Palliative & Supportive Care, 2019 17(5) p.542
White, Kelsey B; Murphy, Patricia E; Jeuland, Jane; Fitchett, George
Although limited, research suggests low levels of burnout or distress among healthcare chaplains; however, there has been no research among chaplains working in specific clinical contexts, including palliative care. This study explored the distress, self-care, and debriefing practices of chaplains working in palliative care. It found that these Chaplains appear moderately distressed, possibly more so than chaplains working in other clinical areas. They use debriefing, with non-chaplain palliative colleagues, to process clinical experiences.
A current awareness bulletin produced by the library service at Arthur Rank Hospice
Friday, 25 October 2019
In what ways might group clinical supervision affect the development of resilience in hospice nurses?
International Journal of Palliative Nursing, 2019 25(8) p.387-396
Francis, Amy; Bulman, Chris
There is limited evidence which focuses on the influence of clinical supervision in the development of resilience in hospice nurses. From their research, the authors suggest that it affects the development of resilience by developing confidence at work, regulating emotions, offering a coping strategy, managing expectations, and developing self-awareness, dependent upon individual preference and experience, the local organisational context, and wider social and political factors. Recommendations for practice are offered to enhance the development of resilience through clinical supervision.
The holistic management of fatigue within palliative care
International Journal of Palliative Nursing 2019 25(8) p.368-376
Dean, Antonia
While some international guidelines for the management of fatigue exist, evidence suggests that these are not always implemented. This article reviews the evidence basis for fatigue management and finds that a one-size fits all approach to fatigue management is unrealistic. Research appears to support different interventions at various points in the disease trajectory and this is of importance for service design as palliative care is increasingly introduced earlier in the patient's pathway.
Dean, Antonia
While some international guidelines for the management of fatigue exist, evidence suggests that these are not always implemented. This article reviews the evidence basis for fatigue management and finds that a one-size fits all approach to fatigue management is unrealistic. Research appears to support different interventions at various points in the disease trajectory and this is of importance for service design as palliative care is increasingly introduced earlier in the patient's pathway.
Lymphoedema in end-of-life care.
International Journal of Palliative Nursing, 2019 25(8) p.407-409
Todd, Marie
The author discusses some of the important issues to consider when caring for patients suffering from lymphoedema in the terminal stage of an illness. Topics covered include the complex interaction between symptoms, their causes, and their management, reluctance of many patients to admit that their condition is beyond treatment, and development of a comprehensive needs-based treatment plan.
Todd, Marie
The author discusses some of the important issues to consider when caring for patients suffering from lymphoedema in the terminal stage of an illness. Topics covered include the complex interaction between symptoms, their causes, and their management, reluctance of many patients to admit that their condition is beyond treatment, and development of a comprehensive needs-based treatment plan.
Wednesday, 16 October 2019
Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique
Palliative Medicine, 2019 33(8) p.1058-1068
de Wolf-Linder, Susanne; Dawkins, Marsha; Wicks; et al
When capturing patient-level outcomes in palliative care, it is essential to identify which outcome domains are most important and focus efforts to capture these, in order to improve quality of care and minimise collection burden. The group recommended the domains of 'overall wellbeing/quality of life', 'pain', and 'information needs/preferences' for regular measurement, assessed using 'Phase of Illness'. International adoption of these recommendations will help standardise approaches to improving the quality of palliative care.
Fulltext available in Palliative Medicine
Volunteers in a biography project with palliative care patients – a feasibility study
BMC Palliative Care, 2019 18(79)
Michaela Hesse, Simon Forstmeier, Henning Cuhls & Lukas Radbruch
This study evaluated the feasibility of training hospice volunteers
in biographical interviews of patients confronted with a life-limiting disease.
For the purpose of this study, we evaluated resources such as time needed for
training, coordination and supervision, outcome such as completion of the
intervention in appropriate time and risks such as causing distress in patients
or volunteers as major determinants of feasibility. Volunteers felt that their
involvement was personally rewarding and there were no systematic problems or negative
experiences reported either by volunteers or by patients.
Fulltext available in BMC Palliative Care
Music in palliative care: a qualitative study with patients suffering from cancer
BMC Palliative Care, 2019 18(78)
Sandrine Pommeret, Jan Chrusciel, Catherine Verlaine, et al
This study aimed to examine how cancer patients hospitalized in the palliative care unit experienced a musical intervention. Two artists performed in the palliative care unit once a week from 9:30 am to 5:30 pm. The authors report both positive emotions but also found patients encountered difficulties during the intervention. They conclude that although music appeared to benefit the patients, it sometimes reminded them of their altered state and some experienced difficulties related to physical exhaustion.
Fulltext available in BMC Palliative Care
Plissit interventions and sexual functioning: useful tools for social work in palliative care?
Journal of Social Work in End-of-Life & Palliative Care, September 2019 p.1-18
Bennett, Michael R
The PLISSIT model is a framework to effectively initiate the conversation about sexual concerns. This rapid review and small meta-analysis explores and clarifies knowledge about the effectiveness of PLISSIT in resolving sexual dysfunction and considers its utility as a social work intervention in a palliative care setting.
Evaluating the effects of the pharmacological and nonpharmacological interventions to manage delirium symptoms in palliative care patients: systematic review
Current Opinion in Supportive and Palliative Care, September 2019
Skelton, Luke; Guo, Ping
This review aims to evaluate the effects of the pharmacological and nonpharmacological interventions used to manage delirium symptoms in this patient group. A recent study has suggested there is no role for antipsychotic medication in the management of delirium in palliative care patients, which is a move away from previous expert opinion. In addition, recent findings suggest there may be a role for the use of antipsychotics in combination with benzodiazepines in the management of agitated delirium. The authors conclude that it is too early to abandon the use of antipsychotic medication entirely in the management of delirium, however there remains inadequate evidence to support the routine use of either pharmacological or nonpharmacological interventions.
Prelude to death or practice failure? Trombley-Brennan terminal tissue injury update
American Journal of Hospice & Palliative Medicine, 2019 36(11) p.1016-1019
Brennan, Mary R.; Thomas, Lily; Kline, Myriam
In 2012, a study explored the emergence of unique skin changes in end-of-life patients admitted to a palliative care unit. The purpose was to describe the skin changes and identify the relationship between these changes and time of death. 80 patients were included and the skin changes were found to be unique and different from Kennedy terminal ulcers and deep tissue injuries. Median time from identification of skin changes and death was 36 hours. The phenomenon was named as Trombley-Brennan terminal tissue injury. The current article presents findings that include the study of an additional 86 patients. The results further validate the phenomenon and its relationship with time of death.
Lymphoedema in advanced cancer: does subcutaneous needle drainage improve quality of life?
BMJ Supportive & Palliative Care, August 2019
Landers, Amanda; Holyoake, Julia
Lower limb lymphoedema in the palliative care population has limited treatment options. Subcutaneous needle drainage is an underused procedure that has previously been described in the literature for refractory lymphoedema. This study aimed to quantify the potential improvements to quality of life and the adverse outcomes for this group of patients. The authors conclude that this intervention appears to improve quality of life in those with lower limb lymphoedema facing a life-limiting illness.
Fan therapy for the treatment of dyspnea in adults: a systematic review
Journal of Pain and Symptom Management, 2019 58(3) p.481-486
Qian, Yu; Wu, Yuan; Rozman de Moraes, Aline
Limited direct evidence from randomized controlled trials indicates that fan therapy may effectively alleviate dyspnea. Additional trials are warranted to confirm this finding and explore the use of fan therapy for the treatment of dyspnea in more diverse populations and settings.
Prescribing in chronic severe hepatic impairment
Journal of Pain and Symptom Management, 2019 58(3) p.515-537
Wilcock, Andrew; Charlesworth, Sarah; Prentice, Wendy, et al
A Therapeutic Review aimed at providing essential independent information for health professionals about drugs used in palliative and hospice care.
