Factors Affecting the Improvement of Quality of Dying of Terminally Ill Patients with Cancer through Palliative Care: A Ten-Year Experience

Background: Few studies evaluated whether health care professionals accurately assess several symptoms for patients with cancer in palliative care units. We determined the agreement level for several symptoms related to quality of life (QOL) between patient-reported QOL assessment and health care professional-assessed symptoms based on the Support Team Assessment Schedule (STAS). Method: An observational study was performed with terminally ill patients with cancer hospitalized in the palliative care unit between June 2018 and December 2019. Patients and health care professionals independently assessed 7 symptoms at the time of hospitalization and after 1 week. Patients completed the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C15-PAL). In examining the proportions of exact agreement, “exact agreement” referred to the pairs of the scores (QLQ-C15-PAL vs STAS) being (1 vs 0), (2 vs 1), (3 vs 2 or 3), or (4 vs 4). The relationships of physical functioning between QLQ-C15-PAL and Palliative Performance Scale (PPS) were examined. Results: Of 130 patients, approximately 60% had PPS scores from 40 to 60. The highest mean score on QLQ-C15-PAL was for fatigue (63.8). The exact agreement on symptoms between patients and health care professionals ranged from 15.4% (fatigue) to 57.7% (nausea and vomiting). The mean of the transformed QLQ-C15-PAL and proportions of exact agreement were negatively correlated ( R 2 = 0.949, P < .05). The physical function scores in QLQ-C15-PAL for each PPS group showed no differences. Conclusion: We expect patient-reported outcomes including QLQ-C15-PAL to be added to health care professionals’ assessment of serious symptoms such as fatigue in terminally ill patients with cancer.

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Symptom clusters and their influence on prognosis using EORTC QLQ-C15-PAL scores in terminally ill patients with cancer

Supportive Care in Cancer ◽

10.1007/s00520-021-06380-w ◽

2021 ◽

Author(s):

Nanako Koyama ◽

Chikako Matsumura ◽

Yuuna Tahara ◽

Morito Sako ◽

Hideo Kurosawa ◽

...

Keyword(s):

Palliative Care ◽

Terminally Ill ◽

Symptom Clusters ◽

Rank Test ◽

Appetite Loss ◽

Patients With Cancer ◽

Terminally Ill Patients ◽

Log Rank Test ◽

Eortc Qlq ◽

Cluster 2

Abstract Purpose The aims of the present study were to investigate the symptom clusters in terminally ill patients with cancer using the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative Care (EORTC QLQ-C15-PAL), and to examine whether these symptom clusters influenced prognosis. Methods We analyzed data from 130 cancer patients hospitalized in the palliative care unit from June 2018 to December 2019 in an observational study. Principal component analysis was used to detect symptom clusters using the scored date of 14 items in the QLQ-C15-PAL, except for overall QOL, at the time of hospitalization. The influence of the existence of these symptom clusters and Palliative Performance Scale (PPS) on survival was analyzed by Cox proportional hazards regression analysis, and survival curves were compared between the groups with or without existing corresponding symptom clusters using the log-rank test. Results The following symptom clusters were identified: cluster 1 (pain, insomnia, emotional functioning), cluster 2 (dyspnea, appetite loss, fatigue, and nausea), and cluster 3 (physical functioning). Cronbach’s alpha values for the symptom clusters ranged from 0.72 to 0.82. An increased risk of death was significantly associated with the existence of cluster 2 and poor PPS (log-rank test, p = 0.016 and p < 0.001, respectively). Conclusion In terminally ill patients with cancer, three symptom clusters were detected based on QLQ-C15-PAL scores. Poor PPS and the presence of symptom cluster that includes dyspnea, appetite loss, fatigue, and nausea indicated poor prognosis.

