scholarly journals Quality Indicators in Pediatric Palliative Care: Considerations for Latin America

Children ◽  
2021 ◽  
Vol 8 (3) ◽  
pp. 250
Author(s):  
Gregorio Zuniga-Villanueva ◽  
Jorge Alberto Ramos-Guerrero ◽  
Monica Osio-Saldaña ◽  
Jessica A. Casas ◽  
Joan Marston ◽  
...  

Pediatric palliative care is a growing field in which the currently available resources are still insufficient to meet the palliative care needs of children worldwide. Specifically, in Latin America, pediatric palliative care services have emerged unevenly and are still considered underdeveloped when compared to other regions of the world. A crucial step in developing pediatric palliative care (PPC) programs is delineating quality indicators; however, no consensus has been reached on the outcomes or how to measure the impact of PPC. Additionally, Latin America has unique sociocultural characteristics that impact the perception, acceptance, enrollment and implementation of palliative care services. To date, no defined set of quality indicators has been proposed for the region. This article explores the limitations of current available quality indicators and describes the Latin American context and how it affects PPC development. This information can help guide the creation of standards of care and quality indicators that meet local PPC needs while considering the sociocultural landscape of Latin America and its population.

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 788-788
Author(s):  
Daniel David ◽  
Abraham Brody ◽  
Tina Sadarangani ◽  
Bei Wu ◽  
Tara Cortez

Abstract Many residents of Assisted Living (AL) confront serious illness and therefore might benefit from greater access to Palliative Care Services to improve quality of life. We surveyed resident records and AL nursing staff to identify patients in need of Palliative Care. Preliminary findings showed that nurses predicted 23% would not be alive and 49% would no longer live in AL. A majority of residents were over the age of 90, yet 30% did not have a reported code status. These findings suggest that a substantial portion of AL residents may have unmet needs with respect to palliative care. Future interventions are needed to support advance care planning conversations and make palliative care more accessible to this population.


2021 ◽  
Author(s):  
Felicity Hasson ◽  
Paul Slater ◽  
Anne Fee ◽  
Tracey McConnell ◽  
Sheila Payne ◽  
...  

Abstract BackgroundGlobally COVID-19 has had a profound impact on the provision of healthcare, including palliative care. However, there is little evidence about the impact of COVID-19 on delivery of out-of-hours specialist palliative care services in the United Kingdom. The aim of the study is to investigate the impact of the COVID-19 pandemic on the delivery of out-of-hours community-based palliative care services.Methods A national online census survey of managers of adult hospices in the United Kingdom was undertaken. Survey were emailed to managers of adult hospices (n=150) who provided out-of-hours community palliative care services. Fifteen questions related specifically to the impact of COVID-19 and data were analysed thematically.ResultsEighty-one responses to the survey were returned (54% response rate); 59 were complete of which 47 contained COVID-19 data. Findings indicated that COVID-19 impacted on out-of-hours community-based palliative care. To meet increased patient need, hospices reconfigured services; redeployed staff; and introduced new policies and procedures to minimize virus transmission. Lack of integration between charitably and state funded palliative care providers was reported. The interconnected issues of the use and availability of Personal Protective Equipment (n=21) and infection control screening (n=12) resulted in changes in nursing practices due to fear of contagion for patients, carers and staff. Conclusions Survey findings suggest that due to increased demand for community palliative care services, hospices had to rapidly adapt and reconfigure services. Even though this response to the pandemic led to some service improvements, in the main, out-of-hours service reconfiguration resulted in challenges for hospices, including workforce issues, and availability of resources such as Personal Protective Equipment. These challenges were exacerbated by lack of integration with wider healthcare services. More research is required to fully understand the implications of such changes on the quality of care provided.


