
Sheila Alison PayneLancaster University | LU · International Observatory on End of Life Care
Sheila Alison Payne
PhD
About
678
Publications
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Introduction
Sheila Payne holds an Emeritus Chair at the International Observatory on End of Life Care, Division of Health Research, Lancaster University. Sheila does research in Palliative Care.
Additional affiliations
September 2016 - June 2019
September 2006 - December 2014
October 1990 - October 1996
Publications
Publications (678)
Background
Palliative sedation refers to the proportional use of titrated medication which reduces consciousness with the aim of relieving refractory suffering related to physical and psychological symptoms and/or existential distress near the end of life. Palliative sedation is intended to be an end of life option that enables healthcare professio...
Background
Health care staff should be given the opportunity to participate in research, but recruiting clinicians via their employing organisation is not always straightforward or quick in the UK. Unlike many countries outside the UK, very low-risk survey, interview or focus group studies can be subject to some of the same governance approval proc...
Introduction:
Palliative care is a critical component of care for patients with chronic hematological malignancies. Leveraging eHealth approaches can potentially facilitate the delivery of palliative care, leading to improved quality of life (QoL).
Methods:
The MyPal study (NCT04370457) is a randomized controlled clinical trial assessing an eHealth...
Objective
A comprehensive understanding of coping strategies of patients with advanced diseases can contribute to providing supportive care that meets patients' needs. However, insight into how coping of this population develops over time is lacking. We examined coping strategies of patients with advanced cancer over time and identified distinct tr...
Background
Healthcare providers working in hospitals have significant exposure to patients with palliative care needs. For many patients, these needs often reflect non-specialist rather than specialist palliative care needs. Embedding a palliative care approach in acute hospital-based care however is challenging.
Aim
To identify core indicators fo...
Background
Person-centred care is becoming increasingly recognised as an important element of palliative care. The current review syntheses evidence in relation to transitions in advanced cancer patients with palliative care needs. The review focuses on specific elements which will inform the Pal-Cycles programme, for patients with advanced cancer...
Background
Palliative care provision should be driven by high quality research evidence. However, there are barriers to conducting research. Most research attention focuses on potential patient barriers; staff and organisational issues that affect research involvement are underexplored. The aim of this research is to understand professional and org...
Background
The practice of palliative sedation continues to raise ethical questions among people, which in turn leads to its varied acceptance and practice across regions. As part of the Palliative Sedation European Union (EU) project, the aim of the present study was to determine the perceptions of palliative care experts regarding the practice of...
The use of metaphors to talk about cancer experiences has attracted much research and debate, especially in the case of military metaphors. However, questions remain about what metaphors are used by different populations for different aspects of the cancer experience. This scoping review aims to answer them.
We searched PubMed, PsycINFO, CINAHL, Sc...
The use of metaphors to talk about cancer experiences has attracted much research and debate, especially in the case of military metaphors. However, questions remain about what metaphors are used by different populations for different aspects of the cancer experience. For further information: Method A scoping literature review Review questions: 1)...
Background: Leadership competencies are essential for the future development of the field of palliative and hospice care. However, a consensus on the core competencies of good leadership is not yet available. Objective: To elicit consensus on core leadership competencies in palliative care. Design: Based on a literature review, a list of 119 specif...
Background
Patients with cancer often have to make complex decisions about treatment, with the options varying in risk profiles and effects on survival and quality of life. Moreover, inefficient care paths make it hard for patients to participate in shared decision-making. Data-driven decision-support tools have the potential to empower patients, s...
Background
The European Association for Palliative Care (EAPC) acknowledges palliative sedation as an important, broadly accepted intervention for patients with life-limiting disease experiencing refractory symptoms. The EAPC therefore developed 2009 a framework on palliative sedation. A revision was needed due to new evidence from literature, ongo...
The use of metaphors to talk about cancer experiences has attracted much research and debate, especially in the case of military metaphors. However, questions remain about what metaphors are used by different populations for different aspects of the cancer experience. This scoping review aims to answer them. We searched PubMed, PsycINFO, CINAHL, Sc...
Background: Understanding the principles and practice of research by health care professionals helps to improve the evidence base for palliative care practice and service delivery. Research is a core competency in palliative care that enables the identification and addressing of problems for patients and their families, establishes best practice an...
