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

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).

Patient autonomy and participation in end-of-life decision-making: An interpretive-systemic focus group study on perspectives of Asian healthcare professionals

2019 ◽  
Vol 18 (4) ◽  
pp. 425-430 ◽  
Author(s):  
Oindrila Dutta ◽  
Priya Lall ◽  
Paul Victor Patinadan ◽  
Josip Car ◽  
Chan Kee Low ◽  
...  
Keyword(s):  
Decision Making ◽  
End Of Life ◽  
Patient Autonomy ◽  
Healthcare Professionals ◽  
Program Effectiveness ◽  
Self Determination ◽  
Truth Telling ◽  
Focus Group Study ◽  
Eol Care ◽  
Care Decision

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.

scholarly journals PREPARATION FOR THE END OF LIFE AND PERCEIVED QUALITY OF CARE PRIOR TO HOSPICE REFERRAL: A SURVEY OF CAREGIVERS

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S910-S911
Author(s):  
Laura Prater ◽  
Phillip L Wachowiak ◽  
Masami Otsubo ◽  
Seuli Bose-Brill
Keyword(s):  
End Of Life ◽  
Perceived Quality ◽  
Bivariate Analysis ◽  
Scale Scores ◽  
Hospice Referral ◽  
Perceived Preparedness ◽  
Medical Emergencies ◽  
Poor Outcomes ◽  
Eol Care

Abstract Lack of preparation for the end of life (EOL) can lead to poor outcomes for caregivers. The purpose of this study was to learn if perceived quality of EOL care and communication provided by the primary clinician prior to hospice referral is associated with caregivers’ perceived preparedness to deal with medical emergencies/complications at the EOL. We conducted a survey of caregivers of patients who died and were referred to hospice in the prior year. Perceived quality, was measured by the Quality of End of Life Care (QEOLC) scale, and “preparedness” was a binary measure asking if caregivers felt unprepared to deal with medical emergencies and/or complications related to the care of the patient at the EOL. We performed a bivariate analysis using a two-sample t-test to determine if QEOLC scores were greater among those indicating they were prepared compared to those indicating they were not prepared. We received a response rate of over 22.8% (49/215). Mean EOL scale scores were 82.0 (SD=3.8) for those reporting that they did not feel unprepared for medical emergencies/compilations that arose near the EOL, and 68.2 (SD=7.3) for those who reported that they did feel unprepared. Results show that the mean difference approached significance (t=1.85; p=0.07). Although results only approached significance, EOL care from clinicians involved prior to hospice enrollment may be perceived as higher quality among those who felt prepared to handle emergencies/complications. This finding suggests that caregivers highly value early EOL education and communication aiding in preparation for emergencies/complications arising after hospice referral.

Association between perceptions of prognosis and end-of-life outcomes for patients with advanced lung and gastrointestinal cancer.

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. 6503-6503
Author(s):  
Carlisle E. W. Topping ◽  
Madeleine Elyze ◽  
Rachel Plotke ◽  
Lauren Heuer ◽  
Charu Vyas ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Gastrointestinal Cancer ◽  
Controlled Trial ◽  
Terminally Ill ◽  
Cancer Type ◽  
Linear Regression Models ◽  
Care Intervention ◽  
Eol Care ◽  
At Home

6503 Background: Many patients with advanced cancer maintain misperceptions of their prognosis and are thus unprepared to make difficult decisions regarding their end-of-life (EOL) care. However, studies examining the associations between patients’ perceptions of their prognosis and their EOL outcomes are limited. Methods: We conducted a secondary analysis using longitudinal data from a randomized controlled trial of a palliative care intervention for patients with newly diagnosed incurable lung and non-colorectal gastrointestinal cancer. We administered the Prognosis and Treatment Perceptions Questionnaire to assess patients’ perceptions of their prognosis at baseline, week-12, and week-24, using the final assessment closest to death. We used multivariate logistic and linear regression models, adjusting for age, gender, marital status, cancer type, and randomization to the palliative care intervention, to examine the associations among patients’ perceptions of their prognosis with the following EOL care outcomes abstracted from the electronic health record: 1) hospice utilization and length-of-stay (LOS); 2) hospitalizations in the last 30 days of life; 3) receipt of chemotherapy in the last 30 days of life; and 4) location of death. Results: We enrolled 350 patients in the parent trial, of which 80.5% (281/350) died during the study period and were included in this analysis. Overall, 59.4% (164/276) of patients reported that they were terminally ill, and 66.1% (154/233) reported that their cancer was likely curable at the assessment closest to death. In multivariate analyses, patients who reported that their cancer was likely curable were less likely to utilize hospice (OR = 0.25, 95%CI 0.10-0.61, P = 0.002) or die at home (OR = 0.56, 95%CI 0.32-0.98, P = 0.043), and more likely to be hospitalized in the last 30 days of life (OR = 2.28, 95%CI 1.20-4.32, P = 0.011). In contrast, patients’ report that they were terminally ill was only associated with lower likelihood of hospitalizations in the last 30 days of life (OR = 0.52, 95%CI 0.29-0.92, P = 0.025). Patients’ perceptions of their prognosis were not associated with hospice LOS or chemotherapy administration in the last 30 days of life. Conclusions: Patients’ perceptions of their prognosis are associated with important EOL outcomes including hospice utilization, hospitalizations at the EOL, and death at home. Interventions are needed to enhance patients’ perceptions of their prognosis in order to optimize their EOL care.

scholarly journals Caregiver evaluation of the quality of end-of-life care (CEQUEL) scale: The caregiver’s perception of patient care near death.

