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Introduction
My research is in the recognition of the dying phase and how clinicians make this decision. I am currently working on a randomised control trial to assess if medical students can be taught how to recognise a dying patient. I am also part of a European Research Consortium investigating the use of the Surprise Question.
Current institution
Additional affiliations
August 2017 - present
October 2014 - October 2017
July 2012 - October 2013
Education
October 2014 - October 2017
October 2009 - October 2010
September 2002 - July 2005
Publications
Publications (84)
Background:
The acute hospital is a challenging place for a person with dementia. Behavioural and psychological symptoms of dementia (BPSD) are common and may be exacerbated by the hospital environment. Concerns have been raised about how BPSD are managed in this setting and about over reliance on neuroleptic medication. This study aimed to invest...
Pain is underdetected and undertreated in people with dementia. We aimed to investigate the prevalence of pain in people with dementia admitted to general hospitals and explore the association between pain and behavioural and psychiatric symptoms of dementia (BPSD). We conducted a longitudinal cohort study of 230 people, aged above 70, with dementi...
Background:
Prognostic accuracy in palliative care is valued by patients, carers, and healthcare professionals. Previous reviews suggest clinicians are inaccurate at survival estimates, but have only reported the accuracy of estimates on patients with a cancer diagnosis.
Objectives:
To examine the accuracy of clinicians' estimates of survival an...
Background
Clinicians are inaccurate at predicting survival. The ‘Surprise Question’ (SQ) is a screening tool that aims to identify people nearing the end of life. Potentially, its routine use could help identify patients who might benefit from palliative care services. The objective was to assess the accuracy of the SQ by time scale, clinician, an...
Objectives
To identify a group of palliative care doctors who perform well on a prognostic test and to understand how they make their survival predictions.
Design
Prospective observational study and two cross-sectional online studies.
Setting
Phase I: an online prognostic test, developed from a prospective observational study of patients referred...
Purpose
Prognostic understanding among patients with life-limiting diseases may help patient to make informed decisions about their care. The aim of our study was to assess the level of prognostic understanding among patients recently referred to an enhanced supportive care (ESC) service, to explore the factors associated with prognostic understand...
Introduction
Evaluating the impact of prognostic models in advanced cancer is challenging due to inconsistent outcome reporting and limited consideration of patient and caregiver perspectives. We have therefore developed a Core Outcome Set (COS), to assist with standardising the evaluation of prognostication in advanced cancer.
Aims
To achieve con...
Background
Family carers of people living with dementia provide care over many months or years with little to no formal support. Carers’ experiences of compassion for themselves and others including receiving compassion can influence their caregiving experience and the quality of care they provide. However, little is known about healthcare professi...
This is a protocol for a Cochrane Review (intervention). The objectives are as follows:
Primarily, to determine the effectiveness of a virtual reality (VR) intervention compared to an alternative or no intervention for people living with advanced cancer:
on pain intensity, adverse events (AEs) and serious adverse events (SAEs); and secondarily,...
Objective: Guidelines recommend that patients’ prognoses should be discussed by the palliative care multidisciplinary team. However, there is a lack of evidence on how multidisciplinary teams carry out prognostic discussions, and especially how prognostic talk is initiated during team meetings. This study explored how prognostic talk is initiated a...
Background
Studies of prognostication in advanced cancer use a wide range of outcomes and outcome measures, making it difficult to compare these studies and their findings. Core Outcome Sets facilitate comparability and standardisation between studies and would benefit future prognostic research. This qualitative study, the second step in a wider s...
Background
People living with terminal illness are at higher risk of experiencing financial insecurity. The variance in definitions of financial insecurity, in addition to its impact on the well-being of this population has not yet been systematically analysed.
Aim
To understand the definition, prevalence and impact of financial insecurity on the...
Background
Recommendations state that multidisciplinary team expertise should be utilised for more accurate survival predictions. How the multidisciplinary team discusses prognoses during meetings and how they reference time, is yet to be explored.
