Katrina Breaden

Preliminary development and validation of a new end-of-life patient-reported outcome measure assessing the ability of patients to finalise their affairs at the end of life

Introduction The ability of patients to finalise their affairs at the end of life is an often neglected aspect of quality of life (QOL) measurement in palliative care effectiveness research despite compelling evidence of the high value patients place on this domain. Objective This paper describes the preliminary development and evaluation of a new, single-item, end-of-life patient-reported outcome measure (EOLPRO) designed to capture changes in the ability of patients to finalise their affairs at the end of life. Methods Cognitive interviews with purposively sampled Australian palliative care patients (N = 9) were analysed thematically to explore content validity. Simultaneously, secondary analysis of data from a randomised controlled trial comparing ketamine and placebo for the management of cancer pain (N = 185) evaluated: construct validity; test-retest reliability; and responsiveness. Results Preliminary findings suggest patients interpret the new measure consistently. The EOLPRO captures the ability to complete physical tasks and finalise practical matters although it is unclear whether emotional tasks or resolution of relationship issues are considered. Personal and financial affairs should be separated to allow for differences in ability for these two types of affairs. The significant correlation between performance status and EOLPRO scores (r = 0.41, p<0.01, n = 137) and expected relationships between EOLPRO and proximity to death and constipation demonstrated construct validity. Pre- and post-treatment EOLPRO scores moderately agreed (n = 14, κ = 0.52 [95% CI 0.19, 0.84]) supporting reliability. The measure’s apparent lack of sensitivity to discriminate between treatment responders and non-responders may be confounded. Conclusion Based on the preliminary findings, the EOLPRO should be separated into ‘personal’ and ‘financial’ affairs with further testing suggested, particularly to verify coverage and responsiveness. Initial evaluation suggests that the single-item EOLPRO is a useful addition to QOL outcome measurement in palliative care effectiveness research because common palliative care specific QOL questionnaires do not include or explicitly capture this domain.

Recent Advances in the Management of Breathlessness

Breathlessness is a frightening symptom to both witness and experience. It is common in many conditions, especially in the palliative setting, profoundly affecting the quality of the person’s life. The purpose of this article is to provide an overview of the recent advances in the management of breathlessness in the areas of, knowledge of disease trajectories, assessment, pharmacological and non-pharmacological interventions and the use of oxygen.

Refractory suffering: The impact of team dynamics on the interdisciplinary palliative care team

OBJECTIVE This qualitative study aimed to describe the skill sets that experienced palliative care clinicians possess when managing refractory suffering. METHOD Thirteen tape recorded semi-structured interviews and four online questionnaires were completed by participants with at least two years clinical palliative care experience. The research team undertook cross sectional thematic analysis of the transcribed interviews. RESULTS In the face of refractory suffering, team cohesion was identified as a key requirement to support the interdisciplinary team. However, team cohesion was found to be undermined by philosophical differences between team members, a paradigm shift concerning cure versus care and individual opinions regarding the chosen approach and levels of respect between the individual disciplines involved in the care of a person with a life limiting illness. SIGNIFICANCE OF RESULTS The findings of this study highlight the precarious nature of the interdisciplinary team when significant challenges are faced. As a result of witnessing refractory suffering the division and fracturing of teams can easily occur; often team members are completely unaware of its cause. The findings of this study contribute to the limited literature on the nature of refractory suffering from the perspective of the interdisciplinary team.

Teaching palliative care across cultures: The singapore experience

Palliative care is a growing area of practice throughout the world and its promotion relies on adequately trained health care professionals. However, there are only a limited number of postgraduate academic courses or clinical training opportunities available, especially in resource challenged areas of the Asia Pacific region. This article outlines a creative endeavour between Flinders University, Adelaide Australia, the Singapore National Cancer Centre and the Asia Pacific Hospice and Palliative Care Network to provide an educational opportunity for students from the region. The strengths of the programme include its strong theoretical and evidenced-based framework, its multidisciplinary inclusiveness and its innovative and interactive teaching style. The main teaching challenge for the teaching team is to deliver culturally appropriate curricula to students from diverse cultural and linguistic backgrounds. This postgraduate programme is an important initiative for the region and for the development of future leaders and pioneers in the discipline.

