Mapping end-of-life and anticipatory medications in palliative care patients using a longitudinal general practice database

2021 ◽  
pp. 1-7
Author(s):  
H. Khalil ◽  
M. Garett ◽  
A. Byrne ◽  
P. Poon ◽  
K. Gardner ◽  
...  

Abstract Objective End-of-life and anticipatory medications (AMs) have been widely used in various health care settings for people approaching end-of-life. Lack of access to medications at times of need may result in unnecessary hospital admissions and increased patient and family distress in managing palliative care at home. The study aimed to map the use of end-of-life and AM in a cohort of palliative care patients through the use of the Population Level Analysis and Reporting Data Space and to discuss the results through stakeholder consultation of the relevant organizations. Methods A retrospective observational cohort study of 799 palliative care patients in 25 Australian general practice health records with a palliative care referral was undertaken over a period of 10 years. This was followed by stakeholders’ consultation with palliative care nurse practitioners and general practitioners who have palliative care patients. Results End-of-life and AM prescribing have been increasing over the recent years. Only a small percentage (13.5%) of palliative care patients received medications through general practice. Stakeholders’ consultation on AM prescribing showed that there is confusion about identifying patients needing medications for end-of-life and mixed knowledge about palliative care referral pathways. Significance of results Improved knowledge and information around referral pathways enabling access to palliative care services for general practice patients and their caregivers are needed. Similarly, the increased utility of screening tools to identify patients with palliative care needs may be useful for health care practitioners to ensure timely care is provided.

2011 ◽  
Vol 26 (4) ◽  
pp. 336-341 ◽  
Author(s):  
Kerin L Hannon ◽  
Helen E Lester ◽  
Stephen M Campbell

Introduction: Since April 2009, indicators for the UK Quality and Outcomes Framework pilot have been developed and piloted across a nationally representative sample of practices. In October 2009 a single palliative care indicator was piloted for 6 months that looked at, ‘ the percentage of patients on the palliative care register who have a preferred place to receive end-of-life care documented in the records’. Aim: The aim of this study was to gain the views and experiences of general practice staff on whether the inclusion of a single incentivized indicator to record the preferred place to receive end-of-life care would improve the quality of palliative care. Any issues arising from its implementation in a pay-for-performance scheme were also explored. Methods: Interviews took place with 57 members of staff in 24 practices: 21 GPs, 16 practice managers, 12 nurses and eight others (mostly information technology experts). Results: The indicator was not deemed appropriate for incentivization due to concerns about incentivizing an isolated, single issue within a multi-faceted, multi-disciplinary and complex topic. Palliative care was seen to be too sensitive and patient specific to be amenable to population-level quality measurement. In implementation, the indicator would pose potential harm to patients who may be asked about their end-of-life care at an inappropriate time and by a member of staff who may not be best placed to address this sensitive topic. Conclusions: The most appropriate time to ask a patient about end-of-life care is subjective and patient specific and therefore does not lend itself to an inflexible single indicator. Focusing on one isolated question simplifies and distracts from a multi-faceted and complex issue and may lead to patient harm.


Author(s):  
Susan E. McClement

The focus of palliative care is the whole person, including biopsychosocial, cultural, and spiritual dimensions of patient needs. The burgeoning literature examining the topic of spirituality within health care in general, and within palliative care in particular, underscores the notion that attending to patients’ spiritual care needs is a vital part of providing optimal palliative care. Yet health-care providers frequently report that they feel ill equipped to provide spiritual care at the end of life and wrestle with many questions and uncertainties: What is spiritual care? What is spiritual suffering? Who should provide spiritual care? How is a spiritual assessment conducted? What are some spiritual interventions for end of life care? What are some future research directions in the area of spiritual care? Answers to these questions form the basis of this chapter.


2019 ◽  
Vol 14 (4) ◽  
pp. 635-641 ◽  
Author(s):  
Daniel Y. Lam ◽  
Jennifer S. Scherer ◽  
Mark Brown ◽  
Vanessa Grubbs ◽  
Jane O. Schell

Kidney palliative care is a growing discipline within nephrology. Kidney palliative care specifically addresses the stress and burden of advanced kidney disease through the provision of expert symptom management, caregiver support, and advance care planning with the goal of optimizing quality of life for patients and families. The integration of palliative care principles is necessary to address the multidimensional impact of advanced kidney disease on patients. In particular, patients with advanced kidney disease have a high symptom burden and experience greater intensity of care at the end of life compared with other chronic serious illnesses. Currently, access to kidney palliative care is lacking, whether delivered by trained kidney care professionals or by palliative care clinicians. These barriers include a gap in training and workforce, policies limiting access to hospice and outpatient palliative care services for patients with ESKD, resistance to integrating palliative care within the nephrology community, and the misconception that palliative care is synonymous with end-of-life care. As such, addressing kidney palliative care needs on a population level will require not only access to specialized kidney palliative care initiatives, but also equipping kidney care professionals with the skills to address basic kidney palliative care needs. This article will address the role of kidney palliative care for patients with advanced kidney disease, describe models of care including primary and specialty kidney palliative care, and outline strategies to improve kidney palliative care on a provider and system level.


