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 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 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.

Surgical Palliative Care

2018 ◽  
Author(s):  
Zara Cooper ◽  
Emily B. Rivet
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Symptom Relief ◽  
Psychological Needs ◽  
Sudden Onset ◽  
Transitions Of Care ◽  
Patient Comfort ◽  
Health State ◽  
Surgery Patient

Palliative care is a multidisciplinary approach to care that includes relief of suffering and attention to the social, spiritual, physical, and psychological needs of patients and families. The intent of palliative care is to help patients live as well as possible for as long as possible, and relevant domains of palliative care include symptom relief, prognostication, communication with patients, families and clinicians, transitions of care, and end-of-life care. Palliative care is distinct from hospice in many respects including that it can be provided simultaneously with recovery-directed treatments rather than reserved for individuals at end of life. Patients with surgical disease are particularly in need of palliative care due to the common occurrence of severe symptoms such as pain and nausea, complex decision-making, and the often sudden onset of the disease or injury which precludes preparation for the new health state.   Key Words: communication, end-of- life, goals of care, high-risk surgery, palliative, palliative care, palliative surgery, patient comfort, surgical decision-making, surgical prognostication This review contains 3 figures, 10 tables, and 61 references.

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.

Surgical Palliative Care

2018 ◽  
Author(s):  
Zara Cooper ◽  
Emily B. Rivet
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Symptom Relief ◽  
Psychological Needs ◽  
Sudden Onset ◽  
Transitions Of Care ◽  
Patient Comfort ◽  
Health State ◽  
Surgery Patient

Palliative care is a multidisciplinary approach to care that includes relief of suffering and attention to the social, spiritual, physical, and psychological needs of patients and families. The intent of palliative care is to help patients live as well as possible for as long as possible, and relevant domains of palliative care include symptom relief, prognostication, communication with patients, families and clinicians, transitions of care, and end-of-life care. Palliative care is distinct from hospice in many respects including that it can be provided simultaneously with recovery-directed treatments rather than reserved for individuals at end of life. Patients with surgical disease are particularly in need of palliative care due to the common occurrence of severe symptoms such as pain and nausea, complex decision-making, and the often sudden onset of the disease or injury which precludes preparation for the new health state.   This review contains 3 figures, 10 tables, and 61 references. Key Words: communication, end-of- life, goals of care, high-risk surgery, palliative, palliative care, palliative surgery, patient comfort, surgical decision-making, surgical prognostication

Quality of Living and Dying: Pediatric Palliative Care and End-of-Life Decisions in the Netherlands

2018 ◽  
Vol 27 (3) ◽  
pp. 376-384 ◽  
Author(s):  
MARIJE BROUWER ◽  
ELS MAECKELBERGHE ◽  
WILLEMIEN DE WEERD ◽  
EDUARD VERHAGEN
Keyword(s):  
Palliative Care ◽  
The Netherlands ◽  
End Of Life ◽  
Pediatric Palliative Care ◽  
End Of Life Decisions ◽  
Quality Of Dying ◽  
Quality Of Living ◽  
Life Decisions ◽  
The Relationship

Abstract:In 2002, The Netherlands continued its leadership in developing rules and jurisdiction regarding euthanasia and end-of-life decisions by implementing the Euthanasia Act, which allows euthanasia for patients 12 years of age and older. Subsequently, in 2005, the regulation on active ending of life for newborns was issued. However, more and more physicians and parents have stated that the age gap between these two regulations—children between 1 and 12 years old—is undesirable. These children should have the same right to end their suffering as adults and newborn infants. An extended debate on pediatric euthanasia ensued, and currently the debate is ongoing as to whether legislation should be altered in order to allow pediatric euthanasia. An emerging major question regards the active ending of life in the context of palliative care: How does a request for active ending of life relate to the care that is given to children in the palliative phase? Until now, the distinction between palliative care and end-of-life decisions continues to remain unclear, making any discussion about their mutual in- and exclusiveness hazardous at best. In this report, therefore, we aim to provide insight into the relationship between pediatric palliative care and end-of-life decisions, as understood in the Netherlands. We do so by first providing an overview of the (legal) rules and regulations regarding euthanasia and active ending of life, followed by an analysis of the relationship between these two, using the Dutch National Guidelines for Palliative Care for Children. The results of this analysis revealed two major and related features of palliative care and end-of-life decisions for children: (1) palliative care and end-of-life decisions are part of the same process, one that focuses both on quality of living and quality of dying, and (2) although physicians are seen as ultimately responsible for making end-of-life decisions, the involvement of parents and children in this decision is of the utmost importance and should be regarded as such.

