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 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

Patients' perspectives on participation in clinical trials and palliative end-of-life care for management of advanced cancers in Nigeria.

2017 ◽  
Vol 35 (31_suppl) ◽  
pp. 78-78
Author(s):  
Jideuma Ikenna Egwim ◽  
Smita Palejwala
Keyword(s):  
Clinical Trials ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
End Of Life Care ◽  
Life Care ◽  
Advanced Cancer Patients ◽  
Incurable Cancer ◽  
Quality Of Dying

78 Background: Advanced cancers remain a major cause of mortality in Nigeria. Participation in clinical trials (PCTs) and palliative end-of-life care (PEOLC) are two approaches to incurable cancer management in the developed nations but these have been less adopted in Nigeria. This study set out to determine patients’ preferred approach between PCTs and PEOLC for management of advanced cancers in Nigeria. Methods: A survey of 120 advanced cancer patients was conducted using a questionnaire with 5-point Likert scale, variables of interest included demographic information, knowledge and perception about PCTs and PEOLC. Results: Majority of the patients (84%) agree PCTs is an option in management of incurable cancer but just about half accept it is beneficial and will improve their QOL, as against PEOLC, where all the patients considered it an option and deem it beneficial; with 99% and 98% respectively agreeing it will enhance their QOL and that of family members. About 56% believe PCTs carries a risk of burdensome interventions and 52% increased hospital stay at EOL while 47% are of the opinion it will increase cost of care with 45% stating it will lead to increased ICU death. Sixty-nine percent (69%) and 63% respectively agree PCTs increases the suffering of patients and family members while 43% believe it carries a net negative risk-benefit profile, nevertheless, 83% are ready to overlook the risk of PCTs for possible therapeutic benefit while for 87%, the primary motivation for PCTs is personal cure. Majority (58%) believe PCTs does not improve quality of dying/death contrary to PEOLC where 88% believe it would improve the quality of dying/death. Overall, by direct comparison 78%:13% prefer PEOL to PCTs; {X2(p-value), 40.26(0.001)}. Conclusions: Both modalities are acceptable to advanced cancer patients but the study reveals several ethical issues with PCTs including risk of burdensome interventions, suffering of patients, therapeutic misconception and misperception of curability. A major determinant to accepting PEOL is its positive impact on patients’ QOL. Concerted efforts are needed to significantly enhance access of PEOLC to cancer patients.

scholarly journals Shifting palliative care paradigm in primary care from better death to better end-of-life: a Swiss pilot study

2021 ◽  
Vol 21 (1) ◽  
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 ◽  
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 Eight PCPs were trained. Patient recruitment was a challenge for PCPs who feared to impose additional loads on their patients. PCPs 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 While the intervention was acceptable to PCPs, recruitment was a challenge and a follow up trial was not deemed feasible using the current design but PCPs 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.

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

End-of-life discussions with advanced cancer patients and their effects on bereaved families’ mental health.

2016 ◽  
Vol 34 (26_suppl) ◽  
pp. 3-3
Author(s):  
Takashi Yamaguchi ◽  
Isseki Maeda ◽  
Yutaka Hatano ◽  
Masanori Mori ◽  
Yasuo Shima ◽  
...  
Keyword(s):  
Mental Health ◽  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Complicated Grief ◽  
Advanced Cancer Patients ◽  
Palliative Care Teams ◽  
Prevalence Of Depression

