Papers by Josephine Clayton
New Challenges in Communication with Cancer Patients, 2012
Nephrology (Carlton, Vic.), Jan 10, 2016
Advancse care planning (ACP) in nephrology is widely advocated but not always implemented. The ai... more Advancse care planning (ACP) in nephrology is widely advocated but not always implemented. The aims of this study were to describe current ACP practice, identify barriers/facilitators and perceived need for health professional education and chronic kidney disease (CKD)-specific approaches. An anonymous cross-sectional survey was administered online. Nephrology health professionals in Australia and New Zealand were recruited via professional societies, email lists and nephrology conferences. Multiple regression explored the influence of respondents' attributes on extent of involvement in ACP and willingness to engage in future. 375 respondents included nephrologists (23%), nurses (65%), social workers (4%) and others (8%). 54% indicated that ACP at their workplace was performed ad-hoc and 61% poorly. Perceived barriers included patient/family discomfort (84%), difficulty engaging families (83%), lack of clinician expertise (83%) and time (82%), health professional discomfort (72%...
Research in Developmental Disabilities, 2016
Adults with intellectual disability (ID) are thought to understand less about death than the gene... more Adults with intellectual disability (ID) are thought to understand less about death than the general population but there is no available research demonstrating this. Further, the detail of any possible differences in understanding is unknown. We compared the responses of 39 adults with mild or moderate ID and 40 disability staff (representing the general population) on (a) understanding the concept of death, (b) knowledge of and self-determination about end-of-life planning, and (c) fear-of-death. We found that adults with ID had a significantly poorer understanding of the concept of death, knew much less about and were less self-determined about end-of-life planning, but reported greater fear-of-death. We demonstrated, for the first time, the feasibility of assessing end-of-life planning and fear-of-death among adults with ID. The poorer understanding and lower levels of self-determination we found suggest that future research should develop and evaluate interventions to increase understanding and self-determination.
Cancer, 2005
BACKGROUND. It is challenging for clinicians to foster coping and allow hope when discussing prog... more BACKGROUND. It is challenging for clinicians to foster coping and allow hope when discussing prognosis and end-of-life (EOL) issues with terminally ill cancer patients and their caregivers. To the authors' knowledge, little research evidence is currently available to guide clinical practice.
Psycho-Oncology, 2015
A clinical pathway for anxiety and depression in adult cancer patients was developed to guide bes... more A clinical pathway for anxiety and depression in adult cancer patients was developed to guide best practice in Australia. The pathway was based on a rapid review of existing guidelines, systematic reviews and meta-analyses, stakeholder interviews, a Delphi process with 87 multidisciplinary stakeholders and input from a multidisciplinary advisory panel. The pathway recommends formalized routine screening for anxiety and depression in patients with cancer at key points in the patient's journey. The Edmonton Symptom Assessment System or distress thermometer with problem checklist is recommended as brief screening tools, combined with a more detailed tool, such as the Hospital Anxiety and Depression Scale, to identify possible cases. A structured clinical interview will be required to confirm diagnosis. When anxiety or depression is identified, it is recommended that one person in a treating team takes responsibility for coordinating appropriate assessment, referral and follow-up (not necessarily carrying these out themselves). A stepped care model of intervention is proposed, beginning with the least intensive available that is still likely to provide significant health gain. The exact intervention, treatment length and follow-up timelines, as well as professionals involved, are provided as a guide only. Each service should identify their own referral network based on local resources and current service structure, as well as patient preference. This clinical pathway will assist cancer services to design their own systems to detect and manage anxiety and depression in their patients, to improve the quality of care. Copyright © 2015 John Wiley & Sons, Ltd.
Patient Education and Counseling, 2015
To identify and synthesise evidence for interventions targeting end-of-life communication. Databa... more To identify and synthesise evidence for interventions targeting end-of-life communication. Database, reference list and author searches were conducted to identify evaluations of end-of-life communication-focussed interventions. Data were extracted, synthesised and QUALSYST quality analyses were performed. Forty-five studies met inclusion criteria. Interventions targeted patients (n=6), caregivers (n=3), healthcare professionals (HCPs n=24) and multiple stakeholders (n=12). Interventions took various forms including communication skills training, education, advance care planning and structured practice changes. Substantial heterogeneity in study designs, outcomes, settings and measures was apparent and study quality was variable. A substantial number of end-of-life communication interventions have been evaluated. Interventions have particularly targeted HCPs in cancer settings, though patient, caregiver and multi-focal interventions have also been evaluated. While some interventions were efficacious in well-designed RCTs, most evidence was from less robust studies. While additional interventions targeting patients and caregivers are needed, multi-focal interventions may more effectively remove barriers to end-of-life communication. Despite the limitations evident in the existing literature, healthcare professionals may still derive useful insights into effective approaches to end-of-life communication if appropriate caution is exercised. However, additional RCTs, implementation studies and cost-benefit analyses are required to bolster arguments for implementing and resourcing communication interventions.