Aim
To explore how temporality is conveyed in relation to patients’ prognoses during hospice multidi...
Objective
Delirium and pain are common in older adults admitted to hospital. The relationship between these is unclear, but clinically important. We aimed to systematically review the association between pain (at rest, movement, pain severity) and delirium in this population.
Methods
PubMed, EMBASE, CINAHL, PsycINFO, Cochrane and Web of Science we...
Objective: Studies of prognostication in advanced cancer use a wide range of outcomes and outcome measures, making it difficult to compare these studies and their findings. Core Outcome Sets facilitate comparability and standardisation between studies and would benefit future prognostic research. This qualitative study is the second step in develop...
Introduction
We are developing a core outcome set (COS) to assess the impact of end-of-life prognostication (prediction of survival) in people living with advanced cancer. Whilst the accuracy of prognostication has been extensively studied, its impact on patients and their families remains underexplored. Understanding these experiences is essential...
Objective
To explore the clinical judgements of therapists in prescribing the intensity of hand strengthening exercise in rheumatoid arthritis (RA).
Methods
Phase I: Eleven therapists knowledgeable in treating patients with RA subjectively identified seven clinical cues. These were incorporated into 54 hypothetical patient case scenarios. Phase II...
Background
There is evidence that gender influences many aspects of end of life experience (Gott, Morgan, Williams. Palliat Care Social Pract. 2020; 14, 2632352420957997; Ullrich, Grube, Hlawatsch, et al. BMC Palliat Care. 2019; 18, 1–10). There is a need to understand whether gender inequity exists in palliative care services and how to adopt gend...
Background
Studies evaluating the impact of prognostication in advanced cancer patients vary in the outcomes they measure, and there is a lack of consensus about which outcomes are most important.
Aim
To identify outcomes previously reported in prognostic research with people with advanced cancer, as a first step towards constructing a core outcom...
Background:
Studies exploring the impact of receiving end-of-life prognoses in patients with advanced cancer use a variety of different measures to evaluate the outcomes, and thus report often conflicting findings. The standardization of outcomes reported in studies of prognostication in palliative cancer care could enable uniform assessment and r...
Objective
To evaluate the care of patients dying in hospital without support from specialists in palliative care (SPC), better understand their needs and factors influencing their care.
Methods
Prospective UK-wide service evaluation including all dying adult inpatients unknown to SPC, excluding those in emergency departments/intensive care units....
BACKGROUND
Studies exploring the impact of receiving end-of-life prognoses in patients with advanced cancer use a variety of different measures to evaluate the outcomes, and thus report often conflicting findings. The standardisation of outcomes reported in studies of prognostication in palliative cancer care could enable uniform assessment and rep...
The surprise question screening tool ("Would I be surprised if this person died within the next 12 months?") was initially developed to identify possible palliative care needs. One controversial topic regarding the surprise question is whether it should be used as a prognostic tool (predicting survival) for patients with life-limiting illnesses. In...
Conferences can be a space to present new research, network, and provide an opportunity for learning. Delegates can meet field leaders, peers, top doctors, and international colleagues in various areas of expertise. Challenging behaviours, in particular in the question and answer session, but also during lectures themselves, may reduce overall enjo...
Highlights
•This ESMO Clinical Practice Guideline provides key recommendations for using prognostic estimates in advanced cancer.
•The guideline covers recommendations for patients with cancer and an expected survival of months or less.
•An algorithm for use of clinical predictions, prognostic factors and multivariable risk prediction models is pre...
Context
People dying in hospitals without specialist palliative care (SPC) input may suffer with significant unmet needs, unrecognised until case-note audit after death.
Objectives
To evaluate the care of dying hospital inpatients unknown to SPC services across the United Kingdom to better understand their needs and identify factors impacting care...
Aims:
Improvements in cancer treatment have led to more people living with and beyond cancer. These patients have symptom and support needs unmet by current services. The development of enhanced supportive care (ESC) services may meet the longitudinal care needs of these patients, including at the end of life. This study aimed to determine the imp...
