Rainbow Hospice and Palliative Care

<h3>Introduction</h3> Respiratory and oropharyngeal secretions present significant challenges in motor neurone disease (MND). Symptoms such as choking and impaired cough compromise quality of life, place burdens on unpaid carers, and limit the effectiveness of interventions including non-invasive ventilation. Despite their prevalence, good symptom management is rare. <h3>Aims</h3> The session Aims to: Describe the complexity of secretion management in MND. Consider the Impact of cough, choking, and secretion difficulties on patients and carers. Present emerging evidence and co-produced interventions to improve practice. <h3>Methods</h3> Speakers will present perspectives informed by clinical research and co-production with people living with MND. Topics include healthcare professional challenges, development of assessment tools, co-designed clinical management plans for choking, and approaches to sialorrhea management in complex neurological disability. A person living with MND will provide a lived experience perspective. The 45-minute session will combine structured presentations with panel discussion and case studies. <h3>Results</h3> The session will highlight the multifactorial nature of secretion management, the need for individualised approaches to cough augmentation, and the importance of equipping clinicians with confidence to respond to choking episodes. Co-production with patients and carers will underpin practical guidance and assessment tools, ensuring interventions are clinically relevant and acceptable. Lessons from specialist neurological care will broaden understanding of transferable strategies for secretion management. <h3>Conclusion</h3> Effective management of cough and secretions in MND require integrated, patient-centred solutions. Collaborative approaches between clinicians, researchers, and people living with MND will generate interventions that address unmet needs in palliative care. <h3>Impact</h3> This work will strengthen professional knowledge and confidence, support equitable palliative care for non-cancer conditions, and demonstrate the value of co-production. It will provide a model for improving symptom management and quality of life in MND and related neurodegenerative diseases.

High-functioning palliative care teams are essential to high-quality care for individuals with serious illness and their families. Such teams are flexible and adapt to change. However, recent high turnover and understaffing, compounded by a pandemic, challenge even the most resilient and adaptable teams. An effective leader guides a team through change, capitalizing on opportunities to build an even stronger team. However, most palliative care team leaders lack formal leadership training and are inadequately prepared to lead through such circumstances. Leaders may find caring for seriously ill patients professionally satisfying, even as aspects of their leadership role cause them significant distress. For this reason, we share some lessons learned in leading evolving palliative care teams of varying composition, practice settings, and degrees of maturation. We hope these strategies equip palliative care leaders to build stronger, even more cohesive teams in times of change and uncertainty.

In 2015, five hospice representatives across Hertfordshire and Bedfordshire met as a ‘meet and finish’ group to review the service that hospices and palliative care providers give to carers. The aims of the group were to identify: Gaps in provision Types of assessment tools used Key learning from other services The need for services to collectively to reach more people. The types of hospice support for adult family carers within the Hospice UK (2013) document “Supporting family carers: report on the evidence of how to work with and support family carers to inform the work of the Commission into the Future of Hospice Care” were used as a basis of the discussion: Information, training and education – moving and handling, disease process, prognosis, specific care tasks, medication, dying Supportive activities – Drop in sessions, self-help groups, walking or activity groups, volunteer visiting, art-making groups Therapeutic activities – one-to-one counselling, therapeutic support groups, drama, music or art therapy, relaxations or mindfulness classes, complementary therapies and psychotherapy. The focus group ascertained that hospices are confidently providing therapeutic activities, however, they were less confident that hospices provide sufficient information, training and education and supportive activities for carers. Outcome The group agreed to produce a minimum standard for specialist palliative care providers/hospices in meeting carers’ needs. Minimum standard for supporting carers by specialist palliative care providers/hospices Signpost those early in the trajectory to partner organisations Young carers Carer Support Needs Assessment Tool Moving and handling, the care towards the end of life and Caring in Confidence courses Leaflets and website Financial or benefit advice Supportive activities Therapeutic activities.

To the Editor: China ended its 35-year-old One-Child Policy in October 2015 to slow the aging of its population. This was announced when the authors were in Shanghai as delegates of Chicago Sister Cities International's Chicago-Shanghai Social Services Exchange Program. The One-Child Policy was a driving force behind rapid population aging in China. The vibrant city of Shanghai has a population of more than 24 million; more than 2.7 million are aged 65 and older, equal to the total population of Chicago. Seeing is believing. Panoramic scenes of older adults practicing tai chi, dancing, singing, and exercising on the streets and in the parks, in front of children's playgrounds, with no or few children in sight, even on rainy days, were striking. Exercising and dancing in groups may be partly cultural but also policy driven. There were park bulletin boards with governmental health promotion messages. There was colorful, inviting exercise equipment in the park, literally a “playground for adults.” There were gadgets to help frail nursing home residents engage in physical and cognitive exercise to delay progression of disabilities. What was most striking was Shanghai's openness to learning from the world. Program directors and staff talked about ideas, systems, programs, and equipment imported or learned from other countries in Asia, Europe, and North America. They identify, adapt, and implement best practices from around the world. Shanghai is one of the first cities in China to experiment with a long-term care insurance system based on what they learned from Japan, Germany, and other countries. The United States has developed and tested model care programs for older persons. Such programs have inspired many countries, but the United States lags in incorporating such model programs into its own healthcare system. Most Americans do not have long-term care coverage, unless they are poor enough to be eligible for Medicaid or other public programs. Many Americans do not know that Medicare does not cover long-term care. The United States planned to establish long-term care insurance as part of the Affordable Care Act, but these plans were quietly repealed in 2013. The current U.S. long-term care system is largely funded by Medicaid and thus managed by each state. States learn from each other but seldom from other countries, assuming that foreign models are irrelevant because of cultural and system differences. This attitude differs from what was observed in Shanghai. Global learning on aging is crucial. Chicago and Shanghai face remarkably similar challenges: coordinating medical and social services, improving dementia and end-of-life care, protecting older adults from abuse and neglect, achieving effective public-private partnerships, and establishing systems to enable older adults to remain in their own communities. Low wages in long-term care work make it difficult to attract workers. Migrant workers are often hired to care for older adults in Shanghai and Chicago. The extent and speed of aging in Shanghai drives the urgent search for solutions by the government and communities. Such urgency is highly needed in Chicago and the United States to mobilize political will to care for aging baby boomers with increasingly complex medical and social service needs. There were sepia images of old Shanghai displayed on the walls of old-age facilities to help older residents feel comfortable in their era as youth, while the outside world is quickly changing. Nevertheless, the United States cannot live in the past. The United States must innovate and engage in global learning to develop an effective long-term care system. Further international efforts to learn from one another should be made to address population aging before it is too late. Conflict of Interest: The editor in chief has reviewed the conflict of interest checklist provided by the authors and has determined that the authors have no financial or any other kind of personal conflicts with this paper. Author Contributions: All authors contributed to the ideas expressed in this letter. This is not an empirical paper and does not include data or analysis. Sponsor's Role: There is no sponsor for this submission.

Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles. Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents. Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues. This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles.