scholarly journals Upside down solutions: palliative care and COVID-19

2020 ◽  
pp. bmjspcare-2020-002385 ◽  
Author(s):  
Daniel Knights ◽  
Felicity Knights ◽  
Iain Lawrie
Keyword(s):  
Palliative Care ◽  
Symptom Control ◽  
Well Being ◽  
Models Of Care ◽  
Resource Limited ◽  
Relief Of Suffering ◽  
Complex Decision Making ◽  
Complex Decision ◽  
Effective Use

The current COVID-19 pandemic is unprecedented and requires innovation beyond existing approaches to contribute to global health and well-being. This is essential to support the care of people at the end of their lives or who are critically ill from COVID-19 or other life-limiting illnesses. Palliative care (PC) is centred on effective symptom control, promotion of quality of life, complex decision-making, and holistic care of physical, psychological, social and spiritual health. It is ideally placed to both provide and contribute to care for patients, families, communities and colleagues during the pandemic. Where recovery is uncertain, emphasis should be on care and relief of suffering, as well as survival. Where healthcare resources and facilities come under intense pressure, lessons can be learnt from models of care in other settings around the world. This article explores how the field can contribute by ensuring that PC principles and practices are woven into everyday healthcare practice. We explore alternative ways of providing care under such pressure and discuss three areas of learning from resource-limited settings: (1) integration of palliative medicine into everyday practice, (2) simplification of biomedical management plus multidisciplinary teamwork and (3) effective use of volunteers.

Spirituality, quality of life, and locus of control in a palliative care setting

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 18529-18529
Author(s):  
P. H. Thaker ◽  
C. Sun ◽  
D. C. Bodurka ◽  
J. Palmer ◽  
B. Pei ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Locus Of Control ◽  
Internal Control ◽  
Pearson Correlation ◽  
Symptom Control ◽  
Well Being ◽  
Self Report ◽  
Palliative Care Setting

18529 Background: A patient’s spirituality/religious beliefs have a profound role on how one copes with disease & on quality of life (QOL). Perceptions of control play an important role in coping not only with stressful experiences, but also in health outcomes. Therefore, the primary objective was to determine whether patients’ spirituality/ religiosity correlates with quality of life and locus of control. Methods: As part of a pilot study, pts presenting for initial outpatient evaluation in the Department of Symptom Control & Palliative Care were enrolled and completed self-report measures: Functional Assessment of Chronic Illness Therapy-General (FACT-G), FACT-Spiritual Well-Being Scale (FACT-Sp), Duke University Religion Index (DUREL), Locus of Control (LOC), Herth Hope Scale (HHS), Predestination (PDQ), and Hospital Anxiety & Depression Scale (HADS). LOC contained 3 subscales: perceived occurrence of chance, dependence on powerful others, and internal control. Pearson correlation coefficients were calculated to explore the relationship between measures. The Mann-Whitney t-test was used to compare patient scores. Results: One hundred patients (48 men & 52 women) completed the surveys & 90% reported a Christian affiliation. QOL was positively correlated with FACT-Sp (p ≤ 0.001, r = .614) and the DUREL which measures both external/internal religiosity (p ≤ .01, r = .291). Interestingly, there was no gender difference in spirituality as measured by FACT-Sp; however, by the DUREL women engaged more frequently in private religious activity when compared with men (p < 0.001). Men had more perceived internal control with less emphasis on the occurrence of chance events or dependence on powerful others on LOC (p = 0.07), as well as a positive correlation with controlling of one’s own fate as measured by the PDQ (p = 0.1). Conclusions: As oncologists committed to providing comprehensive care, we need to be receptive to the spiritual needs of our patients since it augments their QOL and to empower them to have a sense of control. Future studies need to further define these complex relationships and to recognize possible gender differences. No significant financial relationships to disclose.

scholarly journals Perception of cancer patients in palliative care about quality of life