2013 ◽  
Vol 31 (15_suppl) ◽  
pp. 6573-6573
Author(s):  
Philip C Higgins ◽  
Holly Gwen Prigerson
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Convergent Validity ◽  
Risk Indicator ◽  
Life Care ◽  
Trauma Symptoms ◽  
Prospective Longitudinal Study ◽  
Eol Care ◽  
Prospective Longitudinal

6573 Background: End-of-life (EOL) measures are limited in capturing caregiver assessment of the quality of EOL care. None include caregiver perception of patient suffering and prolongation of death. We developed and validated the Caregiver Evaluation of Quality of End-of-Life Care (CEQUEL) scale, a more comprehensive measure of caregiver-perceived quality of EOL care. Methods: Data were derived from Coping with Cancer (CwC), a multisite, prospective, longitudinal study of advanced cancer patients and their caregivers (N=275 dyads). Caregivers were assessed before and after patient deaths. CEQUEL’s factor structure was examined; reliability was evaluated using Cronbach’s α, and convergent validity by the strength of associations between CEQUEL scores and key EOL outcomes. Results: Factor analysis revealed four distinct factors: Prolongation of Death, Perceived Suffering, Shared Decision-Making, and Preparation for the Death. Each item loaded strongly on only a single factor. The 13-item CEQUEL and its subscales showed moderate to acceptable Cronbach’s α (range: 0.52-0.78). 53% of caregivers reported patients suffering more than expected. Higher CEQUEL scores were positively associated with therapeutic alliance (r=.13; p≤.05) and hospice enrollment (z=-2.09; p≤.05), and negatively associated with bereaved caregiver regret (r=-.36, p≤.001) and trauma symptoms (z=-2.06; p≤.05). Conclusions: CEQUEL is a brief, valid measure of quality of EOL care from the caregiver’s perspective. It is the first scale to include perceived suffering and prolongation of death. If validated in future work, it may prove a useful quality indicator for the delivery of EOL care and a risk indicator for poor bereavement adjustment.

Chemotherapy at the end of life: Do we know when to stop?

2021 ◽  
Vol 39 (15_suppl) ◽  
pp. e24005-e24005
Author(s):  
Renana Barak ◽  
Einav Zagagi Yohay ◽  
Barliz Waissengrin ◽  
Ido Wolf
Keyword(s):  
End Of Life ◽  
Disease Duration ◽  
Performance Status ◽  
Poor Quality ◽  
Palliative Intent ◽  
Care Services ◽  
Palliative Care Services ◽  
Eol Care ◽  
Oncologic Treatment

e24005 Background: Aggressive end-of-life (EOL) care in cancer patients, especially the administration of chemotherapy, is considered a poor-quality measure, that may divert the treatment course from its' main palliative intent. Decisions taken at EOL are more than evidence-based and often rely on cultural and personal prospects. The universal and free Israeli health care system enables the administration of active treatment without financial or regulatory barriers, even at EOL. Two major advancements in recent years were the implementation of national at-home palliative care services and the approval of targeted and immunotherapies for advanced cancers. We hypothesized that these changes will reduce the use of chemotherapy at EOL. Methods: We sampled consecutive patients treated at a tertiary oncology center who died of advanced cancers between January 2019 to August 2020, and examined the administration of oncologic treatments near EOL. Results: A total of 294 patients were included. Their median age was 67 and 147 were men, 64% (189) of the patients received oncologic treatment during the last month before death, chemotherapy was administered in nearly two-thirds of the cases, 64% (121), followed by immunotherapy (21%, 40), targeted therapy (10%, 19) and a clinical trial (5%, 9). Neither age (P = 0.4), gender (P = 0.9), performance status (P = 0.8), disease duration (P = 0.5), and type of previous oncologic treatment (P = 0.3) were associated with aggressive EOL care. Conclusions: Our data demonstrate that in the absence of any regulatory or financial limitations, an aggressive EOL care may be administered to the majority of patients, regardless of age, performance status or disease duration. Despite increasing use of immunotherapy and targeted therapies and despite its’ toxicity profile and low beneficial effect at this stage, chemotherapy remained the most commonly used type of treatment. These data call for the implementation of educational measures and appropriate universal guidelines, aiming at improving quality of treatment at the EOL, focusing on quality of life rather than the elusive potential of extending life.

Call the Rezadora: Aiding Latino Families at the End of Life

2021 ◽  
pp. 154041532110289
Author(s):  
Kim L. Larson ◽  
Graziella D. Jewell ◽  
Maria Fernanda Maldonado ◽  
Morgan E. Braxton ◽  
Lee Ann Johnson
Keyword(s):  
End Of Life ◽  
Single Case ◽  
The United States ◽  
Latino Families ◽  
Holistic View ◽  
Serious Illness ◽  
Care Services ◽  
Palliative Care Teams ◽  
Eol Care

Introduction: The rezadora, a lay spiritual leader, provides support to Latino families as they provide end-of-life (EOL) care for loved ones. The purpose of this study was to learn about the work of the rezadora in Guatemala as a resource for Latinos with serious illness in the United States. Methods: An ethnographic exploratory case study was conducted during summer 2018 in rural Guatemala. We interviewed three rezadoras who resided in two villages. The study yielded two cases, the single case and the paired case, which allowed for a holistic view of how the rezadora serves the community. Results: Content and thematic analysis led to two themes: Essence of being called and Power of prayerful song. Essence of being called was represented by the prominence of the rezadora and their perpetual faith work. Power of prayerful song was characterized through the mission, customs, and the presence of the rezadora. A good death was aided by the rezadora in this context. Conclusions: As the Latino population ages in place, the need for palliative and EOL care services will increase. Lay spiritual leaders could enhance the palliative care teams in these communities and improve the quality of life for Latinos with serious illness.

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