Podcasts about paediatric palliative care

In this episode, Dr Tim Warlow, a consultant in Paediatric Palliative Care, explores the complexities of caring for children with life-limiting conditions in the emergency department (ED). The discussion highlights the increasing prevalence of paediatric life-limiting conditions and the growing medical complexity of these cases, which pose significant challenges for ED staff. The episode begins by clarifying what paediatric palliative care truly involves. Contrary to common misconceptions, palliative care is not about withdrawing care but rather enhancing the quality of life for children from the point of diagnosis, whether the condition is present from birth or develops as the child deteriorates. This proactive approach often involves increasing the level of care and support as the child's needs evolve. As the number of children with life-limiting conditions continues to rise, EDs are encountering more medically complex cases, including children who are technology-dependent and require high levels of care at home. These challenges are compounded by the evolving expectations of parents, who are often better informed and more involved in their child's care decisions. Post-COVID, community services have struggled to recover, particularly in nursing support, making the role of the ED even more critical. The episode provides practical tips for ED professionals to better manage these cases. Key strategies include: Recognising Life-Limiting Conditions: With over 400 recognized life-limiting conditions and many more undiagnosed, it's crucial to assess whether a child might have palliative care needs. Listening to Families: Families often have an intimate understanding of their child's unique medical baseline. Listening deeply to their insights, even when they seem unusual, is essential for providing appropriate care. Building Rapid Rapport: Quickly establishing a connection with the family is vital, as these children can deteriorate rapidly. Acknowledging the child's presence, summarizing the situation, and validating the family's experience can help build trust. Understanding the Child Beyond Their Illness: Families worry that healthcare professionals only see their child when they are unwell. Taking the time to learn about the child's life outside of the hospital can lead to better care decisions. Reading the Advanced Care Plan: If available, review the child's advanced care plan before discussing the case with the family. This ensures that the family doesn't have to recount their entire journey and that care decisions are based on the most current information. The episode also addresses the importance of being aware of unconscious prejudice. Healthcare professionals must ensure that decisions are based on the child's specific needs rather than assumptions about their quality of life due to their disability. In conclusion, the episode emphasizes that while caring for children with life-limiting conditions in the ED is challenging, it is also deeply rewarding. The key to providing excellent care lies not just in medical interventions but in being present, listening, and supporting the family through difficult times. Whether things go as planned or not, your presence and compassion are what families remember most. This episode is a must-listen for anyone involved in pediatric care, offering valuable insights into the critical role of the ED in supporting children with life-limiting conditions and their families. There is more detail on the blogpost here. 

Hearing that your child has a life-threatening or life-limiting disease is something no parent wants to hear. But in these cases, paediatric palliative care can play a vital role in ensuring that the child's quality of life - and ability to simply be a child - is preserved as much as possible, while supporting the child's parents as well. Joining us to share more about the role of paediatric palliative care is Dr Avinder Kaur; she's a paediatrician currently training in paediatric palliative medicine, and also a committee member with the Malaysian Association of Paediatric Palliative Care. To support MAPPAC's work and their fundraiser, you can visit their website, Facebook page or contact them at 018-400 5988. Image credit: Shutterstock

We talk to pediatric palliative care physician Dr Jared Rubenstein all about how we deal with death as physicians, how we can exercise more compassion and self-compassion in difficult moments, and what we can do to become better communicators.    Topics we discuss:   Communicating the difficult parts of life and medicine effectively and prompting important discussions Jared's experience of personal tragedies and illness and the effect this had on his work Mental health awareness campaigns and advocacy in healthcare The importance of asking colleagues about their well-being genuinely and being prepared to offer support. How to communicate the realities of what is happening to someone who is sick The value of processing clinical cases, especially challenging ones, with colleagues and how this can be done effectively Jared's project called Discrimination 911, which focuses on addressing racism and discrimination, using communication skills that are widely practiced in palliative care specialties Personal examples of staying healthy, protecting our mental health and continuing to grow The need for inclusive and diverse work cultures in healthcare Resources mentioned in this episode:   Jared's website: https://www.jaredrubensteinmd.com/   Find Jared on Twitter, Instagram and YouTube at @drjrubenstein   Learn more about Discrimination 911 response framework   Wellness wonder: The Emotional PPE Project.   Need help? If you live in the US, you can search the therapy directory by state.    Want to help? You can donate here.   Other resources:   Samaritans UK   Samaritans USA   Doctors in Distress   You Okay, Doc?   NHS Practitioner Health   See more episodes: thefullywelldocpod.podbean.com   Email us: fullywelldocpod@gmail.com   Find us on social media:   Instagram @fullywelldocpod   Twitter @fullywelldocpod   Looking for coaching? Reach out for a free call with one of us:   Emily - www.fullybecoaching.com or Natasha - www.thewelldoctor.org   You can also connect with Emily or Natasha on social media:   Emily is on Instagram and LinkedIn   Natasha is on Instagram, TikTok and LinkedIn  

Pippa catches up with Michelle Meiring in our Health and Wellness feature on Paediatric Palliative CareSee omnystudio.com/listener for privacy information.

