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.

scholarly journals End-of-Life Care at a Community Cancer Center

2012 ◽  
Vol 8 (4) ◽  
pp. e40-e44 ◽  
Author(s):  
David E. Cowall ◽  
Bennett W. Yu ◽  
Sandra L. Heineken ◽  
Elizabeth N. Lewis ◽  
Vishal Chaudhry ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
Symptom Management ◽  
End Of Life Care ◽  
Cancer Center ◽  
Improve Quality ◽  
Life Care

Early concurrent palliative care and earlier hospice admission may improve quality of life because of better symptom management and avoidance of aggressive and/or toxic therapies at end of life.

Hospital end-of-life care: families’ free-text notes

2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  
Keyword(s):  
Palliative Care ◽  
Quality Of Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Qualitative Content Analysis ◽  
Free Text ◽  
Life Care ◽  
Quality Aspects ◽  
Care Of The Dying

BackgroundPalliative care strives to improve quality of life for patients with incurable diseases. This approach includes adequate support of the patients’ loved ones. Consequently, loved ones have personal experiences of providing end-of-life care for their next. This is a resource for information and may help to investigate the loved ones’ perspectives on need for improvements.AimTo identify further quality aspects considered important by loved ones to improve the quality of care at the end of life as an addition to quantitative results from the Care of the Dying Evaluation for the German-speaking area (CODE-GER) questionnaire.DesignWithin the validation study of the questionnaire ‘Care of the Dying Evaluation’ (CODETM) GER, loved ones were asked to comment (free text) in parallel on each item of the CODE-GER. These free-text notes were analysed with the qualitative content analysis method by Philipp Mayring.Setting/participantsLoved ones of patients (n=237), who had died an expected death in two university hospitals (palliative and non-palliative care units) during the period from April 2016 to March 2017.Results993 relevant paragraphs were extracted out of 1261 free-text notes. For loved ones, important aspects of quality of care are information/communication, respect of the patient’s and/or loved one’s will, involvement in decision-making at the end of life (patient’s volition) and having the possibility to say goodbye.ConclusionsIt is important for loved ones to be taken seriously in their sorrows, to be informed, that the caregivers respect the patients’ will and to be emotionally supported.Trial registration numberThis study was registered at the German Clinical Trials Register (DRKS00013916).

scholarly journals The facilitators and challenges of dying at home with dementia: A narrative synthesis

2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Eligibility Criteria ◽  
People With Dementia ◽  
Care At Home ◽  
At Home

Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia. Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia. Design: Narrative synthesis of qualitative and quantitative data. Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017. Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’. Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.

Cultural Issues in Palliative Care

2018 ◽  
Author(s):  
Sriram Yennurajalingam
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cultural Differences ◽  
End Of Life Care ◽  
Life Care ◽  
Care Providers ◽  
Cultural Issues ◽  
Medical Interpreter ◽  
Improve Patient

Culture play a significant role in the care of patients receiving Palliative care. Understanding and managing cultural differences in end-of-life care is important as misunderstanding can result in under-treatment and unnecessary suffering for the patient and their care providers. Therefore better understanding can improve patient–physician communication and potentially improve patients’ quality of life, coping, and facilitate patients to make informed decisions and set appropriate priorities with regard to treatment and end-of-life care. This chapter discusses key cultural issues in palliative care, including the concepts of nondisclosure, the importance of the use of a medical interpreter, and the importance of an interdisciplinary team.

scholarly journals ‘. . . and then no more kisses!’ Exploring patients’ experiences on multidrug-resistant bacterial microorganisms and hygiene measures in end-of-life care A mixed-methods study

2019 ◽  
Vol 34 (2) ◽  
pp. 219-230 ◽  
Author(s):  
Maria Heckel ◽  
Alexander Sturm ◽  
Stephanie Stiel ◽  
Christoph Ostgathe ◽  
Franziska A Herbst ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Mixed Methods ◽  
End Of Life ◽  
End Of Life Care ◽  
Multidrug Resistant ◽  
Life Care ◽  
Hygiene Measures ◽  
Patients Wishes

