scholarly journals Impact of end-of-life respiratory modalities on quality of dying and death and symptom relief in patients with interstitial lung disease: a multicenter descriptive cross-sectional study

2021 ◽  
Author(s):  
Takafumi Koyauchi ◽  
Yuzo Suzuki ◽  
Kazuki Sato ◽  
Hironao Hozumi ◽  
Masato Karayama ◽  
...  
Keyword(s):  
Interstitial Lung Disease ◽  
Lung Disease ◽  
End Of Life ◽  
Real World ◽  
Symptom Relief ◽  
Quality Of Dying ◽  
Real World Setting ◽  
End Stage ◽  
The Impact

Abstract Background: Respiratory modalities that applied at end of life may affect burden of distressing symptoms and quality of dying and death (QODD) among patients with end-stage interstitial lung disease (ILD); however, there have been few studies into respiratory modalities applied to these patients near death. We hypothesized that high-flow nasal cannula (HFNC) may contribute to improved QODD and symptom relief in patients with end-stage ILD.Objectives: This multicenter study examined the proportion of end-of-life respiratory modalities in a real-world setting and explored its impact on QODD and symptom relief among patients dying with ILD.Methods: Consecutive patients with ILD who died in four participating institutions in Japan from 2015 to 2019 were identified and divided into four groups according to end-of-life respiratory modality: conventional oxygen therapy (COT), HFNC, non-invasive ventilation (NIV), and invasive mechanical ventilation (IMV). In addition, a mail survey was performed to quantify the QODD and symptom relief at their end of life from a bereaved family’s perspective. QODD and symptom relief were quantified using the Good Death Inventory (GDI) for patients with a completed bereavement survey. The impact of end-of-life respiratory modalities on QODD and symptom relief was measured by multivariable linear regression using COT as a reference.Results: Among 177 patients analyzed for end-of-life respiratory modalities, 80 had a completed bereavement survey. The most common end-of-life respiratory modality was HFNC (n=76, 42.9%), followed by COT (n=62, 35.0%), NIV (n=27, 15.3%), and IMV (n=12, 6.8%). Regarding the place of death, 98.7% of patients treated with HFNC died outside the intensive care unit. Multivariable regression analyses revealed patients treated with HFNC had a higher GDI score for QODD [partial regression coefficient (B)=0.46, 95% CI: 0.07–0.86] and domain score related to symptom relief (B=1.37, 95% CI: 0.54–2.20) than those treated with COT. Conclusion: HFNC was commonly used in patients with end-stage ILD in real-world setting and was associated with higher QODD and better symptom relief. HNFC may contribute to improved QODD and symptom relief in these patients.

scholarly journals Quality of dying and death in patients with interstitial lung disease compared with lung cancer: an observational study

Thorax ◽  
2020 ◽  
pp. thoraxjnl-2020-215917
Author(s):  
Takafumi Koyauchi ◽  
Yuzo Suzuki ◽  
Kazuki Sato ◽  
Hironao Hozumi ◽  
Masato Karayama ◽  
...  
Keyword(s):  
Lung Cancer ◽  
Decision Making ◽  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
End Of Life ◽  
Symptom Relief ◽  
Mail Survey ◽  
Quality Of Dying

BackgroundThere is limited knowledge regarding the quality of dying and death (QODD) and end-of-life interventions in patients with interstitial lung disease (ILD). Hence, differences in QODD and end-of-life interventions between patients with ILD and those with lung cancer (LC) remain poorly understood.MethodsThe primary aim of this study was to explore the differences in QODD and end-of-life interventions among patients dying with ILD versus those dying with LC. We performed a mail survey to quantify the QODD of a bereaved family’s perspective using the Good Death Inventory (GDI) score. Moreover, we examined the end-of-life interventions by medical chart review.ResultsOf 361 consecutive patients analysed for end-of-life interventions, 167 patients whose bereaved families completed questionnaires were analysed for QODD. Patients with ILD had lower GDI scores for QODD than those with LC (p=0.04), particularly in domains related to ‘physical and psychological distress relief’ and ‘prognosis awareness and participation in decision making’ (p=0.02, respectively). In end-of-life interventions, patients with ILD were less likely to receive specialised palliative care services (8.5% vs 54.3%; p<0.001) and opioids (58.2% vs 73.4%; p=0.003). Additionally, lower frequencies of participation of patients with ILD in end-of-life discussion were also observed (40.8% vs 62.4%; p=0.007).ConclusionPatients with ILD had lower QODD and poorer access to palliative care and decision making than those with LC. Additional efforts to improve QODD in patients with ILD, particularly in symptom relief and decision-making processes, are urgently warranted.

scholarly journals Multidisciplinary Team-Based Palliative Care for Heart Failure and Food Intake at the End of Life

Nutrients ◽  
2021 ◽  
Vol 13 (7) ◽  
pp. 2387
Author(s):  
Tatsuhiro Shibata ◽  
Kazutoshi Mawatari ◽  
Naoko Nakashima ◽  
Koutatsu Shimozono ◽  
Kouko Ushijima ◽  
...  
Keyword(s):  
Heart Failure ◽  
Palliative Care ◽  
Food Intake ◽  
End Of Life ◽  
Psychological Symptoms ◽  
Symptom Relief ◽  
Artificial Nutrition ◽  
End Stage ◽  
The Impact

