The latest medical research on Palliative Medicine
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Opinion in supportive & palliative careCurrent Opinion in Supportive and Palliative Care was launched in 2007. It is one of a successful series of review journals whose unique format is ...
Existential aspects of breathlessness in serious disease.
Opinion in supportive & palliative careBreathlessness may evoke existential threat but may also affect the person with serious illness or their caregiver/s in other important ways which can be considered 'existential'. This review explores existential aspects of breathlessness in people with serious illness and presents recent studies of assessment and management of associated distress and suffering.
Both existential distress and breathlessness are multidimensional and include a range of constructs, many of which have behavioural consequences. Existential distress tracks closely with distressing breathing potentially due to shared underlying neurobiological processing. Paradoxically 'contagious' and isolating effects of breathlessness and related distress have been recently highlighted. Approaches to screening and assessment vary. Preliminary studies have investigated novel approaches to breathing-related anxiety and existential distress.
Studies with existential constructs as outcome measures in people with breathlessness are scarce. Interventions for existential distress developed for those with malignant disease may be beneficial for those with non-malignant conditions, but adaptations may be required. Recently proposed taxonomies of existential distress/concerns may guide assessment and direct novel therapeutic interventions in people living with serious illness and breathlessness-related distress. Neglecting existential aspects of breathlessness represents a missed opportunity to support holistic well-being in people with serious illness.
How to evaluate exertional breathlessness using normative reference equations in research.
Opinion in supportive & palliative careBreathlessness is a common, distressing and limiting symptom in people with advanced disease, but is challenging to assess as the symptom intensity depends on the level of exertion (symptom stimulus) during the assessment. This review outlines how to use recently developed normative reference equations to evaluate breathlessness responses, accounting for level of exertion, for valid assessment in symptom research.
Published normative reference equations are freely available to predict the breathlessness intensity response (on a 0-10 Borg scale) among healthy people after a 6-minute walking test (6MWT) or an incremental cycle cardiopulmonary exercise test (iCPET). The predicted normal values account for individual characteristics (including age, sex, height, and body mass) and level of exertion (walk distance for 6MWT; power output, oxygen uptake, or minute ventilation at any point during the iCPET). The equations can be used to (1) construct a matched healthy control dataset for a study; (2) determine how abnormal an individual's exertional breathlessness is compared with healthy controls; (3) identify abnormal exertional breathlessness (rating > upper limit of normal); and (4) validly compare exertional breathlessness levels across individuals and groups.
Methods for standardized and valid assessment of exertional breathlessness have emerged for improved symptoms research.
Education for people with serious chronic respiratory diseases and their informal caregivers: how to address challenges that impact learning.
Opinion in supportive & palliative careShared decision making is crucial in palliative care for people with serious chronic respiratory diseases and their informal caregivers. Patient education is a critical component in this process, as it provides patients and their informal caregivers the necessary knowledge for informed decisions regarding symptom management, coping with breathlessness, and advance care planning. However, education does not automatically lead to acquiring knowledge. This review describes challenges for education for people with serious chronic respiratory diseases and their informal caregivers and describes how learner-centered education can address these.
People with serious chronic respiratory diseases and their informal caregivers face diverse information needs and learning challenges, with low health literacy and cognitive problems being common. Healthcare professionals can facilitate learner-centered education by enhancing motivation for knowledge acquisition by meeting information needs and learning preferences of patients and their informal caregivers, and by ensuring that information is understandable and readable for those with low health literacy and cognitive problems. E-health applications may serve as valuable tools in this process.
Learner-centered education may enhance knowledge acquisition in people with serious chronic respiratory diseases and their informal caregivers aiming to gain control over symptoms and optimize shared decision making and advance care planning.
Early integration of palliative care in haemato-oncology: latest developments.
Opinion in supportive & palliative careThis review aimed to explore recent progress made in the past five years towards early access to, and integration of palliative care services within the haemato-oncology context to address the unique needs of patients with Haematological malignancies (HMs).
We included 14 articles in our review. We identified three themes, namely (i) disparities in the timing of referrals remain, (ii) specialist palliative care and impact on quality of life and (iii) perceptions on early integration. Patients with HM, receive less palliative care services, regardless of their higher symptom burden compared to patients with solid tumours. Structured approaches and models of early integration have shown substantial benefits, including improved pain and symptom management, shorter hospital stays and better end of life planning. Perceptions on existing barriers include the curative treatment focus, haematologists' personal perceptions on timing of palliative care and lack of palliative care training.
For early integration to happen, it is crucial to address training gaps, improve communication skills, and foster interdisciplinary collaboration. Standardised organisational pathways can facilitate early and concurrent palliative care integration. System-level flexibility and supportive policies are essential to ensure that patients with HM receive comprehensive and high-quality care.
Symptom management for people with advanced dementia who are receiving end of life care.
Opinion in supportive & palliative careThis review aims to synthesise contemporary research on symptom management for people with advanced dementia who are thought to be in the final year of life. It highlights the unique challenges faced by palliative care and dementia care specialists, offering insights into the clinical decision-making required to support those with advanced dementia in various care settings.
Recent studies indicate that people with advanced dementia often experience significant unmet palliative care needs, particularly regarding symptom management. Pain, breathlessness, and psychological distress are frequently mismanaged, which contributes to suboptimal care. Moreover, the unpredictable trajectory of dementia complicates the identification of end-of-life needs, which can result in fragmented care. Caregivers, both professional and family, struggle with managing complex symptoms, while family caregivers in home settings face added burdens in providing care without sufficient support.