Background: In end-of-life care hygiene, measures concerning multidrug-resistant bacterial microorganisms may contradict the palliative care approach of social inclusion and be burdensome for patients. Objectives: To integrate patients’ perspectives on handling multidrug-resistant bacterial microorganisms at their end of life, their quality of life, the impact of positive multidrug-resistant bacterial microorganisms’ diagnosis, protection and isolation measures on their well-being and patients’ wishes and needs regarding their care. Design: A mixed-methods convergent parallel design embedded quantitative data on the patients’ multidrug-resistant bacterial microorganisms’ trajectory and quality of life assessed by the Schedule for the Evaluation of Individual Quality of Life in qualitative data collection via interviews and focus groups. Data analysis was performed according to Grounded Theory and qualitative and quantitative results were interrelated. Setting/participants: Between March 2014 and September 2015 at two hospitals adult patients diagnosed with multidrug-resistant bacterial microorganisms and treated in a palliative care department or a geriatric ward were included in the sample group. Results: Patients in end-of-life and geriatric care reported emotional and social impact through multidrug-resistant bacterial microorganisms’ diagnosis itself, hygiene measures and lack of information. This impact affects aspects relevant to the patients’ quality of life. Patients’ wishes for comprehensive communication/information and reduction of social strain were identified from the focus group discussion. Conclusion: Patients would benefit from comprehensible information on multidrug-resistant bacterial microorganisms. Strategies minimizing social exclusion and emotional impact of multidrug-resistant bacterial microorganisms’ diagnosis in end-of-life care are needed as well as adaption or supplementation of standard multidrug-resistant bacterial microorganisms’ policies of hospitals.

Early palliative care is associated with improved quality of end-of-life care for women with high risk gynecologic malignancies

2017 ◽  
Vol 145 ◽  
pp. 26
Author(s):  
N.S. Nevadunsky ◽  
C. Zanartu ◽  
P. Pinto ◽  
R. Barrera ◽  
A.R. Van Arsdale ◽  
...  
Keyword(s):  
Palliative Care ◽  
High Risk ◽  
End Of Life ◽  
End Of Life Care ◽  
Life Care ◽  
Gynecologic Malignancies ◽  
Early Palliative Care

scholarly journals Impact of timing and setting of palliative care referral on quality of end-of-life care in cancer patients

Cancer ◽  
2014 ◽  
Vol 120 (11) ◽  
pp. 1743-1749 ◽  
Author(s):  
David Hui ◽  
Sun Hyun Kim ◽  
Joyce Roquemore ◽  
Rony Dev ◽  
Gary Chisholm ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Cancer Patients ◽  
End Of Life Care ◽  
Life Care

23 Findings from a pilot and feasibility trial of a music therapy intervention in specialist palliative care

2018 ◽  
Vol 8 (3) ◽  
pp. 368.2-368
Author(s):  
Lisa Graham-Wisener ◽  
Joanne Reid ◽  
Tracy McConnell ◽  
Kerry McGrillen ◽  
Jenny Kirkwood ◽  
...  
Keyword(s):  
Palliative Care ◽  
Music Therapy ◽  
End Of Life ◽  
End Of Life Care ◽  
Phase Iii ◽  
Feasibility Trial ◽  
Life Care ◽  
Attrition Rates ◽  
Therapy Intervention

IntroductionMusic therapy aligns to the holistic approach to palliative and end-of-life care (PEOLC) with increased prevalence in PEOLC settings (Graham-Wisener et al. 2018). Despite this there is a dearth of high-quality evidence examining the impact of music therapy towards end of life on quality of life (McConnell et al. 2016).AimsThe aim of this pilot and feasibility study was to: test procedures; outcomes and validated tools; estimate recruitment and attrition rates; and calculate the sample size required for a phase III randomised controlled trial.MethodsA single-centre pilot and feasibility trial with patients admitted to a specialist palliative care inpatient unit within the United Kingdom. Participants were randomised (1:1) to either a music therapy intervention of two 30–45 min sessions of music therapy per week for three consecutive weeks or usual care. The primary outcome measure was to evaualte the feasibility of administering the McGill Quality of Life Questionnaire (MQoL) baseline with follow-up measures at one, three and five weeks.Results51 participants were recruited to the trial over a 12 month period. Feasibility of administering music therapy intervention and attrition rates identified one-week follow-up as an appropriate primary outcome. Results suggest a likely effect on MQoL total score between intervention and control arms in particular the existential subscale.ConclusionThe current study resolved a number of issues towards informing robust procedures for a phase III RCT. This data is urgently needed to ensure an evidence-based decision on inclusion of music therapy in palliative care services.References. Graham-Wisener L, Watts G, Kirkwood J, Harrison C, McEwan J, Porter S, Reid J, McConnell TH. Music therapy in UK palliative and end-of-life care: A service evaluation. BMJ supportive & palliative care2018.. McConnell T, Scott D, Porter S. Music therapy for end-of-life care: An updated systematic review. Palliative Medicine2016;30(9):877–883.

scholarly journals Do Palliative Care Teams in Nursing Homes Improve the Quality of End-of-Life Care for Nursing Home Residents?

2019 ◽  
Author(s):  
Helena Temkin-Greener Helena Temkin-Greener ◽  
Dana Mukamel ◽  
Susan Ladwig ◽  
Thomas , Caprio ◽  
Sally Norton ◽  
...  
Keyword(s):  
Palliative Care ◽  
Nursing Home ◽  
Nursing Homes ◽  
End Of Life ◽  
End Of Life Care ◽  
Nursing Home Residents ◽  
Life Care ◽  
Palliative Care Teams
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