Digital health technology in palliative care: friend or foe?
Progress in Palliative Care, 2019 27(4) p.145-146
Mills, Jason
In this editorial, Jason Mills considers whether, when it comes to health and promoting quality of life in palliative care settings, there's a meaningful role for technology—and is the use of technology in contexts of life-limiting illness truly congruent with the humanistic tenets of hospice and palliative care?
Fulltext available in Progress in Palliative Care
Submitting to God's will: attitudes and beliefs of Moroccan Muslim women regarding mourning and remembrance
Death Studies, 2019 43(8) p.478-488
Ahaddour, Chaïma; Van den Branden, Stef; Broeckaert, Bert
This study aimed to elicit the attitudes and beliefs of middle-aged and elderly Moroccan Muslim women regarding mourning and remembrance, to identify whether differences are observable between middle-aged and elderly participants, to explore the role of religion and to document how the actual attitudes of the participants relate to normative Islamic literature. Interviews were conducted with middle-aged and elderly Moroccan women living in Belgium (n = 30) and with experts in the field (n = 15). This study reveals that the religious beliefs have a great impact on the views of Muslim women. Striking similarities were found between participants' views and normative Islamic literature.
MASCC recommendations on the management of constipation in patients with advanced cancer
Supportive Care in Cancer: Official Journal of the Multinational Association of Supportive Care in Cancer 2019 August 9
Andrew Davies, Charlotte Leach, Ricardo Caponero, Andrew Dickman, et al
The Palliative Care Study Group of the Multinational Association for Supportive Care in Cancer produced 15 recommendations, with varying levels of evidence and so varying categories of guideline. The recommendations relate to the assessment, the treatment, and the re-assessment of constipation. and provide a framework for the management of constipation in advanced cancer.
Palliative care for people living with heart failure - European Association for Palliative Care Task Force expert position statement.
Cardiovascular Research, August 2019
Sobanski PZ; Alt-Epping B; Currow DC; et al
The authors conclude that the inclusion of Palliative Care within the regular clinical framework for people with heart failure results in a substantial improvement in quality of life as well as comfort and dignity whilst dying.
Fulltext available in Cardiovascular Research
Deep brain stimulation at end of life: clinical and ethical considerations
Journal of Palliative Medicine, 2019 August 12
Lauren R Sankary, Paul J Ford, Andre G Machado, et al
Questions arise at the end of life
concerning how to provide best care for patients with a deep brain stimulation (DBS) device, including its
continued benefit or potential complications, yet no published articles
provide guidance for hospice providers. With contributions from hospice physicians, a
neurosurgeon, and ethicists, this article provides recommendations to address
clinical and ethical challenges in optimizing DBS for patients with Parkinson's Disease nearing
the end of life.
Quality improvement in hospice settings: perceptions of leaders
International Journal of Health Care Quality Assurance, 2019 32(7) p.1098-1112
Jitendra Singh, Brandi Sillerud, Marah Omar
The purpose of this paper is to explore and examine attitudes and perceptions of leaders on application of quality improvement (QI) strategies in a palliative and hospice care organization using qualitative research methodology. Data analysis suggests that use of QI approach in palliative and hospice care enhances the quality of care provided for patients and can help improve patient satisfaction. This research can provide useful practical tips to leaders as they work on implementing QI projects in their organization.
Challenges and support needs of parents and children when a parent is at end of life: A systematic review
Palliative Medicine, 2019 33(8) p.1017-1044
Jeffrey R Hanna, Eilís McCaughan, Cherith J Semple
This review synthesised evidence on the experiences of parents and children when a parent is at the end of life to discern their challenges, support needs and the factors that facilitated good practice. Lack of understanding in relation to the parent's prognosis, denial and feeling ill-equipped were suggested as barriers for parents to share the news with their children. Engagement with social networks, including extended family relatives and peers, and maintaining routines such as attending school were suggested supportive by parents and children.
Meaning of work and personal protective factors among palliative care professionals
Palliative & Supportive Care 2019, 17 (4): 381-387
Beatriz Moreno-Milan, Antonio Cano-Vindel, Pedro Lopez-Dóriga, et al
The objective was to develop and evaluate a model that examines the mediating role of the meaning of work in a multidisciplinary group of palliative care professionals. Using this model, the authors sought to assess the relationships between meaning of work, perceived stress, personal protective factors (optimism, self-esteem, life satisfaction, personal growth, subjective vitality), and sociodemographic variables. They suggest their findings could have highly relevant practical implications for designing programs to promote the psychological well-being of healthcare professionals.
Hydration and symptoms in the last days of life
BMJ Supportive and Palliative Care, 2019 August 31 (online first)
Martine E Lokker, Agnes van der Heide, Wendy H Oldenmenger, et al
Consensus about the most appropriate management for terminally ill patients with limited oral fluid intake is lacking. The objective of this study which included 371 patients, is to investigate to what extent the amount of fluid intake, preceding and during the dying phase, is related to the occurrence of death rattle and terminal restlessness. The authors suggest that caution with fluid intake to prevent development of death rattle does not seem to be necessary. They further conclude that a higher amount of fluid intake during 48–25 hours before death may be associated with the occurrence of terminal restlessness during the last 24 hours of life. These results suggest that actively providing dying patients with artificial fluid may not be beneficial.
Top ten tips palliative care clinicians should know about telepalliative care
Journal of Palliative Medicine 2019 22(8) p.981-985
Calton, Brook Anne; Rabow, Michael W.; Branagan, Linda, et al
The latest in the 'Top Ten' series, this article looks at the application of telehealth technologies to palliative care and how they may help address important challenges inherent to the specialty, such as geography and clinician staffing. Telepalliative care can take many forms, including, but not limited to, video visits between clinicians and patients, smartphone applications to promote caregiver well-being, and remote patient symptom-monitoring programs. Experts in telehealth and palliative care, provide a review of the current evidence for telepalliative care and potential applications and practical tips for using the technology.
Spiritual care at the end of life: does educational intervention focused on a broad definition of spirituality increase utilization of chaplain spiritual support in hospice?
Journal of Palliative Medicine, 2019 22(8) p.939-944
Soroka, Jacek T.; Collins, Lori A., et al
Despite the benefits of spiritual care, evidence shows that many patients and caregivers (P/C) refuse it when a hospice team offers it, possibly resulting in unnecessary suffering. The aim of this study was to better understand what contributes to spiritual support acceptance in hospice care. This research suggests that educational intervention that explains spiritual care in hospice and its benefits contributes importantly to greater acceptance and allows P/C to gain the benefits of spiritual support during end-of-life care.
Tuesday, 15 October 2019
Twelve-step programs and spiritual support at the end of life
American Journal of Hospice & Palliative Medicine, 2019 36(9) p.807-811
Groninger, Hunter; Knapik, Michael
In current literature, substance use disorder has mostly been examined in relation to appropriate symptom assessment and management, opioid risk screening, and controlled substance prescribing practices. However, for care to be holistic, awareness and facilitation of healthy psychosocial–spiritual coping strategies for recovering addicts should be included. One of the more common support mechanisms to support recovery is the 12-step program, based on Alcoholics Anonymous, which have been shown to provide effective coping strategies, not only to help facilitate ongoing abstinence but also to support other psychosocial–spiritual crises.
Reflection for all healthcare staff: a national evaluation of Schwartz Rounds
Journal of Interprofessional Care, 2019 Aug 7:1-3
Flanagan E, Chadwick R, Goodrich J, Ford C, Wickens R
Flanagan E, Chadwick R, Goodrich J, Ford C, Wickens R
Schwartz Rounds provide an opportunity for all
staff in a healthcare organisation to meet regularly and reflect on the human
connections made with patients and the emotional impact of their work. In the first
evaluation of a national sample in the UK, the authors review feedback received from a
large sample of 402 Schwartz Rounds in a total of 47 organisations, including
acute and non-acute NHS trusts and hospices. The overall experience of
Schwartz Rounds was very positive across all settings, indicating that all staff value an opportunity to reflect on
the emotional impact of their work.
