Sage Palliative Medicine & Chronic Care

This episode features Dr Eleanor Wilson (Nottingham Centre for the Advancement of Research in End of Life Care, School of Health Sciences, University of Nottingham Medical School, Queen’s Medical Centre, Nottingham, UK) Managing medications at home can be a complex task involving ordering, collecting, organising, storing and taking medications correctly. Medication work must take place alongside ongoing management of household tasks, the physical and emotional labour of caring for someone who is dying and the impending loss of that person. Family caregivers are often assumed to be willing and able to take on the role of supporting patients to manage their medications at home, yet many are themselves older adults with serious health problems or adult children with many other conflicting roles and responsibilities. Knowledge of the ways that managing medications adds to the considerable burden of care and work that must be undertaken when someone is seriously ill and dying at home. Family caregivers are incre

This episode features Florence Reedy (Wolfson Palliative Care Research Centre, Hull York Medical School, University of Hull, Hull, UK). Chronic breathlessness is a prevalent symptom amongst patients with advanced medical conditions. In combination with disease-modifying therapies and non-pharmacological interventions, regular low dose opioids may safely reduce moderate to severe chronic breathlessness due to advanced medical conditions. Implementation of opioids for chronic breathlessness in clinical practice varies widely. Clinicians’ and patients’ fears of opioids causing respiratory depression, addiction and regulatory scrutiny are significant barriers in the use of opioids for breathlessness. Education and information are necessary, but insufficient as a sole strategy, to improve implementation of opioid use for this indication. Clinicians’ interactions with patients and their families strongly influence acceptance of, and adherence to opioid treatment regimens for chronic breathlessness. An agreed pro

This episode features Baby Foo (School of Psychology, The University of Sydney, Sydney, NSW, Australia) and Dr Michele Wiese (School of Psychology, Western Sydney University, Penrith, NSW, Australia). With advancing age and the experience of life-limiting illness, people with intellectual disability need equitable access to effective palliative care. Palliative care staff experience unique challenges when caring for people with intellectual disability, such as communication barriers, which can make it more difficult to address their needs. People with intellectual disability are not routinely included in conversations about their dying and death in primary and residential care settings, unless they instigate these discussions. This study highlights that specialist palliative care staff do not consistently talk with people with intellectual disability about their dying and death. Conversations about dying and death are influenced by the (1) perceived capacity of the person with intellectual disability, (2)

This episode features Daisy McInnerney (Marie Curie Palliative Care Research Department, Division of Psychiatry, UCL, London, UK). Emotional disclosure -based interventions can improve psychological and physical wellbeing in general populations. A range of emotional disclosure-based interventions exist, but evidence of their efficacy in palliative care is mixed; it is not clear in which forms they may be effective or most effective, and on which outcome. Trials have been limited in the extent to which they have tailored the intervention for people with advanced disease. To our knowledge, this is the first scoping review to systematically map the characteristics of emotional disclosure-based interventions that have been tested in people with advanced disease. By grouping intervention characteristics into classes within operative domains and mapping these to outcomes, we provide a picture of which intervention forms may be most promising to pursue in future research. Disease stage, environment, flexibility i

This episode features Dr Liz Jamieson (Research Department of Practice and Policy, University College London School of Pharmacy, London, UK). Oral morphine is the recommended first line treatment for breakthrough pain. Intranasal diamorphine is an effective, rapid onset, well tolerated treatment for use in Accident and Emergency (ED) for trauma patients but lacks study in paediatric palliative care. It is often assumed that large scale clinical trials are not feasible in a paediatric palliative care population. Highlights the variation in experience of use of transmucosal diamorphine for breakthrough pain. Reports clinicians’ experience of the benefits of transmucosal diamorphine in the absence of data for breakthrough pain in children receiving palliative care and highlights their concerns in regard to the feasibility of running a randomised controlled trial of oral morphine versus transmucosal diamorphine. Evidence that many of the identified barriers to wider use of transmucosal diamorphine could be ove

This episode features Laura Health (Nuffield Department of Primary Care Health Sciences, University of Oxford, Oxford, UK). COVID-19 has a mortality of between 1% and 2% and is the deadliest pandemic in living memory. The elderly, and those with pre-existing conditions tend to be most vulnerable to severe disease and death. Common symptoms experienced at the end of life include breathlessness and agitation/delirium. Care of those dying of COVID-19 is an understudied aspect of the pandemic. This paper is the first review of international studies describing pharmacological symptom management of adult patients dying of COVID-19. Our thorough search found only seven papers that documented pharmacological symptom management of this patient cohort, highlighting the lack of research in this area. A higher proportion of patients required continuous subcutaneous infusions for medication delivery than is typically seen at the end of life. Modest doses of commonly used end of life medications were required for sym

