B. Pekarsky, Amy E. Seymour-Walsh, Catherine Wright, Mathew Hooper, Colleen Carter
{"title":"The role of ambulance services in reducing the gaps in access to end-of-life care: from conversations to policy","authors":"B. Pekarsky, Amy E. Seymour-Walsh, Catherine Wright, Mathew Hooper, Colleen Carter","doi":"10.1080/09699260.2020.1871174","DOIUrl":"https://doi.org/10.1080/09699260.2020.1871174","url":null,"abstract":"Reducing the gap between the need for and access to effective and best practice care at the end-of-life is a goal of the Australian palliative care sector. Largely absent from the suite of plans, strategies and frameworks that map Australia’s path to quality end-of-life care for all patients isPalliatiev CAre Australia the role of ambulance services. Instead, patients’ need for these services tends to be characterized as an undesirable consequence of an under-resourced palliative care sector and no longer necessary when the sector is fully resourced. We hypothesize that one reason for this characterization is that the ambulance and palliative care sectors have fundamentally different perspectives of end-of-life care. We conclude that further if the palliative care sector were to partner with ambulance services, the gap between the need for and access to end-of-life care would be reduced more rapidly and cost effectively.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"98 - 105"},"PeriodicalIF":1.7,"publicationDate":"2021-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2020.1871174","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44094024","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
A. Carter, M. Arab, C. Cameron, M. Harrison, Charlotte Pooler, Ian McEwan, M. Austin, J. Helmer, Gurkan Ozel, Jessica Heathcote, N. Reardon, Elizabeth Anderson, M. Carey, R. S. Moxam, S. Crick
{"title":"A national collaborative to spread and scale paramedics providing palliative care in Canada: Breaking down silos is essential to success","authors":"A. Carter, M. Arab, C. Cameron, M. Harrison, Charlotte Pooler, Ian McEwan, M. Austin, J. Helmer, Gurkan Ozel, Jessica Heathcote, N. Reardon, Elizabeth Anderson, M. Carey, R. S. Moxam, S. Crick","doi":"10.1080/09699260.2020.1871173","DOIUrl":"https://doi.org/10.1080/09699260.2020.1871173","url":null,"abstract":"A national collaborative has been launched in Canada to spread and scale up the Paramedics Providing Palliative Care model. This builds on the knowledge that paramedics in the 9-1-1 (emergency/unscheduled) and scheduled models of care are both historically and currently asked by the public to provide urgent symptom relief within the context of a palliative approach, and that approximately 40% of dying people visit the emergency department in the last two weeks of life despite 70% wishing to die at home. A model of care including a palliative care clinical practice guideline or protocol, specific training, and a mechanism for sharing of goals of care, has been proven to improve the palliative and end of life experience for patients with palliative care needs and their families. It increases the comfort and confidence of paramedics and has benefits to the broader health system. Meaningful and very broad stakeholder engagement and inter-sectoral collaboration is absolutely essential to the success of this innovative approach to care.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"59 - 65"},"PeriodicalIF":1.7,"publicationDate":"2021-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2020.1871173","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"42087239","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
L. Goodwin, Alyesha Proctor, K. Kirby, S. Black, L. Pocock, S. Richardson, J. Stonehouse, H. Taylor, S. Voss, J. Benger
{"title":"Staff stakeholder views on the role of UK paramedics in advance care planning for patients in their last year of life","authors":"L. Goodwin, Alyesha Proctor, K. Kirby, S. Black, L. Pocock, S. Richardson, J. Stonehouse, H. Taylor, S. Voss, J. Benger","doi":"10.1080/09699260.2021.1872140","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872140","url":null,"abstract":"Background Early advance care planningh as clear benefits for patients approaching the end of their life, yet many of those attended by UK paramedics do not have this planning in place. Aims To explore staff stakeholder views on the role of UK paramedics in advance care planning, including the use of the Gold Standards Framework Proactive Identification Guidance for screening and referral of patients. Methods In-depth semi-structured telephone interviews with paramedics, general practitioners, Emergency Department and community doctors and nurses in the South West of England. Results Seventeen staff stakeholders participated. Four main themes were identified: a lack of advance care planning; variation across health conditions; a lack of joined-up care; poor-quality end of life conversations. Paramedic use of the Gold Standards Framework Proactive Identification Guidance to screen and refer patients for advance care planning was seen as feasible and acceptable, with perceived benefitssuch as identifying patients not accessing primary care, and the potential to reduce avoidable hospital admissions. Conclusions UK paramedics are well-placed toscreen and refer patients for advance care planning. Further research is needed to explore how this type of intervention might be developed to fit into a community-centred approach aimed at improving advance care planning.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"76 - 83"},"PeriodicalIF":1.7,"publicationDate":"2021-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872140","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"45273360","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Bibliography","authors":"J. Gabbard, N. Pajewski, Kathryn, E. Callahan","doi":"10.1080/09699260.2021.1890364","DOIUrl":"https://doi.org/10.1080/09699260.2021.1890364","url":null,"abstract":"","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"114 - 126"},"PeriodicalIF":1.7,"publicationDate":"2021-03-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1890364","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44035244","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