2018 ◽  
Vol 71 (4) ◽  
pp. 1998-2004 ◽  
Author(s):  
Silmara Meneguin ◽  
Ticiane Dionísio de Sousa Matos ◽  
Maria de Lourdes da Silva Marques Ferreira
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Cancer Patients ◽  
Quantitative Research ◽  
Public Hospital ◽  
Disease Process ◽  
Well Being ◽  
Relief Of Suffering ◽  
Improvement Method

ABSTRACT Objective: To understand the perception of cancer patients in palliative care about quality of life and identify propositions for its improvement. Method: This is a quantitative research carried out with 96 patients in palliative care, admitted in a public hospital from March 2015 to February 2015. The interviews were transcribed and analyzed by the methodology Discourse of the Collective Subject. Results: Quality of life was tied to meanings of health, well-being, happiness and spirituality; however, family and financial problems also had an impact on the perception of the construct. Interventions aimed at the relief of suffering, possibility of return to work and resolution of problems had suggestions for improvement. Conclusion: The results indicate that the concept of quality of life is subjective, tied to personal values and influenced by the repercussions of the health-disease process. In addition, they can guide actions based on interdisciplinary assistance aimed at the real needs of these patients.

scholarly journals Current collaboration between palliative care and neurology: a survey of clinicians in Europe

2020 ◽  
pp. bmjspcare-2020-002322
Author(s):  
David Oliver ◽  
Gian Domenico Borasio ◽  
Simone Veronese ◽  
Raymond Voltz ◽  
Stefan Lorenzl ◽  
...  
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Ethical Issues ◽  
Neurological Diseases ◽  
Physical Symptom ◽  
European Academy ◽  
Complex Decision Making ◽  
Complex Decision ◽  
Lateral Sclerosis

IntroductionThe collaboration between palliative care and neurology has developed over the last 25 years and this study aimed to ascertain the collaboration between the specialties across Europe.MethodsThis online survey aimed to look at collaboration across Europe, using the links of the European Association for Palliative Care and the European Academy of Neurology.Results298 people completed the survey—178 from palliative care and 120 from neurology from over 20 countries across Europe. They reported that there was good collaboration in the care for people with amyotrophic lateral sclerosis and cerebral tumours but less for other progressive neurological diseases. The collaboration included joint meetings and clinics and telephone contacts. All felt that the collaboration was helpful, particularly for maintaining quality of life, physical symptom management, psychological support and complex decision making, including ethical issues.DiscussionThe study shows evidence for collaboration between palliative care and neurology, but with the need to develop this for all neurological illness, and there is a need for increased education of both areas.

The effectiveness of hope-fostering interventions in palliative care: A systematic review and meta-analysis

2021 ◽  
pp. 026921632199472
Author(s):  
Natalia Salamanca-Balen ◽  
Thomas V Merluzzi ◽  
Man Chen
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Palliative Care ◽  
Meta Analysis ◽  
Symptom Burden ◽  
Well Being ◽  
Medium Effect ◽  
Spiritual Well Being ◽  
Quasi Experimental

Background: The concept of hope is an important theme in chronic illness and palliative care and has been associated with increased psycho-spiritual well-being and quality of life. Psycho-spiritual interventions have been described in this population, but no systematic review of hope-enhancing interventions or hopelessness-reducing interventions has been conducted for persons with palliative care diseases. Aim: To describe and assess the effectiveness of interventions in palliative care that measure hope and/or hopelessness as an outcome. Design: This systematic review and meta-analysis was pre-registered (Prospero ID: CRD42019119956). Data sources: Electronic databases, journals, and references were searched. We used the Cochrane criteria to assess the risk of bias within studies. Results: Thirty-five studies (24 randomized controlled trials, 5 quasi-experimental, 6 pre-post studies) involving a total of 3296 palliative care patients were included. Compared with usual/standard cancer care alone, interventions significantly increased hope levels at a medium effect size ( g = 0.61, 95% confidence interval (CI) = 0.28–0.93) but did not significantly reduce hopelessness ( g = −0.08, 95% CI = −0.18 to 0.02). It was found that interventions significantly increase spirituality ( g = 0.70, 95% CI = 0.02–1.37) and decrease depression ( g = −0.29, 95% CI = −0.51 to −0.07), but had no significant effect over anxiety, quality of life, and symptom burden. Overall, quality of evidence across the included studies was rated as low. Conclusions: Evidence suggests that interventions can be effective in increasing hope in palliative care patients.

