The Caregivers Like Me Telenovela Was Non-Inferior to the Chasing the Tiger Video in Educating Healthcare Professionals About End-of-Life (EOL) Care in Ethnically Diverse Populations (S742)

AbstractObjectivesAsia's first national advance care planning (ACP) program was established in Singapore in 2011 to enhance patient autonomy and self-determination in end-of-life (EoL) care decision-making. However, no known study has examined the extent to which ACP in Singapore successfully met its aims. The purpose of the current study was to examine the attitudes of local healthcare professionals on patients’ autonomy in decision-making at the EoL since they strongly influence the extent to which patient and family wishes are fulfilled.MethodsGuided by the Interpretive-Systemic Framework and Proctor's conceptual taxonomy of implementation research outcomes, an interview guide was developed. Inquiries focused on healthcare professionals’ attitudes towards ACP, their clinical experiences working with patients and families, and their views on program effectiveness. Sixty-three physicians, nurses, medical social workers, and designated ACP coordinators who were actively engaged in ACP facilitation were recruited from seven major hospitals and specialist centers in Singapore through purposive sampling. Twelve interpretive-systemic focus groups were conducted, recorded, transcribed, and analyzed using a thematic analysis.ResultsThe extent to which patients in Singapore can exert autonomy in EoL care decision-making is influenced by five themes: (i) collusion over truth-telling to patient, (ii) deferment of autonomy by patients, (iii) negotiating patient self-determination, (iv) relational autonomy as the gold standard and (v) barriers to realization of patient choices.Significance of resultsHealthcare practitioners in Asian communities must align themselves with the values and needs of patients and their family and jointly make decisions that are consistent and congruent with the values of patients and their families. Sensitivity towards such cross-cultural practices is key to enhancing ACP awareness, discourse, and acceptability in Asian communities.

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124 Perceived Quality of End-Of-Life Communication Provided by Healthcare Professionals Among Frail Older Chinese Patients

Age and Ageing ◽

10.1093/ageing/afab030.85 ◽

2021 ◽

Vol 50 (Supplement_1) ◽

pp. i12-i42

Author(s):

D Y P Leung ◽

Z Wan ◽

H Y L Chan ◽

P K C Chiu ◽

R S K Lo ◽

...

Keyword(s):

Decision Making ◽

End Of Life ◽

Formal Education ◽

Healthcare Professionals ◽

Controlled Trial ◽

Perceived Quality ◽

Chinese Patients ◽

Older Chinese ◽

Eol Care

Abstract Introduction Better communications among the patient, their family, and healthcare providers can enable a shared understanding on patient’s end-of-life (EOL) care preferences. Discussion about death-related issue however has been thought to be taboo among Chinese people. This study aims to explore perceived quality of EOL communication provided by healthcare professionals (HCPs) among frail older Chinese patients. Method Frail older patients were recruited from a medical ward of a public hospital for a randomized controlled trial of the effectiveness of a nurse-led advance care planning. Participants completed a baseline questionnaire including the 7-item Quality of Communication (QOC) Questionnaire which measures perceived quality of EOL communication provided by HCPs (0 “The worst or none happened” to 10 “The best”). Bivariate analyses examined associated factors of QOC. Results Between December 2018 and January 2020, 105 participants were recruited and have completed the QOC. Their mean age was 80 years old (SD = 7.1), and 74% (n = 78) reported had received some formal education. A total of 95 participants (91%) responded “0” to all the 7 items in QOC (poor QOC group). For individual QOC item, all participants scored “0” in 4 items, 99 scored “0” in Item 1 “Talking about details if you got sicker”, 104 scored “0” in Item 2 “Talking about how long you might have to live”, and 101 scored “0” in Item 7 “Respecting your spiritual or religious beliefs”. Participants with “0” score in QOC reported a significant lower mean level in certainty regarding decision-making in EOL preferences (1.2 ± 1.6 vs. 2.3 ± 1.8, p = 0.039). Conclusion Occurrence of talking about EOL care with frail older Chinese patients by HCPs was rare, and the quality of EOL communication associated with decision-making certainty regarding EOL preferences. Training of initiation of EOL discussions and improve communication skills for HCPs is essential. Funding: RGC, HKSAR, China (PolyU14162617H).