Traditionally, patients with end-stage heart failure (HF) have rarely been involved in end-of-life care (EOLC) discussions in Japan. The purpose of this study was to examine the impact of HF-specific palliative care team (HF-PCT) activities on EOLC discussions with patients, HF therapy and care, and food intake at the end of life. We retrospectively analyzed 52 consecutive patients with HF (mean age, 70 ± 15 years; 42% female) who died at our hospital between May 2013 and July 2020 and divided them into two groups: before (Era 1, n = 19) and after (Era 2, n = 33) the initiation of HF-PCT activities in June 2015. Compared to Era 1, Era 2 showed a decrease in invasive procedures, an increase in opioid and non-intubating sedative use for symptom relief, improved quality of meals at the end of life, and an increase in participation in EOLC discussions. The administration of artificial nutrition in the final three days was associated with non-ischemic cardiomyopathy etiology, the number of previous hospitalizations for HF, and multidisciplinary EOLC discussion support. HF-PCT activities may provide an opportunity to discuss EOLC with patients, reduce the burden of physical and psychological symptoms, and shift the goals of end-of-life nutritional intake to ensure comfort and quality of life.

scholarly journals Functional ageing in fibrotic interstitial lung disease: the impact of frailty on adverse health outcomes

2019 ◽  
Vol 55 (1) ◽  
pp. 1900647 ◽  
Author(s):  
Sabina A. Guler ◽  
Joanne M. Kwan ◽  
Janice M. Leung ◽  
Nasreen Khalil ◽  
Pearce G. Wilcox ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Interstitial Lung Disease ◽  
Health Outcomes ◽  
Lung Disease ◽  
Clinical Decision Making ◽  
Frailty Index ◽  
Adverse Health ◽  
Adverse Health Outcomes ◽  
The Impact

BackgroundAccelerated biological and functional ageing is common in fibrotic interstitial lung disease (ILD); however, their impact on adverse health outcomes has not been evaluated in this population.MethodsPatients were prospectively recruited from a specialised ILD clinic. Functional ageing was determined by frailty index and biological age by measurement of absolute telomere length (aTL) from patients' peripheral blood leukocytes. Adverse health outcomes included health-related quality of life (St George's Respiratory Questionnaire), number and length of respiratory and non-respiratory hospitalisations, medication tolerability and time to death or lung transplantation. Multivariable models were used to determine the risks and rates of adverse health outcomes associated with the frailty index and aTL.Results540 patients with fibrotic ILD, including 100 with idiopathic pulmonary fibrosis (IPF), provided 749 frailty index assessments, with 189 patients providing blood samples. The frailty index was strongly associated with quality of life, rate of hospitalisation, time to hospital discharge and mortality, including adjustment for age, sex, disease severity and IPF diagnosis. Mortality prognostication was improved by the addition of the frailty index to commonly used clinical parameters and previously validated composite indices. Conversely, aTL was not associated with most adverse health outcomes. The effect of chronological age on outcomes was mediated primarily by the frailty index, and to a lesser extent by aTL.ConclusionsFunctional ageing is associated with adverse health outcomes in patients with fibrotic ILD, indicating the need for consideration of the individual functional age into clinical decision-making.

scholarly journals Which factors influence the quality of end-of-life care in interstitial lung disease? A systematic review with narrative synthesis

2021 ◽  
pp. 026921632110593
Author(s):  
Evelyn Palmer ◽  
Emily Kavanagh ◽  
Shelina Visram ◽  
Anne-Marie Bourke ◽  
Ian Forrest ◽  
...  
Keyword(s):  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
End Of Life ◽  
Symptom Management ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Electronic Healthcare Databases

Background: People dying from interstitial lung disease experience considerable symptoms and commonly die in an acute healthcare environment. However, there is limited understanding about the quality of their end-of-life care. Aim: To synthesise evidence about end-of-life care in interstitial lung disease and identify factors that influence quality of care. Design: Systematic literature review and narrative synthesis. The review protocol was prospectively registered with PROSPERO (CRD42020203197). Data sources: Five electronic healthcare databases were searched (Medline, Embase, PubMed, Scopus and Web of Science) from January 1996 to February 2021. Studies were included if they focussed on the end-of-life care or death of patients with interstitial lung disease. Quality was assessed using the Critical Appraisal Skills Programme checklist for the relevant study design. Results: A total of 4088 articles were identified by initial searches. Twenty-four met the inclusion criteria, providing evidence from 300,736 individuals across eight countries. Most patients with interstitial lung disease died in hospital, with some subjected to a high burden of investigations or life-prolonging treatments. Low levels of involvement with palliative care services and advance care planning contributed to the trend of patients dying in acute environments. This review identified a paucity of research that addressed symptom management in the last few days or weeks of life. Conclusions: There is inadequate knowledge regarding the most appropriate location for end-of-life care for people with interstitial lung disease. Early palliative care involvement can improve accordance with end-of-life care wishes. Future research should consider symptom management at the end-of-life and association with location of death.

