Nancy Preston

Lancaster University | LU · International Observatory on End of Life Care

Background: Namaste Care is an intervention designed to improve the quality of life for people with advanced dementia by providing individualised stimulation and personalised activities in a group setting. Current evidence indicates there may be benefits from this intervention, but there is a need to explore the practical realities of its implemen...

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...

Objectives Inadequate access to cancer care, high mortality, and out-of-pocket expenditure contribute to health-related suffering in low- and middle-income countries, making palliative care a relevant option. How palliative care development has alleviated suffering is not systematically studied, necessitating this review’s conduct. The objective of...

Background Adequate death preparation positively influences families’ experience before death and during bereavement. However, how to prepare families in non-Western cultures has received scant attention. Aim To explore family caregivers’ experiences in preparing for a relative’s death in specialist palliative care in Taiwan. Design A qualitative...

Background Since December 2022, the NHS has experienced large-scale strikes over pay by staff. Strikes heavily impact elective care delivery. The NHS cancels approximately 12 million elective care appointments each year. One million appointments have been cancelled due to strikes between 2022 and 2024. During this time emergency care is prioritised...

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 Patients living with life-limiting illnesses other than cancer constitute the majority of patients in need of palliative care globally, yet most previous systematic reviews of the cost impact of palliative care have not exclusively focused on this population. Reviews that tangentially looked at non-cancer patients found inconclusive evid...

Background Patients with heart failure have significant palliative care needs but few receive palliative care. Guidance is lacking on how to integrate palliative care into standard heart failure care. Palliative care interventions often lack an underpinning theory and details on how key components interact to achieve an impact. Understanding how an...

Background Many individuals with advanced dementia die in hospital, despite preferring home death. Existing evidence of factors affecting their place of death is inconsistent. To inform policies/practices for meeting needs/preferences, systematically establishing the evidence is pertinent, particularly given the exponential rise in advanced dementi...

Background Adults and children with cancer are referred to palliative care infrequently or late. Oncologists often gatekeep these referrals. Social exchange theory is used to explain physician referral behaviour in various clinical settings. Its utility in a cancer palliative care setting is not known. Methods We used Karl Popper’s hypothetico-ded...

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 Dignity is integral to palliative care. Illness can diminish it, causing hopelessness and the wish to hasten death. Yet, dignity is a complex multidimensional phenomenon, influenced by values and context. Understanding its varying interpretations can inform practice and policy. The aim of the study is to explore the understanding of dign...

Background Healthcare in care homes during the COVID-19 pandemic required a balance, providing treatment while minimising exposure risk. Policy for how residents should receive care changed rapidly throughout the pandemic. A lack of accessible data on care home residents over this time meant policy decisions were difficult to make and verify. This...

Background Globally, children with cancer often experience delays in palliative care referral or are infrequently referred. Therefore, we conducted a qualitative study to gain insight from paediatric oncologists into what enables or deters palliative care referral. Strategic solutions to develop integrated palliative care was a critical study theme...

Background The disproportionate effect of COVID-19 on long term care facility (LTCF) residents has highlighted the need for clear, consistent guidance on the management of pandemics in such settings. As research exploring the experiences of LTCFs during the pandemic and the implications of mass hospital discharge, restricting staff movement, and li...

Background Care homes (long-term care facilities) were profoundly impacted early in the COVID-19 pandemic, both in terms of resident mortality and restrictions for infection control. This study investigated the impact on the emotional well-being of care home staff of challenges faced at this time, and the strategies used to manage them. Methods Se...

Background and objectives The inability of individuals in the advanced stage of dementia to communicate about preferences in care at the end-of-life poses a challenge for healthcare professionals and family carers. The proven effective Family Carer Decision Support intervention, has been designed to inform family carers about end-of-life care optio...

Introduction Community nurses play a key role in facilitating Advance Care Planning (ACP) discussions as they deliver care throughout the illness trajectory and have built rapport with patients. The ACP process should be person-centred, with care recipients and caregivers engaging actively in the process. Education is necessary to ensure understand...

Background A substantial number of Emergency Department (ED) attendances by care home residents are potentially avoidable. Health Call Digital Care Homes is an app-based technology that aims to streamline residents’ care by recording their observations such as vital parameters electronically. Observations are triaged by remote clinical staff. This...

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...

Background Bereavement experience is shaped by cultural and social contexts. No systematically constructed reviews were identified to explore the bereavement experience for people who are influenced by Chinese culture valuing filial piety and mutual dependence. This review aimed to systematically review the bereavement experience of Taiwanese famil...