Background: Digital health interventions are becoming increasingly important for adults, children, and young people with cancer and palliative care needs, but there is little research to guide policy and practice. Objectives: To identify recommendations for policy development of digital health interventions in cancer and palliative care. Design: Ex...
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As part of the Palliative Sedation project funded by the European Union’s Horizon 2020 programme (grant no. 825700) entitled Palliative Sedation (SC1-BHC-23-2018 A) ( https://palliativesedation.eu ), the aim of our study was to revise and update the 2009 European Association for Palliative Care (EAPC) framework on palliative sedation. For this...
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As part of the Palliative Sedation project funded by the European Union’s Horizon 2020 programme (grant no. 825700) entitled Palliative Sedation (SC1-BHC-23-2018 A) ( https://palliativesedation.eu ), the aim of our study was to revise and update the 2009 European Association for Palliative Care (EAPC) framework on palliative sedation. For this...
Background:
Community-based palliative out-of-hours services operate outside normal working hours. However, little is known about the provision and delivery of such care.
Aim:
The aim of this study was to describe types of provision and delivery of out-of-hours palliative care services provided by UK hospices.
Methods:
Survey questionnaires we...
The 22 countries of WHO's Eastern Mediterranean Region are experiencing an increase in the burden of non-communicable diseases (NCDs), including cancer. Of the six WHO regions, the Eastern Mediterranean Region is projected to have the greatest increase in cancer incidence in the next 15 years. Furthermore, most cancers are diagnosed at a late stage...
Background
Palliative sedation involves the intentional lowering of consciousness at the end of life. It can be initiated to relieve a patient’s burden caused by refractory symptoms at the end of life. The impact of palliative sedation needs to be clinically monitored to adjust the proper dose and regimen of sedative medication to ensure that patie...
Background
Patients at the end-of-life may experience refractory symptoms of which pain, delirium, vomiting and dyspnea are the most frequent. Palliative sedation can be considered a last resort option to alleviate one or more refractory symptoms. There are only a limited number of (qualitative) studies exploring the experiences of relatives of sed...
This ebook is designed to provide an accessible summary of the MyPal project for
clinicians, researchers and the public.
The aims of the MyPal project were to foster palliative care for patients with cancer
by leveraging electronic Patient Reported Outcome (ePRO) systems through their
adaptation to the personal needs of patients with cancer and the...
Background:
Palliative care services seek to improve the wellbeing of family carers of people living with serious and life-limiting illness. To help achieve this goal, systematic reviews have recommended priority areas for family carer research and the need to improve the quality of study design. Policy makers have also advocated for enhanced fami...
Unlabelled:
The Family Perceptions of Physician-Family Caregiver Communication scale (FPPFC) was developed to assess quality of physician-family end-of-life communication in nursing homes. However, its validity has been tested only in the USA and the Netherlands. The aim of this paper is to evaluate the FPPFC construct validity and its reliability...
Background:
Palliative sedation is a commonly accepted medical practice. This study aims to clarify how palliative sedation is regulated in various countries and whether this may impact its practice.
Methods:
An online survey requesting regulations on palliative sedation was conducted in Belgium, Germany, Hungary, Italy, The Netherlands, Spain,...
Mixed methods research offers a unique opportunity to advance understanding of a phenomenon. However, practical guidance on the use of mixed methods to develop theoretical frameworks is limited. We present a novel adaptation of the Pillar Integration Process (PIP) to support development and refinement of a theoretical framework explaining the proce...
End-of-life (EOL) care is a crucial public health issue in Hong Kong, and one in which the community social service sector has become increasingly involved, as healthcare policy in the city shifts towards greater emphasis on social relationships in non-medical forms of EOL care. This study used abductive grounded theory methodology to illustrate th...
In 2009, the European Association for Palliative Care (EAPC) developed a framework on palliative sedation, acknowledging this practice as an important and ethically acceptable intervention of last resort for terminally ill patients experiencing refractory symptoms. Before and after that, other guidelines on palliative sedation have been developed i...
Background
Globally 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 deli...
Long-term care facilities are increasingly important places for palliative and end-of-life care provision in Japan. While the importance of culture has been noted for palliative and end-of-life care, an exploration of its influence on care provision in long-term care settings has received little direct attention in Japan. Exploring staff views and...