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Sleep Pattern and Predictors of Sleep Disturbance Among Family Caregivers of Terminal Ill Patients With Cancer in Taiwan: A Longitudinal Study

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909118755453 ◽

2018 ◽

Vol 35 (8) ◽

pp. 1109-1117 ◽

Cited By ~ 4

Author(s):

Kwo-Chen Lee ◽

Ya-Ling Hsieh ◽

Pi-Chu Lin ◽

Yun-Ping Lin

Keyword(s):

Longitudinal Study ◽

Sleep Quality ◽

Sleep Disturbance ◽

Family Caregivers ◽

Terminally Ill ◽

Patients With Cancer ◽

Terminally Ill Patients ◽

Prospective Longitudinal

Background: Sleep disturbance commonly has a negative impact on the well-being of family caregivers (FCs) of terminally ill patients with cancer. The effect of sleep disturbance on FCs has not been explored through long-term follow-up studies in Taiwan. Objective: The purposes of this study were to (1) identify the trajectory of sleep quality of FCs of terminally ill patients with cancer in Taiwan and (2) examine the determinants of sleep disturbance through a longitudinal follow-up until patient death. Methods: A prospective, longitudinal study was conducted among 95 FCs of terminally ill patients with cancer. The FCs’ sleep quality was measured subjectively by using the Pittsburgh Sleep Quality Index and objectively by wearing a wrist actigraphy for 48 hours each month during the 6-month follow-up assessments. The trajectory and determinants of sleep quality were identified using a generalized estimation equation approach. Results: The FCs’ sleep quality significantly decreased as the patient’s death approached. Family caregivers who were women or older, had a relative with a longer survival period after diagnosis, reported higher levels of depression and fatigue, and provided lower levels of assistance to their relatives experienced more sleep disturbance. Conclusion: The sleep quality of Taiwanese FCs significantly deteriorated as the death of the terminally ill patients with cancer approached. Early detection of the FCs’ sleep disturbance, increasing their self-awareness of sleep problems, and providing nonpharmacological interventions and psychosocial support may be helpful for FCs to improve their quantity and quality of sleep.

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Nurses experiences in palliative care of terminally-ill HIV patients in a level 1 district hospital

Curationis ◽

10.4102/curationis.v37i1.1238 ◽

2014 ◽

Vol 37 (1) ◽

Cited By ~ 1

Author(s):

Nokwanda E. Bam ◽

Joanne R. Naidoo

Keyword(s):

Palliative Care ◽

Terminally Ill ◽

Interdisciplinary Teams ◽

Sub Saharan Africa ◽

Hiv Care ◽

Terminally Ill Patients ◽

Hiv Management ◽

The Social ◽

Sub Saharan

Background: Whilst the discourse of palliative care in HIV management is largely documented and regarded as being an essential component, various authors have further argued that within the context of HIV care in sub-Saharan Africa, palliative care and exploration of the dimensions thereof is largely lacking. This article presents the lived experiences of nurses involved in palliative care, thus providing the perspective of nurses and the multi-faceted dimensions of the nature of caring inherent.Objectives: This study explored the respondents’ understanding of the concepts ‘caring’ and ‘terminal patient’ and described the experiences of nurses caring for terminally-ill patients with HIV and how these experiences influence the nature of care rendered.Methods: Qualitative research using Husserl’s approach of phenomenology design underpinned the study and Giorgi’s steps of analysis were used to make meaning of the data.Results: The concept ‘caring’ was experienced by the nurses as transforming the patients’ quality of life through supportive care and hope for life. Palliative care made the nurses conscious of their own mortality, enabling them to be more sensitive, compassionate and dedicated to caring for their patients. The findings described the social networking that enabled nurses to collaborate with colleagues in the interdisciplinary teams and shared knowledge, skills and support within the palliative care team in order to optimise patient outcomes.Conclusion: Nurses with prolonged involvement in caring for terminally-ill patients with HIV experienced helplessness and emotional stress. Recommendations based on the results are that training in psychological and holistic care of the patient, professional counselling and stress management services are needed to support the nurse in this context.

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The Prevalence of Neuropathic Pain in Terminally Ill Patients With Cancer Admitted to a Palliative Care Unit

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909115577353 ◽

2015 ◽

Vol 33 (6) ◽

pp. 594-598 ◽

Cited By ~ 1

Author(s):

Shinsuke Harada ◽

Fumihiko Tamura ◽

Shuhei Ota

Keyword(s):

Palliative Care ◽

Neuropathic Pain ◽

Terminally Ill ◽

Palliative Care Unit ◽

Patients With Cancer ◽

Terminally Ill Patients

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Factors Associated with Quality of Dying and Death in Korean Intensive Care Units: Perceptions of Nurses

Healthcare ◽

10.3390/healthcare9010040 ◽

2021 ◽

Vol 9 (1) ◽

pp. 40

Author(s):

Haeyoung Lee ◽

Seung-Hye Choi

Keyword(s):

Intensive Care Unit ◽

Intensive Care ◽

Online Survey ◽

Healthcare Providers ◽

Terminally Ill ◽

Cross Sectional ◽

Quality Of Dying ◽

Terminally Ill Patients ◽

Quality Of Death

The objective of this study was to investigate the factors affecting the quality of dying and death among terminally ill patients in an intensive care unit in Korea using a cross-sectional, online survey. A total of 300 nurses in the intensive care unit who had cared for a terminally ill patient for at least 48 h prior to death in the past six months were chosen to participate. The person-centered critical care nursing (PCCN) score and quality of dying and death (QODD) had a positive correlation. The QODD score increased when the consultation was conducted between the terminally ill patients and their doctors when CPR was not performed within 48 h of death, and when the PCCN score increased. The quality of death of patients is affected by whether they have sufficiently consulted with healthcare providers regarding their death and how much respect they receive. It is important for nurses to practice and improve patient-centered nursing care in order to ensure a good quality of death for terminally ill patients.

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The Role of EORTC QLQ-C15-PAL Scores and Inflammatory Biomarkers in Predicting Survival in Terminally Ill Patients with Cancer

10.21203/rs.3.rs-121092/v1 ◽

2020 ◽

Author(s):

Nanako Koyama ◽

Chikako Matsumura ◽

Yoshihiro Shitashimizu ◽

Morito Sako ◽

Hideo Kurosawa ◽

...

Keyword(s):

Palliative Care ◽

Patient Reported Outcomes ◽

Cox Regression ◽

Terminally Ill ◽

Inflammatory Biomarkers ◽

Survival Curves ◽

Patients With Cancer ◽

Terminally Ill Patients ◽

Patient Reported ◽

Eortc Qlq

Abstract Background The clinical use of patient-reported outcomes as compared to inflammatory biomarkers for predicting cancer survival remains a challenge in palliative care settings. We evaluated the accuracy of survival prediction in both indicators of the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire Core 15 Palliative scores (EORTC QLQ-C15-PAL) and the inflammatory biomarkers C-reactive protein (CRP), albumin (Alb), and neutrophil-lymphocyte ratio (NLR) in patients with advanced cancer. Methods This was an observational study in terminally ill patients with cancer hospitalized in a palliative care unit between June 2018 and December 2019. Patients’ data collected at the time of hospitalization were analyzed. Cox regression was performed to examine significant factors influencing survival. A receiver operating characteristic (ROC) analysis was performed to estimate cut-off values for predicting survival within 3 weeks, and a log-rank test was performed to compare survival curves between groups divided by the cut-off values. Results Totally, 130 patients participated in the study. Cox regression suggested that the QLQ-C15-PAL dyspnea and fatigue scores and levels of CRP, Alb, and NLR were significantly associated with survival time, and cut-off values were 66.67, 66.67, 3.0 mg/dL, 2.5 g/dL, and 8.2, respectively. The areas under ROC curves of these variables were 0.6–0.7. There were statistically significant differences in the survival curves between groups categorized using each of these cut-off values (p < .05 for all cases). Conclusion Our findings suggest that the assessment of not only objective indicators for the systemic inflammatory response but also patient-reported outcomes using EORTC QLQ-C15-PAL is beneficial for the prediction of short-term survival in terminally ill patients with cancer.

