scholarly journals Evaluation of the Quality of Dying and Death Questionnaire in Kenya

2019 ◽  
pp. 1-16
Author(s):  
Kenneth Mah ◽  
Richard A. Powell ◽  
Carmine Malfitano ◽  
Nancy Gikaara ◽  
Lesley Chalklin ◽  
...  
Keyword(s):  
Palliative Care ◽  
Advanced Cancer ◽  
Assessment Tools ◽  
Treatment Preferences ◽  
Culturally Appropriate ◽  
Patient Centered ◽  
P Values ◽  
Quality Of Dying ◽  
Cancer Sample

PURPOSE A culturally appropriate, patient-centered measure of the quality of dying and death is needed to advance palliative care in Africa. We therefore evaluated the Quality of Dying and Death Questionnaire (QODD) in a Kenyan hospice sample and compared item ratings with those from a Canadian advanced-cancer sample. METHODS Caregivers of deceased patients from three Kenyan hospices completed the QODD. Their QODD item ratings were compared with those from 602 caregivers of deceased patients with advanced cancer in Ontario, Canada, and were correlated with overall quality of dying and death ratings. RESULTS Compared with the Ontario sample, outcomes in the Kenyan sample (N = 127; mean age, 48.21 years; standard deviation, 13.57 years) were worse on 14 QODD concerns and on overall quality of dying and death ( P values ≤ .001) but better on five concerns, including interpersonal and religious/spiritual concerns ( P values ≤ .005). Overall quality of dying was associated with better patient experiences with Symptoms and Personal Care, interpersonal, and religious/spiritual concerns ( P values < .01). Preparation for Death, Treatment Preferences, and Moment of Death items showed the most omitted ratings. CONCLUSION The quality of dying and death in Kenya is worse than in a setting with greater PC access, except in interpersonal and religious/spiritual domains. Cultural differences in perceptions of a good death and the acceptability of death-related discussions may affect ratings on the QODD. This measure requires revision and validation for use in African settings, but evidence from such patient-centered assessment tools can advance palliative care in this region.

The Quality of Dying and Death of Advanced Cancer Patients in Palliative Care and Its Association With Place of Death and Quality of Care

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Daniel Gutiérrez-Sánchez ◽  
Rafael Gómez-García ◽  
María Luisa Martín Roselló ◽  
Antonio I. Cuesta-Vargas
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Place Of Death ◽  
Advanced Cancer Patients ◽  
Quality Of Dying

Early palliative care and quality of dying and death in patients with advanced cancer

2021 ◽  
pp. bmjspcare-2021-002893
Author(s):  
Kenneth Mah ◽  
Brittany Chow ◽  
Nadia Swami ◽  
Ashley Pope ◽  
Anne Rydall ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Randomised Trial ◽  
Mean Difference ◽  
Cluster Randomised Trial ◽  
Early Palliative Care ◽  
Quality Of Dying ◽  
The Impact

ObjectiveEarly palliative care (EPC) in the outpatient setting improves quality of life for patients with advanced cancer, but its impact on quality of dying and death (QODD) and on quality of life at the end of life (QOL-EOL) has not been examined. Our study investigated the impact of EPC on patients’ QODD and QOL-EOL and the moderating role of receiving inpatient or home palliative care.MethodBereaved family caregivers who had provided care for patients participating in a cluster-randomised trial of EPC completed a validated QODD scale and indicated whether patients had received additional home palliative care or care in an inpatient palliative care unit (PCU). We examined the effects of EPC, inpatient or home palliative care, and their interactions on the QODD total score and on QOL-EOL (last 7 days of life).ResultsA total of 157 caregivers participated. Receipt of EPC showed no association with QODD total score. However, when additional palliative care was included in the model, intervention patients demonstrated better QOL-EOL than controls (p=0.02). Further, the intervention by PCU interaction was significant (p=0.02): those receiving both EPC and palliative care in a PCU had better QOL-EOL than those receiving only palliative care in a PCU (mean difference=27.10, p=0.002) or only EPC (mean difference=20.59, p=0.02).ConclusionAlthough there was no association with QODD, EPC was associated with improved QOL-EOL, particularly for those who also received inpatient care in a PCU. This suggests a long-term benefit from early interdisciplinary palliative care on care throughout the illness.Trial registration numberClinicalTrials.gov Registry (#NCT01248624).