This episode features Benjamin Thomas (Palliative Care Service, Illawarra Shoalhaven Local Health District, Warrawong, NSW, Australia). Terminal delirium is a common symptom at the end of life, causing distress to patients and families. Traditional management for terminal delirium requires sedation, which limits interaction and rousability. This study is the first to report on the use of dexmedetomidine for the treatment of terminal delirium in palliative care, in a single arm open-label study. Dexmedetomidine, delivered by subcutaneous infusion, decreases delirium as measured by standardised tools, with increased patient interaction and rousability. Patients treated with dexmedetomidine are able to self-report comfort at the end of life, reassuring clinicians and families. Results from this study support further research into the use of dexmedetomidine in palliative care, particularly in comparison with standard care to determine efficacy. Family comfort with rousability at the end of life requires furt

This episode features Dr Lucy Selman  (Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK). Twitter is a rich repository of data reflecting contemporaneous public opinion. The idea of dying alone is contrary to the concept of a ‘good death’ in many cultures, and not being able to say goodbye is a known risk factor for poor bereavement outcomes. During the COVID-19 pandemic, many bereaved people have been unable to be present when their loved one died due to setting-specific infection control restrictions that vary across regions and institutions. Twitter users expressed sadness, despair, hopelessness and anger about their experience and loss during the COVID-19 pandemic, with the challenges they experienced before the death compounded by a lack of social support and disrupted rituals afterwards. A sense of political neglect or mistreatment was frequently expressed, alongside calls for action, but Twitter users also used the

This episode features Dr Lucy Selman  (Palliative and End of Life Care Research Group, Population Health Sciences, Bristol Medical School, University of Bristol, Bristol, UK). During COVID-19, infection control measures have prevented many family members from being with seriously ill or dying loved ones, and impacted on after-death mourning practices and bereavement. Clinicians and funeral officiants have tried to mitigate the impact of infection control measures, for example, using video-technology; however, this has not been done consistently and its acceptability is unknown. The news media play an important role in creating a sense-making narrative, reflecting and enforcing cultural ideas and shaping experiences of illness and bereavement. Online UK newspapers focused on how COVID-19 disrupted ‘saying goodbye’ (prior to death, at the moment of death and after death) and conflicted with cultural understandings of a ‘good death’ and ‘good grief’, despite efforts undertaken to mitigate the effects of restr

This episode features Dr Stephanie Ament (Department of Health Services Research, Care and Public Health Research Institute, Maastricht University, Maastricht, The Netherlands). Identification of palliative care needs in patients with chronic heart failure may be more appropriate for the delivery of optimal care than the application of prognostic models to estimate the risk of dying. Interdisciplinary palliative care interventions in addition to regular heart failure care have a positive impact on quality of life, patient satisfaction, advance care planning, and cost-minimization. Seven tools were identified to help healthcare professionals to recognize palliative care needs in patients with chronic heart failure. The identified tools differ in purpose, content, and user. The validation of the tools and the validation research specifically for the context of chronic heart failure is limited. Guidance and education for using the tool are needed for implementation of a tool in the context of advanced chronic

This episode features Dr Geraldine Foley (Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, Trinity Centre for Health Sciences, Dublin, Ireland). Gerladine provides a summary of her letter, where she discusses how researchers have an opportunity to identify and learn from the benefits and/or challenges of conducting video-based online interviews with patients and caregivers in palliative care research. Online interviewing through videoconferencing platforms in palliative care research might well become a ‘new normal’ in COVID-19.

This episode features Professor María Arantzamendi (Institute for Culture and Society-ATLANTES, Universidad de Navarra, Pamplona, Spain). In the context of patients with incurable disease palliative sedation is used for refractory symptom control. A minority of articles measure the effect of palliative sedation and current assessment of parameters of such effect is limited. The literature about palliative sedation measurement has mainly focused on medication use and level of sedation. Discomfort Scale-dementia of Alzheimer Type (DS-DAT) and Patient Comfort Score (PCS) are assessment instruments being used to measure the effect of palliative sedation on patient comfort, the latter being validated for palliative care context. There is limited evidence on the timing of assessment, reported use ranges from daily assessment to six times per day, with often hourly measurements until adequate sedation is achieved. There is limited data available on the training and preparation of the health professional who has th