Wednesday, 14 August 2019
Exploring palliative care nursing of patients with pre-existing serious persistent mental illness
Progress in Palliative Care, 2019 27(3) p.117-121
Brown, Russell; Chambers, Shirley; Rosenberg, John
This paper explores the key concepts of palliative care for people with serious and persistent mental illness (SPMI), the challenges present in nursing practice, and the making of end-of-life decisions, in order to consider how comprehensive, person-centred care might be given. Although some improvements have been reported over the past 14 years, this population appears to remain underserved in palliative care. The need for more specialized education for nurses in both palliative care and mental health care, and better communication and collaboration between the two specialties is needed to ensure that these patients receive the same standard of care experienced by the general population.
Meeting the needs of people who identify as lesbian, gay, bisexual, transgender, and queer in palliative care settings
Journal of Hospice & Palliative Nursing, 2019 21(4) p.286-290
Higgins, Agnes; Hynes, Geralyn
The end-of-life needs of people who identify as lesbian, gay, bisexual, transgender, and queer (LGBTQ) are in many ways identical to those of non-LGBTQ people; however, for a variety of reasons, they are at risk of receiving suboptimal care, irrespective of whether they are being cared for at home or in a nursing home, hospital, or hospice. Although research on the needs of LGBTQ people at the end of life is sparse, drawing on what is available this article explores some of their unique concerns that practitioners should consider during their interactions.
Kennedy terminal ulcers: a scoping review
Journal of Hospice & Palliative Nursing, 2019 21(4) p.257-263
Latimer, Sharon; Shaw, Joanie; Hunt, Tracey; Mackrell, Kristyn; Gillespie, Brigid M.
Kennedy terminal ulcers, a subset of pressure injuries, are associated with the dying process. This scoping review aimed to identify and map the published literature on Kennedy terminal ulcers in terms of its definition, prevalence, assessment, treatment, management, health care costs, and quality of life for patients in all health care settings. It revealed significant knowledge and clinical practice gaps in patient assessment, management, and treatment of Kennedy terminal ulcers. Timely patient education may help them to make informed care and quality end-of-life decisions.
The use of digital legacies with people affected by motor neurone disease for continuing bonds: an interpretative phenomenological analysis study
Palliative Medicine, 2019 33(7) p.812-822
Clabburn, Oliver; Knighting, Katherine; Jack, Barbara A; O'Brien, Mary R
The aims of this study were to investigate the views, perceptions and experiences of digital legacies with people affected by motor neurone disease. Creating a digital legacy provided a sense of purpose for people with motor neurone disease and a way to convey personality and life experiences. Bereaved young people can modify disease-related memories of the person and gain comfort from hearing and seeing videos.
Fulltext available in Palliative Medicine
'It all depends!': a qualitative study of preferences for place of care and place of death in terminally ill patients and their family caregivers
Palliative Medicine, 2019 33(7) p.802-811
Gerber, Katrin; Hayes, Barbara; Bryant, Christina
It is often suggested that terminally ill patients favour end-of-life care at home. Yet, it is unclear how these preferences are formed, if the process is similar for patients and family caregivers, and if there are discrepancies between preferences for place of care and place of death. Understanding these nuances is essential to support people in their decision-making and ultimately provide better care at the end-of-life. The authors conclude that in many cases end-of-life decision-making does not conclude with a clear and stable choice. Understanding the reasons for the malleability of preferences and the process of how they are formed has implications for both clinicians and researchers.
Pressure ulcers in patients receiving palliative care: a systematic review
Palliative Medicine, 2019 33(7) p.770-782
Ferris, Amy; Price, Annie; Harding, Keith
This systematic review aims to quantify the prevalence and incidence of pressure ulcers in patients receiving palliative care and identify the risk factors for pressure ulcer development in these patients as well as the temporal relationship between pressure ulcer development and death. Overall pressure ulcer prevalence and incidence were found to be 12.4% and 11.7%, respectively, which is higher than in the general population. Skin failure, as with other organ failures, may be an inevitable part of the dying process for some patients.
Tuesday, 13 August 2019
Palliative care for people with dementia living at home: A systematic review of interventions
Palliative Medicine, 2019 33(7) p.726-742
Miranda, Rose; Bunn, Frances; Lynch, Jennifer; Van den Block, Lieve; Goodman, Claire
The aim of this review was to examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps. The evidence, albeit of generally weak quality, showed the potential benefits of the interventions in improving end-of-life care outcomes, for example, behavioural disturbances. The interventions most commonly focused on optimal symptom management, continuity of care and psychosocial support.
Fulltext available in Palliative Medicine
S.T.R.I.D.E. professional guide to compression garment selection for the lower extremities
Journal of Wound Care, 2019 28(Sup6a) p.1-44
Bjork, R; Ehmann, S.
The authors' intention is to propose a decision support system for choosing specific compression devices, which can be adjusted to counteract the individual signs and symptoms in an optimally adopted way. The document concentrates on compression devices which can be self-applied by the patients: compression stockings and adjustable wraps. The acronym 'S.T.R.I.D.E.', incorporating both textile characteristics and clinical presentation, stands for: Shape, Texture, Refill, Issues, Dosage and Etiology.
Fulltext available at the Journal of Wound Care website
Psychosocial interventions for pain management in older adults with dementia: a systematic review of randomized controlled trials
Journal of Advanced Nursing, 2019 75(8) p.1608-1620
Pu L; Moyle W; Jones C; Todorovic M.
The findings of this review suggest that psychosocial interventions may be potentially effective alternatives for pain management in people with dementia, perhaps leading to a reduction in pain medication. However, the authors warn that caution is needed in interpreting these results due to limited studies, risk of bias and heterogeneity across studies.
How can activity monitors be used in palliative care patients?
Journal of Palliative Medicine, 2019 22(7) p.830-832
To, Timothy H.M; Currow, David C; Swetenham, et al
Objective measurement of physical activity in palliative care patients is challenging. In this article, the authors highlight their experiences of activity monitoring in palliative care patients as part of a telehealth trial. They highlight the strengths and limitations of activity monitoring in this patient group and potential applications. They conclude that although the advent of consumer technology for activity measurement makes their use seem attractive in palliative clinical settings, there are a number of issues that must be considered, in particular the reason for the activity monitoring and associated limitations in the technology.
Friday, 2 August 2019
Treatment for lymphedema following head and neck cancer therapy: A systematic review.
American Journal of Otolaryngology, 2019 May 30.
Tyker A, Franco J, Massa ST, Desai SC, Walen SG
The aim was to perform the first systematic review evaluating all established treatment modalities of head and neck lymphedema resulting from head and neck cancer therapy. Evidence for the efficacy of all types of lymphedema therapy is limited by paucity of large randomized controlled trials. While manual lymph drainage is best studied, liposuction and surgical treatments have also been effective in a small number of patients.
Tyker A, Franco J, Massa ST, Desai SC, Walen SG
The aim was to perform the first systematic review evaluating all established treatment modalities of head and neck lymphedema resulting from head and neck cancer therapy. Evidence for the efficacy of all types of lymphedema therapy is limited by paucity of large randomized controlled trials. While manual lymph drainage is best studied, liposuction and surgical treatments have also been effective in a small number of patients.
Benzodiazepines and/or neuroleptics for the treatment of delirium in palliative care: a critical appraisal of recent randomized controlled trials.
Annals of Palliative Medicine, 2019 Mar 26.
