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The April digest offers valuable insights for both palliative care leaders and members of multidisciplinary teams. Psychologists will find it essential to learn how end-of-life planning impacts the mental health of a patient’s family. Leaders can explore the UK’s key palliative care priorities for 2025 and see how art can shape public perceptions of death. Interdisciplinary guidelines on managing dystonia in children, along with an article on caring for patients with substance use disorders, are essential reading for medical professionals working in these areas. Learn more in this month’s selection.
If you would like to continue any of the topics below in the form of a discussion or webinar, please, feel free to contact us at info@paced.org.uk.
How Advance Care Planning Affects the Mental Health of Bereaved Families: A Systematic Review
Patients nearing the end of life often lose the ability to express their wishes and preferences. In such cases, the burden of decision-making falls on their families, which can lead to significant psychological strain. This systematic review, published in Cureus, examines the impact of Advance Care Planning (ACP) on the mental health of bereaved relatives. It includes studies involving patients with chronic and progressive illnesses such as dementia, cancer, COPD, and heart failure. The findings show that ACP helps reduce anxiety, depression, and stress among bereaved family members, particularly when conducted early and with emotional sensitivity. The review offers valuable insights into how ACP can alleviate emotional burdens on families.
Patients nearing the end of life often lose the ability to express their wishes and preferences. In such cases, the burden of decision-making falls on their families, which can lead to significant psychological strain. This systematic review, published in Cureus, examines the impact of Advance Care Planning (ACP) on the mental health of bereaved relatives. It includes studies involving patients with chronic and progressive illnesses such as dementia, cancer, COPD, and heart failure. The findings show that ACP helps reduce anxiety, depression, and stress among bereaved family members, particularly when conducted early and with emotional sensitivity. The review offers valuable insights into how ACP can alleviate emotional burdens on families.
Five Palliative Care Priorities for 2025
Researchers at the University of Birmingham have outlined five key priorities for 2025 aimed at ensuring fair, ethical, and practical palliative care and assisted dying practices in the UK. This article provides insight into how one of the world’s most advanced palliative care systems is addressing contemporary challenges. For professionals in other regions, it presents an opportunity to anticipate future trends and adapt reform strategies. Read more about the areas the UK’s palliative care leaders will focus on in the coming year.
Researchers at the University of Birmingham have outlined five key priorities for 2025 aimed at ensuring fair, ethical, and practical palliative care and assisted dying practices in the UK. This article provides insight into how one of the world’s most advanced palliative care systems is addressing contemporary challenges. For professionals in other regions, it presents an opportunity to anticipate future trends and adapt reform strategies. Read more about the areas the UK’s palliative care leaders will focus on in the coming year.
International Consensus Guidelines on Dystonia in Paediatric Palliative Care
For the first time, an international team of experts has developed interdisciplinary guidelines for managing dystonia in children receiving palliative care. The article highlights dystonia’s significant contribution to the overall symptom burden and the reduced quality of life for both patients and their families. The guidelines emphasise the need to distinguish between acute and chronic medication strategies and to identify key clinical indicators of worsening symptoms, such as disrupted sleep, vegetative signs of pain, and thermoregulatory changes. Key recommendations also include:
These recommendations will benefit paediatric palliative care providers who work with neurologically complex cases.
For the first time, an international team of experts has developed interdisciplinary guidelines for managing dystonia in children receiving palliative care. The article highlights dystonia’s significant contribution to the overall symptom burden and the reduced quality of life for both patients and their families. The guidelines emphasise the need to distinguish between acute and chronic medication strategies and to identify key clinical indicators of worsening symptoms, such as disrupted sleep, vegetative signs of pain, and thermoregulatory changes. Key recommendations also include:
- Addressing the lack of evidence for physical and rehabilitative therapies.
- Providing specialised training for physiotherapists and occupational therapists.
- Integrating psychological and emotional support as critical elements of care.
These recommendations will benefit paediatric palliative care providers who work with neurologically complex cases.
Art as Advocacy: How an Exhibition on End-of-Life Poverty Influenced Public and Political Dialogue
In summer 2023, the UK hosted "The Cost of Dying," a powerful exhibition that captured the lived experiences of people facing poverty at the end of life. This article explores the public, professional, and political responses to the exhibit and delves into broader questions: How can art and visual storytelling confront social injustice in the face of death? How do such projects reduce stigma and silence around death? And how can they bridge conversations between healthcare, art, and society? The authors argue that artistic formats can not only represent injustice but also educate the public and spark policy reconsideration in the field of palliative care.
In summer 2023, the UK hosted "The Cost of Dying," a powerful exhibition that captured the lived experiences of people facing poverty at the end of life. This article explores the public, professional, and political responses to the exhibit and delves into broader questions: How can art and visual storytelling confront social injustice in the face of death? How do such projects reduce stigma and silence around death? And how can they bridge conversations between healthcare, art, and society? The authors argue that artistic formats can not only represent injustice but also educate the public and spark policy reconsideration in the field of palliative care.
Improving Palliative Care for People Who Use Alcohol and Other Drugs
Providing palliative care for people with substance use disorders presents unique challenges for healthcare teams. These challenges range from pain and anxiety management to combating stigma and rebuilding trust with patients whom healthcare systems have marginalised throughout their lives. This article offers two in-depth clinical cases and outlines key risks associated with caring for this patient population. It also provides practical strategies to mitigate complications and foster compassionate, equitable care. The authors stress: substance use must not deprive anyone of a dignified end-of-life experience.
Providing palliative care for people with substance use disorders presents unique challenges for healthcare teams. These challenges range from pain and anxiety management to combating stigma and rebuilding trust with patients whom healthcare systems have marginalised throughout their lives. This article offers two in-depth clinical cases and outlines key risks associated with caring for this patient population. It also provides practical strategies to mitigate complications and foster compassionate, equitable care. The authors stress: substance use must not deprive anyone of a dignified end-of-life experience.