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“When I Heard the Word Palliative”: Obscuring and Clarifying Factors Affecting the Stigma Around Palliative Care Referral in Oncology

JCO Oncology Practice ◽

10.1200/op.21.00088 ◽

2021 ◽

pp. OP.21.00088

Author(s):

Taynara Formagini ◽

Claire Poague ◽

Alicia O'Neal ◽

Joanna Veazey Brooks

Keyword(s):

Palliative Care ◽

End Of Life ◽

Vital Role ◽

Cancer Center ◽

Factors Affecting ◽

Patients With Cancer ◽

Social Network Influence ◽

Qualitative Descriptive ◽

Cancer Trajectory

PURPOSE Palliative care (PC) can help patients with cancer manage symptoms and achieve a greater quality of life. However, there are many barriers to patients with cancer receiving referrals to PC, including the stigmatizing association of PC with end of life. This study explores factors that obscure or clarify the stigma around PC referrals and its associations with end of life in cancer care. METHODS A qualitative descriptive design using grounded theory components was designed to investigate barriers to PC referrals for patients receiving treatment at an outpatient cancer center. Interviews with patients, caregivers, and oncology professionals were audio-recorded, transcribed, and independently coded by three investigators to ensure rigor. Participants were asked about their perceptions of PC and PC referral experiences. RESULTS Interviews with 44 participants revealed both obscuring and clarifying factors surrounding the association of PC as end of life. Prognostic uncertainty, confusion about PC's role, and social network influence all perpetuated an inaccurate and stigmatizing association of PC with end of life. Contrarily, familiarity with PC, prognostic confidence, and clear referral communication helped delineate PC as distinct from end of life. CONCLUSION To reduce the stigmatizing association of PC with end of life, referring clinicians should clearly communicate prognosis, PC's role, and the reason for referral within the context of each patient and his or her unique cancer trajectory. The oncology team plays a vital role in framing the messaging surrounding referrals to PC.

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‘Song of Life’: music therapy in terminally ill patients with cancer

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2017-001475 ◽

2018 ◽

Vol 8 (2) ◽

pp. 167-170 ◽

Cited By ~ 4

Author(s):

Marco Warth ◽

Jens Kessler ◽

Josien van Kampen ◽

Beate Ditzen ◽

Hubert J Bardenheuer

Keyword(s):

Palliative Care ◽

Music Therapy ◽

Randomised Trial ◽

Terminally Ill ◽

Well Being ◽

Self Report ◽

Post Intervention ◽

Important Place ◽

Patients With Cancer ◽

Terminally Ill Patients

ObjectivesMusic therapy (MT) holds a promising potential to meet emotional and existential needs in palliative care patients. The aim of the present pilot study was to assess the feasibility, acceptance and potential effectiveness of a novel MT intervention to improve life closure and spiritual well-being of terminally ill patients with cancer receiving palliative care.MethodsThe ‘Song of Life’ (SOL) intervention was provided on two consecutive sessions containing a biographical interview and a live performance of a song with high biographical relevance to the patient in a lullaby style. Pre-to-post intervention assessments comprised brief self-report measures on life closure, well-being, stress, worry and pain.Results13 out of 15 patients were able to complete the protocol as intended. The chosen songs were associated with a close person, an important place or event or with a religious belief. The results showed medium-sized improvements with regard to life closure, well-being, relaxation, worry and pain.Conclusion‘SOL’ proved to be a feasible and highly accepted intervention for patients approaching the end of their lives. Further consideration with regard to the procedures and outcomes is necessary before implementation of a randomised trial.

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