Supportive Care in Cancer, 2015
Purpose People with cancer and their families experience high levels of psychological morbidity. ... more Purpose People with cancer and their families experience high levels of psychological morbidity. However, many cancer services do not routinely screen patients for anxiety and depression, and there are no standardized clinical referral pathways. This study aimed to establish consensus on elements of a draft clinical pathway tailored to the Australian context. Methods A two-round Delphi study was conducted to gain consensus among Australian oncology and psycho-oncology clinicians about the validity of 39 items that form the basis of a clinical pathway that includes screening, assessment, referral and stepped care management of anxiety and depression in the context of cancer. The expert panel comprised 87 multidisciplinary clinician members of the Australian Psycho-oncology Co-operative Research Group (PoCoG). Respondents rated their level of agreement with each statement on a 5-point Likert scale. Consensus was defined as >80 % of respondents scoring within 2 points on the Likert scale.
Evidence-based medicine, 2015
ABSTRACT Commentary on: Moroni MZocchi DBolognesi Det al, on behalf of the SUQ-P group. The ‘surp... more ABSTRACT Commentary on: Moroni MZocchi DBolognesi Det al, on behalf of the SUQ-P group. The ‘surprise’ question in advanced cancer patients: a prospective study among general practitioners. Palliat Med 2014; 28:, 959- 64. Context The ‘surprise’ question has been developed in order to improve the ability of clinicians to identify patients who are at risk of dying in the near future. The question, ‘Would I be surprised if this patient died in the next year?’ shifts the focus away from precise identification of dying patients to identifying patients who might be dying.1 This may enable more patients to receive timely assessment and planning for their supportive care needs.
American journal of kidney diseases : the official journal of the National Kidney Foundation, 2014
Internal Medicine Journal, 2014
Advance care planning (ACP) has been shown to provide beneficial outcomes for elderly patients; h... more Advance care planning (ACP) has been shown to provide beneficial outcomes for elderly patients; however, it may not be commonly implemented. To assess prevalence of advance care directives (ACD) and documented medical orders about end-of-life care for elderly inpatients; to explore the feasibility of an ACP screening interview. A single-centre cross-sectional analysis of 100 consecutive patients aged ≥80 years admitted for ≥48 h to a tertiary referral hospital, conducted between 16 and 18 January 2013. Medical records were reviewed for presence of (i) an ACD, (ii) resuscitation/end-of-life care intervention orders (REOL) and (iii) documented substitute decision-maker (SDM). If patients were able and willing to participate they completed an ACP screening interview exploring (i) their views on ACP and (ii) if an ACD was previously documented. In 100 medical records, there were: zero ACD, 17 REOL and 8 with clear documentation of patients' preferred SDM. Out of 100 patients, 33 completed the interview: 32 (97%) were able to identify their preferred SDM, in 9 (27%) the nominated SDM was different from their 'next of kin'. Out of 33, 7 (21%) reported having an enduring guardian, 4/33 (12%) an ACD. Out of 29, 23 (79%) interviewees without an ACD were interested in discussing ACP further. Out of 30, 8 (27%) interviewees without REOL said that they would not wish to have aggressive life-prolonging measures. No patients reported discomfort with the screening interview. ACD and correct documentation of SDM were uncommon in the medical records in this sample of elderly inpatients. The ACP screening interview appears feasible and acceptable and may be a useful tool for identifying patients' preferred SDM and willingness to discuss ACP further.