Purpose
This study aims to explore the prevalence of CRC survivorship issues and their impact on survivors’ quality of life (QoL).
Methods
This study utilised a mixed methods sequential explanatory design. Adult CRC survivors between 6- and 60-months post-diagnosis ( n = 304) were purposively recruited from three hospitals and twenty-one cancer su...
This paper explores the ethical dimension of the opportunity to offer improved electronic patient-reported outcome (ePRO) systems addressing personal needs of pediatric cancer patients, their parents and caregivers, with regard to technological advance of digital health. This opportunity has been explored in the MyPal research project, which aims t...
Objectives
Facilitated advance care planning (ACP) helps family carers’ to be aware of patient preferences. It can improve family carers’ involvement in decision making and their overall experiences at the end of life, as well as, reduce psychological stress. We investigated the effects of the ACTION Respecting Choices (RC) ACP intervention on the...
Background
In 2009, the EAPC published recommendations on standards and norms for palliative care in Europe, and a decade later, wished to update them to reflect contemporary practice.
Aim
To elicit consensus on standards and norms for palliative care in Europe, taking account of developments since 2009.
Design
A Delphi technique used three seque...
Background:
A primary caregiver shares the illness experience of the patient and undertakes vital care work, alongside managing the patient's emotions, and is actively involved in care process without being paid. When faced with the palliative care patient's needs, caregivers are affected on multiple levels (physical, psychological and socio-econo...
Background:
The involvement of patients in decision making about their healthcare plans is being emphasized. In the context of palliative sedation, it is unclear how these decisions are made and who are involved in. The aim of the study is to understand how this decision-making is taken.
Method:
Information from a systematic review on clinical a...
Background
Internationally, the demand for the provision of high-quality palliative care is increasing exponentially. Japan is a rapidly ageing society and it is therefore important to understand the current context to develop practice and inform future resource allocation in long-term care facilities (LTCFs).
Aim
To describe the broad context of...
Background: Nominal group technique (NGT) is a well-established research method for establishing consensus. Owing to the COVID-19 pandemic, research methods need to be adapted to engage with participants online. Objective: To determine the feasibility and acceptability of adapting NGT to an online format. Setting: Palliative care clinicians (n = 31...
Introduction
The systematic collection of electronic patient-reported outcome (ePRO) in the routine care of patients with chronic haematological malignancies such as chronic lymphocytic leukaemia (CLL) and myelodysplasia syndromes (MDS) can constitute a very ambitious but worthwhile challenge. MyPal is a Horizon 2020 Research & Innovation Action ai...
Background
People with advanced cancer often suffer from various symptoms, which can arise from the cancer itself and its treatment, the illness experience, and/or co-morbid conditions. Important patient-reported outcomes such as functional status, symptom severity, and quality of life (QoL) might differ between countries, as countries vary with re...
Background: As the COVID-19 pandemic evolves healthcare organizations in the UK, US, and Europe have called for greater access to palliative care. This call has been echoed by palliative care practitioners in the low- and middle-income countries (LMICs). While the need for palliative care may be universal, there are cultural and resource difference...
Between 40 and 80 million patients with advanced disease need access to palliative care, 78–95% of them living in low- and middle-income countries. However, palliative care development is progressing slowly and unevenly across the globe, and health-related suffering remains greatly unaddressed. The global development of palliative care requires a p...
Objectives
To examine the rate and characteristics of hospitalisation in the last month of life and place of death among nursing home residents and to identify related care processes, facility factors and residents’ characteristics.
Setting
A cross-sectional study (2015) of deceased residents in 322 nursing homes in six European countries.
Partic...
Background:
To be able to provide high-quality palliative care, there need to be a number of organizational structures available in the nursing homes. It is unclear to what extent such structures are actually present in nursing homes in Europe. We aim to examine structural indicators for quality of palliative care in nursing homes in Europe and to...
Background
Globally 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 deli...
Background
Most people spend their last year of life at home, with many wishing to die there, but patients may need access to care after hours. Out-of-hours palliative care is delivered by multi-disciplinary teams including Health Care Assistants (HCA). However, little is known about the role, contribution and impact Health Care Assistants have on...