Gaertner J1, Eychmueller S2, Leyhe T3, Bueche D4, Savaskan E5, Schlögl M
Gaertner J1, Eychmueller S2, Leyhe T3, Bueche D4, Savaskan E5, Schlögl M
Despite the
lack of randomized-controlled-trials (RCTs) benzodiazepines and neuroleptic
agents are used extensively in palliative care for the pharmacological
management of delirium. This is a narrative summary of the findings of two RCTs and practical
recommendations are presented. The recently published
landmark RCTs provide moderate evidence to adopt recommendations from other
medical specialties (i.e., intensive care, geriatrics) to the field of palliative
care.
Fulltext available in Annals of Palliative Medicine
Fulltext available in Annals of Palliative Medicine
Palliative care for persons with Parkinson’s disease: a qualitative study on the experiences of health care professionals
BMC Palliative Care 2019 18:53
Herma Lennaerts, Maxime Steppe, Marten Munneke, et al
The aim of this study was to examine health care professionals’ experiences of potential barriers and facilitators in providing palliative care for people with Parkinson's Disease in the Netherlands. In daily practice, they struggled to identify persons’ needs due to PD-specific symptoms such as cognitive decline and communication deficits. Timely advance care planning to explore the personal preferences for palliative care was identified as an important facilitator. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity and a need to improve the knowledge of complex PD.
Fulltext availalbe in BMC Palliative Care
Herma Lennaerts, Maxime Steppe, Marten Munneke, et al
The aim of this study was to examine health care professionals’ experiences of potential barriers and facilitators in providing palliative care for people with Parkinson's Disease in the Netherlands. In daily practice, they struggled to identify persons’ needs due to PD-specific symptoms such as cognitive decline and communication deficits. Timely advance care planning to explore the personal preferences for palliative care was identified as an important facilitator. Findings indicate a perceived lack of care continuity, fragmentation of services, time pressure and information discontinuity and a need to improve the knowledge of complex PD.
Fulltext availalbe in BMC Palliative Care
Palliative care for people with substance use disorder and multiple problems: a qualitative study on experiences of patients and proxies
BMC Palliative Care 2019 18:56
Anne EbenauBoukje Dijkstra,Chantal ter Huurne,Jeroen Hasselaar,Kris Vissers and Marieke Groot
This study aims to explore the issues and needs of patients with SUD and multiple problems, and their proxies, in the palliative care phase. It shows that talking about and anticipating palliative care with this patient-group appears hard due to patients’ closed and avoiding communication. Furthermore, some of the patients’ EOL preferences and needs, and coping strategies, seem to differ from the more generally-accepted ideas and practices. The authors offer suggestions for the improvement in communication with this patient-group, the identification of the palliative care phase and person-centred care.
Fulltext available at BMC Palliative Care
Preferences for place of care and place of death: What, how, when and who to ask
Progress in Palliative Care, 2019 27(2) p.64-68
Gerber, Katrin; Hayes, Barbara; Bryant, Christina
The strategies that researchers and clinicians use to capture the end-of-life views of patients vary greatly in four key questions. These include: what, how, when and who to ask about location preferences. The authors argue that how researchers and clinicians choose to answer these questions directly influences their findings. Ways to improve future palliative care and empirical end-of-life studies by addressing the precision, methods, timing and sources of preference assessments are highlighted.
Effectiveness of a short-term psychotherapeutic group for doctors and nurses in a hospice in Southern Europe
Progress in Palliative Care; Apr 2019; vol. 27
(no. 2); p. 58-63
Floriana, Caccamo; Luca, Caldironi; Simona, Ghedin
This pilot study aimed to evaluate the effectiveness of a short-term psychotherapeutic group implemented for doctors and nurses of a Hospice in southern Europe. Burnout and alexithymia were measured at the beginning and at the end of a psychotherapeutic group conducted with the Photolangage method which encourages sharing of emotional experiences by the medium of a photo. Significant differences between pre- and post-evaluation were observed in the scores for alexithyimia (measured with TAS-20) and burnout (measured with MBI). This is suggestive of the effectiveness of this group intervention in reducing risk of burnout and increasing awareness of emotions experienced during daily work at the hospice.
Floriana, Caccamo; Luca, Caldironi; Simona, Ghedin
This pilot study aimed to evaluate the effectiveness of a short-term psychotherapeutic group implemented for doctors and nurses of a Hospice in southern Europe. Burnout and alexithymia were measured at the beginning and at the end of a psychotherapeutic group conducted with the Photolangage method which encourages sharing of emotional experiences by the medium of a photo. Significant differences between pre- and post-evaluation were observed in the scores for alexithyimia (measured with TAS-20) and burnout (measured with MBI). This is suggestive of the effectiveness of this group intervention in reducing risk of burnout and increasing awareness of emotions experienced during daily work at the hospice.
Management of venous thromboembolism in far-advanced cancer: current practice
BMJ Supportive & Palliative Care
2019 June 25
Simon Noble, Sophie Banerjee, Nikki
Jane Pease
Guidelines suggest that indefinite anticoagulation be considered for patients with ongoing active cancer. This paper reviewed current practice and
associated symptoms at the end of life for patients with advanced cancer who
had been anticoagulated for VTE.
The majority of cancer associated thrombosis patients with
metastatic disease remain anticoagulated up to or within days of death. Despite
the limitations of retrospective data across healthcare settings, the authors suggest that anticoagulation as death approaches confers a significant bleeding risk
without additional benefit of preventing VTE symptoms.
Group singing in bereavement: effects on mental health, self-efficacy, self-esteem and well-being
BMJ Supportive & Palliative Care, June 2019
Fancourt, Daisy; Finn, Saoirse; Warran, Katey; Wiseman, Theresa
This study used a non-randomised controlled design to explore the effects of group choir singing on mental health among people who have been bereaved due to cancer. Participants who sang in a choir had more stable symptoms of depression and levels of well-being, as well as gradual improvements in their sense of self-efficacy and self-esteem over the 24 weeks. In contrast, those in the control group showed gradual increases in depressive symptoms, reductions in levels of well-being and self-esteem and no improvement in their self-efficacy. These results were independent of all covariates. The authors conclude that weekly group singing could be a promising mutual support intervention for people experiencing grief.
Fulltext available in BMJ Supportive and Palliative Care
Fancourt, Daisy; Finn, Saoirse; Warran, Katey; Wiseman, Theresa
This study used a non-randomised controlled design to explore the effects of group choir singing on mental health among people who have been bereaved due to cancer. Participants who sang in a choir had more stable symptoms of depression and levels of well-being, as well as gradual improvements in their sense of self-efficacy and self-esteem over the 24 weeks. In contrast, those in the control group showed gradual increases in depressive symptoms, reductions in levels of well-being and self-esteem and no improvement in their self-efficacy. These results were independent of all covariates. The authors conclude that weekly group singing could be a promising mutual support intervention for people experiencing grief.
Fulltext available in BMJ Supportive and Palliative Care
Palliative care for people with dementia living at home: a systematic review of interventions
Palliative Medicine, 2019 33(7) p.726-42
Rose Miranda, Frances Bunn, Jennifer Lynch, et al
The aim of this review was to examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.
Rose Miranda, Frances Bunn, Jennifer Lynch, et al
The aim of this review was to examine evidence on home palliative care interventions in dementia, in terms of their effectiveness on end-of-life care outcomes, factors influencing implementation, the extent to which they address the European Association for Palliative Care palliative care domains and evidence gaps.
None of the evidence found was of high quality. However, it showed the potential benefits of the interventions in improving end-of-life
care outcomes, for example, behavioural disturbances. The interventions most
commonly focused on optimal symptom management, continuity of care and
psychosocial support. No direct evidence on facilitators and barriers to
implementation was found.
