Underutilisation of EPaCCS (Electronic Palliative Care Coordination Systems) in end-of life-care: a cross-sectional study

2021 ◽  
pp. bmjspcare-2020-002798
Author(s):  
Lucy Pocock ◽  
Richard Morris ◽  
Lydia French ◽  
Sarah Purdy

ObjectiveTo support greater personalisation of end-of-life care, Electronic Palliative Care Coordination Systems (EPaCCS) have been implemented across England. Here, we describe patient factors associated with dying with an EPaCCS record and explore the association between having an EPaCCS record with cause and place of death.MethodThis is a cross-sectional study using routinely collected data. Data were extracted from primary care records in 20 of 86 general practices within one Clinical Commissioning Group in England. All deaths (n=1723) recorded between 22 February 2018 and 21 February 2019 were included to determine whether the deceased patient had an EPaCCS record at the time of death, a range of demographic factors, place of death and cause of death.ResultsOnly 18% of the sample died with an EPaCCS record, and people who died of a non-cancer cause were less likely to have an EPaCCS record than those who died of cancer (OR=0.41; 95% CI 0.31 to 0.55). Adjusting for patient demographic factors and cause of death, having an EPaCCS record was strongly associated with dying in the community (OR=5.10; 95% CI 3.70 to 7.03).ConclusionsA small proportion of this sample died with an EPaCCS record, despite evidence of an association with dying in the community.

BMJ Open ◽  
2021 ◽  
Vol 11 (9) ◽  
pp. e051735
Author(s):  
Qinqin Cheng ◽  
Yinglong Duan ◽  
Hongling Zheng ◽  
Xianghua Xu ◽  
Khalid Khan ◽  
...  

ObjectivesThis study aimed to investigate the knowledge and attitudes of patients with cancer of palliative care and their preferences regarding end-of-life care in mainland China.DesignA cross-sectional study.SettingThis study was conducted in a tertiary cancer hospital.ParticipantsTwo hundred forty-seven patients with cancer were recruited and consented to fill out the questionnaires.Outcome measuresThe participants’ knowledge and attitudes of palliative care and their preferences of end-of-life care involving place of care, place of death, truth disclosure and treatments during end-of-life were measured.ResultsIn total, 239 questionnaires were valid. The vast majority of patients with cancer (81.2%) had never heard about palliative care or related policies, and only a few of them (5.8%) had somewhat or totally understanding of palliative care. Most participants (75.3%) had supportive attitudes towards palliative care. In terms of preferences for end-of-life care, most patients with cancer preferred to be cared for at home at the end of their life and to die at home. The majority of patients with cancer (65.7%) wanted to know their diagnosis or prognosis of the disease, regardless of the type of disease. More than half of the participants (54%) wished to improve their quality of life rather than prolong their life expectancy. More than a third of the patients with cancer preferred to entrust a family member or agent to sign medical decision agreements for them.ConclusionsIt is essential for healthcare providers to improve the understanding of patients with cancer of palliative care and be aware of the end-of-life care preferences of patients with cancer, in order to provide support that enables patients with cancer to receive end-of-life care that is accordant with their wishes.


2020 ◽  
pp. 003022282093692
Author(s):  
Radka Bužgová ◽  
Radka Kozáková ◽  
Michal Bar ◽  
Monika Škutová ◽  
Pavel Ressner ◽  
...  

The objective was to identify the attitudes of progressive neurological disease (PND) patients and their family members regarding end-of-life care, and their worries about dying. The sample included 327 participants. The Attitudes of Patients with PND to End-of-Life Care questionnaire was used to collect the data. Statistically significant differences in the assessment of attitudes towards end-of-life care between patients and family members were identified (p < 0.001). Family members more frequently favored patients being kept alive at any cost; patients more commonly wished to have their end of life under control. Respondents most frequently deferred to doctors when it came to decisions on treatment to keep patients alive. However, both patients and family members wanted patients to be able to decide on their treatment by leaving a written record of their previously stated wishes. The demands of patients and their families regarding end-of-life care should be documented in individual care plans.


2019 ◽  
Vol 26 (7-8) ◽  
pp. 2006-2015 ◽  
Author(s):  
Manchumad Manjavong ◽  
Varalak Srinonprasert ◽  
Panita Limpawattana ◽  
Jarin Chindaprasirt ◽  
Srivieng Pairojkul ◽  
...  

Background: Achieving a “good death” is a major goal of palliative care. Nurses play a key role in the end-of-life care of older patients. Understanding the perceptions of both older patients and nurses in this area could help improve care during this period. Objectives: To examine and compare the preferences and perceptions of older patients and nurses with regard to what they feel constitutes a “good death.” Research design: A cross-sectional study. Participants and research context: This study employed a self-report questionnaire that asked about various options for end-of-life care. It was distributed to older patients who attended the outpatient clinic of internal medicine and nurses who worked at two medical schools in Thailand from September 2017 to February 2018. Patients were asked to respond to the questions as if they were terminally ill, and nurses were asked to imagine how older patients would answer the questions. Ethical consideration: Approval from Institutional Review Board was obtained. Findings: A total of 608 patients and 665 nurses responded to the survey. Nurses agreed with concepts of palliative care, but they rated themselves as having poor knowledge. The patient respondents felt that it was most important that they receive the full truth about their illnesses (29.2%). The nurses thought the most important issue was relief of uncomfortable symptoms (25.2%). On seven out of the 13 questions, nurses overestimated the importance of the relevant issue to patients and underestimated the importance on one question (p < 0.05). Discussion: Both nurses and older patients signified concepts of palliative care, but nurses felt that they lacked adequate knowledge. Nurses estimated that patients would have positive attitudes toward autonomy and the closure of life affairs to a significantly greater degree than the patient respondents. Conclusions: We recommend that palliative care education be improved and that steps be taken to allow for more effective nurse–patient communication with regard to the patients’ end-of-life wishes.


2016 ◽  
Vol 30 (9) ◽  
pp. 843-853 ◽  
Author(s):  
Charis Wei Ling Ng ◽  
SK Cheong ◽  
A Govinda Raj ◽  
WSK Teo ◽  
IYO Leong

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