Philip Larkin

Prognostic factors in advanced cancer patients: Evidence-based clinical recommendations - A study by the Steering Committee of the European Association for Palliative Care

PURPOSE To offer evidence-based clinical recommendations concerning prognosis in advanced cancer patients. METHODS A Working Group of the Research Network of the European Association for Palliative Care identified clinically significant topics, reviewed the studies, and assigned the level of evidence. A formal meta-analysis was not feasible because of the heterogeneity of published studies and the lack of minimal standards in reporting results. A systematic electronic literature search within the main available medical literature databases was performed for each of the following four areas identified: clinical prediction of survival (CPS), biologic factors, clinical signs and symptoms and psychosocial variables, and prognostic scores. Only studies on patients with advanced cancer and survival < or = 90 days were included. RESULTS A total of 38 studies were evaluated. Level A evidence-based recommendations of prognostic correlation could be formulated for CPS (albeit with a series of limitations of which clinicians must be aware) and prognostic scores. Recommendations on the use of other prognostic factors, such as performance status, symptoms associated with cancer anorexia-cachexia syndrome (weight loss, anorexia, dysphagia, and xerostomia), dyspnea, delirium, and some biologic factors (leukocytosis, lymphocytopenia, and C-reactive protein), reached level B. CONCLUSION Prognostication of life expectancy is a significant clinical commitment for clinicians involved in oncology and palliative care. More accurate prognostication is feasible and can be achieved by combining clinical experience and evidence from the literature. Using and communicating prognostic information should be part of a multidisciplinary palliative care approach.

Multilingual Translation Issues in Qualitative Research Reflections on a Metaphorical Process

Focus on the translation and validation of measurement instruments has left a gap in the discussion on how to construct multilingual qualitative tools, such as interviews. Traditional methods of forward and backward translation have been criticized for weak conceptual equivalence, a crucial issue when multiple language interview methods are used.Through a creative arts metaphor of weaving, the authors describe an alternative process of multicentric translation used in the development of an interview guide designed to explore the impact of transition on palliative care patients in six European countries. Four identified core constructs illuminate this multicentric process: Cohesion, Congruence, Clarity, and Courtesy. Mutual reciprocity between researcher and translator offers greater possibility for construction of nuance and meaning, particularly where cultural parameters influence the collection and meaning of sensitive data from vulnerable populations. The translator therefore becomes a collaborator in the research process, which strengthens the rigor of language-based inquiry.

A Relational Ethical Dialogue With Research Ethics Committees

The aim of this article is to take relational ethics concepts and apply them to the context of application to research ethics committees for approval to carry out research. The process of a multinational qualitative research application is described. The article suggests that a relational ethics approach can address two issues: how qualitative proposals are interpreted by research ethics committees and how this safeguards potentially vulnerable respondents. In relational terms, the governance of a research project may be enhanced by shared ownership and willingness to engage in mutual dialogue. This challenges both researchers and research ethics committees to reframe their understanding of roles and functions in the assessment of research protocols, particularly those of a qualitative nature and those that address end-of-life issues.

The unmet palliative care needs of those dying with dementia

An estimated 33.9 million people are living with dementia worldwide. The overall estimated median survival time from onset of dementia to death is 4.1 years for men and 4.6 years for women, with longer survival times in those with early-onset dementia. Much has been discussed about the needs of this vulnerable group of people particularly in terms of their health-care and end-of-life care (EoLC) needs. However, the literature suggests that people with end-stage dementia are still not receiving adequate or appropriate EoLC. Difficulty diagnosing dementia, a stigma surrounding the disease, lack of education of the dementia disease process and the ability to identify complications encountered at end-stage dementia by health-care providers, families and carers are some of the factors preventing those with dementia receiving effective EoLC. Great strides have been made to improve dementia palliative care; however, this cohort of patients still receive fewer referrals to appropriate palliative care services than other terminally ill patients.

‘One voice, one vision’ A message for palliative care nursing in Europe

UNITED KINGDOM John Costello Senior Lecturer, University of Manchester Prof. Bridget Johnston Florence Nightingale Foundation Chair of Clinical Nursing Practice Research, School of Medicine, Dentistry and Nursing, College of Medical, Veterinary and Life Sciences, University of Glasgow and NHS Greater Glasgow and Clyde Daniel Kelly RCN Chair of Nursing Research, School of Healthcare Sciences, Cardiff University Diane Laverty Nurse Consultant in Palliative Care, St Joseph’s Hospice, London Carole Mula Macmillan Nurse Consultant in Palliative Care and Professional Lead Nurse for Division of Clinical Support Services, The Christe NHS Foundation Trust, Manchester Brian Nyatanga Senior Lecturer, University of Worcester Julie Skilbeck Senior Lecturer, Sheffield Hallam University Dion Smyth Lecturer-practitioner in Cancer and Palliative Care, Birmingham City University Anna-Marie Stevens Macmillan Nurse Consultant Cancer Palliative Care, The Royal Marsden NHS Foundation Trust, London

Listening to that still small voice

I Sam. 3:1-10, 19 And the child Samuel ministered unto the Lord before Eli. And the word of the Lord was precious in those days; there was no open vision. And it came to pass at that time, when Eli was laid down in his place, and his eyes began to wax dim, that he could not see; And ere the lamp of God went out in the temple of the Lord, where the ark of God was, and Samuel was laid down to sleep; That the Lord called Samuel: and he answered, Here am I. And he ran unto Eli, and said, Here am I; for thou calledst me. And he said, I called not; lie down again. And he went and lay down. And the Lord called yet again, Samuel. And Samuel arose and went to Eli, and said, Here am I; for thou didst call me. And he answered, I called not, my son; lie down again. Now Samuel did not yet know the Lord, neither was the word of the Lord yet revealed unto him. And the Lord called Samuel again the third time. And he arose and went to Eli, and said, Here am I; for thou didst call me. And Eli perceived that the Lord had called the child. Therefore Eli said unto Samuel, Go, lie down: and it shall be, if he call thee, that thou shalt say, Speak, Lord; for thy servant heareth. So Samuel went and lay down in his place. And the Lord came, and stood, and called as at other times, Samuel, Samuel. Then Samuel answered, Speak; for thy servant heareth.