Introduction
Electronic patient-reported outcomes (ePROs) have tremendous potential to optimise palliative and supportive care for children with cancer, their families and healthcare providers. Particularly, these children and their families are subjected to multiple strains caused by the disease and its treatment. The MyPal digital health platform...
Background
‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included on...
Background/aims
Serious adverse event reporting guidelines have largely been developed for pharmaceutical trials. There is evidence that serious adverse events, such as psychological distress, can also occur in non-pharmaceutical trials. Managing serious adverse event reporting and monitoring in palliative care non-pharmaceutical trials can be part...
Background
Palliative sedation is the monitored use of medications intended to relieve refractory suffering. The assessment of palliative sedation has been focused on the assess of the level of consciousness but a more comprehensive approach to assessment is needed.
Aim
To understand how the potential effects and possible adverse events of palliat...
Background:
Palliative care involves the care for patients with severe and advanced diseases with a focus on quality of life and symptom management. Integration of palliative care with curative and/or chronic care is expected to lead to better results in terms of quality of life and reduced costs. Although initiatives in different countries in Eur...
Background ‘PACE Steps to Success’ is a multicomponent training program aiming to integrate generalist and non-disease-specific palliative care in nursing homes. This program did not improve residents’ comfort in the last week of life, but it appeared to improve quality of care and dying in their last month of life. Because this program included on...
Background
Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce.
Methods and findings
To test the implementation of ACP in patients with adv...
Objectives
To set up a pragmatic Plan–Do–Study–Act cycle by analysing patient experiences and determinants of satisfaction with care in the last year of life.
Design
Cross-sectional postbereavement survey.
Setting
Regional health services research and development structure representing all health and social care providers involved in the last yea...
Background
The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefor...
Context:
Near the end of life when patients experience refractory symptoms, palliative sedation may be considered as a last treatment. Clinical guidelines have been developed, but they are mainly based on expert opinion or retrospective chart reviews. Therefore, evidence for the clinical aspects of palliative sedation is needed.
Objectives:
To e...
Background:
Given the increase in the number of deaths within long-term care facilities (LTCFs), the need for palliative and end-of-life (EOL) care education among such facilities has been increasing. As such, a systematic synthesis of global palliative and EOL care educational approaches and evaluation can aid further educational development.
Ob...
Context
Certain treatments are potentially inappropriate when administered to nursing homes residents at the end of life and should be carefully considered. An international comparison of potentially inappropriate treatments allows insight into common issues and country-specific challenges of end-of-life care in nursing homes and helps direct healt...
Objectives
PACE Steps to Success is a 1-year train-the-trainer program aiming to integrate nonspecialist palliative care into nursing homes via staff education and organizational support. In this study, we aimed to explore whether this program resulted in changes in residents' hospital use and place of death.
Design
Secondary analysis of the PACE...
PURPOSE
Capitalizing on the promise of patient-reported outcomes (PROs), electronic implementations of PROs (ePROs) are expected to play an important role in the development of novel digital health interventions targeting palliative cancer care. We performed a systematic and mapping review of the scientific literature on the current ePRO-based appr...
Background
Access to community palliative care ‘out-of-hours’ – defined as care provided after the normal hours of work – is advocated globally. Healthcare assistants, who provide care under the direction of a qualified professional, are increasingly employed to help deliver such care, yet there is a little understanding regarding their role, respo...
ABSTRACT
Objective
Cancer survivors’ perceptions of healthcare have been identified as a predictor of quality of life (QoL) outcomes. This study aims to explore colorectal cancer (CRC) survivors’ perceptions of how cancer-related healthcare affects their QoL.
Methods
Semi-structured interviews were conducted with twenty-two CRC survivors receiving...
Objective:
Cancer survivors' perceptions of healthcare have been identified as a predictor of quality of life (QoL) outcomes. This study aims to explore colorectal cancer (CRC) survivors' perceptions of how cancer-related healthcare affects their QoL.
Methods:
Semistructured interviews were conducted with 22 CRC survivors receiving follow-up car...
The global COVID-19 pandemic is likely to have a major impact on the experience of death, dying and bereavement. This study aimed to review and synthesise learning from previous literature focused on the impact on grief and bereavement during other infectious disease outbreaks. We conducted a rapid scoping review according to the principles of the...