Implementing a patient-centred outcome measure in daily routine in a specialist palliative care inpatient hospital unit: An observational study

2016 ◽  
Vol 31 (3) ◽  
pp. 275-282 ◽  
Author(s):  
Alze Pereira dos Santos Tavares ◽  
Carolina Paparelli ◽  
Carolina Sassaki Kishimoto ◽  
Silvia Avo Cortizo ◽  
Karen Ebina ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
Missing Data ◽  
Outcome Measure ◽  
Symptom Control ◽  
Daily Practice ◽  
Daily Routine ◽  
Palliative Care Outcome Scale ◽  
Care Outcome

Background: Gathering clinical evidence data on patients’ palliative care needs is paramount to identify changes in outcomes over time and maintaining on-going quality improvement. Implementation of patient-centred outcome measures has been widely recommended. The routine use of these instruments in daily practice is challenging and not widespread. Aim: To implement a patient-centred outcome measure in daily practice and fulfil one quality indicator: improve pain during the 72 h after admission, in at least 75% of patients. Design: An observational prospective study. The Palliative care Outcome Scale was used at admission (T0), third day (T1) and weekly. Setting/participants: Hospital palliative care unit with 17 individual rooms. All patients admitted to the unit were included in the study. Results: Preliminary results ( N = 84) revealed inconsistent and missing data (14%). Symptoms were sub-optimally controlled by T1. Processes changed, and only a team member could apply Palliative care Outcome Scale. Doctors were encouraged to grasp the meaning of Palliative care Outcome Scale results for each patient. The post-pilot included 317 patients. No missing data occurred. There was an improvement in most items between T0 and T1: ‘pain’ and ‘other symptoms’ presented statistical significant differences ( p < 0.05). Conclusion: Implementing a patient-centred outcome measure in a hospital palliative care service is feasible and improves quality of care. Controlling high pain at T0 improved (>80%) by T1. Results became more consistent and symptom control was improved overall. Patients are evaluated based on holistic domains by an interdisciplinary team and we have added a much needed measure to help guide improvement of the quality of care provided.

Designing Palliative Care Facilities to Better Support Patient and Family Care: A Staff Perspective

2022 ◽  
pp. 193758672110590
Author(s):  
Rebecca McLaughlan ◽  
Kieran Richards ◽  
Ruby Lipson-Smith ◽  
Anna Collins ◽  
Jennifer Philip
Keyword(s):  
Palliative Care ◽  
Online Survey ◽  
Family Care ◽  
Well Being ◽  
Care Staff ◽  
Research Attention ◽  
Lengths Of Stay ◽  
Care Facilities ◽  
Philosophy Of Palliative Care

Objective: To contribute staff perspectives on the design of palliative care facilities to better align with the philosophy of palliative care, in support of patient, family, and staff well-being. Background: The receipt of palliative care differs from other inpatient experiences owing to its distinct philosophy of care, longer lengths of stay, a greater presence of family members, and more frequent end-of-life events. While research regarding the optimal design of palliative care environments recognizes these differences, this knowledge has been slow to exert change on the guidelines and procurement processes that determine the design solutions possible within these settings. Sustained research attention is required. Methods: An online survey, comprising a series of open-ended questions, elicited the perceptions of palliative care staff regarding the relationship between the physical environment and the distinct philosophy of palliative care. Results: Responses from 89 Australian-based palliative care professionals confirmed the high value that staff place on environments that offer privacy, homeliness, safety, and access to gardens to assist the delivery of optimum care. Conclusions: Our findings illustrate that the implications of privacy and homeliness extend far beyond the patient room and that homeliness is about more than an aesthetic of comfort. This highlights a broader capacity for design to better support the philosophy of palliative care. Importantly, the data reveal a key relationship between staff well-being and the environments in which they work; environments that are unable to match the quality of care that staff aspire to deliver can engender frustration and distress.