Introduction
Involving and engaging the patient and public in research as collaborative partners is essential, from the initial concept through to publication
Aims
We will host a conversation with two members of the public about their recent experience of working with researchers to develop a research project and apply for research funding.
Metho...
Introduction
We are developing a core outcome set (COS) for palliative cancer care research into prognostication (prediction of survival). Studies in this field often measure a variety of clinical and service-level outcomes, but do not routinely measure outcomes that are important to patients and carers. The experiences of these stakeholders are es...
Introduction
People with terminal illnesses may have spiritual and/or religious concerns and often value professional assistance with addressing these. It is again being increasingly recognised that, as Cicely Saunders originally argued, attending to the spiritual and/or religious needs of people approaching the end-of-life benefits their health an...
Background:
A second opinion or a prognostic algorithm may increase prognostic accuracy. This study assessed the level to which clinicians integrate advice perceived to be coming from another clinician or a prognostic algorithm into their prognostic estimates, and how participant characteristics and nature of advice received affect this.
Methods:...
Objectives
There have been many models of providing oncology and palliative care to hospitals. Many patients will use the hospital non-electively or semielectively, and a large proportion are likely to be in the last years of life. We describe our multidisciplinary service to treatable but not curable cancer patients at University Hospitals Sussex....
Background
The efficacy of virtual reality for people living with a terminal illness is unclear.
Aim
To determine the feasibility and effectiveness of virtual reality use within a palliative care setting.
Design
Systematic review and meta-analysis. PROSPERO (CRD42021240395).
Data sources
Medline, Embase, AMED, PsycINFO, CINAHL, Cochrane Central...
Background/aims:
A second opinion or a prognostic algorithm may help ensure prognostic accuracy. However, it is unexplored how healthcare professionals (HCPs) integrate prognostic advice from colleagues or algorithms.
This study assessed the level to which HCPs integrate advice from either another HCP or a prognostic algorithm into their prognost...
Background: Virtual Reality (VR) has the potential to ease patient symptomatology but its efficacy is not known.
Aim: A systematic review on the feasibility and effectiveness of VR intervention in a palliative care setting.
Methods: Medline, Embase, AMED, PsycINFO, CINAHL, Cochrane Central Register of Controlled Trials and Web of Science were searc...
Objective
To summarise evidence on how multidisciplinary team (MDTs) make decisions about identification of imminently dying patients. Design Scoping review. Setting Any clinical setting providing care for imminently dying patients, excluding studies conducted solely in acute care settings.
Data sources
The databases AMED, CINAHL, Embase, MEDLINE,...
Introduction
Visual imagery and creative activities may enable and promote identification of new research ideas and priorities.
Aims
We aimed to involve PPI participants in creative tasks, and thereby prompt their thoughts on what matters at the end-of-life and related research priorities, including developing research proposals.
Method
We employ...
Introduction
Virtual Reality (VR) has the potential to alleviate common mental and physical health symptoms at the end-of-life. There is limited data on the efficacy of VR in palliative care.
Aims
To review the feasibility and effectiveness of VR intervention within a palliative care setting.
Method
Medline, Embase, AMED, PsycINFO, CINAHL, Coc...
Introduction: Virtual Reality (VR) has the potential to alleviate common mental and physical health symptoms at the end-of-life. There is limited data on the efficacy of VR in palliative care. Aims To review the feasibility and effectiveness of VR intervention within a palliative care setting. / Method: Medline, Embase, AMED, PsycINFO, CINAHL, Coch...
Background
The Surprise Question (‘Would I be surprised if this patient died within 12 months?’) identifies patients in the last year of life. It is unclear if ‘surprised’ means the same for each clinician, and whether their responses are internally consistent.
Aim
To determine the consistency with which the Surprise Question is used.
Design
A cr...