In breaking news this evening paediatric palliative care services are now in place for South East with immediate effect. Deputy Michael Lowry confirmed today that after a long campaign families will no longer have to fight for services during the most distressing days of their lives Today's decision is huge for those in need of this services Sheila Naughton asked Deputy Lowry for full details :

Robert is an alcoholic and is unable to find the medication he needs to help stop him from drinking. Orlaigh is the aunt of 4 year old Fiadh who has an aggressive cancer. Fiadh's family want palliative care for Fiadh. Geoff Fitzpatrick and Des McHale discuss the wonder of geometry in nature.

Dr. Emily Chang is a paediatric palliative care specialist at Starship Children's Hospital in Auckland. She whakapapas back to Taiwan where her parents were born and raised. They emigrated to Aotearoa over 40 years ago and raised their family, now calling Aotearoa their home.In this episode, we discuss her journey into paediatric palliative care, how to get into training and what it looks like, their day-to-day in palliative care and the conditions they see that differ to adult medicine. We also discuss her approach to palliative care conversations, the challenges around funding and hospice, what euthanasia means for paediatric palliative care, and her signs of compassion fatigue. Support the showAs always, if you have any feedback or queries, or if you would like to get in touch with the speaker, feel free to get in touch at doctornos@pm.me. Audio credit:Bliss by Luke Bergs https://soundcloud.com/bergscloudCreative Commons — Attribution-ShareAlike 3.0 Unported — CC BY-SA 3.0Free Download / Stream: https://bit.ly/33DJFs9Music promoted by Audio Library https://youtu.be/e9aXhBQDT9Y

Pediatric pain management is fraught with reasons that make it feel like we are operating blindfolded. Many treatments are used without clear indications or evidence specifically in this population.  What if you had a way to study what you do in pediatric pain management, while you do it, would you embrace it?   In this episode, Dr. Drake Ross, a specialty pediatrician at Starship Children's Health in Auckland, New Zealand with training in pediatric pain and palliative care, shares with us the features, goals and outcomes of their Rapid pharmacovigilance program, a multi institutional collaborative clinical research endeavor. This program provides real-time evaluation of net clinical benefit of what we do in our day to  day clinical practice, while  we do it!   Takeaways In This Episode   What got Dr. Drake's to transition from general pediatrics into palliative care and pediatric pain medicine How he get interested in pharmacovigilance and how he initiated that for pediatric pain medicine as the RAPID multi-institutional, international endeavor What Rapid is? Findings of their research thus far and what's on the horizon How you can participate in this research endeavor while carrying out your daily clinical work and the benefits it offers as collaborators How they determine their protocol numbers and demographics What Dr. Drake hopes for Rapid to achieve  Unique benefits of this collaborative research compared with other databases  based research (Hint: the ability of foresight and hindsight simultaneously!) The biggest takeaways and his message to  the audience   Links   Ross Drake, MB ChB, FRACP, FAChPM, FFPMANZCA Rapid Program Get involved with Rapid program Alternate Contact Attend the International Symposium on Pediatric Pain 2022 Clinicians' Pain Evaluation Toolkit Proactive Pain Solutions   About the Guest:    Ross Drake, MB ChB, FRACP, FAChPM, FFPMANZCA   Dr.  Drake is a Pediatrician who specializes in Pain Medicine and Palliative Care for children having gained fellowships in Paediatrics, Palliative Medicine and Pain Medicine after he completed specialist training at Great Ormond Street Hospital in London and The Children's Hospital at Westmead in Sydney.  Ross is Clinical Lead of the Paediatric Palliative Care and Complex Pain Services at Starship Children's Hospital; both being the only specialist services of their type in New Zealand. Amongst his clinical duties he strives to improve the recognition and support of children/tamariki & young adults/rangitahi and their families/whānau requiring palliative care and the management of chronic pain. He remains very involved in developing a national approach to both disciplines and works to improve resourcing to enable equitable access and service delivery for all New Zealand children in need. Dr Drake also regularly presents and teaches on various topics in children's pain medicine and palliative care. More recently, he has been involved with establishing an international pharmacovigilance research collaborative (The RAPID Program) looking at the effectiveness and adverse effects of medications and other interventions commonly used in palliative care and pain management.   

This episode features Dr Katie Ekberg (School of Early Childhood and Inclusive Education, Queensland University of Technology, Australia) and Dr Anthony Herbert (School of Early Childhood and Inclusive Education, Queensland University of Technology, Australia). The urgency of caring for children with complex and serious conditions ensures that care must continue during the Coronavirus Disease 2019 (COVID-19) pandemic. As yet, guidelines for communication with families about the COVID-19 pandemic are not based on direct observational evidence of actual communication practices within palliative care during the pandemic. The current study provides evidence of the pervasive relevance of communication about the COVID-19 pandemic during clinician-family paediatric palliative care consultations.There was a pervasive relevance of serious and non-serious talk about the pandemic. Topics typical of standard paediatric palliative care consultations often led to discussion of the pandemic, including medical discussions and psychosocial and lifestyle discussions.Clinicians (55%) and parents (45%) initiated talk about the pandemic. Clinicians should expect and be prepared for the pervasiveness of talk about the COVID-19 pandemic within standard paediatric palliative care consultations, so that they can be flexible in how they respond to families. Future guidelines should consider the pervasive and varied ways that conversations about a pandemic are raised within and across routine consultations.

