  
Margaret Longacre ◽  
Lisa Weber-Raley ◽  
C. Grace Whiting ◽  
Gail Hunt
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Statistical Significance ◽  
Panel Study ◽  
Healthcare Providers ◽  
Care Recipient ◽  
Life Care ◽  
Cancer Caregivers ◽  
Nationally Representative ◽  
The U.S

4 Background: Informal caregiving for cancer patients can be both demanding and burdensome – physically, emotionally, and financially – for many caregivers. Cancer caregivers play a large role in advocating for and administering care for their recipients. The current study aimed to explore if cancer caregivers differ from non-cancer caregivers with regard to communicating with healthcare providers, and need for information about end-of-life care. Methods: Data were used from the 2015 Caregiving in the U.S. (CGUS) dataset, a nationally-representative online probability-based panel study of unpaid adult caregivers. The analysis compared cancer and non-cancer caregivers to determine similarities and differences in characteristics and experiences, with a focus on unmet needs in communication with healthcare providers and end-of-life decision-making. Statistical significance was determined at the p < 0.05 level. Results: Approximately 7% (2.8 million) of caregiver participants in the CGUS study indicate cancer as the primary reason for providing care. Cancer caregivers report higher burden than non-cancer caregivers (62% vs. 38%) and significantly more hours per week caregiving (32.9 vs. 23.9 hours per week). Significantly more cancer caregivers indicate interacting with key providers, agencies, and professionals on behalf of their care recipients: 82% report communicating with healthcare professionals (vs. 62%), 76% monitor/adjust care (vs. 66%), and 62% report advocating for care recipient (vs. 49%). Finally, almost twice the number of cancer caregivers than non-cancer caregivers (40% vs. 21%) report needing more help/information with making end-of-life decisions. Conclusions: These findings indicate the burdensome and demanding role of cancer caregiving. These caregivers play a substantial role in directing, monitoring, and advocating for survivor care. Yet, many need more information about end-of-life care. This suggests a gap in preparation despite the roles provided, and suggest a need to explore strategies to engage patient-provider-caregiver communication about care, particularly end of life care.

scholarly journals A Discourse Analysis: One Caregiver’s Voice in End-of-Life Care

2017 ◽  
Vol 28 (3) ◽  
pp. 346-356 ◽  
Author(s):  
Erin Kitt-Lewis ◽  
Susan Strauss ◽  
Janice Penrod
Keyword(s):  
Discourse Analysis ◽  
End Of Life ◽  
End Of Life Care ◽  
Significant Contribution ◽  
Care Recipient ◽  
Life Care ◽  
Viable Approach ◽  
Essential Knowledge ◽  
The Mind ◽  
The U.S

Informal family caregivers make a significant contribution to the U.S. health care system, and the need for caregivers will likely increase. Gaining deeper insights into the caregiver experience will provide essential knowledge needed to support the future caregiver workforce delivering care. Discourse analysis is a viable approach in analyzing textual caregiver data that focuses on the end-of-life caregiving experience. The purpose of this study was to conduct an in-depth discourse analytic examination of 13 hours of caregiver interview data, which reveal the multiplicity of shifting stances and perceptions of one caregiver in the midst of end-of-life care, specifically with regard to his perceptions of self (caregiver) and other (care recipient). By isolating a specific but limited set of reference terms used throughout the discourse, we gained systematic glimpses into the mind and perceptions of this single caregiver in relation to his role as caregiver for his terminally ill wife.

“Is there no Balm in Gilead?”: Health, Illness, Death, and Dying in the Hebrew Bible and Today

2021 ◽  
Vol 75 (3) ◽  
pp. 196-206
Author(s):  
Joel S. Kaminsky
Keyword(s):  
End Of Life ◽  
Hebrew Bible ◽  
End Of Life Care ◽  
Death And Dying ◽  
Life Care ◽  
The U.S ◽  
Conceptual Resources

This essay argues that the Hebrew Bible contains conceptual resources that can contribute to and enrich the ongoing discussions surrounding healthcare in the U.S. and in other modern Western societies. These biblical ideas may help us reframe our understandings of sickness and health, something urgently needed if we wish individuals and their families to have less medically invasive and less alienating experiences of illness, most especially during end of life care.