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‘Nosce te ipsum’: An Italian national survey to explore choice's differences in End of Life (EoL) care between healthcare professionals and general public

Applied Nursing Research ◽

10.1016/j.apnr.2019.01.001 ◽

2019 ◽

Vol 46 ◽

pp. 8-15 ◽

Cited By ~ 2

Author(s):

Rosario Caruso ◽

Gennaro Rocco ◽

Federica Dellafiore ◽

Gloria Brognoli ◽

Arianna Magon ◽

...

Keyword(s):

End Of Life ◽

National Survey ◽

General Public ◽

Healthcare Professionals ◽

Eol Care

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Faculty Opinions recommendation of Novel susceptibility variants at 10p12.31-12.2 for childhood acute lymphoblastic leukemia in ethnically diverse populations.

Faculty Opinions – Post-Publication Peer Review of the Biomedical Literature ◽

10.3410/f.717990852.793495873 ◽

2014 ◽

Author(s):

Jacob Rowe ◽

Tsila Zuckerman

Keyword(s):

Acute Lymphoblastic Leukemia ◽

Lymphoblastic Leukemia ◽

Ethnically Diverse ◽

Childhood Acute Lymphoblastic Leukemia ◽

Diverse Populations

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A descriptive analysis of end-of-life discussions for high-grade glioma patients

Neuro-Oncology Practice ◽

10.1093/nop/npab010 ◽

2021 ◽

Author(s):

Ai Chikada ◽

Sayaka Takenouchi ◽

Yoshiki Arakawa ◽

Kazuko Nin

Keyword(s):

End Of Life ◽

Health Care Providers ◽

Patient Participation ◽

High Grade Glioma ◽

Team Approach ◽

High Grade ◽

Care Providers ◽

Patient Goals ◽

Significant Difference ◽

Eol Care

Abstract Background End-of-life discussions (EOLDs) in patients with high-grade glioma (HGG) have not been well described. Therefore, this study examined the appropriateness of timing and the extent of patient involvement in EOLDs and their impact on HGG patients. Methods A cross-sectional survey was conducted among 105 bereaved families of HGG patients at a university hospital in Japan between July and August 2019. Fisher’s exact test and the Wilcoxon rank-sum test were used to assess the association between patient participation in EOLDs and their outcomes. Results In total, 77 questionnaires were returned (response rate 73%), of which 20 respondents replied with refusal documents. Overall, 31/57 (54%) participated in EOLDs at least once in acute hospital settings, and a significant difference was observed between participating and nonparticipating groups in communicating the patient’s wishes for EOL care to the family (48% vs 8%, P = .001). Moreover, >80% of respondents indicated that the initiation of EOLDs during the early diagnosis period with patients and families was appropriate. Most EOLDs were provided by neurosurgeons (96%), and other health care providers rarely participated. Additionally, patient goals and priorities were discussed in only 28% of the EOLDs. Patient participation in EOLDs was not associated with the quality of EOL care and a good death. Conclusions Although participation in EOLDs is relatively challenging for HGG patients, this study showed that participation in EOLDs may enable patients to express their wishes regarding EOL care. It is important to initiate EOLDs early on through an interdisciplinary team approach while respecting patient goals and priorities.

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End-of-Life Needs of Dying Patients and Their Families in Mainland China: A Systematic Review

OMEGA - Journal of Death and Dying ◽

10.1177/0030222821997340 ◽

2021 ◽

pp. 003022282199734

Author(s):