Friday, 21 June 2019
The ethics of prioritizing access to palliative care: a qualitative study
American Journal of Hospice & Palliative Medicine, 2019 36(7) p.577-582
Philip, Jennifer; Russell, Bethany; Collins, Anna; Brand, Caroline; Le, Brian; Hudson, Peter; Sundararajan, Vijaya
Semi-structured
focus groups and individual interviews were conducted with twenty
health professionals working across various disciplines, service types and locations in Victoria, Australia. This study revealed key ethical
decision-making issues associated with prioritizing access to palliative care
services. The authors argue that making explicit the processes and influences upon decision-making
provides greater transparency that limited resources are allocated in an equitable and reproducible way.
The trajectory of functional decline over the last 4 months of life in a palliative care population: a prospective, consecutive cohort study
Palliative Medicine, 2019 33(6) p.693-703
Morgan, Deidre D; Tieman, Jennifer J; Allingham, Samuel F; Ekström, Magnus P; Connolly, Alanna; Currow, David C
Understanding current patterns of functional decline will inform patient care and has health service and resource implications. Data were collected from 55,954 patients cared for in hospices, hospitals and at home. Changes in functional status were measured using the Australia-modified Karnofsky Performance Status Scale. Two simplified trajectories of functional decline in the last 4 months of life were identified for five patient cohorts. Both trajectories present opportunities to plan for responsive healthcare that will support patients and families.
Fulltext available in Palliative Medicine
Socioeconomic factors affecting access to preferred place of death: a qualitative evidence synthesis
Palliative Medicine, 2019 33(6) p.607-617
Turner, Victoria; Flemming, Kate
Existing quantitative evidence suggests that at a population level, socioeconomic factors affect access to preferred place of death. However, the influence of individual and contextual socioeconomic factors on preferred place of death in the UK are less well understood. The authors conclude that the main factor affecting access to preferred place of death was social support; people with fewer informal carers were less likely to die in their preferred location. Other key findings included fluidity around the concept of home and variability in preferred place of death itself. They suggest there needs to be more widespread discussion and documentation of preferred place of death while also recognising these preferences may change as death nears or in times of crisis.
Teaching health-care providers to query patients with cancer about sexual and gender minority (sgm) status and sexual health
American Journal of Hospice & Palliative Medicine, 2019 36(6) p.533-537
Cathcart-Rake, Elizabeth J.; Breitkopf, Carmen Radecki; Kaur, Judith; et al
End of life is difficult for all patients but sexual and gender minorities (SGM) are prone to isolation and loneliness, especially if their SGM status is unknown or unaccepted. This article summarizes the mandate for understanding cancer issues in SGM populations and the dearth of cancer-related data within this group. It also describes an ongoing 3-part study intended to build a mini curriculum with the goal of helping cancer health-care providers to ask patients with cancer about SGM status and to ask all patients with cancer about sexual health issues. The results of this ongoing study could potentially improve end-of-life care for subgroups of patients.
Volunteer involvement in advance care planning: a scoping review
Journal
of Pain and Symptom Management, 2019 57(6) p.1166
Sellars, Marcus; Simpson, Jamie; Kelly, Helana; et al
Volunteer involvement in ACP has not been clearly described in the literature. This study aimed to map research on volunteer involvement in ACP, identify outcomes associated with ACP volunteer models, and determine gaps in existing knowledge. The results obtained will help to inform strategies that will maximize volunteer effectiveness and performance monitoring in ACP delivery. A positive finding from the review was that most of the volunteer-led ACP facilitation programs reported improvements in the frequency of completion of ACP conversations or advance care directives, compared with having no ACP initiative in place. In addition, volunteers in both facilitation and education roles became more comfortable discussing ACP as they became more experienced in their role.
Fulltext available in Journal of Pain and Symptom Management
Sellars, Marcus; Simpson, Jamie; Kelly, Helana; et al
Volunteer involvement in ACP has not been clearly described in the literature. This study aimed to map research on volunteer involvement in ACP, identify outcomes associated with ACP volunteer models, and determine gaps in existing knowledge. The results obtained will help to inform strategies that will maximize volunteer effectiveness and performance monitoring in ACP delivery. A positive finding from the review was that most of the volunteer-led ACP facilitation programs reported improvements in the frequency of completion of ACP conversations or advance care directives, compared with having no ACP initiative in place. In addition, volunteers in both facilitation and education roles became more comfortable discussing ACP as they became more experienced in their role.
Fulltext available in Journal of Pain and Symptom Management
A palliative care model and conceptual approach suited to clinical malignant haematology
Palliative
Medicine, 2019 33(5) p.483-485
Button, Elise; Bolton, Michael; Chan, Raymond J; et al
In this opinion piece the authors discuss a palliative care model and conceptual approach that are well suited to clinical malignant haematology and can lead to best practice palliative and end-of-life care for this unique population. Palliative care is still integrated from diagnosis and tailored around the individual’s needs, but, in this model, can lead to death and bereavement care or cure and survivorship care. This model demonstrates the evolution of the palliative care model from terminal care to individualised care that is responsive to patients’ needs and unpredictable illness trajectories.
Fulltext available in Palliative Medicine
Button, Elise; Bolton, Michael; Chan, Raymond J; et al
In this opinion piece the authors discuss a palliative care model and conceptual approach that are well suited to clinical malignant haematology and can lead to best practice palliative and end-of-life care for this unique population. Palliative care is still integrated from diagnosis and tailored around the individual’s needs, but, in this model, can lead to death and bereavement care or cure and survivorship care. This model demonstrates the evolution of the palliative care model from terminal care to individualised care that is responsive to patients’ needs and unpredictable illness trajectories.
Fulltext available in Palliative Medicine
Wednesday, 19 June 2019
Advance care planning in progressive neurological diseases: lessons from ALS
BMC Palliative Care 2019 18:50
Antje A. Seeber, A. Jeannette Pols, Albert Hijdra, Hepke F. Grupstra, Dick L. Willems and Marianne de Visser
Antje A. Seeber, A. Jeannette Pols, Albert Hijdra, Hepke F. Grupstra, Dick L. Willems and Marianne de Visser
The authors used the knowledge gained from observing ACP in a tertiary ALS centre in Amsterdam to formulate
recommendations for integration of ACP in the care of patients with other
chronic progressive neurological diseases. They suggest that it is feasible to
integrate ACP into follow-up of patients with ALS and PMA from diagnosis
onwards. Supported by recent literature, they argue that such a well-structured
approach would enhance the quality of care and life of patients with other
chronic progressive neurological diseases.
Fulltext available in BMC Palliative Care
Imminent death: clinician certainty and accuracy of prognostic predictions
BMJ Supportive & Palliative Care, 2019, May 10
Nicola White, Fiona Reid, Victoria Vickerstaff,
Priscilla Harries, Christopher Tomlinson, Patrick Stone
The results of this study show that even when doctors are very
(>90%) confident that a patient will die within the
next 72 hours, these estimates are only correct on 75%
of occasions. It is therefore important for
clinicians to convey this level of uncertainty in their
communications with patients and relatives. This suggests that while
clinical predictions will continue to have a role for
routine prognostication, other approaches (such as the
use of prognostic scores) may be required for those
cases where doctors’ estimates are indeterminate.
Fulltext available in BMJ Supportive and Palliative Care
Opioid use in palliative care: new developments and guidelines
Prescriber, 2019 30(4) p.25-31
Lucy Bemand-Qureshi; Faye Gishen; Adrian Tookman
This article looks at the analgesic options
available and reviews recent evidence and guidelines.