Aims
People living with treatable but not curable cancer often experience a range of symptoms related to their cancer and its treatment. During the COVID-19 pandemic, face-to-face consultations were reduced and so remote monitoring of these needs was necessary. University Hospitals Sussex implemented the routine use of electronic remote patient-rep...
Palliative healthcare professionals give greater weight to advice from a prognostic algorithm rather than advice from another healthcare professional when predicting 2-week survival: the ADJUST study
Background:
In patients with advanced cancer, prognosis is usually determined using clinicians' predictions of survival (CPS). The palliative prognostic (PaP) score is a prognostic algorithm that was developed to predict survival in patients with advanced cancer. The score categorises patients into three risk groups in accordance with their probab...
Poster detailing our scoping review on prognostic decision-making within multidisciplinary teams. Abstract published in Palliative Medicine on September 20, 2021: https://doi.org/10.1177/02692163211035909. The review has been submitted for publication.
Background
Virtual Reality can help alleviate symptoms in a non-palliative care population. Personalized therapy can further alleviate these symptoms. There is little evidence in a palliative care population.
Aim
To understand the feasibility of repeated personalized virtual reality sessions in a palliative care population.
Design
A feasibility r...
Objectives
Research suggests that clinicians are not very accurate at prognosticating in palliative care. The ‘horizon effect’ suggests that accuracy ought to be better when the survival of patients is shorter. The aim of this study was to determine the accuracy of specialist palliative care clinicians at identifying which patients are likely to di...
Background
Impending death is not well recognised. As death occurs in any setting, at any time, it is vital that all healthcare professionals, have adequate training in palliative care. The aim of the survey was to understand what current training is available on the recognition of dying at undergraduate level.
Methods
A survey of the following UK...
Background:
People with dementia are at greater risk of being admitted to hospital where care may not be tailored to their needs. Interventions improving care and management are vital.
Aim:
Assess the effectiveness of interventions designed to improve the care and management of people with dementia in hospital.
Method:
Six medical and trial re...
Following publication of the original article [1], an error in reference 18 was reported.
Opinion statement:
Patients with advanced cancer and their families commonly seek information about prognosis to aid decision-making in medical (e.g. surrounding treatment), psychological (e.g. saying goodbye), and social (e.g. getting affairs in order) domains. Oncologists therefore have a responsibility to identify and address these requests by...
Objectives
Impending death is poorly recognised. Many undergraduate healthcare professionals will not have experience of meeting or caring for someone who is dying. As death can occur in any setting, at any time, it is vital that all healthcare students, regardless of the setting they go on to work in, have end-of-life care (EOLC) training. The aim...
Background
Recognising dying is a key clinical skill for doctors, yet there is little training.
Aim
To assess the effectiveness of an online training resource designed to enhance medical students’ ability to recognise dying.
Design
Online multicentre double-blind randomised controlled trial (NCT03360812). The training resource for the interventio...
Background
Impending death is not well recognised.1 Due to improvements in technology and medicine, people are living longer with more complex health conditions2 and because of this, the death of a patient is an experience that many people entering a healthcare profession will have little of. As death occurs in any setting, at any time, it is vital...
Objectives
The aims of this study were (1) to document the clinical condition of patients considered to be in the last 2 weeks of life and (2) to compare patients who did or did not survive for 72 hours.
Design
A prospective observational study.
Setting
Two sites in London, UK (a hospice and a hospital palliative care team).
Participants
Any inp...
An accurate prognosis about how long a terminally ill patient has left to live, when disclosed sensitively in open discussions, can facilitate patient-centred care and shared decision making. In addition, several guidelines, policies and funding streams rely, to some extent, on a clinician estimated prognosis. However, clinician predictions alone h...
Objectives
To determine the accuracy of predictions of dying at different cut-off thresholds and to acknowledge the extent of clinical uncertainty.
Design
Secondary analysis of data from a prospective cohort study.
Setting
An online prognostic test, accessible by eligible participants across the UK.
Participants
Eligible participants were member...
