scholarly journals Understanding the Potential for Pharmacy Expertise in Palliative Care: The Value of Stakeholder Engagement in a Theoretically Driven Mapping Process for Research

Pharmacy ◽  
2021 ◽  
Vol 9 (4) ◽  
pp. 192
Author(s):  
Joseph Elyan ◽  
Sally-Anne Francis ◽  
Sarah Yardley
Keyword(s):  
Palliative Care ◽  
Stakeholder Engagement ◽  
Best Practice ◽  
Medication Management ◽  
Safety Issues ◽  
Inherent Risk ◽  
Care Services ◽  
Mapping Process ◽  
Palliative Care Services ◽  
Related Harm

Potentially avoidable medication-related harm is an inherent risk in palliative care; medication management accounts for approximately 20% of reported serious incidents in England and Wales. Despite their expertise benefiting patient care, the routine contribution of pharmacists in addressing medication management failures is overlooked. Internationally, specialist pharmacist support for palliative care services remains under-resourced. By understanding experienced practices (‘what happens in the real world’) in palliative care medication management, compared with intended processes (‘what happens on paper’), patient safety issues can be identified and addressed. This commentary demonstrates the value of stakeholder engagement and consultation work carried out to inform a scoping review and empirical study. Our overall goal is to improve medication safety in palliative care. Informal conversations were undertaken with carers and various specialist and non-specialist professionals, including pharmacists. Themes were mapped to five steps: decision-making, prescribing, monitoring and supply, use (administration), and stopping and disposal. A visual representation of stakeholders’ understanding of intended medicines processes was produced. This work has implications for our own and others’ research by highlighting where pharmacy expertise could have a significant additional impact. Evidence is needed to support best practice and implementation, particularly with regard to supporting carers in monitoring and accessing medication, and communication between health professionals across settings.

Behind the wheel safety in palliative care: a literature review

2018 ◽  
Vol 9 (3) ◽  
pp. 255-258
Author(s):  
Mark Howard ◽  
Christina Ramsenthaler
Keyword(s):  
Palliative Care ◽  
Best Practice ◽  
Driving Safety ◽  
Driving Ability ◽  
Chronic Obstructive ◽  
Road Test ◽  
Complex Activity ◽  
Simulated Driving ◽  
Care Services ◽  
Palliative Care Services

BackgroundDriving is a complex activity that requires physical abilities and adequate executive and cognitive functioning. There is concern among specialist palliative care services about patients continuing to drive despite having progressive incurable illnesses, comorbidities and medications to manage their symptoms.ObjectivesTo determine the quality of literature available about driving that would apply to palliative care patients, specifically in relation to road test or simulated driving scores and neurocognitive testing.MethodA literature search based on systematic principles was conducted on the Ovid Medline, PsycINFO, Embase and CINAHL database up to 14 October 2018. Patient populations with life-limiting illness such as cancer, cardiorespiratory and neurological diagnoses were included.Results37,546 articles were screened. 14 articles satisfied the search criteria. Six studies focused on patients with multiple sclerosis (MS). Four studies investigated driving ability in patients with Huntington’s disease. The remaining four articles studied heart failure, chronic obstructive pulmonary disease (COPD), interstitial lung disease and patients with cancer. In the road test studies, 19%–47% of patients with MS and Huntington’s failed the behind-the-wheel assessment. The simulated driving scores in seven studies demonstrated statistically significant differences in errors made between study participants and controls. Divided attention was found in seven studies to be associated with poorer road-test or simulated driving ability.ConclusionsThis review highlights the scarcity of studies available for patients who would be known to palliative care services. For most patient groups, a battery of neurocognitive tests combined with a road-test or simulated driving assessment is still considered the best practice in determining driving safety.

scholarly journals Strategies for Introducing Outpatient Specialty Palliative Care in Gynecologic Oncology

2017 ◽  
Vol 13 (9) ◽  
pp. e712-e720 ◽  
Author(s):  
Casey M. Hay ◽  
Carolyn Lefkowits ◽  
Megan Crowley-Matoka ◽  
Marie A. Bakitas ◽  
Leslie H. Clark ◽  
...  
Keyword(s):  
Palliative Care ◽  
Standard Deviation ◽  
Best Practice ◽  
Gynecologic Oncology ◽  
Relationship Building ◽  
Physician Patient Relationship ◽  
Telephone Interviews ◽  
Care Services ◽  
Qualitative Interview Study ◽  
Palliative Care Services