scholarly journals Preferences for Advance Directives in Korea

2012 ◽  
Vol 2012 ◽  
pp. 1-7 ◽  
Author(s):  
So-Sun Kim ◽  
Won-Hee Lee ◽  
JooYoung Cheon ◽  
Jung-Eun Lee ◽  
KiSun Yeo ◽  
...  
Keyword(s):  
End Of Life ◽  
Advance Directives ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
Tube Feeding ◽  
Life Care ◽  
Cross Sectional Survey ◽  
Cross Sectional ◽  
Korean People ◽  
End Stage

Background. The goal of advance directives is to help patients retain their dignity and autonomy by making their own decisions regarding end-stage medical treatment. The purpose of this study was to examine preferences of advance directives among general population in Korea.Method. A descriptive cross-sectional survey was performed from October 2007 to June 2008 in Seoul, Korea. A total of 336 city-dwelling adults self-administered the questionnaire and returned it via mail. Data analyses were conducted using SPSS 17.0.Results. Subjects reported the need for healthcare providers' detailed explanations and recommendations regarding end-of-life care. When there is no hope of recovery and death is imminent, most subjects did not want to receive cardiopulmonary resuscitation nor an IV or tube feeding. However, most of the subjects wanted pain management care.Conclusions. The present study showed that many Korean people have an interest in advance directives. The results show that the autonomy and dignity of patient have increased in importance. To provide better end-of-life care, there is a need to educate patients on the definition and intent of an advance directive. Additional proactive communication between patients and their caregivers should be educated to healthcare providers.

Utilizing Watson’s Theory of Human Caring and Hills and Watson’s Emancipatory Pedagogy to Educate Hospital-Based Multidisciplinary Healthcare Providers About Hospice

2012 ◽  
Vol 16 (4) ◽  
pp. 42-49 ◽  
Author(s):  
Alyx Iversen, ◽  
Loralee Sessanna,
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
Life Care ◽  
Care Needs ◽  
Theoretical Frameworks ◽  
Emancipatory Pedagogy ◽  
Hospice Referral ◽  
Theory Of Human Caring ◽  
Human Caring

Hospice offers holistic human caring that embraces every individual as a unique physical, mental, emotional, social, and spiritual entity. To holistically address and fulfill end-of-life care needs, wishes, and preferences for terminally ill patients and their families, early healthcare provider referral to hospice is crucial. Utilizing Watson’s (2012a) theory of human caring and Hills and Watson’s (2011) emancipatory pedagogy for nursing as theoretical frameworks, this article proposes an approach to educating multidisciplinary healthcare providers on the importance of and need for early hospice referral to promote quality holistic, meaningful, respectful, dignified, and compassionate end-of-life care.

scholarly journals Developing the methods and questionnaire (VOICES-SF) for a national retrospective mortality follow-back survey of palliative and end-of-life care in England

2017 ◽  
Vol 9 (1) ◽  
pp. e5-e5 ◽  
Author(s):  
Katherine J Hunt ◽  
Alison Richardson ◽  
Anne-Sophie E Darlington ◽  
Julia M Addington-Hall
Keyword(s):  
End Of Life ◽  
National Survey ◽  
Service Provision ◽  
End Of Life Care ◽  
Short Form ◽  
Life Care ◽  
National Statistics ◽  
Nationally Representative ◽  
Informal Carers ◽  
First Time

The National Survey of Bereaved People was conducted by the Office for National Statistics on behalf of NHS England for the first time in 2011, and repeated annually thereafter. It is thought to be the first time that nationally representative data have been collected annually on the experiences of all people who have died, regardless of cause and setting, and made publicly available informing palliative and end-of-life policy, service provision and development, and practice. This paper describes the development of the questionnaire used in the survey, VOICES-SF, a short-form of the VOICES (Views Of Informal Carers—Evaluation of Services) questionnaire, adapted specifically to address the aims of the national survey. The pilot study to refine methods for the national survey is also described. The paper also reports on the development of the retrospective, after-death or mortality follow-back method in palliative and end-of-life care, and reviews its strengths and weaknesses.

scholarly journals Nature and Intensity of Pediatric Inpatient End-of-Life Care in the U.S. (415-B)

2012 ◽  
Vol 43 (2) ◽  
pp. 382-383
Author(s):  
Chris Feudtner ◽  
Tammy Kang ◽  
Wynne Morrison ◽  
Richard Aplenc ◽  
Abbas Jawad ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Pediatric Inpatient ◽  
The U.S

scholarly journals Do young adults see value in advance directives?