F. Binder, C. M. Ungaro, M. B. Bonella, Carlos Cafferata, D. Giunta, B. Ferreyro
{"title":"Timing of palliative care referral in patients with advanced Non-Small Cell Lung Cancer: a retrospective cohort study","authors":"F. Binder, C. M. Ungaro, M. B. Bonella, Carlos Cafferata, D. Giunta, B. Ferreyro","doi":"10.1080/09699260.2021.1890914","DOIUrl":"https://doi.org/10.1080/09699260.2021.1890914","url":null,"abstract":"Introduction: Early palliative care referral is recommended for patients with Stage IV Non-Small Cell Lung Cancer (NSCLC) irrespective of the decision to administer cancer-directed therapies. Diagnosis-to-referral and referral-to-death intervals, proposed as measures of quality of care, are rarely reported in low-and-middle income settings. Objective: to estimate the 6-month cumulative incidence of palliative care referrals and the length of referral-to-death intervals among patients with Stage IV NSCLC at a teaching hospital in Argentina. Methods: Patients with Stage IV NSCLC diagnosed between 2012 and 2017 were followed up until December 2019. We retrieved the first contact with palliative care services and date of death from centralized Electronic Health Records. Cumulative incidence of palliative care referrals was estimated by fitting a Fine & Gray competing risks model. Results: Ninety-two patients were included. Median age was 71.5 years (IQR 63–79 years), 55% were women. Median survival time was 375 days (95% CI: 204–508 days). Considering death as a competing risk, the 6-month cumulative incidence of palliative care referrals was 37% (95% CI: 27% to 47%). Among referred patients, the median referral-to-death interval was 31 days. Discussion: Further research should focus on identifying and overcoming barriers to timely palliative care referrals in this population.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"331 - 336"},"PeriodicalIF":1.7,"publicationDate":"2021-03-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1890914","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46933343","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Citizens appreciate talking about death and learning end-of-life care – a mixed-methods study on views and experiences of 5469 Last Aid Course participants","authors":"G. Bollig, Frans Brandt Kristensen, D. L. Wolff","doi":"10.1080/09699260.2021.1887590","DOIUrl":"https://doi.org/10.1080/09699260.2021.1887590","url":null,"abstract":"Background Most people would prefer to die at home. Engaging citizens in end-of-life care may contribute to making home death possible for more people. Aims To test the feasibility and acceptability of Last Aid Courses in different countries and to explore the views and experiences of participants with the course. Methods International multi-centre study with a questionnaire based mixed methods design. 408 Last Aid Courses were held in three different countries. Of 6014 course participants, 5469 participated in the study accounting for a response rate of 91%. Results The median age of participants was 56 years. 88% were female. 76% of participants rated the course “very good”. 99% would recommend it to others. Findings from the qualitative data revealed that participants found the atmosphere comfortable; instructors competent; appreciated the course format, duration, topics and discussions about life and death. Conclusions Last Aid Courses are both feasible and accepted by citizens from different countries. They have a huge potential to inform citizens and to encourage them to engage in care at home. Future research should investigate the long-term effects of the course on the ability and willingness of participants to provide end-of-life care and the impact on the number of home-deaths.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"140 - 148"},"PeriodicalIF":1.7,"publicationDate":"2021-02-25","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1887590","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43484973","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
{"title":"Discordant Beliefs and Practices of Physicians Referring Cancer Patients to Palliative Care","authors":"M. Al-Shahri, Heba Ateya, Dafer M. Al-Shehri","doi":"10.1080/09699260.2021.1887588","DOIUrl":"https://doi.org/10.1080/09699260.2021.1887588","url":null,"abstract":"Objectives We aimed to examine the concordance between beliefs and practices of physicians regarding the timing of referring cancer patients to a PC team. Methods We reviewed records of cancer deaths in a palliative care unit (PCU) over three years. Physicians who initiated the referral to PC completed a questionnaire. The referral time was categorized into early (> 90 days), intermediate (31–90 days) or late (≤ 30 days). Results For 208 cancer deaths (63% females), the median age was 55 years. The median referral time was 33 days. Only 9.6% of patients were referred early, while the majority were either referred late (47.1%) or fell in the intermediate category (43.3%). All of the referring physicians believed that a PC service is essential in an oncology center and 73.7% stated that cancer patients should be referred to PC at diagnosis or when cancer becomes incurable. No patient- or physician-related factors were significantly associated with the referral time. Conclusions Despite the unanimous belief among this group of physicians that cancer patients should be referred to PC at or before diagnosing its incurability, initiation of early referrals to PC was remarkably rare. Such a striking discordance between beliefs and practices merits further investigation.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"326 - 330"},"PeriodicalIF":1.7,"publicationDate":"2021-02-21","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1887588","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"46166409","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
