Paediatric Palliative Medicine Research Articles

Perinatal Palliative Care and Ethical Issues

Perinatal palliative care is a specialty that covers the fields of obstetrics, fetal medicine, pediatric palliative medicine and neonatal medicine. In this care, healthcare professionals offer an individualized care plan based on the needs of the fetus/newborn and family members in a multidimensional way with an interdisciplinary team approach. Unlike adult, neonatal and pediatric palliative care, the patient is not only a single person but a mother-fetus couple in perinatal palliative care; therefore this care type is based on family-centered care philosophy. Due to lack of information about preferences or requests of the fetus, families are expected to make the best medical decision for their baby considering their wishes and values. In this respect, it is important for the team members to inform the families during this process and for multidisciplinary healthcare professionals to support them for making the most appropriate decision. This review article examined the importance of perinatal palliative care, ethical issues, and the roles and responsibilities of the nurse.

Healthcare Professionals' Attitudes towards and Knowledge and Understanding of Paediatric Palliative Medicine (PPM) and Its Meaning within the Paediatric Intensive Care Unit (PICU): A Summative Content Analysis in a Tertiary Children's Hospital in Scotland-"An In Vitro Study".

Background: Paediatric palliative medicine (PPM) is a holistic approach to care for children and their families. Services are growing and developing worldwide but significant disparity in service provision remains. The Paediatric Supportive and Palliative Care Team (PSPCT) at the Royal Hospital for Children in Glasgow was established in 2019, but there is still no clear integrated role within the paediatric intensive care unit (PICU) at present. Through analysing the attitudes, meaning, knowledge and understanding of PPM in the PICU environment, we hoped to explore the experiences of those providing paediatric palliative care and to identify any barriers to or facilitators of integrated working to gain a better understanding of providing this care. Methods: This qualitative study used a survey composed of five open-ended and five closed questions. Sixteen out of a possible thirty-two responses (50%) were accrued from PICU healthcare professionals, including consultants (n = 19), advanced nurse practitioners (n = 4) and band-seven nurses (n = 9). The data were comprehensively studied and analysed by two coders using summative content analysis with assistance from data management software. Codes were further developed to form categories and subcategories. Results: Two categories were found: (1) the role of palliative care and (2) experiences of providing palliative care. A total of five subcategories were found, demonstrating that the PSPCT can enhance care in PICU through collaborative working. Barriers identified included staffing, funding and stigma around palliative care. Conclusions: This study shows that PICU professionals have a good understanding of the concepts of PPM and view it as an essential part of PICU work. Barriers related to resources and misperceptions of palliative care can be overcome through improved education, funding and staff retention, but this would require buy-in from policymakers. The perspective from our relatively small team increases generalizability to growing teams across the country.

Evaluating a Pediatric Palliative Care Elective Rotation Through Prompted Reflective Writing and Aligning With Competencies.

Background: Hospice and palliative medicine is important in the education of pediatric residents. Little is known about if and how residents' learnings during a pediatric palliative care elective fulfill core competencies and Pediatrics subcompetencies as set forth by the Accreditation Council for Graduate Medical Education (ACGME) and published subspecialty competencies for residents in pediatric hospice and palliative medicine (pHPM). Objectives: To evaluate what residents are learning on a four-week pediatric palliative care elective rotation at a single institution and how these learnings fulfill ACGME and pHPM competencies. Setting/Subjects: Prompted, written reflections were collected from residents completing a pediatric palliative care rotation at a large, urban academic center in the United States between academic years 2016-2017 and 2020-2021. Measurements: A qualitative, inductive reasoning approach was used to analyze reflections for emergent themes and codes. A deductive approach was used to map resulting codes to ACGME core competencies, Pediatric subcompetencies, and pHPM competencies. Results: Twenty-five resident reflections were collected. Inductive analysis revealed three primary themes and 102 codes. These codes were mapped to all six ACGME core competencies and mapped to most Pediatric subcompetencies with the exception of performing a physical examination, organizing and prioritizing patients, diagnostic evaluation, and community and population health. Codes mapped to most pHPM competencies with the exception of two symptom-based competencies, malignant bowel obstruction and severe fatigue. Conclusions: Residents' written reflections following a pediatric palliative care elective rotation demonstrated robust learnings that fulfill many core, specialty, and subspecialty competencies, particularly those that relate to patient- and family-centered care, communication, professionalism, and systems-based practice.