Purpose: Concern that patients will react negatively to the idea of palliative care is cited as a barrier to timely referral. Strategies to successfully introduce specialty palliative care to patients have not been well described. We sought to understand how gynecologic oncologists introduce outpatient specialty palliative care. Methods: We conducted a national qualitative interview study at six geographically diverse academic cancer centers with well-established palliative care clinics between September 2015 and March 2016. Thirty-four gynecologic oncologists participated in semistructured telephone interviews focusing on attitudes, experiences, and practices related to outpatient palliative care. A multidisciplinary team analyzed interview transcripts using constant comparative methods to inductively develop and refine a coding framework. This analysis focuses on practices for introducing palliative care. Results: Mean participant age was 47 years (standard deviation, 10 years). Mean interview length was 25 minutes (standard deviation, 7 minutes). Gynecologic oncologists described the following three main strategies for introducing outpatient specialty palliative care: focus initial palliative care referral on symptom management to dissociate palliative care from end-of-life care and facilitate early relationship building with palliative care clinicians; use a strong physician-patient relationship and patient trust to increase acceptance of referral; and explain and normalize palliative care referral to address negative associations and decrease patient fear of abandonment. These strategies aim to decrease negative patient associations and encourage acceptance of early referral to palliative care specialists. Conclusion: Gynecologic oncologists have developed strategies for introducing palliative care services to alleviate patient concerns. These strategies provide groundwork for developing system-wide best practice approaches to the presentation of palliative care referral.

scholarly journals Monitoring the Italian Home Palliative Care Services

Healthcare ◽  
2019 ◽  
Vol 7 (1) ◽  
pp. 4 ◽  
Author(s):  
Gianlorenzo Scaccabarozzi ◽  
Pietro Giorgio Lovaglio ◽  
Fabrizio Limonta ◽  
Carlo Peruselli ◽  
Mariadonata Bellentani ◽  
...  
Keyword(s):  
Palliative Care ◽  
Data Collection ◽  
Best Practices ◽  
Home Care ◽  
Cancer Patients ◽  
Best Practice ◽  
Activity Data ◽  
Care Services ◽  
Palliative Care Services ◽  
Year 2013

Background: In Italy, there currently is a lack of reliable and consistent data on home palliative care provided to people near death. Objectives: Monitoring the activities of the Italian Home Palliative Care Services, according to the 2014 national data collection program entitled “Observatory of Best Practices in Palliative Care” and providing process/outcome measures on a subsample (Best Practice Panel), on regulatory standards and on complete/reliable activity data. Design: A data collection web portal using two voluntary internet-based questionnaires in order to retrospectively identify the main care activity data provided within the year 2013 by Home care units. In the Best Practice Panel and International best practices, eligibility and quality measures refer to the national standards of the NL 38/2010. Setting/Subject: Home Palliative Care Services (HPCSs) that provided care from January to December 2013. Results: 118 Home care units were monitored, globally accounting for 40,955 assisted patients within the year 2013 (38,384 cancer patients); 56 (47.5% of 118) were admitted in the Best Practice Panel. Non-cancer (5%) and pediatric (0.4%) patients represented negligible percentages of frail care patients, and a majority of patients died at home (respectively nearly 75% and 80% of cancer and non-cancer patients). Conclusion: The study demonstrated the feasibility of the collection of certified data from Home care services through a web-based system. Only 80% of the facilities met the requirements provided by the Italian NL 38/2010. Moreover, the extension of the palliative care services provided to frail non-cancer and pediatric patients, affected by complex and advanced chronic conditions, is still inadequate in Italy.

Family caregivers voice their needs: A photovoice study

2014 ◽  
Vol 13 (3) ◽  
pp. 701-712 ◽  
Author(s):  
Jennifer Angelo ◽  
Richard Egan
Keyword(s):  
Palliative Care ◽  
Family Member ◽  
Family Caregivers ◽  
Health Professionals ◽  
Medication Management ◽  
Physical Demands ◽  
Care Services ◽  
Palliative Care Services ◽  
Care Health ◽  
Photovoice Methodology