2014 ◽  
Vol 6 (2) ◽  
pp. 227-245
Author(s):  
Daniela Moşoiu

Abstract Persons suffering from chronic and life limiting illnesses often have unrelieved symptoms such as pain, depression, fatigue, and psychosocial and spiritual distress. In Romania they are frequently left in the care of their families with little support from the health care system. It seems a paradox that those who are the sickest persons in a country find little place in the health care system. This article presents palliative care as a solution to the suffering for these patients and their families by describing the concept, models of services, its beneficiaries and benefits and presenting the history of development of hospice and palliative care worldwide and in Romania.


2012 ◽  
Vol 30 (8) ◽  
pp. 880-887 ◽  
Author(s):  
Thomas J. Smith ◽  
Sarah Temin ◽  
Erin R. Alesi ◽  
Amy P. Abernethy ◽  
Tracy A. Balboni ◽  
...  

Purpose An American Society of Clinical Oncology (ASCO) provisional clinical opinion (PCO) offers timely clinical direction to ASCO's membership following publication or presentation of potentially practice-changing data from major studies. This PCO addresses the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. Clinical Context Palliative care is frequently misconstrued as synonymous with end-of-life care. Palliative care is focused on the relief of suffering, in all of its dimensions, throughout the course of a patient's illness. Although the use of hospice and other palliative care services at the end of life has increased, many patients are enrolled in hospice less than 3 weeks before their death, which limits the benefit they may gain from these services. By potentially improving quality of life (QOL), cost of care, and even survival in patients with metastatic cancer, palliative care has increasing relevance for the care of patients with cancer. Until recently, data from randomized controlled trials (RCTs) demonstrating the benefits of palliative care in patients with metastatic cancer who are also receiving standard oncology care have not been available. Recent Data Seven published RCTs form the basis of this PCO. Provisional Clinical Opinion Based on strong evidence from a phase III RCT, patients with metastatic non–small-cell lung cancer should be offered concurrent palliative care and standard oncologic care at initial diagnosis. While a survival benefit from early involvement of palliative care has not yet been demonstrated in other oncology settings, substantial evidence demonstrates that palliative care—when combined with standard cancer care or as the main focus of care—leads to better patient and caregiver outcomes. These include improvement in symptoms, QOL, and patient satisfaction, with reduced caregiver burden. Earlier involvement of palliative care also leads to more appropriate referral to and use of hospice, and reduced use of futile intensive care. While evidence clarifying optimal delivery of palliative care to improve patient outcomes is evolving, no trials to date have demonstrated harm to patients and caregivers, or excessive costs, from early involvement of palliative care. Therefore, it is the Panel's expert consensus that combined standard oncology care and palliative care should be considered early in the course of illness for any patient with metastatic cancer and/or high symptom burden. Strategies to optimize concurrent palliative care and standard oncology care, with evaluation of its impact on important patient and caregiver outcomes (eg, QOL, survival, health care services utilization, and costs) and on society, should be an area of intense research. NOTE. ASCO's provisional clinical opinions (PCOs) reflect expert consensus based on clinical evidence and literature available at the time they are written and are intended to assist physicians in clinical decision making and identify questions and settings for further research. Because of the rapid flow of scientific information in oncology, new evidence may have emerged since the time a PCO was submitted for publication. PCOs are not continually updated and may not reflect the most recent evidence. PCOs cannot account for individual variation among patients and cannot be considered inclusive of all proper methods of care or exclusive of other treatments. It is the responsibility of the treating physician or other health care provider, relying on independent experience and knowledge of the patient, to determine the best course of treatment for the patient. Accordingly, adherence to any PCO is voluntary, with the ultimate determination regarding its application to be made by the physician in light of each patient's individual circumstances. ASCO PCOs describe the use of procedures and therapies in clinical trials and cannot be assumed to apply to the use of these interventions in the context of clinical practice. ASCO assumes no responsibility for any injury or damage to persons or property arising out of or related to any use of ASCO's PCOs, or for any errors or omissions.


2021 ◽  
pp. 026921632110073
Author(s):  
Christine Lau ◽  
Christopher Meaney ◽  
Matthew Morgan ◽  
Rose Cook ◽  
Camilla Zimmermann ◽  
...  