Background
The Surprise Question (SQ) “would I be surprised if this patient were to die in the next 12 months?” has been suggested to help clinicians, and especially General Practitioners (GPs), identify people who might benefit from palliative care. The prognostic accuracy of this approach is unclear and little is known about how GPs use this tool...
Introduction
Clinicians often struggle to recognise when palliative care patients are imminently dying (last 72 hours of life). A previous study identified the factors that expert palliative care doctors (with demonstrated prognostic skills) had used, to form a judgement about which patients were imminently dying. This protocol describes a study to...
Introduction: Clinicians often struggle to recognise whether palliative care patients are imminently dying.1 2 A previous study identified the factors that expert palliative care doctors (with demonstrated prognostic skills) had used to judge the probability of patients dying within 72 hours. / Aim and methods: To evaluate whether an online trainin...
Introduction
Evidence suggests that the majority of doctors are not very good at identifying when a patient is dying¹ however there is little training available to improve this skill. Even experts are unable to articulate how they recognise when a patient is dying other than by saying that ‘I just knew’.²
Aim
To understand how expert palliative ca...
Introduction
Clinicians often struggle to recognise whether palliative care patients are imminently dying.1 2 A previous study identified the factors that expert palliative care doctors (with demonstrated prognostic skills) had used to judge the probability of patients dying within 72 hours.
Aim and methods
To evaluate whether an online training r...
Background:
Pain and delirium are common in people with dementia admitted to hospitals. These are often under-diagnosed and under-treated. Pain is implicated as a cause of delirium but this association has not been investigated in this setting.
Objective:
To investigate the relationship between pain and delirium in people with dementia, on admis...
Doctors need to identify when palliative care patients are imminently dying so they can adjust their goals of care and treatment accordingly. The systematic review of the literature, completed as part of this thesis, showed that these decisions are very inaccurate. The aim of this thesis was to determine the judgement policies of expert prognostica...
Introduction
It has been shown that clinicians are inaccurate at prognostication (White et al., 2016) and recognising dying patients (Neuberger et al., 2013). Patients who would benefit from palliative care may be missed because validated prognostic tools (Pirovano et al., 1999; Morita et al., 1999) are not routinely used, either due to the perceiv...
Objectives:
The Cohen-Mansfield Agitation Inventory (CMAI; (Cohen-Mansfield and Kerin, 1986)) is a well-known tool for assessing agitated behaviours in people with dementia who reside in long-term care. No studies have evaluated the psychometric qualities and factor structure of the CMAI in acute general hospitals, a setting where people with dema...
Background
Before being able to plan for end of life care, a doctor must first recognise that a patient is dying. A recent review has highlighted that doctors are not very good at this (Neuberger, 2013).
Aim
We set out to develop a “test” to assess how accurate doctors are at recognising dying. The test will consist of case studies, or “vignettes”...
Breakdown of full study exclusion reasons.
(XLSX)
QUIPS risk assessment scores.
(DOCX)
Systematic Review Protocol.
(DOCX)
Search Strategy.
This is the strategy that was employed on the OVID platform and modified for other databases.
(DOCX)
Data used to complete the analysis of categorical estimates.
(XLSX)
Background:
Dementia is common in older people admitted to acute hospitals. There are concerns about the quality of care they receive. Behavioural and psychiatric symptoms of dementia (BPSD) seem to be particularly challenging for hospital staff. AIMS To define the prevalence of BPSD and explore their clinical associations.
Method:
Longitudinal...
It has been documented that pain in people with dementia is often under-reported and poorly detected. The reasons for this are not clearly defined. This project aimed to explore semantic concepts of pain in people with dementia and whether this is associated with clinical pain report.
Cohort study with nested cross-sectional analysis.
Acute general...
People with dementia admitted to acute hospitals often receive poor care, many of whom die in this setting. The BePaid study (Behaviour and Pain in Dementia) is funded jointly by Alzheimer's Society and the BUPA Foundation.
A longitudinal cohort study in two London hospitals providing evidence about mortality rates, pain and carer satisfaction usin...
