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.
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.
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.
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.
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.
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.
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 restrictions. Findings demonstrate a prevailing uncertainty, fear and anxiety regarding: changes to practice; control over access to people who have been hospitalised; the possibility of dying alone or having loved ones die alone; and being unable to properly commemorate a death. Articles focused on what was forbidden rather than permitted and offered little practical guidance for the public.
Understanding the media representations and cultural narratives around a ‘good death’ and ‘good grief’ that influence patients’ and families’ fears and anxieties can help inform person-centred care and bereavement support. Clinicians should explore with families ways of finding meaningful connection and of saying goodbye despite restrictions, and, alongside other bereavement support providers and hospital press officers, should offer alternatives to exaggerated or inaccurate media narratives. More could be done in media reporting to portray diverse experiences and offer practical advice to members of the public dealing with serious illness and bereavement during the pandemic.
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 heart failure.
Validated tools are needed to help healthcare professionals to recognize palliative care needs in patients with chronic heart failure. Policy makers, guideline developers and quality improvement experts must be aware of the purpose and prior conditions of existing tools in the context of chronic heart failure before integrating them in policy, guidelines or local work appointments.
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 the responsibility for assessing refractory symptoms and palliative sedation. There is a lack of evidence, regarding measurement approaches or instruments for assessment of existential and psychological distress leading to palliative sedation; and also, for measuring adverse events.
Measurement instruments adapted to palliative care context should be used to assess palliative sedation, as these will facilitate practice improvement and comparability of the study’s results. Adding measurement instruments for comfort can contribute to assessing palliative sedation effects. A more standardized approach to assessing the effect of palliative sedation and possible adverse events, paying special attention to adequate training of health care professionals and timing of measurements, is needed to improve the quality of palliative sedation.
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 care integration in the burn unit. Palliative care for severely burned patients may need to commence alongside active burns management.
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 different care settings and multi-disciplinary teams may help address issues relating to frequent use of acute interventions during the last weeks of life. Prospective multi-centre studies, potentially using mixed methods approaches, and focused on testing specific components of care may help further understand and tailor services more appropriately to meet needs.
If you would like to record a podcast about your published (or accepted) Palliative Medicine paper, please contact Dr Amara Nwosu:
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 and cancer. Palliative care and oncology must partner effectively to ensure patients’ quality of life and when to stop curative treatment. Strategies like joint visits or strengthening the professional relationships across specialties such that palliative care and oncology clinicians can have open conversations about patients may help to reduce the prevalence of conflicting messages to patients.