S. Rainsford, Sally Hall Dykgraaf, Rosny Kasim, Christine B Phillips, N. Glasgow
{"title":"Strengthening advance care planning in rural residential aged care through multidisciplinary educational case conferences: A hybrid implementation-effectiveness study","authors":"S. Rainsford, Sally Hall Dykgraaf, Rosny Kasim, Christine B Phillips, N. Glasgow","doi":"10.1080/09699260.2021.1872136","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872136","url":null,"abstract":"Strengthening advance care planning in residential aged care is now a priority. This hybrid implementation-effectiveness study aimed to implement and evaluate the effectiveness of multidisciplinary educational case conferences (MuDECC) in end-of-life planning in two Australian rural residential aged care facilities. MuDECCs are hour long meetings with the resident (where appropriate), their family/guardian and a multidisciplinary team of healthcare providers (including community pharmacists) to discuss and plan for the resident’s future end-of-life care needs. Between November 2018 and July 2019 ten MuDECCs were convened. The implementation was evaluated using a utilisation-focused approach. Intervention outcomes were documented advance care plans, availability of anticipatory end-of-life medications, and participant satisfaction. Of 23 persons who died during the study period, 65% had a documented end-of-life care plan; 57% had anticipatory medications charted. MuDECCs were reported to be acceptable, effective, and a valuable learning experience. By providing a framework for informed decision making and joint problem sharing, MuDECCs were effective in facilitating advance care planning and prescribing of anticipatory medications. However, MuDECCs were time consuming to organise with disproportionate responsibilities or time commitments borne by several key individuals. The necessary personal and professional capital to implement MuDECCs may be limited or unavailable in some rural locations.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"199 - 208"},"PeriodicalIF":1.7,"publicationDate":"2021-02-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872136","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"43772180","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
Gourav Banerjee, A. Rose, M. Briggs, P. Plant, Mark I. Johnson
{"title":"Could kinesiology taping of the inspiratory muscles help manage chronic breathlessness? An opinion paper","authors":"Gourav Banerjee, A. Rose, M. Briggs, P. Plant, Mark I. Johnson","doi":"10.1080/09699260.2021.1872137","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872137","url":null,"abstract":"Chronic or refractory breathlessness adversely affects quality of life. Current treatment strategies for managing breathlessness are often inadequate in providing complete relief. Kinesiology taping is generally used in musculoskeletal practice for preventive and rehabilitative purposes. Recently, our attention was drawn to the plausible mechanism(s) and indication for use of kinesiology taping for managing chronic breathlessness. We present a brief review of the scientific rationale and efficacy of kinesiology taping for respiratory function-related outcomes. Through this publication, we hope to catalyse discussions amongst palliative care professionals and researchers on the potential use of kinesiology taping in the management of chronic breathlessness.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"30 1","pages":"16 - 20"},"PeriodicalIF":1.7,"publicationDate":"2021-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872137","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44447124","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
T. Beng, Yeoh Kee Ying, Cheah Ai Xin, Lim Ee Jane, D. Lin, Lim Poh Khuen, D. Capelle, Sheriza Izwa Zainuddin, Loh Ee Chin, Lam Chee Loong
{"title":"The experiences of well-being of family caregivers in palliative care: A qualitative study using thematic analysis","authors":"T. Beng, Yeoh Kee Ying, Cheah Ai Xin, Lim Ee Jane, D. Lin, Lim Poh Khuen, D. Capelle, Sheriza Izwa Zainuddin, Loh Ee Chin, Lam Chee Loong","doi":"10.1080/09699260.2021.1872135","DOIUrl":"https://doi.org/10.1080/09699260.2021.1872135","url":null,"abstract":"Background Family caregivers play an important role in supporting patients at the end of life. Although providing care for palliative care patients can be inherently stressful, it is possible for family caregivers to experience both positive experiences and stress simultaneously. Understanding these positive experiences can be helpful to aid counterbalancing the negative aspect of caregiving. Objective and Methods Therefore, we conducted a qualitative study using face-to-face interviews with semi-structured questions to explore the experiences of well-being of palliative care family caregivers from a positive perspective. The entire sample consisted of 18 family members caring for cancer patients and 2 family members caring for patients with motor neuron disease. The interviews were transcribed verbatim and thematically analyzed with qualitative research software NVIVO. Results The themes generated from the analysis are: (1) Acceptance, (2) Gratitude, (3) Hope, (4) Happiness and (5) Support. Conclusions The 5 themes provide 6 constructs for independent intervention. Understanding these themes that promote caregiver well-being can be a guide for us to take care of our family caregivers.","PeriodicalId":45106,"journal":{"name":"PROGRESS IN PALLIATIVE CARE","volume":"29 1","pages":"209 - 216"},"PeriodicalIF":1.7,"publicationDate":"2021-01-24","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1080/09699260.2021.1872135","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"44098784","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}