Guobin Cheng ◽

Chuqian Chen

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Healthcare Professionals ◽

Web Of Science ◽

Empirical Studies ◽

Symptom Control ◽

Mainland China ◽

Spiritual Needs ◽

Care Needs ◽

Dying Patients

Objective To map the current research status and understand existing findings regarding end-of-life care needs in Mainland China. Method First-hand, empirical studies on the needs of dying patients and/or their families in Mainland China were searched in Web of Science, Scopus, Proquest, Taylor & Francis Online and CNKI in December 2019. Findings were synthesized. Results A total of 33 (10 qualitative) studies were involved. Chinese dying patients and their families had physical, psychological, social, and spiritual needs and needs for knowledge and information. Prevalent needs of dying patients were mainly symptom control and decent look, being treated kindly by professional caregivers, family accompany, dignity, and comfortable environment. Families mainly need healthcare professionals to take good care of patients and wishes for information, knowledge, and facilities to help themselves become better caregivers. Conclusions Findings lay the foundation for effective and tailored services for Chinese clients and provided insights for future investigations.

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End of life breast cancer care in women with severe mental illnesses

Scientific Reports ◽

10.1038/s41598-021-89726-y ◽

2021 ◽

Vol 11 (1) ◽

Author(s):

Guillaume Fond ◽

Vanessa Pauly ◽

Audrey Duba ◽

Sebastien Salas ◽

Marie Viprey ◽

...

Keyword(s):

Breast Cancer ◽

Palliative Care ◽

Health Disparities ◽

Major Depression ◽

End Of Life ◽

High Intensity ◽

Bipolar Disorders ◽

Mental Illnesses ◽

Targeted Interventions ◽

Eol Care

AbstractLittle is known on the end-of-life (EOL) care of terminal breast cancer in women with severe psychiatric disorder (SPD). The objective was to determine if women with SPD and terminal breast cancer received the same palliative and high-intensity care during their end-of-life than women without SPD. Study design, setting, participants. This population-based cohort study included all women aged 15 and older who died from breast cancer in hospitals in France (2014–2018). Key measurements/outcomes. Indicators of palliative care and high-intensity EOL care. Multivariable models were performed, adjusted for age at death, year of death, social deprivation, duration between cancer diagnosis and death, metastases, comorbidity, smoking addiction and hospital category. The analysis included 1742 women with SPD (287 with bipolar disorder, 1075 with major depression and 380 with schizophrenia) and 36,870 women without SPD. In multivariate analyses, women with SPD had more palliative care (adjusted odd ratio aOR 1.320, 95%CI [1.153–1.511], p < 0.001), longer palliative care follow-up before death (adjusted beta = 1.456, 95%CI (1.357–1.555), p < 0.001), less chemotherapy, surgery, imaging/endoscopy, and admission in emergency department and intensive care unit. Among women with SPD, women with bipolar disorders and schizophrenia died 5 years younger than those with recurrent major depression. The survival time was also shortened in women with schizophrenia. Despite more palliative care and less high-intensity care in women with SPD, our findings also suggest the existence of health disparities in women with bipolar disorders and schizophrenia compared to women with recurrent major depression and without SPD. Targeted interventions may be needed for women with bipolar disorders and schizophrenia to prevent these health disparities.

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Ethical considerations at the end-of-life care

SAGE Open Medicine ◽

10.1177/20503121211000918 ◽

2021 ◽

Vol 9 ◽

pp. 205031212110009

Author(s):

Melahat Akdeniz ◽

Bülent Yardımcı ◽

Ethem Kavukcu

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Assisted Suicide ◽

Healthcare Professionals ◽

Ethical Decision Making ◽

Biomedical Ethics ◽

Artificial Nutrition ◽

Life Care ◽

Ethical Challenges ◽

Physician Assisted Suicide

The goal of end-of-life care for dying patients is to prevent or relieve suffering as much as possible while respecting the patients’ desires. However, physicians face many ethical challenges in end-of-life care. Since the decisions to be made may concern patients’ family members and society as well as the patients, it is important to protect the rights, dignity, and vigor of all parties involved in the clinical ethical decision-making process. Understanding the principles underlying biomedical ethics is important for physicians to solve the problems they face in end-of-life care. The main situations that create ethical difficulties for healthcare professionals are the decisions regarding resuscitation, mechanical ventilation, artificial nutrition and hydration, terminal sedation, withholding and withdrawing treatments, euthanasia, and physician-assisted suicide. Five ethical principles guide healthcare professionals in the management of these situations.

