Ketamine has been used parenterally for pain unresponsive to opioids, including neuropathic pain, and has also been used as an alternative analgesic agent after surgery. Although oral administration of ketamine has been used for some time as a single…
The subject of communication between palliative care physicians and their patients regarding their diagnosis and prognosis has not been extensively researched. The purpose of this survey was to compare the attitudes and beliefs of palliative care…
Death or disability is much more common in multiple births than single children, especially in the perinatal period. Parents face particular problems in that their loss may be underestimated; their grieving may be impeded by the confusion between the…
Background: The question ‘would you be surprised if this patient died in the next 12-months’ is widely used for identifying adult patients in the last year of life. However, this has not yet been studied in children.
BACKGROUND: Children with medical complexity need complex assistance, that considerably affects caregivers' quality of life. They often need multiple medications, with a consequent relevant risk of errors or poor compliance. Galenic (or compounded)…
Background: Giving care to a patient at the end of life can be a challenging and confronting experience. The responsibilities of care giving may include executing complex physical and mental tasks, financial planning, patient care decision making,…
Background: Spiritual support should be offered to all patients and their families regardless of their affiliated status with an organized religion. Aim: To understand nonreligious theistic parents’ spirituality and to explore how parents discuss…
BACKGROUND: Advance care planning for children with palliative care needs is an emotionally, legally and complex aspect of care, advocated as beneficial to children, families and health professionals. Evidence suggests healthcare professionals often…
This study reports the process and results of a psychometric evaluation of a clinical audit tool, the Support Team Assessment Schedule (STAS), used to measure outcomes of palliative care. The STAS was developed in London, UK to audit community…
BACKGROUND: Exploring children's experiences of a life-threatening or life-limiting diagnosis is essential in offering appropriate care for them. There have been few studies examining these and they are often from the parent's perspective. Even if…
This study was carried out in eight palliative care services in four Canadian cities. A revised version of The McGill Quality of Life Questionnaire (MQOL) is compared to a single-item scale measuring overall quality of life (SIS), and the…
This is the first report on the McGill Quality of Life Questionnaire (MQOL), a questionnaire relevant to all phases of the disease trajectory for people with a life-threatening illness. This questionnaire differs from most others in three ways: the…
Background/aims: Patient and public involvement (PPI) is essential to design and deliver meaningful research, but evidence on how to involve children and young people (CYP) in palliative care studies is limited. We aim to develop strategies to engage…
Background: Palliative care is an important component of health care in pandemics, contributing to symptom control, psychological support, and supporting triage and complex decision making. Aim(s): To examine preparedness for, and impact of, the…
BACKGROUND: Adolescents and young adults undergoing heart transplantation experience risks of morbidity and mortality both pre- and post-transplant. To improve end-of-life care for this population, it is necessary to understand their medical and…
Cachexia is a syndrome and therefore does not have a specific definition. Patients are characterized by the presence of anorexia, early satiety, weight loss, weakness, anaemia and oedema. These features occur to a variable extent in different…
Background: Advance care discussions (ACD) between health care professionals (HCPs) and parents of children with a life-limiting disease are a core element to successful pediatric advance care planning (pACP). Yet, they are considered as challenging…
The children's palliative care sector requires a specific set of knowledge and skills in its workforce. Maintaining high levels of competence and leadership can be challenging if staff move out of the sector, retire or several key people leave.…
Background: Moral distress and burnout related to end-of-life decisions in neonates is common in neonatologists and nurses working in neonatal intensive care units. Attention to their emotional burden and psychological support in research is lacking.…
Background: There has been a breadth of research on the grief experience of parents following the death of a child. However, the role and impact of hospital-based bereaved services remain unclear. Aim: To identify services offered to bereaved…
Background/aims: Palliative care for children should be provided wherever the child is who needs care, whether that be at home, at school, in a clinic, in a hospital, in a hospice, as well as including in humanitarian settings. It should be provided…
The purpose of this study was to assess the receptiveness of parents to information given about their child's life threatening illness. Three months after the child's diagnosis, an independent interviewer, using a structured questionnaire,…
Spirituality and spiritual care are gaining increasing attention but their potential contribution to palliative care remains unclear. The aim of this study was to synthesize qualitative literature on spirituality and spiritual care at the end of life…
BACKGROUND: The importance of caring for children with complex and serious conditions means that paediatric palliative care must continue during pandemics. The recent pandemic of Coronavirus Disease 2019 (COVID-19) provides a natural experiment to…
Background: Spirituality refers to the dynamic dimension of human life that relates to the way that persons experience meaning, purpose, and transcendence. The complex task of parenting a child with a life-limiting condition may raise existential…
BACKGROUND: Respiratory depression is the most feared opioid-related side-effect yet research on the topic is sparse. We evaluated changes in respiratory parameters during parenteral opioid titration for cancer pain to determine if opioid titration…
Many ethical issues arise concerning the care of critically ill and dying patients during the coronavirus disease 2019 (COVID-19) pandemic. In this issue's Ethics Rounds, we present 2 cases that highlight 2 different sorts of ethical issues. One is…
The issue of symptom management at the end of life and the need to use sedation has become a controversial topic. This debate has been intensified by the suggestion that sedation may correlate with 'slow euthanasia'. The need to have more facts and…
Recent changes to out-of-hours primary care in the UK have generated concerns about care for palliative care patients. The aim of this study was to identify key challenges and improvements to out-of-hours palliative care in a mixed urban and rural…
BACKGROUND: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and…
The demands of caring for a child with a life-limiting condition can have a profound impact on parents' health and wellbeing. Currently, there is no standard procedure for identifying and addressing the support needs of these parents. Aim: To assess…
BACKGROUND: The number of children with a life-limiting condition is increasing. The mothers of these children commonly provide extensive care at home for their child and are at a higher risk of poor health than other mothers. The impact of this is…
Background:A prenatal diagnosis of a life-limiting disease raises complex ethical, emotional, and medical issues. Studies suggest that 40%?85% of parents decide to continue the pregnancy if given the option of Perinatal Palliative Care. However,…
Background/aim: Pediatric Palliative Care (PPC) in hospitals mainly focuses on the parents and siblings of children suffering from a life limiting disease. However, most grandparents are also highly involved in the caring of the child and require…