3 Background: End-of-life (EOL) discussions are important for providing appropriate care to patients with advanced cancer at the end of their life. To explore the relationship between EOL discussions and bereaved families’ mental health, as well as the quality of the patient’s death and quality of care at the end of life. Methods: This was a nationwide questionnaire survey of bereaved families of deceased cancer patients who died at 75 sites (20 inpatient palliative care teams in acute hospitals, 33 palliative care units/inpatient hospices, and 22 outpatient clinics that provide home palliative care service) in Japan. 13,711 bereaved family members of cancer patients who died before January 2014 in each of the participating institutions were potential participants. We evaluated the prevalence and details of EOL discussions which were defined as “a discussion with physicians about the preferred place of death or resuscitation”. We also evaluated the prevalence of depression (defined as the Patient Health Questionnaire-9 ≥ 10) and complicated grief (defined as the Brief Grief Questionnaire ≥ 8) in bereaved families. Results: 9123 questionnaires returned (response rate 67%). Of those, 80.6% had EOL discussions. After propensity score weighted adjustment, bereaved families with EOL discussion less frequently developed depression (17.3% and 21.6% ; P < 0.001) and complicated grief (13.7% and 15.9% ; P = 0.03) than without. There were significant differences in the trend test among families without and in those with EOL discussions < 1, 1–3, and > 3 months before the patient’s death, for the prevalence of depression (21.6%, 20.6%, 16.8%, and 15.5%, respectively; P trend < 0.001) and complicated grief (15.9%, 16.4%, 12.8%, and 12.9%, respectively; P trend < 0.001). Conclusions: EOL discussions may contribute to decrease depression and complicated grief in bereaved families. EOL discussions should be initiated with advanced cancer patients when physicians expect a patient’s prognosis is limited to several months.

scholarly journals Psychometric Testing of the Spanish Modified Version of the Mini-Suffering State Examination

2021 ◽  
Vol 18 (15) ◽  
pp. 7821
Author(s):  
Daniel Gutiérrez-Sánchez ◽  
Rafael Gómez-García ◽  
Isabel María López-Medina ◽  
Antonio I. Cuesta-Vargas
Keyword(s):  
Internal Consistency ◽  
Content Validity ◽  
Convergent Validity ◽  
Informal Caregivers ◽  
Psychometric Testing ◽  
Spanish Version ◽  
Measurement Properties ◽  
Quality Of Dying ◽  
State Examination

Background: The mini-suffering state examination is a valid and reliable measure that have been used to assess suffering in patients with advanced cancer. The aim of this study was to carry out a psychometric analysis of the Spanish version of the mini-suffering state examination. Method: A validation study was conducted. Seventy-two informal caregivers of deceased patients in palliative care were included in this study. A psychometric testing of content validity, internal consistency, and convergent validity with the Spanish version of the quality of dying and death questionnaire was performed. Results: The original instrument was modified to be used by informal caregivers. The content validity was acceptable (0.96), and the internal consistency was moderate (α = 0.67). Convergent validity was demonstrated (r = −0.64). Conclusion: The Spanish modified version of the MSSE showed satisfactory measurement properties. The Spanish modified version of MSSE can be useful to facilitate screening, monitor progress, and guide treatment decisions in end-of-life cancer patients.

scholarly journals A scoping review of palliative care outcome measures in interstitial lung disease

2021 ◽  
Vol 30 (161) ◽  
pp. 210080
Author(s):  
Rebecca A. Gersten ◽  
Amanda C. Moale ◽  
Bhavna Seth ◽  
Judith B. Vick ◽  
Hannah Brown ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mental Health ◽  
Palliative Care ◽  
Physical Health ◽  
Outcome Measures ◽  
Secondary Analysis ◽  
Social Health ◽  
Cross Sectional ◽  
Care Outcome

Interstitial lung disease (ILD) confers a high mortality and symptom burden, substantially impacting quality of life. Studies evaluating palliative care in ILD are rapidly expanding. Uniform outcome measures are crucial to assessing the impact of palliative care in ILD. This scoping review evaluates existing outcome measures in general health-related quality of life (HRQoL), physical health, mental health, social health and advance care planning (ACP) domains in patients with ILD. Articles in English with quantitative assessment of at least one measure of general HRQoL, physical health, mental health, social health or ACP in patients with ILD were included. Searches across three databases yielded 3488 non-duplicate articles. 23 met eligibility criteria and included three randomised controlled trials (RCTs) or secondary analysis of an RCT (13%), three cross-sectional studies or secondary analysis of cross-sectional study (13%), one prospective study (4%) and 16 retrospective studies (70%). Among eligible articles, 25 distinct instruments were identified. Six studies assessed general HRQoL (26%), 16 assessed physical health (70%), 11 assessed mental health (48%), six assessed social health (26%) and 16 assessed ACP (70%). The ability to compare results across studies remains challenging given the heterogeneity in outcome measures. Future work is needed to develop core palliative care outcome measures in ILD.

