Cultural Issues in Palliative Care

Author(s):  
Sriram Yennurajalingam

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.

2003 ◽  
Vol 31 (3) ◽  
pp. 365-376 ◽  
Author(s):  
Joseph P. Pestaner

The increasing life expectancy of terminally-ill people has raised many public policy concerns about end-of-life care. Due to increased longevity and the lack of cures for illnesses like cancer and heart disease, palliative care, particularly pain management, has become an important mode OF medical therapy. Palliative care providers feel that “[h]ealth care professionals have a moral duty to provide adequate palliative care and pain relief, even if such care shortens the patient’s life.” Practitioners of forensic medicine grapple with determining when to classify the death of a person formerly receiving palliative care as a non-natural death. Such classification may be paramount in the enforcement of new statutes that aim at preventing assisted suicide or monitoring the quality of health care, but it potentially places forensic medicine and palliative medicine in adversarial roles.


2020 ◽  
pp. bmjspcare-2020-00239
Author(s):  
Sandra Kurkowski ◽  
Johannes Radon ◽  
Annika R Vogt ◽  
Martin Weber ◽  
Stephanie Stiel ◽  
...  

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).


2018 ◽  
Vol 34 (1) ◽  
pp. 62-69 ◽  
Author(s):  
Erin Relyea ◽  
Brooke MacDonald ◽  
Christina Cattaruzza ◽  
Denise Marshall

Schizophrenia is a serious chronic mental illness that results in marginalization and stigma for sufferers. It is the seventh leading cause for disability worldwide. The symptoms of the illness, including hallucinations, delusions, and extremely disordered thinking and behavior, may also introduce barriers to accessing treatment, education, housing, and employment. Little is known about end-of-life care for individuals with schizophrenia. To address this gap, a scoping review was conducted to enhance understanding of hospice and palliative care for patients with schizophrenia. From this scoping review, 342 unique titles and abstracts were identified through a search of 20 databases, including 11 social science databases, 6 medical databases, and 3 gray literature databases. A total of 32 articles met the inclusion criteria and the following 4 themes were identified: Stigma affecting quality of care and access to care; Issues related to consent and capacity for the patient’s end-of-life care decisions and to appoint substitute decision makers; Best practices for psychosocial interventions, pharmacology, family and health-care collaborations, goals of care, setting, and smoking; and Barriers to care, including setting, communication, provider education, and access to care. The review suggests the importance of mandatory interdisciplinary training practices and policy standards outlining cooperative communication across health-care providers. It highlights gaps in evidence-based research on psychosocial interventions and collaborative frameworks to enable the provision of quality end-of-life care for individuals with schizophrenia.


2018 ◽  
Vol 50 (4) ◽  
pp. 348-354 ◽  
Author(s):  
Rachel Luba ◽  
Mitch Earleywine ◽  
Stacey Farmer ◽  
Melissa Slavin

2019 ◽  
Vol 34 (2) ◽  
pp. 219-230 ◽  
Author(s):  
Maria Heckel ◽  
Alexander Sturm ◽  
Stephanie Stiel ◽  
Christoph Ostgathe ◽  
Franziska A Herbst ◽  
...  

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.


BMJ Open ◽  
2015 ◽  
Vol 5 (6) ◽  
pp. e007492 ◽  
Author(s):  
Bina Mistry ◽  
Daryl Bainbridge ◽  
Deanna Bryant ◽  
Sue Tan Toyofuku ◽  
Hsien Seow

2017 ◽  
Vol 145 ◽  
pp. 26
Author(s):  
N.S. Nevadunsky ◽  
C. Zanartu ◽  
P. Pinto ◽  
R. Barrera ◽  
A.R. Van Arsdale ◽  
...  

Cancer ◽  
2014 ◽  
Vol 120 (11) ◽  
pp. 1743-1749 ◽  
Author(s):  
David Hui ◽  
Sun Hyun Kim ◽  
Joyce Roquemore ◽  
Rony Dev ◽  
Gary Chisholm ◽  
...  

2018 ◽  
Vol 8 (3) ◽  
pp. 368.2-368
Author(s):  
Lisa Graham-Wisener ◽  
Joanne Reid ◽  
Tracy McConnell ◽  
Kerry McGrillen ◽  
Jenny Kirkwood ◽  
...  

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.


2021 ◽  
Vol 15 ◽  
pp. 263235242110459
Author(s):  
Anita Ho ◽  
Joshua S. Norman ◽  
Soodabeh Joolaee ◽  
Kristie Serota ◽  
Louise Twells ◽  
...  

Background: More than a dozen countries have now legalized some form of assisted dying, and additional jurisdictions are considering similar legislations or expanding eligibility criteria. Despite the persistent controversies about the relationship between medicine, palliative care, and assisted dying, many people are interested in assisted dying. Understanding how end-of-life care discussions between patients and specialist palliative care providers may be affected by such legislation can inform end-of-life care delivery in the evolving socio-cultural and legal environment. Aim: To explore how the Canadian Medical Assistance in Dying legislation affects end-of-life care discussions between patients and multidisciplinary specialist palliative care providers. Design: Qualitative thematic analysis of semi-structured interviews. Participants: Forty-eight specialist palliative care providers from Vancouver (n = 26) and Toronto ( n = 22) were interviewed in person or by phone. Participants included physicians ( n = 22), nurses ( n = 15), social workers ( n = 7), and allied health professionals ( n = 4). Results: Qualitative thematic analysis identified five notable considerations associated with Medical Assistance in Dying affecting end-of-life care discussions: (1) concerns over having proactive conversations about the desire to hasten death, (2) uncertainties regarding wish-to-die statements, (3) conversation complexities around procedural matters, (4) shifting discussions about suffering and quality of life, and (5) the need and challenges of promoting open-ended discussions. Conclusion: Medical Assistance in Dying challenges end-of-life care discussions and requires education and support for all concerned to enable compassionate health professional communication. It remains essential to address psychosocial and existential suffering in medicine, but also to provide timely palliative care to ensure suffering is addressed before it is deemed irremediable. Hence, clarification is required regarding assisted dying as an intervention of last resort. Furthermore, professional and institutional guidance needs to better support palliative care providers in maintaining their holistic standard of care.


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