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Specialist palliative care staff’s varying experiences of talking with people with intellectual disability about their dying and death: A thematic analysis of in-depth interviews
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) experience and expertise of palliative care staff, (3) the relationship between palliative care staff and dying person, and (4) values of palliative care staff and other caregivers.
Urgent policy and practice changes are required to address misinformation and assumptions about people with intellectual disability, including the development of guidelines regarding communication about dying and death with people with intellectual disability in palliative care. Specialist palliative care services need to prioritise staff training for those working with this patient group, and focus on developing knowledge and skills in communication strategies relevant to people with intellectual disability. Future research should focus on the needs of people with intellectual disability and their caregivers in palliative care across all levels from policy to practice.
Emotional disclosure in palliative care: a scoping review of intervention characteristics and implementation factors
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 in delivery and topic, clarity of instructions and staff training are identified as important factors to consider when tailoring emotional disclosure based interventions for people with advanced disease.
The review provides an exemplar approach to scoping literature to inform complex intervention development and evaluation in cases where pre-existing findings are mixed. The review highlights the need for researchers to report key facilitators and barriers they find in intervention implementation and efficacy when presenting results. Researchers should consider the recommendations made in this review to inform development and evaluation of emotional disclosure-based interventions tailored for people with advanced disease.
Healthcare professionals’ views of the use of oral morphine and transmucosal diamorphine in the management of paediatric breakthrough pain and the feasibility of a randomised controlled trial: a focus group study (DIPPER)'
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 overcome by offering education and undertaking research, potentially leading to a licensed preparation.
Clinicians identified clinical scenarios where transmucosal diamorphine may be preferable but identified several current barriers to its use. Access to a safe and effective preparation of transmucosal diamorphine would provide a range of options with which clinicians could flexibly target breakthrough pain in different clinical scenarios. This adds to the case for undertaking research in this population despite perceived challenges.
Pharmacological strategies used to manage symptoms of patients dying of COVID-19: A rapid systematic review
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 symptom control. There was a lack of information about how effectiveness was measured, and whether medications used effectively alleviated symptoms.
Dexmedetomidine for hyperactive delirium at the end of life: An open-label single arm pilot study with dose escalation in adult patients admitted to an inpatient palliative care unit
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 further exploration.
Sadness, despair and anger when a patient dies alone from COVID-19: A thematic content analysis of Twitter data from bereaved family members and friends
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 platform to encourage positive public health messages, express condolences to and support others, and pay tribute to the deceased. There was ambivalence about the use of video-conferencing technology, which was often presented as an inadequate substitute, and frustration and blame were directed at governments’ inaction and policies as well as the behaviour of the general public.
Governments should provide clear guidance to support end-of-life care providers in facilitating and optimising contact with loved ones, even when strict visiting policies are necessary; this must include adequate access to personal protective equipment. Signposting bereaved family members and friends to bereavement services, and proactively identifying and supporting those at particular risk of poor outcomes, is as crucial during a pandemic, as it is in non-pandemic times. Further research is needed to fully understand the emotional toll expressed in these tweets and the immediate and sustained impacts of bereavement during the pandemic.