scholarly journals Chemotherapy use and quality of life in cancer patients at the end of life: an integrative review

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Elham Akhlaghi ◽  
Rebecca H. Lehto ◽  
Mohsen Torabikhah ◽  
Hamid Sharif Nia ◽  
Ahmad Taheri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Palliative Chemotherapy ◽  
Palliative Therapy ◽  
Related Quality ◽  
Health Related

Abstract Background When curative treatments are no longer available for cancer patients, the aim of treatment is palliative. The emphasis of palliative care is on optimizing quality of life and provided support for patients nearing end of life. However, chemotherapy is often offered as a palliative therapy for patients with advanced cancer nearing death. The purpose of this review was to evaluate the state of the science relative to use of palliative chemotherapy and maintenance of quality of life in patients with advanced cancer who were at end of life. Materials and methods Published research from January 2010 to December 2019 was reviewed using PRISMA guidelines using PubMed, Proquest, ISI web of science, Science Direct, and Scopus databases. MeSH keywords including quality of life, health related quality of life, cancer chemotherapy, drug therapy, end of life care, palliative care, palliative therapy, and palliative treatment. Findings 13 studies were evaluated based on inclusion criteria. Most of these studies identified that reduced quality of life was associated with receipt of palliative chemotherapy in patients with advanced cancer at the end of life. Conclusion Studies have primarily been conducted in European and American countries. Cultural background of patients may impact quality of life at end of life. More research is needed in developing countries including Mideastern and Asian countries.

An early palliative care intervention can be confronting but reassuring: A qualitative study on the experiences of patients with advanced cancer

2019 ◽  
Vol 33 (7) ◽  
pp. 783-792 ◽  
Author(s):  
Monica Fliedner ◽  
Sofia Zambrano ◽  
Jos MGA Schols ◽  
Marie Bakitas ◽  
Christa Lohrmann ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Advanced Cancer Patients ◽  
End Of Life Decisions ◽  
Early Palliative Care ◽  
Network Support ◽  
Care Intervention ◽  
Life Decisions

Background: Intervention trials confirm that patients with advanced cancer receiving early palliative care experience a better quality of life and show improved knowledge about and use of palliative care services. To involve patients in future health-care decisions, health professionals should understand patients’ perspectives. However, little is known about how patients’ experience such interventions. Aim: To explore advanced cancer patients’ experiences with a structured early palliative care intervention, its acceptability and impact on the patients’ life including influencing factors. Design: Qualitative content analysis of in-depth, semi-structured interviews. Setting/participants: Patients with various advanced cancer diagnoses were enrolled in a multicenter randomized controlled trial (NCT01983956), which investigated the impact of “Symptoms, End-of-life decisions, Network, Support,” a structured early palliative care intervention, on distress. Of these, 20 patients who underwent the intervention participated in this study. Results: Participants received the intervention well and gained a better understanding of their personal situation. Patients reported that the intervention can feel “confronting” but with the right timing it can be confirming and facilitate family conversations. Patients’ personal background and the intervention timing within their personal disease trajectory influenced their emotional and cognitive experiences; it also impacted their understanding of palliative care and triggered actions toward future care planning. Conclusion: Early palliative care interventions like “Symptoms, End-of-life decisions, Network, Support” may provoke emotions and feel “confrontational” often because this is the first time when issues about one’s end of life are openly discussed; yet, advanced cancer patients found it beneficial and felt it should be incorporated into routine care.

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