scholarly journals Does the Distinctiveness of Palliative Care Research Require Distinct Ethical Guidelines?

JAHR ◽  
2017 ◽  
Vol 8 (1) ◽  
pp. 31-57
Author(s):  
Daniel J. Hurst
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Family Care ◽  
Improve Quality ◽  
Life Care ◽  
Ethical Guidelines ◽  
Care Research ◽  
Rigorous Research

Palliative and end of life care is changing, becoming more widespread and improving for patients. Yet, the current literature in the field suggests that the evidence for palliative and end of life care is somewhat limited. Research on treatment decisions, family care, and advance directions are just a few of the areas that need rigorous research efforts. Palliative care research is essential in order to continue providing effective treatments to those suffering in the last stages of life. Indeed, the goal of good palliative care research is to relieve suffering and to improve quality of life. Similar to any other field, palliative care programs must develop on a research base, and patient care will suffer if it is not backed by sound research. However, weighted against this need are some who maintain that the ethical and practical challenges of palliative care research are unique and insurmountable. This analysis considers if distinct ethical guidelines are needed for palliative care research.

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.

Fact file 9: Palliative care

2017 ◽  
Author(s):  
Daisy Fancourt
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Improve Quality ◽  
Spiritual Support ◽  
Life Care ◽  
Seriously Ill Patients ◽  
Seriously Ill

Palliative care is support for seriously ill patients and their families. The aim of palliative care is to minimize pain and discomfort as much as possible and provide psychological, social, and spiritual support. An important part of palliative care is end-of-life care, which aims to improve quality of life as much as possible while patients are alive and then help them to die with dignity....

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 Dignity Therapy for End-of-Life Care Patients: A Literature Review

2021 ◽  
Vol 8 ◽  
pp. 237437352199695
Author(s):  
Pearl Ed Cuevas ◽  
Patricia Davidson ◽  
Joylyn Mejilla ◽  
Tamar Rodney
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Cultural Context ◽  
Age Groups ◽  
Empirical Support ◽  
Family Care ◽  
Life Care ◽  
Dignity Therapy ◽  
Meta Analyses

Dignity therapy as an intervention has been used for individuals receiving palliative care. The goal of this review is to explore the current state of empirical support to its use for end-of-life care patients. Data sources were articles extracted from search engines PubMed, Cochrane, Embase, CINAHL, Web of Science, and PsycINFO. The years searched were 2009 to 2019 (10-year period). The review process was guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. Results revealed the feasibility, acceptability, satisfaction, and effectiveness of dignity therapy for life-limiting cases/conditions of patients in different age groups. It also highlighted the importance of the therapy setting and the need to apply this in the cultural context. The meaning of dignity therapy to patients and their family care members also emerged. Findings showed most patients displayed the need to leave a legacy and from this their core values surfaced. In conclusion, this review highlighted the contribution of dignity therapy to the holistic care of patients who hope to leave a legacy. The therapy was also relevant to decrease the anxiety; depression, and burden of family members throughout the palliative care period of their loved ones.

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.

scholarly journals The use of behavioural theories in end-of-life care research: A systematic review

2018 ◽  
Vol 32 (6) ◽  
pp. 1055-1077 ◽  
Author(s):  
Anne-Lore Scherrens ◽  
Kim Beernaert ◽  
Lenzo Robijn ◽  
Luc Deliens ◽  
Nele S Pauwels ◽  
...  
Keyword(s):  
Systematic Review ◽  
End Of Life ◽  
Transtheoretical Model ◽  
End Of Life Care ◽  
Reasoned Action ◽  
Data Extraction ◽  
Life Care ◽  
Care Research ◽  
Behavioural Theories

Background: It is necessary to understand behaviours that contribute to improvement in the quality of end-of-life care; use of behavioural theories allows identification of factors underlying end-of-life care behaviour, but little is known about the extent to which, and in what manner, these theories are used in an end-of-life care research context. Aim: To assess the number of end-of-life care studies that have used behavioural theories, which theories were used, to what extent main constructs were explored/measured and which behavioural outcomes were examined. Design: We conducted a systematic review. The protocol was registered on PROSPERO (CRD42016036009). Data sources: The MEDLINE (PubMed), PsycINFO, EMBASE, Web of Science and CINAHL databases were searched from inception to June 2017. We included studies aimed at understanding or changing end-of-life care behaviours and that explicitly referred to individual behavioural theories. Results: We screened 2231 records by title and abstract, retrieved 43 full-text articles and included 31 studies – 27 quantitative (of which four (quasi-)randomised controlled trials) and four qualitative – for data extraction. More than half used the Theory of Planned Behaviour (9), the Theory of Reasoned Action (4) or the Transtheoretical Model (8). In 9 of 31 studies, the theory was fully used, and 16 of the 31 studies focussed on behaviours in advance care planning. Conclusion: In end-of-life care research, the use of behavioural theories is limited. As many behaviours can determine the quality of care, their more extensive use may be warranted if we want to better understand and influence behaviours and improve end-of-life care.

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.

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