Patient-Clinician Communication Issues in Palliative Care for Patients With Advanced Cancer

2020 ◽  
Vol 38 (9) ◽  
pp. 866-876 ◽  
Author(s):  
Anthony L. Back
Keyword(s):  
Palliative Care ◽  
Best Practices ◽  
Advanced Cancer ◽  
Symptom Control ◽  
Patient Trust ◽  
Patient Centered ◽  
Current State ◽  
Quality Of Medical Care ◽  
Clinician Communication

The delivery of palliative care to patients with advanced cancer and their families, whether done by oncology clinicians or palliative care clinicians, requires patient-centered communication. Excellent communication can introduce patients and families to palliative care in a nonthreatening way, build patient trust, enable symptom control, strengthen coping, and guide decision making. This review covers deficiencies in the current state of communication, patient preferences for communication about palliative care topics, best practices for communication, and the roles of education and system intervention. Communication is a two-way, relational process that is influenced by context, culture, words, and gestures, and it is one of the most important ways that clinicians influence the quality of medical care that patients and their families receive.

scholarly journals Calidad de la muerte percibida por los cuidadores de pacientes en cuidados paliativos

2020 ◽  
Vol 19 (4) ◽  
pp. 463-482
Author(s):  
Daniel Gutiérrez Sánchez ◽  
Inmaculada López-Leiva ◽  
Antonio I. Cuesta-Vargas
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Advanced Cancer ◽  
Spanish Version ◽  
Advanced Cancer Patients ◽  
Cross Sectional ◽  
Quality Of Dying ◽  
State Examination ◽  
Care Outcome

Objetivo: Determinar la calidad de la muerte y del proceso del morir en población oncológica avanzada, y analizar su asociación con el sufrimiento y la calidad de la atención al final de la vida.Método: Estudio descriptivo, correlacional, de corte transversal en el que participaron los cuidadores principales de los pacientes oncológicos fallecidos en cuidados paliativos. Para la evaluación de la calidad de la muerte y del proceso del morir se utilizó la versión española del Quality of Dying and Death Questionnaire. El sufrimiento fue evaluado con el Mini-Suffering State Examination y la calidad de la atención al final de la vida con la Palliative care Outcome Scale. Resultados: 74 cuidadores familiares de pacientes paliativos fallecidos participaron en este estudio. La puntuación media de la versión española del Quality of Dying and Death Questionnaire fue de 65,58 (± 20,98). Se encontró una correlación negativa entre la calidad de la muerte y el sufrimiento (r=-0,63) y positiva entre la calidad de la muerte y la calidad de la atención al final de la vida (r=0,62).Conclusión: La calidad de la muerte de los enfermos oncológicos avanzados en cuidados paliativos se relaciona positivamente con la calidad de la atención al final de la vida y negativamente con el sufrimiento. La atención paliativa contribuye a alcanzar niveles satisfactorios en la calidad de la muerte y del proceso del morir de los pacientes oncológicos avanzados. Objective: To determine the quality of dying and death in an advanced oncology population, and to analyze the association with the suffering and the quality of attention at the end of life.Methods: A cross-sectional, descriptive, correlational design was used. For the evaluation of the quality of dying and death, the Spanish version of the Quality of Dying and Death Questionnaire was used. Suffering was assessed with the Mini-Suffering State Examination and the quality of end-of-life care was evaluated with the Palliative care Outcome Scale.Results: 74 relatives of deceased patients were included in this study. The mean total score of the Spanish version of the Quality of Dying and Death Questionnaire was 64.58 (± 20.98). A negative correlation between the quality of dying and death and the suffering was found (r = -0.63), and a positive correlation between the quality of dying and death and the quality of the attention at the end of life was found (r = 0.62).Conclusion: Quality of dying and death in advanced cancer population is positively related to the quality of of the attention at the end of life and negatively related to suffering. Palliative care can contribute to achieving a satisfactory quality of dying and death of advanced cancer patients.

scholarly journals Healing at the End of Life: The Voice of the Patient

2014 ◽  
Vol 1 (1) ◽  
Author(s):  
Cory Ingram
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Lived Experience ◽  
End Of Life ◽  
Life Story ◽  
Patient Centered ◽  
Whole Person ◽  
Centered Care ◽  
The Impact