British journal of cancer, 2003
Question prompt lists (QPLs) have been shown to be an inexpensive and effective communication too... more Question prompt lists (QPLs) have been shown to be an inexpensive and effective communication tool for patients in oncology consultations. We aimed to develop and pilot a QPL for palliative care (PC) patients. In order to identify suitable questions for inclusion in the QPL, we conducted focus groups and individual interviews with 19 patients, 24 carers and 22 PC health professionals. A further 21 health professionals reviewed the draft document. The draft QPL was piloted in 23 patients. In total, 112 questions were identified and grouped into eight categories. All participants felt that the QPL, in booklet form, could be a useful tool. Out of 23 patients in the pilot study, 22 agreed that the QPL was helpful, contained useful questions, was easy to understand and would be useful in the future. State anxiety (STAI) decreased after receiving the booklet and seeing the doctor in 16 out of 19 patients (overall anxiety decreased by a median of 8, IQR 1-13). Participants in the pilot stu...
Journal of Intellectual and Developmental Disability, 2015
Acknowledgments This systematic,review was,prepared,by the NHMRC Clinical Trials Centre in collab... more Acknowledgments This systematic,review was,prepared,by the NHMRC Clinical Trials Centre in collaborationwith the Medical Psychology Research,Unit at the University of Sydney. It was funded,by a NHMRC Palliative Care Research,Grant entitled ‘Discussing prognosis,and end-of-life issues in palliative care; current practice and development,ofan,evidence-based,training program’. Chief Investigators were Josephine Clayton, Phyllis Butow, Martin Tattersall, and David Currow. Dr Josephine Clayton is supported by a
Supportive Care in Cancer, 2011
This study aimed to explore the effect of physician endorsement of question-asking on advanced ca... more This study aimed to explore the effect of physician endorsement of question-asking on advanced cancer patients' question-asking behaviour during consultations about palliative care and to explore other potential predictors of patient question-asking. Data were obtained from 80 control group patients from a randomised controlled trial of standard palliative care (PC) consultation (control group) versus provision of a question prompt list (QPL) before the consultation. Consecutive eligible patients with advanced cancer referred to 15 PC physicians from nine Australian PC centres participated. Baseline measures were obtained from patients; consultations were audiotaped, transcribed and analysed by blinded coders; and physicians estimated the patients' survival. Endorsement of question-asking by the physician was not related to the number of patient questions. Patients with the highest anxiety levels asked 3.5 times as many questions as those with least anxiety (incidence rate ratio (IRR) = 3.54, 95% confidence interval (CI) 1.90-6.59, P = 0.001). After allowing for the effect of anxiety, patients with an estimated survival of >12 weeks asked 76% more questions (IRR = 1.76, 95% CI 1.03-3.00, P = 0.04), whereas age, sex, educational background, occupation, information and involvement preferences and presence of a caregiver were not related to patient question-asking behaviour. Physician endorsement of question-asking alone does not appear to increase questions by advanced cancer patients during consultations about PC. Additional resources such as QPLs may be needed to facilitate patient question-asking.
Supportive Care in Cancer, 2005
Supportive Care in Cancer, 2005
Goals of work: Discussing end-of-life issues is of key importance to terminally ill cancer patien... more Goals of work: Discussing end-of-life issues is of key importance to terminally ill cancer patients and their families, and a challenging topic for both health professionals and patients/carers. There is a lack of research evidence in the literature to guide clinical practice. The objective of this study was to explore the optimal content and phrasing of information when discussing the dying process and end-of-life issues with terminally ill cancer patients and their carers. Subjects and methods: We conducted focus groups and individual interviews with 19 palliative care patients and 24 carers from three palliative care services in Sydney, and 22 palliative care health professionals from around Australia. The focus groups and individual interviews were audiotaped and fully transcribed. Further focus groups and/ or individual interviews were conducted until no additional topics were raised. Participants' narratives were analysed using qualitative methodology. Main results: Distinct content areas emerged for discussing end-oflife issues: treatment decisions at the end-of-life; potential future symptoms; preferences for place of death; the process of dying; what needs to be done immediately after death; and existential issues. When discussing the process of dying participants recommended: exploring the persons' fears about dying and dispelling myths; describing the final days and the likely unconscious period; and the reduced need for food and fluids. Many participants identified the dilemma regarding whether to discuss potential complications around the time of death. Conclusions: This paper provides strategies, words and phrases which may inform discussions about the process of dying and end-of-life issues. Further research is needed to determine the generalizability of these findings.
