Walls, wisdom, worries, and wishes: engaging communities in discussion about death, dying, loss, and care using café conversation

Progress in Palliative Care, 2016, vol./is. 24/1(9-14)

McLoughlin, K., McGilloway, S., Lloyd, R., O'Connor, M., Rhatigan, J., Shanahan, M., Richardson, M., Keevey, A.

This paper reflects on the adaptation of the World Café concept to engage with members of the public in Compassionate Communities Café Conversation.  This paper outlines the preparation, presentation, and pilot evaluation of the Compassionate Communities Café Conversation experience in two towns in the Mid-West of Ireland. The experience and findings suggest that this approach offers a potentially very useful framework for use by others as part of a health promoting approach to palliative care.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

The palliative care needs of people severely affected by neurodegenerative disorders: a qualitative study

Progress in Palliative Care, 2015, vol./is. 23/6(331-342)

Veronese, S., Gallo, G., Valle, A., Cugno, C., Chiò, A., Calvo, A., Rivoiro, C., Oliver, D. J.

The particular needs of people with advanced and progressive neurological disease are not well known. A qualitative approach was used, interviewing people with advanced amyotrophic lateral sclerosis/motor neurone disease (ALS/MND), multiple sclerosis (MS), Parkinson's disease (PD), and multiple systems atrophy (MSA) and their family carers to ascertain their particular needs. Focus groups of health and social care professionals allowed a professional view of the needs. People with progressive disease have many, difficult and distressing symptoms: physical, including pain, movement issues, swallowing and speech problems, psychological, feelings of being abandoned and of anxiety and depression, social, of isolation, of being a burden and of financial issues, and spiritual, of loss of hope and the meaning of life as they approach death.

Available in print in Arthur Rank Hospice Library, Brookfields Hospital

"Sometimes we can't fix things": a qualitative study of health care professionals' perceptions of end of life care for patients with heart failure

BMC Palliative Care, January 2016, vol./is. 15/1(no pagination)

Glogowska M., Simmonds R., McLachlan S., Cramer H., Sanders T., Johnson R., Kadam U.T., Lasserson D.S., Purdy S.

Studies show that patients with advanced heart failure may have a poor understanding of their condition and its outcome and, therefore, miss opportunities to discuss their wishes for EoL care and preferred place of death. We aimed to explore the perceptions and experiences of health care professionals (HCPs) working with patients with heart failure around EoL care. These key professionals can help co-ordinate care and support in the terminal phase of the condition. Links between heart failure teams and specialist palliative care services appear to benefit patients, and further sharing of expertise between teams is recommended.

Fulltext available from National Library of Medicine in BMC Palliative Care

The use of aromasticks to help with sleep problems: A patient experience survey

Complementary therapies in clinical practice, Feb 2016, vol. 22, p. 51-58

Dyer, Jeannie, Cleary, Lise, McNeill, Sara, Ragsdale-Lowe, Maxine, Osland, Caroline

Essential oils may be inhaled by means of an aromastick (a personal inhaler device containing essential oils) as a means of improving sleep. Sixty-five aromasticks were given out over a 13 week period. 94% of patients reported that they did use their aromastick to help them sleep and 92% reported that they would continue to do so. An improvement of at least one point on a Likert scale measuring sleep quality was shown by 64% of patients following the use of an aromastick.

Fulltext available in Complementary Therapies in Clinical Practice

Effect of progressive relaxation exercises on fatigue and sleep quality in patients with chronic obstructive lung disease (COPD)

Complementary therapies in clinical practice, Nov 2015, vol. 21, no. 4, p. 277-281

Akgün Şahin, Zümrüt, Dayapoğlu, Nuray

This research was conducted to investigate the effect of Progressive Muscle Relaxation Technique on fatigue and sleep quality in patients with COPD.  It was determined that PMRT decreased patients' fatigue level and improved their sleep quality.  Progressive relaxation exercises programs represent effective therapeutic intervention approaches for relieving COPD-associated fatigue and sleep quality. 

Fulltext available in Complementary Therapies in Clinical Practice

What does end stage in neuromuscular diseases mean? Key approach-based transitions

Current opinion in supportive and palliative care, Dec 2015, vol. 9, no. 4, p. 361-368

Tripodoro, Vilma Adriana, De Vito, Eduardo Luis

The purpose of this article is to revise the definition of end stage in the setting of neuromuscular disease (NMD), to understand the implications for the patient, family and healthcare team, and to address the obstacles involved in the lack of definition.  Better end-stage NMD definitions should help to identify the goals of care, but a broad range in time and intensity of deterioration make a valid definition difficult. This article emphasizes the relevance of an integrated approach through the whole trajectories of NMD patients considering key transitions.

Unexpected death in palliative care: what to expect when you are not expecting

Current opinion in supportive and palliative care, Dec 2015, vol. 9, no. 4, p. 369-374

Hui, David

When death occurs suddenly and earlier than anticipated, it is considered as an unexpected death. In this article, the author discusses when death is expected and unexpected, and reviews the frequency, impact, causes, and approach to unexpected death in the palliative care setting. Unexpected death has significant impact on care, including unrealized dreams and unfinished business among patients, a sense of uneasiness and complicated bereavement among caregivers, and uncertainty in decision making among healthcare providers.