BMC GERIATRICS | Online – 19 August 2015 – Few patients and relatives [i.e., study participants] had participated in conversations about end-of-life care. Most relatives wanted such conversations, while the patients’ opinions varied. With some exceptions, patients and relatives wanted to be informed about the patient’s health condition. The majority wanted to be involved in the decision-making process, but leave the final decisions to the health professionals. Among the patients, the opinion varied; some patients wanted to leave the decisions more or less completely to the nursing home staff. Conversations about end-of-life care issues are emotionally challenging, and very few patients had discussed these questions with their family. The relatives’ opinions of the patient’s preferences were mainly based on assumptions; they had seldom talked about this explicitly. Both patients and relatives wanted the staff to raise these questions.
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BMC PALLIATIVE CARE | Online – 25 July 2015 – Four key factors influencing good practice in end of life care for people with dementia were identified from the expert interviews: 1) Leadership and management of care; 2) Integrating clinical expertise; 3) Continuity of care: and, 4) Use of guidelines. The relationships between the four key factors are important. Leadership and management of care have implications for the successful implementation of guidelines, while the appropriate and timely use of clinical expertise could prevent hospitalisation and ensure continuity of care. A lack of integration across health and social care can undermine continuity of care.
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BMC PALLIATIVE CARE | Online – 4 August 2015 – The top five research priorities identified in this study were: 1) Children’s understanding of death and dying; 2) Managing pain in children where there is no morphine; 3) Funding; 4) Training; and, 5) Assessment of the WHO two-step analgesic ladder for pain management in children. Information from this study is important for policy makers, educators, advocates, funding agencies, and governments ... [and] ... provides a much needed starting place for the allocation of funds and building research infrastructure.
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BMC PALLIATIVE CARE | Online – 25 July 2015 – This paper describes the shifts in care approaches and attitudes that relatives and professionals perceive as the death of a person with intellectual disabilities (ID) approaches, as well as the values underlying these shifts: 1) Adapting to a new strategy of comforting care, taking over tasks and symptom relief; 2) Interweaving of emotional and professional involvement; 3) Stronger reliance on the joint interpretation of signals expressing distress and pain; 4) Magnified feeling of responsibility in medical decisions; and, 5) Intensified caring relationship between ‘two families’: relatives and care staff. Six relational values were behind these shifts: 1) “Being there” for the person with ID; 2) “Being responsive” to the person’s needs; 3) “Reflection’ on their own emotions and caring relationships; 4) “Attentiveness” to the ID person’s wishes and expressions of distress; 5) “Responsibility’ for taking joint decisions in the best interests of the person; and, 6) “Openness to cooperation and sharing” the care with others. End-of-life care for people with ID involves curtailing expectations of participation and skill acquirement, and an increase in teamwork featuring intensified comforting care, symptom management and medical decision- making. Three caring relationships need to be fostered: 1) The relationship with the person with ID; 2) Relationships among professionals; and, 3) The relationship between relatives and professionals. ID care services should invest particularly in the emotional support and expertise level of care staff, and in the collaboration between relatives and professionals.
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PALLIATIVE MEDICINE | Online – Accessed 11 August 2015 – Eighty experts from 15 European countries evaluated 52 items within the following 13 norms: 1) Equity of access; 2) Communication; 3) Recognising the need for palliative care; 4) Assessment of total needs; 5) Symptom management; 6) End of life decision making; 7) Involving those who matter; 8) Collaboration; 9) Support for family/carers; 10) Preparing for death; 11) Bereavement support; 12) Education/training; and, 13) Developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted. This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.
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PALLIATIVE MEDICINE | Online – 31 July 2015 – Of 53 countries, 46 provided data. Europe developed significant home care team, inpatient palliative care service, and hospital support team in 2005-2012. The improvement was statistically significant for Western European countries, but not for Central and Eastern countries. Significant development in at least a type of service has been seen in 21 of 46 countries. The estimations of 2012 coverage for inpatient palliative care service, home care team and hospital support team are 62%, 52% and 31% for Western European and 20%, 14% and 3% for Central and Eastern, respectively. Although there has been a positive development in overall palliative care coverage in Europe between 2005 and 2012, the services available in most countries are still insufficient to meet the palliative care needs of the population.
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Media Watch is intended as an advocacy and research tool. The weekly report, published by Barry R. Ashpole, a Canadian communications consultant and educator, monitors the literature and the lay press on issues specific to the quality of end-of-life care. It is international in scope and distribution. Each month, this section of the IAHPC Newsletter will publish an abstract or summary of an article or report of special interest noted in a recent issue of Media Watch (see below).
The current and back issues of the weekly report.
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