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Discussions Between People With Dementia and Care Partners About End-of-Life Care Planning

Innovation in Aging ◽

10.1093/geroni/igaa057.526 ◽

2020 ◽

Vol 4 (Supplement_1) ◽

pp. 162-162

Author(s):

Megan Shepherd-Banigan ◽

Cassie Ford ◽

Emmanuelle Belanger ◽

Courtney Van Houtven

Keyword(s):

End Of Life ◽

Linear Models ◽

Positive Association ◽

Living Will ◽

Amyloid Pet ◽

Care Planning ◽

Care Plans ◽

People With Dementia ◽

Care Partners ◽

Eol Care

Abstract Advanced care planning (ACP) leads to better end-of-life (EoL) care. Yet, some care-partners are unaware of the person with dementia’s (PwD) preferences. Care-partners play an important role in urging PwD to consider their EoL care wishes early in their disease course and to document those wishes. However, it is unknown whether discussions between care-partners and PwD are associated with documenting EoL care plans. We apply generalized linear models to baseline data from the CARE-IDEAS study which includes a sample of patients who received an amyloid PET scan and their care-partners (n=1,672). We examine the association between PwD report of having discussed EoL care with their care-partner and PwD report of having documented their plans through an advanced directive, a living will, or designating a health care proxy. PwD who reported speaking with their care-partners about EoL care were 10% (marginal probability (MP) 0.10; 95% CI: 0.8, 0.13) more likely to have documented their EoL care wishes. Furthermore, if PwD and care-partners agreed that they had discussed EoL care, PwD were 7% (MP 0.7; 95% CI 0.04, 0.10) more likely to report that they documented their EoL care plans. The positive association between communicating with care-partners about EoL care and having formal EoL care plans suggests that the ACP process could be a systematic approach to increase the care-partner’s knowledge of PwD EoL wishes. These results also suggest that increasing involvement of care partners in ACP may encourage patients to document their wishes at end of life.

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Combining paid work and family care for a patient at the end of life at home: insights from a qualitative study among caregivers in the Netherlands

BMC Palliative Care ◽

10.1186/s12904-021-00780-9 ◽

2021 ◽

Vol 20 (1) ◽

Author(s):

Femmy M. Bijnsdorp ◽

Bregje D. Onwuteaka-Philipsen ◽

Cécile R.L. Boot ◽

Allard J. van der Beek ◽

Hanna T. Klop ◽

...

Keyword(s):

End Of Life ◽

Family Caregivers ◽

Healthcare Professionals ◽

Family Care ◽

Work And Family ◽

Similar Process ◽

Paid Work ◽

Health And Wellbeing ◽

Care Situation ◽

At Home

Abstract Background Population ageing, an emphasis on home-based care of palliative patients and policies aimed at prolonging participation in the labour market are placing a growing demand on working family caregivers. This study aimed to provide insight into experiences with combining paid work and family care for patients at the end of life, factors facilitating and hindering this combination, and support needs. Method Semi-structured interviews were held between July 2018 and July 2019 with 18 working family caregivers of patients with a life-threatening illness who were living at home. Transcripts were analysed following the principles of thematic analysis. Results Some family caregivers could combine paid work and family care successfully, while this combination was burdensome for others. Family caregivers generally experienced a similar process in which four domains — caregiver characteristics, the care situation, the work situation and the context — influenced their experiences, feelings and needs regarding either the combination of paid work and care or the care situation in itself. In turn, experiences, feelings and needs sometimes affected health and wellbeing, or prompted caregivers to take actions or strategies to improve the situation. Changes in health and wellbeing could affect the situation in the four domains. Good health, flexibility and support at work, support from healthcare professionals and sharing care tasks were important in helping balance work and care responsibilities. Some caregivers felt ‘sandwiched’ between work and care and reported physical or mental health complaints. Conclusions Experiences with combining paid work and family care at the end of life are diverse and depend on several factors. If too many factors are out of balance, family caregivers experience stress and this impacts their health and wellbeing. Family caregivers could be better supported in this by healthcare professionals, employers and local authorities.

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