Pediatric palliative medicine in Brazil: an ethical reflection of medical practice

Pediatric palliative medicine in Brazil: an ethical reflection of medical practice

Pediatric Home-Based Hospice and Palliative Medicine Provider Home Visits: A Multisite Study.

Background: Pediatric home-based palliative care and/or hospice provider (Physician, Advanced Practice Nurse, or Physician Assistant) home visits are an underexplored subject in the literature with little available descriptive data and limited evidence guiding how best to utilize them. Objectives: Describe the population receiving hospice and palliative medicine (HPM) provider home visits and characterize visit themes. Design: Retrospective chart review of electronic medical record (EMR) data Setting/Subjects: A total of 226 individuals 1 month to 21 years of age, who received an HPM provider home visit from January 1, 2013, to December 31, 2018; two large quaternary medical centers in the Midwest. Measurements: Demographic data, content, and details from home visit abstracted from the EMR. Results: The three most common diagnostic groups receiving HPM provider home visits were neurological (42%), congenital chromosomal (26%), and prematurity-related (14%) conditions. Goals of care (GOC) were discussed at 29% of visits; most commonly, goals related to code status (42%), technology dependence (20%), and nutrition/hydration (15%). A change in GOC occurred in 44% of visits. Forms of anticipatory guidance addressed were nutrition (68%), side effects of treatment (63%), pain assessment (59%), decline/death (32%), and allow natural death/do not resuscitate/advance directives (26%). Conclusion: HPM provider visits are diverse in content and changes in plan of care with potential for proactive identification of GOC and provision of important anticipatory guidance around patient decline and end of life. Further research is indicated to establish which populations benefit most and how to leverage this scarce resource strategically.

Dr. David Lysecki

Pediatric palliative care is often an overlooked field of medicine. As terminally ill children make up a small proportion of patients in Canada, a less robust network of resources is available to deliver end-of-life care for these patients. To gain a better insight into this field, we sat down with Dr. David Lysecki, a pediatric palliative care physician at McMaster Children’s Hospital. He is also the founder and head of the Quality of Life & Advanced Care program at McMaster Children’s Hospital and the Division of Pediatric Palliative Medicine in the McMaster University Department of Pediatrics.

A National Survey to Guide Pediatric Curricula for Hospice and Palliative Medicine Fellows.

The pediatric hospice and palliative medicine (pHPM) workforce caring for an increasing population of medically fragile children is small due to a lack of both pHPM training opportunities and pediatric palliative care (PPC) community resources.1–10 Of the 159 HPM fellowship programs in the U.S., only 13 are dedicated pHPM programs with 17 training spots annually.11,12 A majority of pHPM specialists go on to practice within hospital-based programs, most of which are located in urban areas and prioritize on-site consultation.

Development of a research-based classification of approaches to paediatric palliative medicine service provision within children’s and young adults’ hospices: A mixed methods study

Background: Globally, pioneers in children’s palliative care influenced this speciality’s development through individual initiatives leading to diverse models of care. Children’s and young adults’ hospices have now been established around the world. However, service provision varies widely leading to inequities both within countries and internationally. Aim: To describe and classify existing approaches to paediatric palliative medicine in children’s and young adults’ hospices across the UK. Design: A mixed methods study conducted by telephone interview. Setting/participants: Thirty-one leaders of children’s hospice care, representing 28 services, 66% of UK children’s and young adults’ hospice organisations. Results: A geographic-specialist classification was developed through integration of findings, enabling hospices to be classified as Regional specialist, Regional non-specialist, Local specialist and Local non-specialist. Both qualitative and quantitative data demonstrated diversity and inequity in paediatric palliative medicine provision. Of 159 doctors (63.5% of whom were general practitioners) working in participating hospices only 27.5% had specialist training in paediatric palliative medicine. The majority of participating hospices (67.9%) did not have involvement from a paediatric palliative medicine consultant. Conclusions: Internationally, the integration of specialist children’s palliative care teams with existing services is a current challenge. Despite differing approaches to children’s palliative care world-wide, models of care which facilitate integration of specialist children’s palliative care could benefit a range of countries and contexts. The geographic-specialist classification could be used to inform recommendations for a networked approach to paediatric palliative medicine within children’s and young adults’ hospices to promote equity for children with life-limiting and life-threatening conditions.