AbstractObjective:Caregivers often are unprepared for their role yet serve as the frontline in the provision of palliative care services. The aim of our study was to explore family caregivers' experiences from their perspective as they cared for dying relatives.Method:Using the Photovoice methodology, ten unpaid family caregivers took photographs depicting issues they experienced as informal caregivers of an ill family member who had less than a year to live. Each participant met with the first author individually four to six times and explained their role as caregiver through photographs and stories.Results:The results were clustered into seven themes: physical demands, emotional/spiritual stress, preparing for the future, securing help, medication management, navigating the agencies, and relationships.Significance of results:Caregivers perform a variety of tasks, often under stress. This study highlights the main areas where problems lie and the areas that palliative care health professionals need to be aware of so they can assist and educate caregivers, with the goal of finding solutions to the burdens of care. The themes were found to be intertwined, showing the complexity of the caregiving role.

scholarly journals Standards, Guidelines, and Quality Measures for Successful Specialty Palliative Care Integration Into Oncology: Current Approaches and Future Directions

2020 ◽  
Vol 38 (9) ◽  
pp. 987-994 ◽  
Author(s):  
Arif H. Kamal ◽  
Claudia Bausewein ◽  
David J. Casarett ◽  
David C. Currow ◽  
Deborah J. Dudgeon ◽  
...  
Keyword(s):  
Palliative Care ◽  
Best Practice ◽  
Quality Measurement ◽  
Quality Measures ◽  
Shared Vision ◽  
Care Services ◽  
Care Integration ◽  
Measurement Framework ◽  
Palliative Care Services ◽  
Oncology Care

Although robust evidence demonstrates that specialty palliative care integrated into oncology care improves patient and health system outcomes, few clinicians are familiar with the standards, guidelines, and quality measures related to integration. These types of guidance outline principles of best practice and provide a framework for assessing the fidelity of their implementation. Significant advances in the understanding of effective methods and procedures to guide integration of specialty palliative care into oncology have led to a proliferation of guidance documents around the world, with several areas of commonality but also some key differences. Commonalities originate from a shared vision for integration; differences arise from diverse roles of palliative care specialists within cancer care globally. In this review we discuss three of the most cited standards/guidelines, as well as quality measures related to integrated palliative and oncology care. We also recommend changes to the quality measurement framework for palliative care and a new way to match palliative care services to patients with advanced cancer on the basis of care complexity and patient needs, irrespective of prognosis.

Children's palliative care in low- and middle-income countries

2015 ◽  
Vol 101 (1) ◽  
pp. 85-90 ◽  
Author(s):  
Julia Downing ◽  
Richard A Powell ◽  
Joan Marston ◽  
Cornelius Huwa ◽  
Lynna Chandra ◽  
...  
Keyword(s):  
Palliative Care ◽  
Best Practice ◽  
Middle Income ◽  
Children And Young People ◽  
Middle Income Countries ◽  
Care Services ◽  
The Status ◽  
Palliative Care Services ◽  
Global Population ◽  
Low And Middle Income

One-third of the global population is aged under 20 years. For children with life-limiting conditions, palliative care services are required. However, despite 80% of global need occurring in low- and middle-income countries (LMICs), the majority of children's palliative care (CPC) is provided in high-income countries. This paper reviews the status of CPC services in LMICs—highlighting examples of best practice among service models in Malawi, Indonesia and Belarus—before reviewing the status of the extant research in this field. It concludes that while much has been achieved in palliative care for adults, less attention has been devoted to the education, clinical practice, funding and research needed to ensure children and young people receive the palliative care they need.

Volunteering in hospice and palliative care in the United Kingdom

2018 ◽  
Author(s):  
Ros Scott
Keyword(s):  
Palliative Care ◽  
United Kingdom ◽  
Care Services ◽  
The United Kingdom ◽  
Strategic Direction ◽  
Palliative Care Services ◽  
History Of ◽  
The Uk ◽  
Hospice And Palliative Care ◽  
Changing Role

This chapter explores the history of volunteers in the founding and development of United Kingdom (UK) hospice services. It considers the changing role and influences of volunteering on services at different stages of development. Evidence suggests that voluntary sector hospice and palliative care services are dependent on volunteers for the range and quality of services delivered. Within such services, volunteer trustees carry significant responsibility for the strategic direction of the organiszation. Others are engaged in diverse roles ranging from the direct support of patient and families to public education and fundraising. The scope of these different roles is explored before considering the range of management models and approaches to training. This chapter also considers the direct and indirect impact on volunteering of changing palliative care, societal, political, and legislative contexts. It concludes by exploring how and why the sector is changing in the UK and considering the growing autonomy of volunteers within the sector.

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