Palliative care strategies offer guidance to clinicians and comfort for COVID-19 patient and families

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Heart & Lung, 2020, vol. 49, no. 3, pp. 227-228

Feder; Akgün; Kathleen M.; Schulman-Green, Dena

The novel coronavirus (COVID-19) has caused a fast-moving, highly distressing global health crisis. Patients of all ages face daunting illness while healthcare systems struggle to meet the growing demand for services. The need for palliative care (PC) is likely to be substantial, and yet, PC specialists are in short supply. This article examines the special considerations in applying core PC principles during the COVID-19 crisis as well as targeted strategies to support patients and families.

Constructing stability - a classic grounded theory of next-of-kin in palliative cancer care

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BMC Palliative Care, 2020, vol. 19, no. 1, pp. 1-9

Werkander, Harstade; Sandgren, Anna

Being next-of-kin to someone with cancer requiring palliative care involves a complex life situation. Changes in roles and relationships might occur and the next-of-kin thereby try to adapt by being involved in the ill person’s experiences and care even though they can feel unprepared for the care they are expected to provide. The aim of this study was to develop a classic grounded theory of next-of-kin in palliative cancer care. The theory shows the complexities of being next-of-kin to someone receiving palliative care, while striving to construct stability.

End-of-life decisions and care in the midst of a global coronavirus (COVID-19) pandemic

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Intensive & Critical Care Nursing, 2020, vol. 58

Pattison, Natalie

This article examines the unprecedented and unfolding global situation with Coronavirus (the virus SaRS Cov-2, leading to the disease named COVID-19) (WHO, 2020) which has forced health care providers across the world to consider end-of-life issues in a very rapidly changing scenario.

Top Ten Tips Palliative Care Clinicians Should Know About Psychosocial and Family Support

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Journal of Palliative Medicine, 2020, vol. 23, no. 2, pp.280-286

Farabelli, Jill P.; Kimberly, Sharon M.; Altilio, Terry; et al.

Palliative care (PC) is perhaps the most inherently interdisciplinary specialty within health care. Comprehensive PC is delivered by a core team of physicians, nurses, social workers, spiritual care providers, pharmacists, and others who address the broad range of medical, psychosocial, and spiritual needs of those living with serious illness. While PC clinicians are typically skilled in screening for distress, the best path to follow when patients screen positive for psychosocial distress or exhibit mental health challenges may not always be clear. This article brings together the perspectives of experienced social workers practicing across PC and hospice settings. It seeks to identify opportunities and rationale for the integration of palliative social work (PSW) in the provision of quality, person-centered, family-focused, and culturally congruent care for the seriously ill. Increasing recognition of the impact of social determinants of health highlights the critical importance of including PSW if we are to better understand and ultimately address the broad range of factors that influence people's quality of life.

Memento Mori: Can art assist student nurses to explore death and dying? A qualitative study.

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Nurse Education Today, 2020, vol. 89

Nicol, Jane; Pocock, Mary

This report looks at how an art-based workshop assisted undergraduate nursing students to explore their experiences and beliefs about death and dying. While this study focused on an educational strategy delivered to student nurses, it is an approach that could be used with other health and social care professionals. Close and critical observation of the selected art increased participant understanding and insight of the many experiences and interpretations of death and dying.

A Palliative Care Program for Volunteers in a Community Setting: A Mixed-Methods Pilot Study

American Journal of Hospice & Palliative Medicine, 2020, vol. 37, no. 6, pp. 455-464

Lee, Jiwon; Lee, Jong-Eun

The objective of community-based palliative care is to improve the quality of life of patients and their families and to share the responsibility of caregiving. However, the evidence of the efficacy of volunteer services in community-based palliative care is insufficient. This pilot study sought to uncover the feasibility and efficacy of a volunteer program in palliative care. In conclusion, a palliative care program was found to be useful for volunteers in finding meaning in life, motivating continued volunteering. Moreover, caregivers were satisfied with the palliative care service of volunteers.

A feasibility and acceptability study of an adaptation of the Mindful Self-Compassion program for adult cancer patients

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Palliative & Supportive Care,2020, vol. 18, no 2, pp. 130-140

Brooker, Joanne; Julian, John; Millar, Jeremy et al.

Psychosocial interventions that mitigate psychosocial distress in cancer patients are important. The primary aim of this study was to examine the feasibility and acceptability of an adaptation of the Mindful Self-Compassion (MSC) program among adult cancer patients. A secondary aim was to examine pre–post-program changes in psychosocial wellbeing.

Impact of informal cancer caregiving across the cancer experience: A systematic literature review of quality of life

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Palliative & Supportive Care, 2020, vol. 18, no. 2, pp. 220-240
Ochoq, Carol; Buchnam Lunsford, N; Lee Smith, Judith

Informal caregiving may likely increase as the number of cancer survivors grows. Caregiving responsibilities can impact caregivers’ quality of life (QOL). Understanding the current state of the science regarding caregiving QOL could help inform future research and intervention development.

Distress and self-care among chaplains working in palliative care

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. 

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. 

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.

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.

Fulltext available in BMJ Supportive and Palliative Care

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.

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

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. 

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.