‘You’ll never hear them say “you’re cured”’: the language of tragedy in cancer care

Abstract Young women diagnosed with advanced breast cancer live with an illness that currently cannot be cured. There are many discourses, or ways of seeing and speaking about the world, that these young women draw upon as they try and make sense of their illness. This article explores several of these discourses, in particular the discourse of tragedy, as it weaves its way through the professional and lay press and through interview accounts of young women living with advanced disease. Using a critical form of textual analysis, I trace the discourse of tragedy through the Australian newsprint media in the period between 1996 and 2000, through interviews with 12 young women with advanced breast cancer and into the ‘expert’ literature. I argue that the ‘expert’ discourse of tragedy positions these young women in unhelpful ways making it very difficult for them to talk of suffering and survival in the midst of living with the real possibility of dying before their time, often leaving children to grow up without them.

Asia Pacific Palliative Care Development Through Education

an odds ratio of 5.2 following pramipexole therapy in patients with a Hoehn and Yahr stage less than three. Methylphenidate also is being increasingly used for decreasing PD-related fatigue. It mediates its effects through its blocking effect on norepinephrine transporters in the corpus striatum. It also acts on the prefrontal cortex. Inaddition,methylphenidateblockspresynaptic dopamine transporters, which further abrogates PD-related fatigue. The usual effective dose is a treatment regimen including 10 mg administered three times a day. Modafinil is also emerging as an agent with significant efficacy in mitigating PD-associated fatigue. A significant improvement in scores on the Epworth Sleepiness Scale is seen following modafinil therapy. This has been confirmed by Tyne et al. in a recent study in which patients were administered a maximum dosage of 400 mg daily, which was increased over the duration of a month. Part of the fatigue in patients with PD can be attributed to dopamine deficiency. As a result, levodopa administration does improve fatigue in PD patients to some extent by virtue of its direct dopaminergic effects. Thus far, the above treatment options have shown considerable promise. There is a need to increase awareness about these treatment options among physicians treating patients with PD-associated fatigue.

Stigma and the in(visible) perspectives and expectations of home oxygen therapy among people with chronic breathlessness syndrome: A qualitative study

Background: Chronic breathlessness syndrome in the context of advancing disease is distressing for all concerned. Oxygen is commonly prescribed in this setting; however, little is known about the perspectives of breathless people who either are on oxygen or are yet to have it prescribed. Aim: To understand and describe the perspectives and experiences of breathless people towards oxygen use at home. Design: This qualitative study utilised an interpretive description approach using semi-structured interviews and thematic analysis. Setting/participants: A total of 19 people with chronic breathlessness syndrome living in South Australia participated in semi-structured interviews. Participants were divided into sub-groups according to whether they were chronically breathless and (1) not using home oxygen (n = 6), (2) using funded home oxygen for severe hypoxaemia (n = 7) and (3) using home oxygen for palliation outside of funding guidelines (n = 6). Results: Three main themes were identified: (1) managing distress and living with chronic breathlessness syndrome, with or without oxygen, requires a range of self-management strategies; (2) expectations of oxygen use: ‘Not as good as I thought it would be’; and (3) the stigma of using oxygen: the visible and invisible. Conclusion: People living with chronic breathlessness struggle daily with both the progression of the underlying disease and the distressing nature of the syndrome. While oxygen does provide benefit for some people, its use and the perceptions of its use are often associated with both the visible and invisible manifestations of stigma. Clinicians need to promote self-management strategies and give careful thought to the prescribing of home oxygen, especially outside the current funding guidelines.

Dyspnea Management in Palliative Home Care: A Case Series in Malaysia

Managing dyspnea at home is a challenging task. Although a competent palliative home care team can assist a patient to live at home with better pain control, dyspnea is usually not as well managed. In the Asian context, there are few research studies in dyspnea management in palliative home care. This paper aims to illustrate the cultural context that has an impact on dyspnea management at home and the assessment and management of dyspnea in a community palliative care setting in Malaysia. This paper reports on a study of 5 dyspneic patients suffering from both cancer-related and non–cancer-related dyspnea. Its focus is on a unique Asian cultural belief system that affects communication about prognosis and the role of family in palliative home care. In addition, this paper also describes dyspnea assessment, the barriers to morphine use, benzodiazepine prescription, oxygen therapy, and nonpharmacologic intervention in this center.