Full text available in Prescriber
Breakthrough cancer pain in patients with abdominal visceral cancer pain
Journal of Pain and Symptom Management, 2019 57(5) p.966-970
Mercadante, Sebastiano; Adile, Claudio; Masedu, Francesco; Valenti, Marco; Aielli, Federica
The study aim was to assess the characteristics of breakthrough cancer pain (BTcP) in patients with abdominal cancer pain, and the eventual factors associated with its presentation. Four hundred and fourteen patients were included. The researchers found that in nearly a third of patients, the breakthrough pain was predictable and that ingestion of food was the most frequent trigger.
Mercadante, Sebastiano; Adile, Claudio; Masedu, Francesco; Valenti, Marco; Aielli, Federica
The study aim was to assess the characteristics of breakthrough cancer pain (BTcP) in patients with abdominal cancer pain, and the eventual factors associated with its presentation. Four hundred and fourteen patients were included. The researchers found that in nearly a third of patients, the breakthrough pain was predictable and that ingestion of food was the most frequent trigger.
Young people and their understanding of loss and bereavement
Bereavement Care, 2019 38(1) p.6-12
Scott, Ros; Wallace, Rebecca; Audsley, Annie; Chary, Srini
The aim of this study was to explore how pupils aged between 12 and 18 understand major loss, death and dying, whom they talk to and the support they access at these times, and their awareness of the range of support available to them. It was found that pupils who had experience of major loss or bereavement showed significant awareness of their feelings. It appears that young people primarily seek support from family, friends and the school.
Scott, Ros; Wallace, Rebecca; Audsley, Annie; Chary, Srini
The aim of this study was to explore how pupils aged between 12 and 18 understand major loss, death and dying, whom they talk to and the support they access at these times, and their awareness of the range of support available to them. It was found that pupils who had experience of major loss or bereavement showed significant awareness of their feelings. It appears that young people primarily seek support from family, friends and the school.
Wednesday, 1 May 2019
Risk reduction and management of delirium
Scottish Intercollegiate Guidelines Network, March 2019
This guideline provides recommendations based on current evidence for best practice in the detection, assessment, treatment and follow up of adults with delirium, as well as reducing the risk of delirium. The guideline applies to all settings: home, long-term care, hospital, and hospice.
Fulltext available at the SIGN website
Acupuncture therapy improves health-related quality of life in patients with chronic obstructive pulmonary disease: a systematic review and meta-analysis
Complementary Therapies in Clinical Practice, 2019 35 (May) p. 208-218
Po-Chun Hsieh; Mei-ChenYang; Yao-Kuang Wu; et al
Po-Chun Hsieh; Mei-ChenYang; Yao-Kuang Wu; et al
The conclusions of this review are that body acupuncture therapy is an effective adjunctive non-pharmacological treatment to improve HRQL in patients under medical treatment for COPD. The authors suggest that BAT should be considered as one of the methods of management in patients with COPD.
Systematic bias in cancer patient-reported outcomes: symptom 'orphans' and 'champions'.
BMJ Supportive & Palliative Care, 2019 9(1) p. 67-74
Thomas, Shirley; Walsh, Declan; Aktas, Aynur
Thomas, Shirley; Walsh, Declan; Aktas, Aynur
In this context, 'orphans' were defined as any symptom not assessed in any of the six selected instruments referenced; 'champions', in contrast, were present in all six. Of 46 checklist cancer symptoms, over a third were orphans. Only 5 checklist symptoms were champions: fatigue, pain, anorexia, dyspnoea and nausea. The bias appears to disproportionately affect gastrointestinal and neuropsychiatric symptoms. It's suggested that symptom studies should specifically report the limitations and account for the inherent item bias of any instrument used.
Fulltext available in Arthur Rank Hospice Library, Cambridge
Fulltext available in Arthur Rank Hospice Library, Cambridge
Tuesday, 30 April 2019
Top ten tips palliative care clinicians should know about medical cannabis
Journal of Palliative Medicine, 2019 22(3) p. 319-325
Briscoe, Joshua; Kamal, Arif H.; Casarett, David J.
Briscoe, Joshua; Kamal, Arif H.; Casarett, David J.
The use of medical cannabis is increasing significantly in spite of limited and sometimes contradictory data about its effectiveness. This article seeks to dispel myths about medical cannabis and provides a balanced view of the benefits and burdens of this therapeutic option, providing evidence where it exists and offering practicing clinicians guidance on conditions in which medical cannabis is likely to be helpful or burdensome.
"Remembrance": a self-care tool for clinicians
Journal of Palliative Medicine, 2019 22(3) p. 316-319
Morris, Sue E.; Kearns, John P.; Moment, Amanda; et al
Morris, Sue E.; Kearns, John P.; Moment, Amanda; et al
In this article, the authors describes the development of "Remembrance," an interdisciplinary approach to acknowledge and process the deaths of patients on an inpatient palliative care service, paying particular attention to how patients and their families affect them as clinicians. They suggest that such a practice is an important component of both quality end-of-life care and clinician self-cares. A template summarizes the approach, which can be easily adapted for use by others.
Quality indicators for Palliative Day Services: a modified Delphi study.
Palliative Medicine 2019 33(2) p. 197-205
McCorry, Noleen K.; O'Connor, Sean; Leemans, Kathleen, et al
McCorry, Noleen K.; O'Connor, Sean; Leemans, Kathleen, et al
The aim of this study was to develop and provide the first set of quality indicators that describe and evaluate the quality of Palliative Day Services. The resulting indicators were compiled into a 'toolkit' and tested in five UK Palliative Day Service settings. The result was the identification of 30 indicators which were used in practice testing. The final indicator set comprised 7 structural indicators, 21 process indicators and 2 outcome indicators. The authors suggest that these indicators deliver an appropriate and feasible means to assess, review, and communicate the quality of care, and to identify areas for quality improvement.
Anticipatory prescribing of injectable medications for adults at the end of life in the community: a systematic literature review and narrative synthesis
Palliative Medicine 2019 33(2) p. 160-177
Bowers, Ben; Ryan, Richella; Kuhn, Isla; Barclay, Stephen
The anticipatory prescribing of injectable medications to provide end-of-life symptom relief is an established community practice in a number of countries. However, current anticipatory prescribing practice and policy is based on an inadequate evidence base. The authors conclude that the views and experiences of patients and their family carers towards anticipatory prescribing need urgent investigation and that further research is needed to investigate the impact of anticipatory prescribing on patients' symptoms and comfort, patient safety, and hospital admissions.
Bowers, Ben; Ryan, Richella; Kuhn, Isla; Barclay, Stephen
The anticipatory prescribing of injectable medications to provide end-of-life symptom relief is an established community practice in a number of countries. However, current anticipatory prescribing practice and policy is based on an inadequate evidence base. The authors conclude that the views and experiences of patients and their family carers towards anticipatory prescribing need urgent investigation and that further research is needed to investigate the impact of anticipatory prescribing on patients' symptoms and comfort, patient safety, and hospital admissions.
Brief psychosocial interventions improve quality of life of patients receiving palliative care: a systematic review and meta-analysis
Palliative Medicine, 2019 33(3) p. 332-345
Warth, Marco; Kessler, Jens; Koehler, Friederike, et al
The authors reported the effects of 17 interventions involving 1248 patients. They conclude that brief psychosocial interventions can improve clinically relevant health outcomes, including improvement in quality of life and a reduction in emotional and existential distress compared to the control groups.
Warth, Marco; Kessler, Jens; Koehler, Friederike, et al
The authors reported the effects of 17 interventions involving 1248 patients. They conclude that brief psychosocial interventions can improve clinically relevant health outcomes, including improvement in quality of life and a reduction in emotional and existential distress compared to the control groups.
Palliative care physicians' perspectives on transferring patients to nursing homes and communication strategies to facilitate this transition: a qualitative study
Palliative Medicine, 2019 33(3) p.323-331
Stiel, Hilary; Nagarajan, Srivalli V.; Forster, Benjamin C.; Clayton, Josephine M.