Background Trial participant recruitment is an interactional process between health care professionals, patients and carers. Little is known about how clinicians carry out this role in palliative care trials and the reasons why they do or do not recruit participants. Aims To explore how clinicians recruit to palliative care trials, why they choose...

Background Patients with heart failure have significant palliative care needs, but few are offered palliative care. Understanding the experiences of delivering and receiving palliative care from different perspectives can provide insight into the mechanisms of successful palliative care integration. There is limited research that explores multi-per...

Purpose Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients’ coping strategies, and sociodemographic and clinical characteristics we...

Background Paramedics are increasingly being called to attend patients dying from advanced incurable conditions. However, confidence to deal with such calls varies, with many feeling relatively unskilled in this aspect of their role. A number of interventions have been piloted to improve their skills in end-of-life care (EoLC) but without a fully s...

Background Healthcare in care homes during the COVID-19 pandemic required a balance, providing treatment while minimising exposure risk. Policy for how residents should receive care changed rapidly throughout the pandemic. A lack of accessible data on care home residents over this time meant policy decisions were difficult to make and verify. This...

Background Adults and children with cancer are referred to palliative care infrequently or late. Oncologists often gatekeep these referrals. Social exchange theory is used to explain physician referral behaviour in various clinical settings. Its utility in a cancer palliative care setting is not known. Methods We used Karl Popper's hypothetico-dedu...

Background A substantial number of emergency department (ED) attendances from care homes could be classed as avoidable. HealthCall is a technology that aims to streamline residents' care by recording their observations electronically. Observations are fed to remote clinical staff to triage referrals. This study assessed the effectiveness of the Hea...

p> 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...

p> 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...

Learning Care Homes: Continuous improvement of structured referrals. This HDRUK North project aimed to evaluate and improve a Digital Care Homes app to support decision-making by care home and community staff when a care home resident becomes unwell. This process allows the community NHS team to make an action plan and hopes to reduce unnecessary h...

Background: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale-IPOS-COV for severe COVID using psychometric approach. Methods: We consulted experts and followed consensus-based st...

Purpose: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to investigate whether patient reported outcomes (quality of life and patient satisfaction), patients’ coping strategies, sociodemographic and clinical characteristics w...

Recent years have seen a rise in digital interventions to improve coordination between care homes and NHS services, supporting remote sharing of data on the health of care home residents. Such interventions were key components in the response to the COVID-19 pandemic. This paper presents findings from the qualitative component of an evaluation of a...

Background: the mySupport advance care planning intervention was originally developed and evaluated in Northern Ireland (UK). Family caregivers of nursing home residents with dementia received an educational booklet and a family care conference with a trained facilitator to discuss their relative's future care. Objectives: to investigate whether...

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: Adult patients admitted to intensive care units in the terminal phase experience high symptom burden, increased costs, and diminished quality of dying. There is limited literature on palliative care engagement in ICU, especially in lower-middle-income countries. This study explores a strategy to enhance palliative care engagement in IC...

Background Paramedics are increasingly being called to attend patients dying from advanced incurable conditions. However, confidence to deal with such calls varies, with many feeling relatively unskilled in this aspect of their role. A number of interventions have been piloted to improve their skills in end-of-life care but without a fully specifie...

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...

Background Patients with heart failure have significant palliative care needs, but few are offered palliative care. Understanding the experiences of delivering and receiving palliative care from different perspectives can provide insight into the mechanisms of successful palliative care integration. There is limited research that explores multi-per...

Background Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce. Aim To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries. De...

Background Although a significant proportion of children with cancer need palliative care, few are referred or referred late, with oncologists and haematologists gatekeeping the referral process. We aimed to explore the facilitators and barriers to palliative care referral. Methods Twenty-two paediatric oncologists and haematologists were purposiv...

Aims, Objectives and Background HealthCall is a digital health initiative that aims to reduce emergency department attendances by upskilling care home staff to use app-based technology whereby residents with new clinical presentations’ observations are recorded electronically using a structured SBAR approach. Information is fed to a Single Point of...

Background There is uncertainty about the factors influencing inequities in access to palliative care in socially deprived areas, including the role of service models and professional perceptions. Aim To explore the relationship between social deprivation and access to hospice care, including factors influencing access and professional experiences...

Background Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to NHS provision, which may affect their experiences during the COVID-19 pandemic. The aim of this study...

Purpose Death is common in intensive care units, and integrating palliative care enhances outcomes. Most research has been conducted in high-income countries. The aim is to understand what is known about the type and topics of research on the provision of palliative care within intensive care units in low- and middle-income countries Materials and...