PALLIATIVE CARE FOR CHILDREN WITH SEVERE, REFRACTORY DISEASES. ANALYTICAL REVIEW

2020 ◽  
Vol 66 (6) ◽  
pp. 11-11
Author(s):  
A.A. Ishutin ◽  
◽  
V.S. Stupak ◽  
T.A. Sokolovskaya ◽  
◽  
...  
Keyword(s):  
Palliative Care ◽  
Care Delivery ◽  
Well Being ◽  
Scientific Publications ◽  
Symptoms Of Depression ◽  
Balanced Assessment ◽  
Russian Scientific ◽  
Analytical Review ◽  
Refractory Diseases

Significance. Improving quality and availability of palliative care for children with severe refractory diseases is one of the main objectives of the federal and reginal authorities. The efforts are focused on improving quality of patients’ life, increasing satisfaction of patients (their legal representatives) and families with availability of palliative care, that relieves suffering of patients and reduces symptoms of depression. Purpose of the study. To analyze modern forms and methods of palliative care delivery to children with severe refractory diseases. Material and methods. The authors have conducted a content analysis of scientific publications on organization of palliative care delivery to children with severe refractory diseases. A total of 153 publications were analyzed, including 141 foreign publications for the period from 1998 to the second quarter of 2020. A total of 44 publications have been selected for the analytical review including 28 publications from the international Scopus database, 12 – from the Russian scientific citation index database, including 7 publications from the list of VAK journals (Higher Attestation Commission Journals), and 4 - materials of international medical organizations (WHO, WHA, AHA, European Council). Results. Children with severe refractory diseases need specialized medical, psychological and social assistance. Palliative care includes active and comprehensive support for physical, psychological, social and spiritual well-being of these children, relieving their suffering, from diagnosis to outcome, reducing symptoms of depression in their families, ensuring the best quality of life. More than 21 million children worldwide require palliative care every year, ranging from 20 to 120 per 10,000 children around the world. However, palliative care is often discussed in the late stages of the disease, not always resulting in its early initiation, only little more than half the patients in need receive palliative care, there are differences in tools for assessing care results. It is necessary to early initiate palliative care, increase volumes of its provision, increase the number of specialists and institutions involved in palliative care delivery, as well as implement a comprehensive balanced assessment of care results.

Telemedically Augmented Palliative Care

2014 ◽  
pp. 185-201
Author(s):  
Romina Nemecek ◽  
Patrick Huber ◽  
Sophie Schur ◽  
Eva Masel ◽  
Stefanie Porkert ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Family Caregivers ◽  
Hospital Admissions ◽  
Intervention Group ◽  
Symptom Burden ◽  
Well Being ◽  
Control Group ◽  
User Friendly

Patients with advanced cancer have a substantial symptom burden, which deteriorates their quality of life. Palliative care improves well-being of patients and their family caregivers. Within the scope of a controlled pilot study, a user-friendly telepresence system is developed, which enables patients and family caregivers to send a direct request to a palliative care team. Additionally, a specially tailored database is developed, which contains up to date patient information. Twenty patients with advanced non-small cell lung cancer are consecutively assigned in a control and an intervention group. The intervention group receives the telemedically augmented care, whereas the control group receives standard care. The primary goal of this chapter is to determine the usability and feasibility; the secondary goal is the assessment of the intervention's impact on quality of life and the number of unscheduled hospital admissions. To sum up, telemedically supported ambulatory palliative care may synergistically help to improve safety and quality of life.

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