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 850-850
Author(s):  
Yuchi Young ◽  
Arianna Stone ◽  
Taylor Perre ◽  
Kuo-Piao Chung ◽  
Ya-Mei Chen
Keyword(s):  
New York ◽  
Young Adults ◽  
End Of Life ◽  
End Of Life Care ◽  
New York State ◽  
Healthcare Providers ◽  
Population Based ◽  
Life Care ◽  
Study Results ◽  
Attitude Toward Ads

Abstract Many Americans avoid end-of-life care planning; only 26% have completed an advance directive (AD). An AD promotes end-of-life care with dignity allowing individuals to make end-of-life treatment and care decisions before they are unable to do so. Previous studies related to ADs are focused on older adults with serious illness or people with functional/mental disability. The objective of this survey is to better understand young adults' knowledge of and attitude toward ADs and their preferences for ADs related to treatment and care options. Methods. Participants include graduate students (n=25) attending a state university in New York State (NYS). Data were collected using two ADs (Five Wishes; Medical Orders for Life-Sustaining Treatment (MOLST)) and one survey questionnaire. Summary statistics and multivariate models will be used to address the study aims. Results. Preliminary results show the average age was 23 years, 72% were female, 48% White, and 44% Black. The majority of young adults hadn’t completed an AD; however, their attitude toward ADs was positive; the majority believe it is important to have an AD prepared at their current age; and they believe young adults would willing to fill out ADs. Young adults can make difficult treatment and care decisions when the situation requires it. Conclusion. The study findings can be useful to policy makers, healthcare providers and other stakeholders in promoting population-based healthcare decision-making. Limitation. Participants were recruited from one university in NYS; thus, the study results may be generalized to a population sharing similar characteristics.

Caring for Dying Infants: A Systematic Review of Healthcare Providers’ Perspectives of Neonatal Palliative Care

2020 ◽  
pp. 104990912096594
Author(s):  
Susanny J. Beltran ◽  
Marie Nicole Hamel
Keyword(s):  
United States ◽  
End Of Life ◽  
Nurse Practitioners ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
The United States ◽  
Future Research ◽  
Care Practice ◽  
Life Care ◽  
Provider Perspectives

Objectives: The palliative and hospice care movement has expanded significantly in the United States since the 1960s. Neonatal end of life care, in particular, is a developing area of practice requiring healthcare providers to support terminally ill newborns and their families, to minimize suffering at the end of the neonate’s life. This paper seeks to systematically summarize healthcare providers’ perspectives related to end of life, in order to identify needs and inform future directions. Methods: Informed by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines, we systematically reviewed the literature discussing healthcare provider perspectives of neonatal end of life care ranging from year 2009 to 2020. To be included in the review, articles had to explicitly focus on perspectives of healthcare providers toward neonatal end of life care, be published in academic peer-reviewed sources, and focus on care in the United States. Results: Thirty-three articles were identified meeting all inclusion criteria. The literature covers, broadly, provider personal attitudes, experiences delivering care, practice approaches and barriers, and education and training needs. The experiences of physicians, physician assistants, nurse practitioners, and nurses are highlighted, while less is discussed of other providers involved with this work (e.g., social work, physical therapy). Conclusion: Future research should focus on developing and testing interventions aimed at training and supporting healthcare providers working with neonates at end of life, as well as addressing barriers to the development and implementation of neonatal palliative teams and guidelines across institutions.