Background: To date, little is known about the characteristics of patients who are admitted to a palliative care bed for end-of-life care. Previous data suggest that there are disparities in access to palliative care services based on age, sex, diagnosis, and socioeconomic status, but it is unclear whether these differences impact access to a palliative care bed. Aim: To better identify patient factors associated with the likelihood/rate of admission to a palliative care bed. Design: A retrospective chart review of all initiated palliative care bed applications through an electronic referral program was conducted over a 24-month period. Setting/participants: Patients who apply and are admitted to a palliative care bed in a Canadian metropolitan city. Results: A total of 2743 patients made a total of 5202 bed applications to 9 hospice/palliative care units in 2015–2016. Referred and admitted cancer patients were younger, male, and more functional than compared to non-cancer patients (all p < 0.001). Referred and admitted patients without cancer were more advanced in their illness trajectory, with an anticipated prognosis <1 month and Palliative Performance Status of 10%–20% (all p < 0.001). On multivariate analysis, a diagnosis of cancer and a prognosis of <3 months were associated with increased likelihood and/or rate of admission to a bed, whereas the presence of care needs, a longer prognosis and a PPS of 30%–40% were associated with decreased rates and/or likelihood of admission. Conclusion: Patients without cancer have reduced access to palliative care facilities at end-of-life compared to patients with cancer; at the time of their application and admission, they are “sicker” with very low performance status and poorer prognoses. Further studies investigating disease-specific clinical variables and support requirements may provide more insights into these observed disparities.


2015 ◽  
Vol 8 (4) ◽  
pp. 485-492 ◽  
Author(s):  
Jackie Robinson ◽  
Merryn Gott ◽  
Clare Gardiner ◽  
Christine Ingleton

ObjectiveTo explore the impact of environment on experiences of hospitalisation from the perspective of patient's with palliative care needs.MethodsA qualitative study design using longitudinal semistructured, face-to-face interviews were used to elicit the views of patients with palliative care needs admitted to hospital in 1 large urban acute hospital in New Zealand. The sample comprised of 14 patients admitted to hospital between July 2013 and March 2014 who met one of the Gold Standard Framework Prognostic Indicators for palliative care need.ResultsAlmost all participants described a range of factors associated with the environment which impacted negatively on their experiences of hospitalisation. This included challenges with the physical surroundings, the impact on social relationships with other patients, families and health professionals and the influence of the cultural milieu of the hospital setting.ConclusionsEmulating the ‘ideal’ environment for palliative care such as that provided in a hospice setting is an unrealistic goal for acute hospitals. Paying attention to the things that can be changed, such as enabling family to stay and improving the flexibility of the physical environment while improving the social interplay between patients and health professionals, may be a more realistic approach than replicating the hospice environment in order to reduce the burden of hospitalisations for patients with palliative care needs.


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.


2021 ◽  
Author(s):  
Matthias Huemer ◽  
Daniela Jahn-Kuch ◽  
Guenter Hofmann ◽  
Elisabeth Andritsch ◽  
Clemens Farkas ◽  
...  

BACKGROUND End-of-life decisions, specifically the provision of euthanasia and assisted suicide services, challenge traditional medical and ethical principles. Austria and Germany have decided to liberalize their laws restricting assisted suicide, thus reigniting the debate about a meaningful framework in which the practice should be embedded. Evidence of the relevance of assisted suicide and euthanasia for the general population in Germany and Austria is limited. OBJECTIVE The aim of this study is to examine whether the public awareness documented by search activities in the most frequently used search engine, Google, on the topics of <i>palliative care, euthanasia</i>, and <i>advance health care directives</i> changed with the implementation of palliative care services and new governmental regulations concerning end-of-life decisions. METHODS We searched for policies, laws, and regulations promulgated or amended in Austria, Germany, and Switzerland between 2004 and 2020 and extracted data on the search volume for each search term topic from Google Trends as a surrogate of public awareness and interest. Annual averages were analyzed using the Joinpoint Regression Program. RESULTS Important policy changes yielded significant changes in search trends for the investigated topics. The enactment of laws regulating advance health care directives coincided with a significant drop in the volume of searches for the topic of euthanasia in all 3 countries (Austria: −24.48%, <i>P</i>=.02; Germany: −14.95%, <i>P</i><.001; Switzerland: −11.75%, <i>P</i>=.049). Interest in palliative care increased with the availability of care services and the implementation of laws and policies to promote palliative care (Austria: 22.69%, <i>P</i>=.01; Germany: 14.39, <i>P</i><.001; Switzerland: 17.59%, <i>P</i><.001). The search trends for advance health care directives showed mixed results. While interest remained steady in Austria within the study period, it increased by 3.66% (<i>P</i><.001) in Switzerland and decreased by 2.85% (<i>P</i><.001) in Germany. CONCLUSIONS Our results demonstrate that legal measures securing patients’ autonomy at the end of life may lower the search activities for topics related to euthanasia and assisted suicide. Palliative care may be a meaningful way to raise awareness of the different options for end-of-life care and to guide patients in their decision-making process regarding the same.


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