Palliative care is bittersweet, we are grateful to have it, but accepting this requires us to face the frail nature of life. Palliative care extends beyond removing pain and creating comfort, it's about making sure the patient doesn't count days, or forget their lives matter, for young and old. Ella Stratton is the Director of HAS Foundation, an organisation setup to help families with children with life limiting conditions. Ella began this foundation after her son Hunter Alfred Stratton, passed away. Since losing her child, Ella has found the strength to tell others of her journey so they can learn from her experience, and she is also working to serve and nurture others by creating care packages through her foundation. In today's episode of Be The Drop, Ella shares her emotional and moving story of her family's palliative care experience. Ella explains how Hunter and the strength he showed in life, motivates her to create programs and services to help others who also find themselves in this heartbreaking situation. ----- This episode talks openly about death which some listeners may find upsetting. If you or someone close to you needs support navigating palliative care, contact the HAS Foundation or visit Paediatric Palliative Care for an Australia wide list of support services. ----- The Be The Drop podcast is brought to you by Narrative Marketing, the Brand Storytelling Superheroes! We release new content each week! SUBSCRIBE to the blog here SUBSCRIBE to Be The Drop podcast in iTunes here SUBSCRIBE to Be The Drop in Spotify here SUBSCRIBE on YouTube here for the full interview video, behind the scenes, bloopers & more. CONNECT with us on Facebook, follow @be_the_drop on Instagram or Twitter. CONTACT US podcast@narrativemarketing.com.au

During our fifth podcast, you can hear All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care Co-Chair Catherine McKinnell MP hear evidence from: Dr Renee McCulloch (Chair, College Specialty Advisory Committee - Paediatric Palliative Medicine, Royal College of Paediatrics and Child Health). Dr McCulloch is also a Consultant in Paediatric Palliative Medicine and Guardian of Safe Working at The Louis Dundas Centre, Great Ormond Street Hospital for Children NHS Foundation Trust. Dr Simon Clark (Officer for Workforce Planning, Royal College of Paediatrics and Child Health). Dr Emily Harrop (Chair, NICE Clinical Guideline Development Group). Dr Harrop is also Consultant in Paediatric Palliative Care at Helen and Douglas House Hospices This evidence session, recorded on 7 March 2018, is one of several which the APPG held as part of its inquiry. If you would like to know more about Together for Short Lives, or how you can support our vital work, please visit our website atwww.togetherforshortlives.org.uk

During our fifth podcast, you can hear All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care Co-Chair Catherine McKinnell MP hear evidence from: Dr Renee McCulloch (Chair, College Specialty Advisory Committee - Paediatric Palliative Medicine, Royal College of Paediatrics and Child Health). Dr McCulloch is also a Consultant in Paediatric Palliative Medicine and Guardian of Safe Working at The Louis Dundas Centre, Great Ormond Street Hospital for Children NHS Foundation Trust. Dr Simon Clark (Officer for Workforce Planning, Royal College of Paediatrics and Child Health). Dr Emily Harrop (Chair, NICE Clinical Guideline Development Group). Dr Harrop is also Consultant in Paediatric Palliative Care at Helen and Douglas House Hospices This evidence session, recorded on 7 March 2018, is one of several which the APPG held as part of its inquiry. If you would like to know more about Together for Short Lives, or how you can support our vital work, please visit our website atwww.togetherforshortlives.org.uk

This podcast was produced by PedsCases and the Canadian Paediatric Society (CPS), discussing the new CPS position statement titled: “Medical Assistance in Dying: A Paediatric Perspective.” This podcast presents a paediatric perspective to medical assistance in dying (MAID). This podcast was developed by Dr. Chris Novak, a second-year Paediatric resident at the Stollery Children’s Hospital at the University of Alberta in Edmonton, and Dr. Dawn Davies, a Paediatric Palliative Care specialist and Associate Professor at the University of Alberta.

In this episode Professor Myra Bluebond-Langner (Louis Dundas Centre for Children’s Palliative Care) discusses the challenges faced by researchers aiming to recruit children and young people (CYP) with life-limiting conditions (LLCs) or life-threatening illnesses (LTIs) to research studies. For the full paper: http://pmj.sagepub.com/content/30/10/979

Prof Hilal al Sayer talks to ecancer at the 2012 National Cancer Institute Directors Meeting in Lyon about paediatric palliative care and the opening of the Bayt Abdullah Children’s Hospital in Kuwait. Until recently there has been little or no palliative treatment or holistic care for children or adult patients in Kuwait. Prof al Sayer began work on creating the Bayt Abdullah Children’s Hospital after a personal experience with a patient and their family. Now the hospital, which opened this year, is one of the largest in the area for palliative care. Treating patients both at the hospital and in their own homes, Prof al Sayer advises doctors on the importance of how to discuss end of life treatment with the family and the need to do so.