This study highlights the tension Australian palliative care physicians experience when transferring palliative care patients to nursing home and the complexity involved in decision-making. Physicians identified several communication strategies to engage patients and families to ease the transition.
Stiel, Hilary; Nagarajan, Srivalli V.; Forster, Benjamin C.; Clayton, Josephine M.
This study highlights the tension Australian palliative care physicians experience when transferring palliative care patients to nursing home and the complexity involved in decision-making. Physicians identified several communication strategies to engage patients and families to ease the transition.
TIME CDST: an updated tool to address the current challenges in wound care
Journal of Wound Care, 2019 28(3) p.154-161
Moore, Zena; Dowsett, Caroline; Smith, Glenn, et al
The TIME principle was first published in 2003. However, this tool has been criticised for its tendency to focus mainly on the wound rather than on the wider issues that the patient is presenting with. At an expert meeting held in London in 2018, this conundrum was addressed and the TIME clinical decision support tool (CDST) was elaborated upon. This article introduces the TIME CDST, explains why it is required and describes how its use is likely to benefit patients, clinicians and health-service organisations.
Moore, Zena; Dowsett, Caroline; Smith, Glenn, et al
The TIME principle was first published in 2003. However, this tool has been criticised for its tendency to focus mainly on the wound rather than on the wider issues that the patient is presenting with. At an expert meeting held in London in 2018, this conundrum was addressed and the TIME clinical decision support tool (CDST) was elaborated upon. This article introduces the TIME CDST, explains why it is required and describes how its use is likely to benefit patients, clinicians and health-service organisations.
Acupuncture for cancer pain and symptom management in a palliative medicine clinic
American Journal of Hospice & Palliative
Medicine, 2019 36(4) p.326-332
Miller, Katherine R.; Patel, Jai N.; Symanowski, James T.; Edelen, Connie A.; Walsh, Declan
This study determined acupuncture's effect on cancer-related pain and identified variables associated with pain response. The authors conclude that acupuncture improved cancer-related pain and other symptoms. Those with higher baseline pain scores and advanced disease were more likely to achieve significant pain reduction. Improved depression and fatigue were closely related to pain reduction.
Miller, Katherine R.; Patel, Jai N.; Symanowski, James T.; Edelen, Connie A.; Walsh, Declan
This study determined acupuncture's effect on cancer-related pain and identified variables associated with pain response. The authors conclude that acupuncture improved cancer-related pain and other symptoms. Those with higher baseline pain scores and advanced disease were more likely to achieve significant pain reduction. Improved depression and fatigue were closely related to pain reduction.
It's a hard conversation to have'. Healthcare professionals' views concerning advance care discussions with young people affected by life-limiting neuromuscular diseases: an interview study
BMJ Supportive & Palliative Care, 2019 9(1) p. e9
Hiscock, Andy; Barclay, Stephen
Hiscock, Andy; Barclay, Stephen
There is very limited literature concerning the discussions about end-of-life plans healthcare professionals have with young people affected by life-limiting neuromuscular diseases. While recognising the inevitable progression of the conditions, there was no consensus among interviewees concerning best approaches to discuss end-of-life care plans. Several environmental and personal barriers were identified that lead to avoidance of the emotionally challenging and difficult conversations.
The lived experience of breathlessness for people diagnosed with heart failure: a qualitative synthesis of the literature
Current Opinion in Supportive and Palliative Care, 2019 13(1) p.18-23
Walthall, Helen; Floegel, Theresa
Walthall, Helen; Floegel, Theresa
The experience of breathlessness in patients with heart failure is understudied. Recent studies show those at risk for and those who have heart failure need appropriate education to recognize breathlessness as a critical symptom. In addition, adequate communication between patients and providers of the breathlessness symptom is needed to support management.
Top ten tips palliative care clinicians should know about caring for patients with neurologic illnesses
Journal of Palliative Medicine, 2019 22(2) p.193-198
Mendlik, Matthew T.; McFarlin, Jessica; Kluger, Benzi M.; et al
This article offers palliative care providers 10 useful tips that neurologists with palliative care training think all PC providers should know to improve care for patients with neurologic illness.
Mendlik, Matthew T.; McFarlin, Jessica; Kluger, Benzi M.; et al
This article offers palliative care providers 10 useful tips that neurologists with palliative care training think all PC providers should know to improve care for patients with neurologic illness.
What do patients and family-caregivers value from hospice care? A systematic mixed studies review
BMC Palliative Care 2019, 18:18 (Published on: 8 February 2019)
Nicole Marie Hughes, Jane Noyes, Lindsay Eckley and Trystan Pritchard
Nicole Marie Hughes, Jane Noyes, Lindsay Eckley and Trystan Pritchard
This is the first review to explore what patients and carers value from hospice care. Findings strengthen the existing evidence base and provide new insights beyond symptom management and health outcomes. With large disparities in the availability of services, however, the underrepresentation of patients with nonmalignant diseases and the limited evidence base demonstrating adequate support for the social needs of carers, there continues to be considerable gaps.
Fulltext available in BMC Palliative Care
Wednesday, 16 January 2019
Upper extremity subcutaneous lymphatic drainage "lymphocentesis" for symptom relief in end-stage breast cancer
American Journal of Hospice & Palliative Medicine, 2019 36(2) p. 111-115
Liao, Pamela; Rossini, Kathleen; Sauls, Roberts
Subcutaneous drainage is a technique that has been used in some case reports for the lower extremity and sacrum with good results. This report describes an adapted technique of subcutaneous drainage for treating upper extremity lymphedema in the palliative setting.
Top ten tips palliative care clinicians should know about spinal tumors
Journal of Palliative Medicine, 2019 22(1) p. 84-89
Theresa Williamson, Brice Painter, Elizabeth P Howell, C Rory Goodwin
Continuing the 'Top Ten Tips' series, this month's issue looks at crossfunctional collaboration between palliative care, radiation oncology, medical oncology, and neurosurgery which is crucial both in the maximization of available treatment options and optimization of quality of life for patients with metastatic spine tumours.
Music intervention as a tool in improving patient experience in palliative care
American Journal of Hospice & Palliative Medicine, 2019 36(1) p. 45-49
Peng, Cynthia S.; Baxter, Kelly; Lally, Kate M.
In this study, following live music intervention sessions, patients reported significant decreases in pain, anxiety, nausea, shortness of breath, and feelings of depression along with significant increase in feelings of well-being. Opioid use in time periods after the music intervention trended toward decreased usage when compared to the equivalent time period before. Finally, compiled personal narratives of patients' and families' experiences of the music intervention demonstrated common themes of spirituality, comfort, relaxation, escape, and reflection.
"Remembrance": a self-care tool for clinicians
Journal of Palliative Medicine 2018 December 15
Sue E Morris, John P Kearns, Amanda Moment, Kathleen A Lee, Jane deLima Thomas
This article describes the development of "Remembrance," an interdisciplinary approach to acknowledge and process the deaths of patients on an inpatient palliative care unit. The authors suggest that such a practice is an important component of both quality end-of-life care and clinician self-care, which should be routinely taught and incorporated into clinical services. A template is included that summarises the approach, which can be easily adapted by other hospitals/services to use.
Fulltext available in Journal of Palliative Medicine
'I've no fear of dying alone': exploring perspectives on living and dying alone
Mortality, 2019 24(1) p. 17-31
Caswell, Glenys; O'Connor, Mórna
This paper reports findings from a study which explored ways of investigating individuals' perspectives on dying alone at home. For the older people, the idea of dying alone was less problematic than the idea of needing care and support from others, and the perceived loss of independence that this would entail. The nurses would prefer no one to die alone, but believed they had seen patients managing their own dying so that they could be alone at the moment of death. The paper suggests that dying alone may be a problem for survivors, rather than for the person who is dying.