Current status and trends in subspecialty certification in physical medicine and rehabilitation.

There is a need to better understand the overall state of sub-specialization in physical medicine and rehabilitation (PM&R). To examine the status and trends in subspecialty certification for each of the seven subspecialties approved for American Board of Physical Medicine and Rehabilitation (ABPMR) diplomates. Retrospective analysis of deidentified information from the ABPMR database. Physicians certified by ABPMR through 2019. Not applicable. For each subspecialty, we examined: (1) the number of certificates issued to ABPMR diplomates; (2) the recertification rate; (3) the yearly trends for total active, new, and expired certificates; and (4) for ABPMR-administered subspecialties, recertification rates for those entering the subspecialty through fellowship completion versus a "grandfathered" practice pathway. Of 11,421 ABPMR diplomates in the United States in 2019, a total of 3560 (31.2%) had 3985 active subspecialty certificates. Pain Medicine (PM) was the most common subspecialty certification (15.5% of all ABPMR diplomates) followed by Sports Medicine (SM, 6.6%), Brain Injury Medicine (BIM, 4.8%), Spinal Cord Injury Medicine (SCIM, 4.2%), Pediatric Rehabilitation Medicine (PRM, 2.5%), Neuromuscular Medicine (NMM, 0.7%), and Hospice and Palliative Medicine (HPM, 0.5%). For diplomates with more than one subspecialty certification, PM and SM was the most frequent combination. Both the recertification rate and the end of practice track eligibility influenced certification trends differently for individual subspecialties. The average number of new certificates added annually for every subspecialty was higher before than after the temporary practice track-based eligibility ended; the difference was statistically significant (p < .05) for SCIM, PM, SM, and NMM. The recertification rate for all subspecialties combined was 73.4%. For the subspecialties (SCIM, PRM) for which these data were available, fellowship candidates had higher recertification rates than those grandfathered through a practice track. This report informs stakeholders about the state and evolution of subspecialty certification in PM&R over time.

Oral morphine versus transmucosal diamorphine for breakthrough pain in children: methods and outcomes: UK (DIPPER study) consensus

ObjectivesNo randomised controlled trials have been conducted for breakthrough pain in paediatric palliative care and there are currently no standardised outcome measures. The DIPPER study aims to establish the feasibility...

DO NOT Remove the Catheter: A Case Report on Pediatric Palliative Pain Management with an Erector Spinae Plane Block

BACKGROUND: Erector spinae plane block (ESB) is a novel fascial plane regional anesthetic technique for pain management. The case report highlights the need for multidisciplinary education on regional nerve blockade in pediatric palliative medicine. CASE REPORT: The patient was a 5-year-old girl with relapsed metastatic Wilms tumor who presented with recurring malignant pleural effusion, necessitating chest tube insertion. She received a thoracic ESB via catheter to successfully manage uncontrolled pain. Radiation was needed, but radiation providers refused to continue ESB treatment, erroneously citing possible interactions between ESB and radiation therapy. The catheter was removed, and the patient suffered from complications before passing away. CONCLUSION: Interdisciplinary education on regional nerve blockade in pediatrics is imperative to prevent premature removal of anesthetic catheters during treatment, thereby causing unnecessary pain after risk of placement is undertaken. Further, we propose that the ESB is feasible for palliative pain management despite patient age and size. KEY WORDS: Acute pain anesthesiology, erector spinae plane block, palliative medicine, pediatric anesthesia, regional anesthesia

"Give them the door but don't push them through it": Family Attitudes Toward Physician-Led Spiritual Care in Pediatric Palliative Medicine.