Palliative care for people with advanced dementia is currently inadequate due to a lack of tailored interventions, poor symptom management, and disjointed care systems. Enhancing training for caregivers, fostering interdisciplinary collaboration, and focusing on integrated care approaches across home and institutional settings are crucial to improving quality of life and symptom control for people with advanced dementia.
Innovative and best models of palliative and EOL care - with focus on rural and remote communities.
Opinion in supportive & palliative careThe review aims to synthesize the most recent innovative models of palliative care being delivered in rural and remote locations.
Worldwide, as the ageing population grows, more people will require palliative care. However, equal availability of high-quality palliative care services remains a significant challenge, particularly in rural and remote communities. Innovative models of palliative care have been developed to address the projected need of people in rural and remote areas. Models that leverage the use of digital healthcare (such as telecare and Artificial Intelligence), the non-specialized palliative care workforce (such as GPs, pharmacists, and family carers), and community driven approaches have demonstrated success in achieving positive palliative care outcomes, such as reduced physical and emotional distress, and family carers feeling more supported.
There is a need to support people to remain within their rural and remote communities towards the end-of-life (EOL). While some models of care have been identified to help with this, there continues to be significant difficulties in access to health and social care in rural and remote areas. It is important we build on this research to understand more broadly the models of support for those living in remote and rural communities at the EOL.
Role of caregivers being trained in assisting in end of life care - Latin American perspective.
Opinion in supportive & palliative carePalliative care in Latin America is evolving, but training for informal caregivers remains underexplored. This review summarizes recent interventions to educate or train caregivers in end-of-life care.
The literature search identified three interventions published by 2023, two with reception evaluations, all with small sample sizes and no control groups. Needs of caregivers have been more frequently described and include training on aspects of the disease, nursing skills, how to handle patients´ and own emotions; help in navigating the complex healthcare systems in Latin America; help in conversations about the end of life and dying, still taboos in the region; help in finding additional caregivers or other types of support to make the caregiving role sustainable over time for the caregiver. Interventions mainly focused on emotional support and identifying additional caregivers without guilt; two included nursing skills training.
There are very few formal interventions described and evaluated to assist caregivers in end-of-life care in Latin America described in the literature. This illustrates the rather invisible but very important role of these important stakeholders in the care for patients. Multidimensional interventions should be developed and evaluated to support caregivers.
The Role of Digital Health Interventions in Supporting Family Caregivers for People With Dementia to Improve Quality of Life.
Opinion in supportive & palliative careDementia is a chronic progressive terminal condition. Most care is provided by family caregivers (including close friends); their wellbeing is a public health priority. Caregivers manage increasingly complex needs with disease progression, and declining cognitive and physical function. This can impact the well-being of caregivers, and meaningful support is essential. This review article aims to understand what the benefits and challenges of digital health interventions are and provide considerations for future development of digital health interventions for family caregivers for people with dementia, to improve quality of life.
Benefits include the valuable source of support from connective platforms; 24/7 accessibility; and opportunity for remote monitoring. However, this needs to balance with challenges, including the privacy of data concerns; and the digital divide driving inequalities in care provision for family caregivers with no access to internet devices.
Digital health interventions can positively impact the overall well-being of family caregivers for people with dementia. If challenges are addressed and digital health interventions are designed to meet priorities for family caregivers, this can help improve the quality of life for family caregivers of people with dementia.
Palliative Care Aspects of Acute Intermittent Porphyria - A Case Report.
Indian Journal of Palliative CareAcute intermitttent porphyria belongs to a rare group of diseases hallmarked by deficient biosynthesis of heme. It carries a significant symptom bu...
Neuropalliative Care Needs Checklist for Motor Neuron Disease and Parkinson's Disease: A Biopsychosocial Approach.
Indian Journal of Palliative CareNeurodegenerative disorders necessitate comprehensive palliative care due to their progressive and irreversible nature. Limited studies have explored the comprehensive assessment needs of this population. This present study is designed to develop a checklist for evaluating the palliative care needs of individuals with motor neuron disease (MND) and Parkinson's disease (PD).
The checklist was created through an extensive literature review and discussions with stakeholders in neuropalliative. Feedback from six field experts led to the finalisation of the checklist, which comprised 53 items addressing the unique biopsychosocial needs of MND and PD. Sixty patient-caregiver dyads receiving treatment in a tertiary referral care centre for neurology in south India completed the checklist.
People with MND had more identified needs with speech, swallowing, and communication, while people with PD reported needs in managing tremors, reduced movements, and subjective feelings of stiffness. People denying the severity of the illness was found to be a major psychosocial issue. The checklist addresses the dearth of specific tools for assessing palliative care needs in neurodegenerative disorders, particularly MND and PD. By incorporating disease-specific and generic items, the checklist offers a broad assessment of patients' multidimensional needs.
This study contributes to the area of neuropalliative care by developing the neuropalliative care needs checklist (NPCNC) as a valuable tool for assessing the needs of individuals with neurodegenerative diseases. Future research should focus on refining and validating the NPCNC with larger and more diverse groups, applicability in different contexts, and investigating its sensitivity to changes over time.
Communicating Care in Digital Social Spaces: Mixed-method Analysis of Influence of Social Media on Palliative Care.
Indian Journal of Palliative CareThe paper is based on mixed-methods analysis, including qualitative (thematic analysis) and quantitative (word frequency and trends analysis), to t...