Caswell, Glenys; O'Connor, Mórna
This paper reports findings from a study which explored ways of investigating individuals' perspectives on dying alone at home. For the older people, the idea of dying alone was less problematic than the idea of needing care and support from others, and the perceived loss of independence that this would entail. The nurses would prefer no one to die alone, but believed they had seen patients managing their own dying so that they could be alone at the moment of death. The paper suggests that dying alone may be a problem for survivors, rather than for the person who is dying.
Diagnosis, assessment and management of constipation in advanced cancer: ESMO Clinical Practice Guidelines
Annals of Oncology: Official Journal of the European Society for Medical Oncology, 2018 29 (Supplement 4) p. iv111-iv125
P J Larkin, N I Cherny, D La Carpia, M Guglielmo, C Ostgathe, F Scotté, C I Ripamonti
The 2018 ESMO Clinical guidelines on diagnosis, assessment and management of constipation in advanced cancer update evidence in relation to strategies for management. Opioid analgesics for cancer pain pose specific challenges for constipation management. A recommendation for the use of peripherally-acting mu-opioid receptor antagonists (PAMORAS) including prolonged-released formulations in the management of refractory constipation is included.
Fulltext available at the European Society for Medical Oncology
P J Larkin, N I Cherny, D La Carpia, M Guglielmo, C Ostgathe, F Scotté, C I Ripamonti
The 2018 ESMO Clinical guidelines on diagnosis, assessment and management of constipation in advanced cancer update evidence in relation to strategies for management. Opioid analgesics for cancer pain pose specific challenges for constipation management. A recommendation for the use of peripherally-acting mu-opioid receptor antagonists (PAMORAS) including prolonged-released formulations in the management of refractory constipation is included.
Fulltext available at the European Society for Medical Oncology
The use of humor in palliative care: a systematic literature review
American Journal of Hospice & Palliative Care 2018, 35 (10): 1342-1354
Miguel Ángel Cuervo Pinna, Vinita Mahtani-Chugani, Miguel Ángel Sánchez Correas, Alvaro Sanz Rubiales
Miguel Ángel Cuervo Pinna, Vinita Mahtani-Chugani, Miguel Ángel Sánchez Correas, Alvaro Sanz Rubiales
The acceptance of the use of humour by terminal stage patients and health-care professionals has not been studied in depth and is not free from controversy. The aim of the study was to understand the significance, appropriateness, and pertinence of the use of humour in palliative care and to analyse its applicability.
The ‘safe death’: an ethnographic study exploring the perspectives of rural palliative care patients and family caregivers
Palliative Medicine, 2018 32(10) p. 1575-1583
Rainsford, Suzanne; Phillips, Christine B.; Glasgow, Nicholas J.; MacLeod, Roderick D.; Wiles, Robert B.
It was found that a ‘safe death’ was central to a ‘good death’ and was described as a death in which one could maintain (1) a connection with one’s previous identity; (2) autonomy and control over decisions regarding management of end-of-life care and (3) not being overwhelmed by the physical management of the dying process. For all participants, the preferred place of death was the ‘safe place’, regardless of its physical location. The authors conclude that a home death is not essential for and does not ensure a ‘good death’.
Rainsford, Suzanne; Phillips, Christine B.; Glasgow, Nicholas J.; MacLeod, Roderick D.; Wiles, Robert B.
It was found that a ‘safe death’ was central to a ‘good death’ and was described as a death in which one could maintain (1) a connection with one’s previous identity; (2) autonomy and control over decisions regarding management of end-of-life care and (3) not being overwhelmed by the physical management of the dying process. For all participants, the preferred place of death was the ‘safe place’, regardless of its physical location. The authors conclude that a home death is not essential for and does not ensure a ‘good death’.
Development, validity and reliability testing of the East Midlands Evaluation Tool (EMET) for measuring impacts on trainees' confidence and competence following end of life care training
BMJ Supportive & Palliative Care, 2018 8(4) p.439-446
Whittaker, B; Parry, R; Bird, L; Watson, S; Faull, C;
The EMET comprises 27 items with Likert-scaled responses supplemented with questions seeking free-text responses. The authors suggest that this tool is effective in assessing impacts of end of life care training and gathering feedback on training events.
Available in print in Arthur Rank Hospice Library, Cambridge
Whittaker, B; Parry, R; Bird, L; Watson, S; Faull, C;
The EMET comprises 27 items with Likert-scaled responses supplemented with questions seeking free-text responses. The authors suggest that this tool is effective in assessing impacts of end of life care training and gathering feedback on training events.
Available in print in Arthur Rank Hospice Library, Cambridge
Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from
BMJ Supportive & Palliative Care, 2018 8(4), p447-455
Petrova, Mila; Riley, Julia; Abel, Julian; Barclay, Stephen
EPaCCS are England's pre-eminent initiative in enabling advance care planning and improved communication and coordination at the end of life but have been extremely challenging to develop and implement. The authors discuss the current EPaCCS landscape and way forward, summarise key facts concerning the availability, uptake, outcomes and costs of EPaCCS and outline the key challenges and drivers.
Petrova, Mila; Riley, Julia; Abel, Julian; Barclay, Stephen
EPaCCS are England's pre-eminent initiative in enabling advance care planning and improved communication and coordination at the end of life but have been extremely challenging to develop and implement. The authors discuss the current EPaCCS landscape and way forward, summarise key facts concerning the availability, uptake, outcomes and costs of EPaCCS and outline the key challenges and drivers.
Fulltext available in BMJ Supportive & Palliative Care
Available in print in Arthur Rank Hospice Library, Cambridge
Dying in long-term care: perspectives from sexual and gender minority older adults about their fears and hopes for end of life
Journal of Social Work in End-of-Life & Palliative Care, Nov 2018 ; p. 1-16
Kortes-Miller, Katherine; Boulé, Jessica; Wilson, Kimberley; Stinchcombe, Arne
This qualitative study from Canada explored the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Fears included social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The authors conclude there is a need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to create supportive and inclusive long-term care environments.
Kortes-Miller, Katherine; Boulé, Jessica; Wilson, Kimberley; Stinchcombe, Arne
This qualitative study from Canada explored the hopes and fears of older LGBTQ + adults considering long-term care as they face end of life. Fears included social isolation, decreased independence and capacity for decision-making, increased vulnerability to LGBTQ+-related stigma as well as exposure to unsafe social and physical environments. The authors conclude there is a need for palliative care specialists and long-term care home staff to address the unique health needs of older LGBTQ + adults nearing the end of life in order to create supportive and inclusive long-term care environments.
Welcoming death: exploring pre-death grief experiences of caregivers of older adults with dementia
Journal of Social Work in End-of-Life & Palliative Care, Nov 2018 ; p. 1-17
Hovland, Cynthia
Hovland, Cynthia
This qualitative study explored the end-of-life experiences for 36 bereaved family caregivers of older adults with dementia, focusing on understanding their experiences with pre-death grief. These caregivers shared experiences with the phenomenon of "welcoming death" and findings highlighted the primary reasons they anticipated, accepted, or wished for the death of their family member with dementia. With the overarching goal of improving bereavement outcomes and reducing feeling of guilt, the author recommends pre-death grief support services throughout the caregiving process.
Systematic review and meta-analysis on non-opioid analgesics in palliative medicine
Journal of Cachexia, Sarcopenia and Muscle 2018 October 29
Robert H Schüchen, Martin Mücke, Milka Marinova, Dmitrij Kravchenko, Winfried Häuser, Lukas Radbruch, Rupert Conrad
This systematic review aimed to bring together the evidence for pain relief in palliative care but was able to identify only studies dealing with cancer pain. The review summarises this evidence and highlights the lack of evidence for the management of pain with non-opioids in conditions other than cancer.
Fulltext available at Wiley Online Library
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