Author(s):  
Richard A. Taylor ◽  
J. Nicholas Dionne-Odom ◽  
Erin R. Currie ◽  
Macy Stockdill ◽  
Marie A. Bakitas

Access to palliative care remains challenging to those living in rural areas across the globe. This disparity of care leaves many without critically important palliative care services across their illness trajectory, especially in its final stages. Creative strategies to meet the palliative care needs of rural patients such as telehealth, videoconferencing specialists’ consultation, and web-based resources exist. Using these strategies where available can address some palliative care disparities and access to care in rural areas that were previously absent. Developing clinical capacity of rural clinicians through enhanced education in primary palliative care in training programs, expanding services with the use of nurse practitioners, and using palliative care–trained community lay health workers are also strategies to improve access. Additionally, by developing rural hospital providers’ knowledge and skills to provide primary palliative care in tasks such as establishing care goals, communication, and basic symptom control may prevent many transfers to academic centers miles away. Through ongoing education and primary palliative care training and innovations in bringing specialty care to rural areas, “palliative care everywhere” will soon be a reality.


2016 ◽  
Vol 12 (2) ◽  
pp. 149-150 ◽  
Author(s):  
Angelique Wong ◽  
Akhila Reddy ◽  
Janet L. Williams ◽  
Jimin Wu ◽  
Diane Liu ◽  
...  

QUESTION ASKED: What are graduate medical education trainees’ attitudes and beliefs regarding palliative care, what is their awareness of the availability and role of palliative care services, and does previous exposure to a palliative care rotation facilitate a better awareness of palliative care? SUMMARY ANSWER: A vast majority of oncology trainees perceived palliative care services to be beneficial for patient care (92%) and were supportive of mandatory palliative care training (74%). Surgical oncology trainees and trainees with no previous palliative care exposure were significantly less likely to consult palliative care and had significantly less awareness of palliative care. METHODS: We conducted an institutional review board–approved online survey to determine awareness of palliative care among graduate medical trainees at MD Anderson. One hundred seventy oncology trainees who completed at least 9 months of training in medical, surgical, gynecologic, and radiation oncology fellowship and residency program during the 2013 academic year completed an online questionnaire. Descriptive, univariate, and multivariate analyses were performed. BIAS, CONFOUNDING FACTOR(S), DRAWBACKS: Although there was a substantial response rate (78%), the results may not be generalizable as the survey was conducted at a single institution. Also, the frequency of palliative care referrals is self-reported. REAL-LIFE IMPLICATIONS: Our findings suggest that exposure to palliative care training may lead to increased awareness of palliative care among oncologists, and thus, increased overall and early referrals to palliative care. Surgical oncology trainees may benefit from increased exposure to palliative care rotations. More research is needed to characterize the impact of training on referral patterns to palliative care. In the meantime, efforts should be made to include formal palliative care rotations in oncology training. [Table: see text]


2015 ◽  
Vol 14 (3) ◽  
pp. 284-301 ◽  
Author(s):  
David S. Busolo ◽  
Roberta L. Woodgate

ABSTRACTObjective:Cancer incidence and mortality are increasing in Africa, which is leading to greater demands for palliative care. There has been little progress in terms of research, pain management, and policies related to palliative care. Palliative care in Africa is scarce and scattered, with most African nations lacking the basic services. To address these needs, a guiding framework that identifies care needs and directs palliative care services could be utilized. Therefore, using the supportive care framework developed by Fitch (Fitch, 2009), we here review the literature on palliative care for patients diagnosed with cancer in Africa and make recommendations for improvement.Method:The PubMed, Scopus, CINAHL, Web of Science, Embase, PsycINFO, Social Sciences Citation Index, and Medline databases were searched. Some 25 English articles on research from African countries published between 2004 and 2014 were selected and reviewed. The reviewed literature was analyzed and presented using the domains of the supportive care framework.Results:Palliative care patients with cancer in Africa, their families, and caregivers experience increasing psychological, physical, social, spiritual, emotional, informational, and practical needs. Care needs are often inadequately addressed because of a lack of awareness as well as deficient and scattered palliative care services and resources. In addition, there is sparse research, education, and policies that address the dire situation in palliative care.Significance of Results:Our review findings add to the existing body of knowledge demonstrating that palliative care patients with cancer in Africa experience disturbing care needs in all domains of the supportive care framework. To better assess and address these needs, holistic palliative care that is multidomain and multi-professional could be utilized. This approach needs to be individualized and to offer better access to services and information. In addition, research, education, and policies around palliative care for cancer patients in Africa could be more comprehensive if they were based on the domains of the supportive care framework.