Background: Where it has been determined that a resident in a nursing home living with dementia loses decisional capacity, nursing home staff must deliver care that is in the person's best interests. Ideally, decisions should be made involving those close to the person, typically a family carer and health and social care providers. The aim of the...

Objectives To describe multinational prescribing practices by palliative care services for symptom management in patients dying with COVID-19 and the perceived effectiveness of medicines. Methods We surveyed specialist palliative care services, contacted via relevant organisations between April and July 2020. Descriptive statistics for categorical...

Background: This study investigated if subjective socioeconomic status (SSS) is related to self-rated health (SRH) and objective indicators of health in people with and without intellectual disability. Methods: Participants were 217 adults with, and 2350 adults without intellectual disability in Jersey. In the intellectual disability sample, 85...

Context Evidence of symptom control outcomes in severe COVID is scant. Objective To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival. Methods Multicentre cohort study of people with COVID across England and Wales supported by palliative care ser...

Background Advance care planning in nursing homes is important to ensure the wishes and preferences of residents are recorded, especially during the COVID-19 pandemic. However, care staff and family members frequently report feeling unprepared for these conversations. More resources are needed to support them with these necessary discussions. This...

Objective To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting Organisations providing spec...

Purpose of this Review The purpose of this review is to describe the evolution of palliative care in paediatric oncology, the needs of children and their families in a paediatric oncology setting, palliative care referral practices in paediatric oncology, outcomes of palliative care referral in paediatric oncology and models of palliative care in p...

Background Missing data can introduce bias and reduce the power, precision and generalisability of study findings. Guidelines on how to address missing data are limited in scope and detail, and poorly implemented. Aim To develop guidelines on how best to (i) reduce, (ii) handle and (iii) report missing data in palliative care clinical trials. Des...

Background Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients’ symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim To understand rehabilitation provision in palliative c...

Background Efforts inequities in access to palliative and end-of-life care require comprehensive understanding about the extent of and reasons for inequities. Most research on this topic examines differences in receipt of care. There is a need, particularly in the UK, for theoretically driven research that considers both receipt of care and the wid...

Objectives: To explore the experiences of, and impact on, staff working in palliative care during the COVID-19 pandemic. Design: Qualitative multiple case study using semi-structured interviews between November 2020 and April 2021 as part of the CovPall study. Data were analysed using thematic framework analysis. Setting: Organisations providing sp...

Objectives To identify factors associated with palliative care services being busier during Covid-19. Methods Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's College London Research Ethics committee (LRS-19/20-18541). The primary outcome was change in busyness (...

Background COVID-19 has placed huge stress on healthcare systems and services, often impacting the well-being of staff across all settings (Mehta, Machado, Kwizera, et al., 2021). Little is known about the pandemic’s impact on hospice staff. Aims Identify how responding to COVID-19 has impacted hospice staff, whether and why this resulted in exper...

Background Chronic obstructive pulmonary disease (COPD) is a life-limiting condition with palliative care needs. Despite increasing awareness about the role palliative care can play in care provision for patients with advanced COPD, integration in standard care remains underdeveloped. The unpredictability of the disease progression and misconceptio...

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the coronavirus disease 2019 (COVID-19) pandemic are unknown. The aim of this study is to understand volunteer deployment and activities within palliative care services, and to i...

Objectives To develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19. Methods Cross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data were summarised descriptively and χ ² tests used to explore relationships between categorical variables....

Background Nursing home residents are typically older adults with high levels of chronic illness and impairment. As such, they are particularly susceptible to severe complications and mortality from COVID-19. Since all nursing home residents are at increased risk, nursing home care staff need to know what residents would want to happen should they...

Background Patients with palliative needs experience high psychological and symptom distress that may lead to hopelessness and impaired sense of dignity. Maintaining patient dignity or the quality of being valued is a core aim in palliative care. The notion of dignity is often explained by functionality, symptom relief and autonomy in decision maki...

Objective We aimed to develop question prompt lists (QPLs) for family caregivers of nursing home residents with advanced dementia in the context of a study involving Canada, the Czech Republic, Italy, the Netherlands, the United Kingdom and Ireland, and to explore cross-national differences. QPLs can encourage family caregivers to ask questions abo...

Background: Efforts to understand and tackle socioeconomic inequities in access to palliative and end-of-life care require comprehensive understanding about the extent of and reasons for inequities. Most research on this topic examines differences in receipt of care. There is a need for theoretically driven research that considers both receipt of c...

Background There is a high use of medications in adults with intellectual disability (ID). One implication of taking multiple medications is the potential for drug–drug interactions (DDIs). However, despite this being well highlighted in the mainstream literature, little is known about the incidence or associations of DDIs in the ID population. Me...