This episode features Jonathan Bayuo (Presbyterian University College, Abetifi, Eastern, Ghana and The Hong Kong Polytechnic University, Kowloon, Hong Kong). The immediacy of death in the burn unit is usually in the order of hours or days requiring the timely application of palliative care. Although the culture of burns/ critical care units is evolving the support the integration of palliative care, several barriers such as prognostication and lack of guidelines exist. Clinicians working in burn/ critical care units may experience emotional exhaustion The findings suggest a complex decision-making process which may delay the initiation of comfort care. Collaboration with palliative care practitioners and training are required to support the integration of palliative care in the burn unit. Guidelines to support the delivery of palliative care may focus on communication, symptom management, and post-bereavement support for families and staff. A collaborative model of care is required to support palliative ca

This episode features Dr Catriona Mayland (University of Sheffield, Sheffield, UK). Advanced head and neck cancer patients have specific challenges due to the impact of the illness on vital functions such as eating, speaking and breathing. Identifying the palliative care needs of this specific cancer subgroup would help provide guidance about how services could best provide care. Advanced head and neck cancer patients have a diverse range of palliative care needs, but there is variability in terms of access and timing to palliative care services. Dissonance between patients and family carers about information needs and decision-making represent additional complexities. Head and neck cancer patients frequently require acute interventions even during the last weeks of their life. Tailored needs-based referral systems for advanced head and neck cancer patients may help address issues relating to access to palliative care services. Models of care focused on increased integration and coordination across differe

This episode features Jeanna Qiu (Harvard Medical School, Boston, MA, USA). Maintaining quality of life for patients with malignant fungating wounds requires collaboration of diverse healthcare specialties, from oncology and palliative care to wound care. Research has explored the experiences of patients with malignant fungating wounds and the nurses who treat them. It is essential to understand the experiences and perceived roles of clinicians from different specialties and disciplines who treat patients with malignant fungating wounds Different clinical specialties assumed the leading role at different points of the clinical care timeline with medical oncology prominent throughout care. Identifies the points in time when collaboration between specialties is essential, when communication fails, or when clinicians from different specialties have differing perspectives and experiences. Wound care and medical oncology must collaborate effectively to ensure accurate assessment of the progression of the wound

This episode features Dr Bridget Candy (Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London, London, UK). A systematic review of effectiveness data on aromatherapy, massage and reflexology in palliative care drew inconclusive conclusions. A systematic review of qualitative evidences shows palliative care patients highly value complementary therapy. None of the aromatherapy, massage or reflexology trials included all key delivery components as outlined by palliative care patients. The five quality of life scales used in the trials failed to capture the range of perceived benefits from the complementary therapies and many included inappropriate or redundant items. This novel but simple method of integrating synthesised qualitative and quantitative reviews through matrices allows the reasons for inconclusive trial evidence to be explored. This synthesis has highlighted a need for fully powered, robust trials of aromatherapy, massage and reflexology that are condu

This episode features Dr Katie Ekberg (School of Early Childhood and Inclusive Education, Queensland University of Technology, Australia) and Dr Anthony Herbert (School of Early Childhood and Inclusive Education, Queensland University of Technology, Australia). The urgency of caring for children with complex and serious conditions ensures that care must continue during the Coronavirus Disease 2019 (COVID-19) pandemic. As yet, guidelines for communication with families about the COVID-19 pandemic are not based on direct observational evidence of actual communication practices within palliative care during the pandemic. The current study provides evidence of the pervasive relevance of communication about the COVID-19 pandemic during clinician-family paediatric palliative care consultations.There was a pervasive relevance of serious and non-serious talk about the pandemic. Topics typical of standard paediatric palliative care consultations often led to discussion of the pandemic, including medical discussions

This episode features Dr Yakubu Salifu (International Observatory on End of Life Care, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Lancaster, Lancashire, UK). Caring for a family member with advanced prostate cancer in the home presents practical and emotional challenges, especially in resource-poor contexts, where there are increasing palliative cases without adequate palliative care institutions. The study explored palliative and end-of-life care experiences of family caregivers and patients living at home in a resource-poor context in Ghana. Men with advanced prostate cancer face complex issues, including lack of access to professional care and a lack of resources for homecare.  Family caregivers do not have easy access to professional support; they often have limited knowledge of disease progression. Patients have inadequate access to medication and other practical resources for homecare. Caregivers may be overburdened and perform the role of the patient’s ‘doctor’