In palliative care we have the privilege to care for seriously ill people and their families. Some people value capturing their life story or illness journey on film. I have been fortunate to have been invited into the lives of many people close the end of life for a heartfelt conversation.On an interactive iPad incorporated in the poster, the recorded narrative of patients and one bereft spouse the poster audience will experience the lived experience of people close to the end of life as they reflect on their lives. The narratives will demonstrate how each lived with a new found improved quality of life in the face of increasing symptoms, declining functioning and the approaching end of life; otherwise known as healing. Topics of healing and quality of life, patient-centered care, dignity, human development, spirituality and love will be the focus of their stories. The stories lay bare the very practical, emotional, existential, and personal experience central to our provision of whole person care through palliative care. The poster audience will experience a renewed sense of the impact of a dedicated approach to whole person care as experienced through those on the receiving end.

scholarly journals Shifting Palliative Care Paradigm in Primary Care From Better Death to Better End-of-Life : A Swiss Pilot Study

2021 ◽  
Author(s):  
Johanna Sommer ◽  
Christopher Chung ◽  
Dagmar M. Haller ◽  
Sophie Pautex
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Palliative Care ◽  
Pilot Study ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Communication Skills ◽  
Advanced Cancer Patients

Abstract Background: Patients suffering from advanced cancer often loose contact with their primary care physician (PCP) during oncologic treatment and palliative care is introduced very late.The aim of this pilot study was to test the feasibility and procedures for a randomized trial of an intervention to teach PCPs a palliative care approach and communication skills to improve advanced cancer patients’ quality of life. Methods: Observational pilot study in 5 steps. 1) Recruitment of PCPs. 2) Intervention: training on palliative care competencies and communication skills addressing end-of-life issues.3) Recruitment of advanced cancer patients by PCPs. 4) Patients follow-up by PCPs, and assessment of their quality of life by a research assistant 5) Feedback from PCPs using a semi-structured focus group and three individual interviews with qualitative deductive theme analysis.Results: 8 PCPs were trained. PCPs failed to recruit patients for fear of imposing additional loads on their patients. PCPs changed their approach of advanced cancer patients. They became more conscious of their role and responsibility during oncologic treatments and felt empowered to take a more active role picking up patient’s cues and addressing advance directives. They developed interprofessional collaborations for advance care planning. Overall, they discovered the role to help patients to make decisions for a better end-of-life.Conclusions: PCPs failed to recruit advanced cancer patients, but reported a change in paradigm about palliative care. They moved from a focus on helping patients to die better, to a new role helping patients to define the conditions for a better end-of-life.Trial registration : The ethics committee of the canton of Geneva approved the study (2018-00077 Pilot Study) in accordance with the Declaration of Helsinki

scholarly journals The Quality of Dying and Death in Cancer and Its Relationship to Palliative Care and Place of Death

2014 ◽  
Vol 48 (5) ◽  
pp. 839-851 ◽  
Author(s):  
Sarah Hales ◽  
Aubrey Chiu ◽  
Amna Husain ◽  
Michal Braun ◽  
Anne Rydall ◽  
...  
Keyword(s):  
Palliative Care ◽  
Place Of Death ◽  
Quality Of Dying

Financial Hardship and Quality of Life Among Patients With Advanced Cancer Receiving Outpatient Palliative Care

2021 ◽  
Vol Publish Ahead of Print ◽  
Author(s):  
Sarah M. Belcher ◽  
Haerim Lee ◽  
Janet Nguyen ◽  
Kimberly Curseen ◽  
Ashima Lal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Advanced Cancer ◽  
Financial Hardship

Anxiety Disorders in Palliative Care

2014 ◽  
pp. 19-28
Author(s):  
William S. Breitbart
Keyword(s):  
Palliative Care ◽  
Anxiety Disorders ◽  
Medical Condition ◽  
Terminally Ill ◽  
Adjustment Disorder ◽  
Assessment Tools ◽  
Pharmacological Agents ◽  
General Medical Condition ◽  
Severe Anxiety

Anxiety is common in palliative care patients and may significantly impact patients’ quality of life. Anxiety can have many etiologies resulting in different anxiety syndromes, ranging from adjustment disorder, anxiety resulting from general medical condition, to medication-induced anxiety disorders. Pre-existing anxiety disorders should also be taken into consideration in palliative care settings. Different screening and assessment tools have been used to improve recognition and assessment of anxiety in the terminally ill. Treatment of anxiety in this patient population includes use of a variety of pharmacological agents to relieve severe anxiety symptoms and use of psychotherapy interventions that have been shown to be safe and effective in the terminally ill. This chapter includes an overview of the prevalence, assessment, and management of anxiety disorders in palliative care settings.

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