Little is known about pediatric caregivers' perceptions of religious or spiritual (R/S) care provided by physicians. We conducted a qualitative, semistructured interview study to understand perceptions of pediatric caregivers toward physician-led R/S care. Participants were 20 primary caregivers whose children were hospitalized and receiving palliative care services. Interviews were audio recorded, transcribed verbatim, and analyzed using constant comparative methods. Three recurrent themes emerged regarding physician-led R/S care: (1) Most caregivers view providing R/S care as a positive sign of physician empathy, while a minority (3/20) prefer to keep R/S and medical care separate, (2) many caregivers prefer R/S care from a physician with whom they have a close relationship and/or share a faith background, and (3) physicians should open the door, but allow families to lead conversations about R/S care. Caregivers have mixed perceptions on physicians engaging in R/S care; most prefer that families set the direction of R/S care for themselves and their loved ones. Physicians should be trained to evaluate families' spiritual backgrounds and needs in ways that respectfully open the door to these conversations.

To Forgo or Not to Forgo: Nutrition and Hydration in a Child Perceived to Be Suffering Inordinately by Parents (TH366)

•Attendees will be able to describe the American Academy of Pediatrics (AAP) position on forgoing medically administered nutrition and hydration (MANH) for pediatric patients.•Attendees will gain an appreciation for the ethical, religious, spiritual ,and cultural dimension of the question at hand: whether it is ever appropriate to forgo MANH in a seriously ill child who is neither actively dying nor unaware, though is suffering.•Attendees will develop practical skills to mitigate circumstances in which the loving values and preferences of parents for their child conflict with the child's best interest, as perceived by some healthcare professionals. The American Academy of Pediatrics (AAP) has deemed forgoing medically administered nutrition and hydration (MANH) for pediatric patients ethically acceptable in selected circumstances, when there is consensus that the provision of fluids and nutrition do not confer a net benefit to the child. The practice, for instance, might be permissible for a child who permanently lacks awareness and ability to interact with the environment or a child in the dying process for whom nutrition/hydration simply may prolong and add morbidity. It is common practice, for instance, in hospice patients to forgo MANH at the end of life to avoid harmful side effects (respiratory distress, edema, skin breakdown) and mitigate suffering (through uremia and ketosis). But what about the case of a child who is neither actively dying nor unaware, whose parents perceive them to be experiencing inordinate suffering? In this interactive, case-based session, a multidisciplinary panel (including the AAP statement's first author) will explore how to navigate situations where loving parents' values and preferences for their child, which we usually strive to honor and uphold, conflict with the child's best interest, as perceived by some healthcare professionals. Several pediatric palliative medicine physicians and pediatrician-ethicists will analyze the AAP position with special attention to what makes this decision especially complex for children, including the emotional resonance of feeding, the inability of infants to feed themselves, and the best interest standard. A pediatric chaplain will review the religious and spiritual dimensions of this decision, with specific reference to the Ethical and Religious Directives of the Roman Catholic Church, which directly address this issue. Attendees will leave with a deeper understanding of this complex issue as well as practical tools for working through real-life cases in a culture that is increasingly suffering-averse.

Hospices and palliative care for children: converging stories.

Children's hospices offer support to children and their families according to a model that is quite different from adult hospices and has evolved in parallel with specialist paediatric palliative medicine services. Published research, Together for Short Lives. The services hospices offer are highly valued by families. It is not always clear that hospices can be described as 'specialist', which can make it difficult for hospices to negotiate appropriate commissioning arrangements with the statutory sector. Children's palliative care generally is poorly developed compared with the adult specialty, and local providers should work with hospices to help redress the inequity that children face in accessing specialist palliative care. If hospices are to continue to be important providers of palliative care in children they must develop robust and fair relationships with local healthcare providers. That would be facilitated by development of a funding formula for children that properly acknowledges the part hospices already play in palliative care.

The use of Do-Not-Resuscitate-Order equivalents in pediatric palliative care medicine in Germany.

