child; human; ethics; preschool child; terminal care; United Kingdom; medical ethics; treatment outcome; infant; conflict; treatment withdrawal; child health care; experimental therapy
Description
Recent high-profile cases have highlighted the difficulties that professionals caring for terminally ill or technology dependent children face. I am a paediatrician. I see children with severe problems, often chronic and frequently without a cure, and I try as far as possible to help them and their families. Occasionally there is science and evidence behind the decisions we make, but not always. Medicine does have its black and white disciplines—it is either cancer or it isn’t; or you either need to have an operation or you don’t. But paediatrics is often a discipline of uncertainty dealing with many shades of grey. Paediatricians learn to live with uncertainty and similarly have to support parents and young people to accept this uncertainty. Sometimes we have to wait for nature to reveal itself or for the future to unfold as it should. Herein lies the art of paediatrics: the ability to watch and wait, intervening in a timely fashion when required to do so and recognising the sad eventuality of having to let go of life at times. This is our craft: to do what is in the child’s best interests and use therapies that will help with life’s quality but not unnecessarily prolong inevitable death. However there are competing interests in this delicate balance in doing what is right for the child. Juggling our way along the best route required in reaching the best outcome for the child makes my opening paragraphs easier said than done. First there is medical technology, what we can do, with advances developing at a breakneck speed. Home ventilation, home total parenteral nutrition, home dialysis and transplants are all now commonplace and can sustain life in children in whom death would otherwise have been inevitable. Gene editing and small molecule therapies have the potential to change the …
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
hospice; Child; Palliative Care; death; Life Change Events; artificial ventilation; personal experience; palliative therapy; major clinical study; retrospective study; childhood cancer; hospital patient; Only Child; cohort analysis; cost effectiveness analysis; human; article; child; female; male; controlled study; quality of life; hospitalization; resuscitation; intensive care unit; invasive procedure; experimental therapy; cancer susceptibility; cancer center; data extraction; phase 1 clinical trial
Description
Background: The field of pediatric palliative oncology is newly emerging. Little is known about the characteristics and illness experiences of children with cancer who receive palliative care (PC). Methods: A retrospective cohort study of 321 pediatric oncology patients enrolled in PC who died between 2011 and 2015 was conducted at a large academic pediatric cancer center using a comprehensive standardized data extraction tool. Results: The majority of pediatric palliative oncology patients received experimental therapy (79.4%), with 40.5% enrolled on a phase I trial. Approximately one-third received cancer-directed therapy during the last month of life (35.5%). More than half had at least one intensive care unit hospitalization (51.4%), with this subset demonstrating considerable exposure to mechanical ventilation (44.8%), invasive procedures (20%), and cardiopulmonary resuscitation (12.1%). Of the 122 patients who died in the hospital, 44.3% died in the intensive care unit. Patients with late PC involvement occurring less than 30 days before death had higher odds of dying in the intensive care unit over the home/hospice setting compared to those with earlier PC involvement (OR: 4.7, 95% CI: 2.47-8.97, P < 0.0001). Conclusions: Children with cancer who receive PC experience a high burden of intensive treatments and often die in inpatient intensive care settings. Delayed PC involvement is associated with increased odds of dying in the intensive care unit. Prospective investigation of early PC involvement in children with high-risk cancer is needed to better understand potential impacts on cost-effectiveness, quality of life, and delivery of goal concordant care.
Talking to families when death becomes a likely outcome-a pilot simulation programme to improve end of life conversations during and around PICU admission
Aims & Objectives: End of life conversations form the basis of many complex communication scenarios in paediatric intensive care (PICU). These conversations are sometimes initiated late in the disease process. Anecdotal evidence is that many clinicians shy away from the subject matter for a wide variety of reasons. A multidisciplinary, one-day pilot simulation course to address this unmet need was designed by the PICU and palliative care teams for members of the multidisciplinary team (MDT) who admit to our PICU. Methods The course was oversubscribed and candidates were evenly drawn from medical and senior nursing roles; specialties represented included PICU, immunology, bone marrow transplant, oncology, pulmonary hypertension and craniofacial surgery. A range of clinically complex and personally challenging clinical scenarios were developed for use with experienced educational actors. These included: Previously fit and well child post cerebrovascular accident with a deeply religious family Child with end stage cancer whose parents had the option of an experimental treatment Child with advanced pulmonary hypertension whose parents are angry about failure of treatment Child with incurable malignancy with parents reluctant to ask for withdrawal of life sustaining treatment but who secretly wish it to be offered A demonstration scenario was run by the faculty for all candidates and four simulations were run in groups of four. Simulation safety and debrief tools were utilised throughout Results Feedback from the day was universally positive. Conclusions There is significant need for this course. Plans are now under way to extend it to a wider cohort of the PICU MDT and run it on a regular basis.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Experimental Therapy; Hospitalized Child; Legislation And Jurisprudence; Human; Infant; Long Term Care; Newborn; Terminal Care; Treatment Outcome; United Kingdom
Description
Richard Griffith, Senior Lecturer in Health Law at Swansea University, reviews how the courts assist in settling disputes over the care of seriously ill babies and describes the test used to inform decisions about their treatment.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).