2021 ◽  
Vol 19 (3) ◽  
pp. 240-246
Author(s):  
Vivian W.G. Burgers ◽  
Winette T.A. van der Graaf ◽  
Daniël J. van der Meer ◽  
Martin G. McCabe ◽  
Anita W. Rijneveld ◽  
...  

Historically, adolescent and young adult (AYA) patients with cancer, diagnosed for the first time at age 15 through 39 years, have often been identified as a “lost tribe” without a medical “home”; neither pediatric nor adult oncology services were able to provide age-appropriate care to this specific group. Internationally, AYA care programs are being established to bridge the gap between the age-defined healthcare worlds and to address the specific needs of AYAs with cancer. However, AYA care programs mostly focus on improving cure rates and addressing survivorship issues, and direct less attention to the unique needs of those living with an uncertain and/or poor cancer prognosis. Additionally, palliative care services are typically poorly equipped to address the age-specific needs of this group. Given that increasingly more AYAs with an uncertain and/or poor cancer prognosis are gaining life years because of novel treatments, and sometimes even face the prospect of long-term disease control, AYA care programs should address the unique palliative care needs of this “new” lost tribe within AYA oncology. This report provides a definition and description of the AYA population living with an uncertain and/or poor cancer prognosis in terms of epidemiologic, clinical, and psychosocial characteristics and challenges, and provides perspectives for future research and care initiatives. It also highlights the need to comprehensively examine the experience of AYAs who are living with uncertain and/or poor cancer prognosis to adjust best care practices for this unique group.


2018 ◽  
Vol 32 (8) ◽  
pp. 1344-1352 ◽  
Author(s):  
Rossana De Palma ◽  
Daniela Fortuna ◽  
Sarah E Hegarty ◽  
Daniel Z Louis ◽  
Rita Maria Melotti ◽  
...  

Background: Multiple studies demonstrate substantial utilization of acute hospital care and, potentially excessive, intensive medical and surgical treatments at the end-of-life. Aim: To evaluate the relationship between the use of home and facility-based hospice palliative care for patients dying with cancer and service utilization at the end of life. Design: Retrospective, population-level study using administrative databases. The effect of palliative care was analyzed between coarsened exact matched cohorts and evaluated through a conditional logistic regression model. Setting/participants: The study was conducted on the cohort of 34,357 patients, resident in Emilia-Romagna Region, Italy, admitted to hospital with a diagnosis of metastatic or poor-prognosis cancer during the 6 months before death between January 2013 and December 2015. Results: Patients who received palliative care experienced significantly lower rates of all indicators of aggressive care such as hospital admission (odds ratio (OR) = 0.05, 95% confidence interval (CI): 0.04–0.06), emergency department visits (OR = 0.23, 95% CI: 0.21–0.25), intensive care unit stays (OR = 0.29, 95% CI: 0.26–0.32), major operating room procedures (OR = 0.22, 95% CI: 0.21–0.24), and lower in-hospital death (OR = 0.11, 95% CI: 0.10–0.11). This cohort had significantly higher rates of opiate prescriptions (OR = 1.27, 95% CI: 1.21–1.33) ( p < 0.01 for all comparisons). Conclusion: Use of palliative care at the end of life for cancer patients is associated with a reduction of the use of high-cost, intensive services. Future research is necessary to evaluate the impact of increasing use of palliative care services on other health outcomes. Administrative databases linked at the patient level are a useful data source for assessment of care at the end of life.


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