Care Considerations in a Patient- and Family-Centered Medical Assistance in Dying Program

2020 ◽  
pp. 082585972095166
Author(s):  
Janine Brown ◽  
Donna Goodridge ◽  
Averi Harrison ◽  
Jordan Kemp ◽  
Lilian Thorpe ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Healthcare Providers ◽  
Anticipatory Guidance ◽  
Interdisciplinary Care ◽  
Life Care ◽  
Care Providers ◽  
Medical Assistance ◽  
Medical Assistance In Dying ◽  
Family Centered

Background: Medical Assistance in Dying (MAID) became legal in Canada in June 2016. As part of a project designed to improve end-of-life care for those requesting MAID, qualitative data from patients, families, and providers were used to assess opportunities to enhance patient-and family-centered care (PFCC) in this program. Methods: Thirty interviews were conducted with patients, families, and healthcare providers. Five patients who requested an assessment for MAID, 11 family members, and 14 healthcare providers were interviewed about their experiences in 2017. Comparative coding and thematic analysis were completed with the support of NVivo12. Results: Emotional PFCC considerations included: exploring and validating the emotional journey, navigating the uncertain, judgmental experiences, and the emotional impact on families and the care team. Physical PFCC considerations included: sensitivity in eligibility assessments, weaving in interdisciplinary care, provision of anticipatory guidance, and death location. Spiritual PFCC considerations included: honoring choice, listening to life stories, supporting spiritual needs, and acknowledging loss. Relational PFCC considerations included: defining the circle of support, supporting the circle, and relational investments. Conclusion: Fundamental to a PFCC MAID program, practitioners must be afforded time to provide holistic care. Program-related suggestions include incorporating interdisciplinary care early, and throughout the illness trajectory, consistency in care providers, appropriate anticipatory guidance, and bereavement supports for family, and dedicate space for MAID provisions. Patients and families must be included in the ongoing development and re-evaluation of MAID programs to ensure continued focus on quality end-of-life care.

Occupational Variation in End-of-Life Care Intensity

2017 ◽  
Vol 35 (3) ◽  
pp. 377-383
Author(s):  
Joseph A. Hyder ◽  
R. Sterling Haring ◽  
Daniel Sturgeon ◽  
Priscilla K. Gazarian ◽  
Wei Jiang ◽  
...  
Keyword(s):  
General Population ◽  
End Of Life ◽  
Sex Education ◽  
End Of Life Care ◽  
Statistical Significance ◽  
Work Place ◽  
Hospital Death ◽  
Life Care ◽  
Hospital Referral ◽  
Eol Care

Background: End-of-life (EOL) care intensity is known to vary by secular and geographic patterns. US physicians receive less aggressive EOL care than the general population, presumably the result of preferences shaped by work-place experience with EOL care. Objective: We investigated occupation as a source of variation in EOL care intensity. Methods: Across 4 states, we identified 660 599, nonhealth maintenance organization Medicare beneficiaries aged ≥66 years who died between 2004 and 2011. Linking death certificates, we identified beneficiaries with prespecified occupations: nurses, farmers, clergy, mortuary workers, homemakers, first-responders, veterinary workers, teachers, accountants, and the general population. End-of-life care intensity over the last 6 months of life was assessed using 5 validated measures: (1) Medicare expenditures, rates of (2) hospice, (3) surgery, (4) intensive care, and (5) in-hospital death. Results: Occupation was a source of large variation in EOL care intensity across all measures, before and after adjustment for sex, education, age-adjusted Charlson Comorbidity Index, race/ethnicity, and hospital referral region. For example, absolute and relative adjusted differences in expenditures were US$9991 and 42% of population mean expenditure ( P < .001 for both). Compared to the general population on the 5 EOL care intensity measures, teachers (5 of 5), homemakers (4 of 5), farmers (4 of 5), and clergy (3 of 5) demonstrated significantly less aggressive care. Mortuary workers had lower EOL care intensity (4 of 5) but small numbers limited statistical significance. Conclusion: Occupations with likely exposure to child development, death/bereavement, and naturalistic influences demonstrated lower EOL care intensity. These findings may inform patients and clinicians navigating choices around individual EOL care preferences.

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