Quality of life in SSc-ILD patients: Understanding the impact of the ILD and the needs of the SSc-ILD patients and their need for caregivers in France

2021 ◽  
pp. 239719832110139
Author(s):  
Yannick Allanore ◽  
Joel Constans ◽  
Dominique Godard ◽  
Gerard de Pouvourville ◽  
Stephane Bouee ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Systemic Sclerosis ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
Forced Vital Capacity ◽  
Vital Capacity ◽  
Disease Score ◽  
System P ◽  
The Impact

Objectives: The objectives of this study were to describe the impact of systemic sclerosis associated interstitial lung disease, on quality of life, to estimate the correlation between quality of life and severity of lung disease and to assess the impact of interstitial lung disease on caregivers. Methods: Seven investigators included systemic sclerosis associated interstitial lung disease patients from December 2019 to April 2020. Sociodemographics and clinical data were collected. Patients reported outcomes and questionnaires were used with 1 generic patients reported outcome (EQ-5D-5L), 1 specific PRO (Brief Interstitial Lung Disease) and 2 self-reported questionnaires on impact of SSc complications and impact on caregivers. The correlation between forced vital capacity and EQ-5D-5L score was estimated with a multivariate linear regression model adjusted on several covariates. Results: In all, 89 patients were included. 26.4% were males, mean age was 58.2 ± 14.5 years. Mean EQ-5D-5L score = 0.79 ± 0.22 (median = 0.85). Mean EQ-5D-5L visual analog scale score = 60.8 ± 20.4 (median = 61.5). Mean King’s Brief Interstitial Lung Disease score = 58.4 ± 12.7 (median = 58.0). After adjustment on covariates, a significant correlation between forced vital capacity and EQ-5D-5L score was found with an increase of 0.003 of the EQ-5D-5L score for a 1% increase of FVC (p = 0.0096). No significant correlation between forced vital capacity and the EQ-VAS and King’s Brief Interstitial Lung Disease score were found. The impact of SSc on other organs was significantly correlated with EQ- 5D-5L score, respectively, for the impact scores on the lung system (p = 0.0003), heart system (p = 0.0182), Raynaud’s syndrome (p = 0.0015), digestive system (p = 0.0032), joints/muscles (p = 0.0003), skin (p < 0.0001), kidney (p = 0.0052) and gastro-oesophageal reflux (p = 0.0063). Significant correlations between King’s Brief Interstitial Lung Disease score and lung system (p < 0.0001), heart system (p < 0.0001), digital ulcers (p = 0.058), digestive system (p < 0.0001), kidney (p = 0.0004), skin (p = 0.0499) and gastro-oesophageal reflux (p = 0.0033) scores were found 68.5% of patients reported their need for a caregiver to help them in their daily life activities. Conclusion: Our study highlighted the strong burden of systemic sclerosis associated interstitial lung disease` for patients, especially with an impact on quality of life, on other organs manifestations and need for caregivers in their daily life.

scholarly journals Validation of the Chinese version of the Care Evaluation Scale for measuring the quality of structure and process of end-of-life care from the perspective of bereaved family

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Juanjuan Zhao ◽  
Liming You ◽  
Hongmei Tao ◽  
Frances Kam Yuet Wong
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Mainland China ◽  
Chinese Version ◽  
Life Care ◽  
Quality Of Dying ◽  
Bereaved Family ◽  
Quality Of Structure ◽  
Care Evaluation

Abstract Background Assessing the quality of structure and process of end-of-life care can help improve outcomes. There was currently no valid tool for this purpose in Mainland China. The aim of this study is to validate the Chinese version of the Care Evaluation Scale (CES). Methods From January to December 2017, a cross-sectional online survey was conducted among bereaved family members of cancer patients from 10 medical institutes. The reliability of the CES was assessed with Cronbach’s α, and structural validity was evaluated by confirmatory factor analysis. Concurrent validity was tested by examining the correlation between the CES total score and overall satisfaction with end-of-life care, quality of dying and death, and quality of life. Results A total of 305 valid responses were analyzed. The average CES score was 70.7 ± 16.4, and the Cronbach’s α of the CES was 0.967 (range: 0.802–0.927 for the 10 domains). The fit indices for the 10-factor model of CES were good(root-mean-square error of approximation, 0.047; comparative fit index, 0.952; Tucker–Lewis index, 0.946; standardized root mean square residual, 0.053). The CES total score was highly correlated with overall satisfaction with medical care (r = 0.775, P < 0.01), and moderately correlated with patients’ quality of life (r = 0.579, P < 0.01) and quality of dying and death (r = 0.570, P < 0.01). In addition, few associations between CES total score and demographic characteristics, except for the family members’ age. Conclusions The Chinese version of the CES is a reliable and valid tool to evaluate the quality of structure and process of end-of-life care for patients with cancer from the perspective of bereaved family in Mainland China.

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