scholarly journals MEETING PALLIATIVE CARE NEEDS AT THE END OF LIFE IN PATIENTS WITH INTERSTITIAL LUNG DISEASE

2014 ◽  
Vol 4 (Suppl 1) ◽  
pp. A90.1-A90
Author(s):  
Mariam George ◽  
Anisha Sharma ◽  
Barbara Powell ◽  
Rosie Bronnert
Keyword(s):  
Palliative Care ◽  
Interstitial Lung Disease ◽  
Lung Disease ◽  
End Of Life ◽  
Care Needs ◽  
Palliative Care Needs

scholarly journals Examining Interventions Designed to Support Shared Decision Making and Subsequent Patient Outcomes in Palliative Care: A Systematic Review of the Literature

2018 ◽  
Vol 36 (1) ◽  
pp. 76-88 ◽  
Author(s):  
Dawon Baik ◽  
Hwayoung Cho ◽  
Ruth M. Masterson Creber
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Shared Decision Making ◽  
Patient Outcomes ◽  
Medical Decision ◽  
Cochrane Library ◽  
Shared Decision ◽  
Patient Centered

Background: Shared decision making (SDM) is a key attribute of patient-centered care, which empowers palliative care patients to be able to make optimal medical decisions about end-of-life treatments based on their own values and preferences. Aim: The aim of this systematic literature review is to detail and compare interventions supporting SDM over the last 10 years (January 2008 to December 2017) and to analyze patient/caregiver outcomes at the end of life. Methods: This review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. PubMed, CINAHL, Embase, and Cochrane Library were searched with key search terms: SDM, decision aid, decision support, palliative care, and hospice care. The Mixed Methods Appraisal Tool was used to assess the quality of the included studies. Results: The initial search yielded 2705 articles, and 12 studies were included in the final review. The quality of the studies was modest and technology-enabled delivery modes (e.g., video, DVD, web-based tool) were most commonly used. Patient/caregiver knowledge of end-of-life care was the most common primary outcome across studies. The strength of the association between the SDM interventions and patient/caregiver outcomes varied. Conclusion: The findings from the studies that examined the effects of the SDM intervention on patient outcomes were inconsistent, highlighting the need for further SDM intervention studies among diverse patient populations using consistent measures. Given the availability of health technologies, future studies should focus on developing individual-tailored, technology-enabled interventions to support patient-centered medical decision making.

Surgical Palliative Care

2018 ◽  
Author(s):  
Zara Cooper ◽  
Emily B. Rivet
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
End Of Life ◽  
Symptom Relief ◽  
Psychological Needs ◽  
Sudden Onset ◽  
Transitions Of Care ◽  
Patient Comfort ◽  
Health State ◽  
Surgery Patient

Palliative care is a multidisciplinary approach to care that includes relief of suffering and attention to the social, spiritual, physical, and psychological needs of patients and families. The intent of palliative care is to help patients live as well as possible for as long as possible, and relevant domains of palliative care include symptom relief, prognostication, communication with patients, families and clinicians, transitions of care, and end-of-life care. Palliative care is distinct from hospice in many respects including that it can be provided simultaneously with recovery-directed treatments rather than reserved for individuals at end of life. Patients with surgical disease are particularly in need of palliative care due to the common occurrence of severe symptoms such as pain and nausea, complex decision-making, and the often sudden onset of the disease or injury which precludes preparation for the new health state.   Key Words: communication, end-of- life, goals of care, high-risk surgery, palliative, palliative care, palliative surgery, patient comfort, surgical decision-making, surgical prognostication This review contains 3 figures, 10 tables, and 61 references.

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