Psycho-Oncology, 2008
The aim of this systematic review was to examine studies that have investigated sustaining hope d... more The aim of this systematic review was to examine studies that have investigated sustaining hope during prognostic and end-of-life issues discussions with terminally ill patients and their families. A comprehensive search of databases (MEDLINE, EMBASE, CINAHL, PsychINFO, Cochrane Central Register of Controlled Trials) and handsearching, from 1985 to June 2006, identified 27 studies. This review suggests that the issues surrounding hope in this context are complex. Despite the lack of unanimity among researchers regarding the definition of hope, findings suggest that balancing hope with honesty is an important skill for health professionals (HPs). Many patients seem to be able to maintain a sense of hope despite acknowledging the terminal nature of their illness. Patients and caregivers mostly preferred honest and accurate information, provided with empathy and understanding. Many different sources of hope were identified in this context in broad aspects of life, not just the medical situation. HPs need to recognize this spectrum of hope and appreciate that patients may simultaneously hope for 'cure' while acknowledging the terminal nature of their illness. HPs may help patients to cope with their terminal prognosis by exploring and fostering realistic forms of hope that are meaningful for the particular patient and their family.
Palliative Medicine, 2013
We developed a novel individualised training program regarding end-of-life communication, designe... more We developed a novel individualised training program regarding end-of-life communication, designed to be time effective for busy junior-doctors working in hospital settings. Aim: We aimed to pilot this brief individualised training program with junior-doctors to explore its acceptability, feasibility and effect on the doctors' confidence, communication skills, attitudes towards psychosocial care and burnout. Design: The content of the training intervention was informed by a systematic literature review and evidence-based clinical practice guidelines regarding end-of-life communication. The intervention was based on sound educational principles and involved three one-hour teaching sessions over a three-week period, including two individual sessions with an expert facilitator and simulated patient/caregiver. In addition, participants received written and audiovisual take-home learning materials.
Palliative Medicine, 2003
All patients receiving parenteral antibiotics in a palliative care unit were prospectively monito... more All patients receiving parenteral antibiotics in a palliative care unit were prospectively monitored over a 13-month period. Of 913 consecutive admissions, 41 patients received 43 courses of parenteral antibiotics. On 27 of 43 occasions, the use of parenteral antibiotics was considered helpful (62%), in eight cases it was considered unhelpful (19%) and in a further eight cases the outcome could not be assessed (19%). The sites of infection for which parenteral antibiotics were prescribed included urinary tract infections (37%), lower respiratory tract infections (26%), soft tissue/skin or wound infections (16%), purulent terminal respiratory secretions (5%) and other (16%). In this sample, urinary tract infections were more commonly associated with a positive outcome than other indications combined (88% versus 48%, respectively). There appeared to be no association between outcome of use and age of the patient (median age 70, range 37-90), underlying diagnosis (HIV versus advanced malignancy) and reason for admission (symptom control versus respite care versus terminal care). However, outcomes appeared to vary in this sample according to the palliative care phase of the patient at the time parenteral antibiotics were administered. Positive outcomes were more common in terminal- (83%) and stable-phase (71 %) patients than deteriorating- (58%) or acute-phase (38%) patients. This survey demonstrates that in specific circumstances a beneficial role exists for the use of parenteral antibiotics in a palliative care setting. The establishment of appropriate guidelines is recommended.
Palliative Medicine, 2007
Many health professionals (HPs) express discomfort at having to broach the topic of prognosis, in... more Many health professionals (HPs) express discomfort at having to broach the topic of prognosis, including limited life expectancy, and may withhold information or not disclose prognosis. A systematic review was conducted of 46 studies relating to truth-telling in discussing prognosis with patients with progressive, advanced life-limiting illnesses and their caregivers. Relevant studies meeting the inclusion criteria were identified by searching computerized databases (MEDLINE, EMBASE, CINAHL, PsychINFO and Cochrane Register of Controlled Trials) up to November 2004, with handsearching of studies, as well as inclusion of studies satisfying selection criteria reported in 2005 by the authors. The reference lists of identified studies were hand-searched for further relevant studies. Inclusion criteria were studies of any design evaluating communication of prognostic information that included adult patients with an advanced, life-limiting illness; their caregivers; and qualified HPs. Results showed that although the majority of HPs believed that patients and caregivers should be told the truth about the prognosis, in practice, many either avoid discussing the topic or withhold information. Reasons include perceived lack of training, stress, no time to attend to the patient's emotional needs, fear of a negative impact on the patient, uncertainty about prognostication, requests from family members to withhold information and a feeling of inadequacy or hopelessness regarding the unavailability of further curative treatment. Studies suggest that patients can discuss the topic without it having a negative impact on them. Differences and similarities in findings from different cultures are explored.
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Papers by Josephine Clayton