In the last years, the structure of Pediatric Palliative Care in Germany has developed more and more. Since 2007, there is a legal claim for a specialized palliative care in German which also applies to children. Therefore, the need of an advance care planning for children is frequently discussed. In Germany, a written advance is judicially approved only when the person concerned is of full age, intentions to change this legal ground are going on. Nevertheless in many institutions involved in pediatric palliative care standard forms similar to an advance patient directive are used, especially since 2009 when a Do-Not-Resuscitate-Order (DNR-Order) equivalent for children was published on which many German pediatric medical societies had agreed. To get an overview which DNR-Order equivalents are actually used in pediatric palliative care in Germany we sent a questionnaire with 10 items to 174 institutions that are involved in pediatric oncological palliative care between August 2012 and October 2013. Only 46.9% of replying institutions used the DNR-Order equivalent for children approved by many German pediatric societies. When asked for optimizing such an advance patient directive for minors it was mostly suggested to include always a protocol of the consenting talk, an individualized treatment algorithm of all therapeutic options (not only emergency measures) in the palliative setting, and a more detailed information about the patient's current palliative situation. All collected data were summarized within a suggestion for a new advance pediatric oncological care planning standard form for minors in Germany.

Self-Assessment of Skills and Competencies among Residents Participating in a Pediatric Hospice and Palliative Medicine Elective Rotation.

To describe our institutional experience with a four-week pediatric HPM elective rotation and its impact on residents' self-rated competencies. In the spirit of bolstering primary hospice and palliative medicine (HPM) skills of all pediatricians, it is unclear how best to teach pediatric HPM. An elective rotation during residency may serve this need. An anonymous online survey was distributed to pediatric and internal medicine/pediatrics residents at a single, tertiary academic children's hospital. Respondents were asked to rate education, experience, and comfort with five aspects of communication with families of children with terminal illnesses and six domains of managing the symptoms of terminal illnesses. Self-ratings were recorded on a 1-5 scale: none, minimal, moderate, good, or excellent. Demographic data, including details of training and prior HPM training, were collected. Respondents completed a set of six questions gauging their attitude toward palliative care in general and at the study institution specifically. All respondents desire more HPM training. Those residents who self-selected to complete a pediatric HPM elective rotation had significantly higher self-ratings in 10 of 11 competency/skill domains. Free-text comments expressed concern about reliance on the specialty HPM team. A pediatric HPM elective can significantly increase residents' self-rated competency. Such rotations are an under-realized opportunity in developing the primary HPM skills of pediatricians, but wider adoption is restricted by the limited availability of pediatric HPM rotations and limited elective time during training.

Seizure management in children requiring palliative care: a review of current practice.

Controlling seizures in children approaching death can be difficult, and there is a limited evidence base to guide best practice. We compared current practice against the guidance for seizure management produced by the Association of Paediatric Palliative Medicine (APPM). Retrospective case note review of episodes of challenging seizure management in children receiving end-of-life care over a 10-year period (2006-2015) in the south-west region of England. We reviewed 19 admissions, in 18 individuals. Six (33%) had a malignancy, nine (50%) had a progressive neurodegenerative condition and three (17%) had a static neurological condition with associated epilepsy. Thirteen (72%) died in their local hospice, four (22%) at home, and one (6%) in hospital. Seventeen of 19 episodes involved the use of subcutaneous or intravenous midazolam infusion, for a mean of 11 days (range 3-27). There was a wide range of starting doses of midazolam, and 9/17 (53%) received final doses in excess of current dose recommendations. Six individuals received subcutaneous phenobarbital infusions, with four of these (67%) receiving final doses in excess of current dose recommendations. Plans for adjustments of infusion rates, maximal doses or alternative approaches should treatment fail were inconsistent or absent. In 16/18 (88%) cases seizures were successfully controlled prior to the day of the child's death. Staff found the experience of managing seizures at end of life challenging and stressful. Pharmacological approaches to seizure management in end-of-life care are variable, often exceeding APPM dose recommendations. Despite this, safe and effective seizure control was possible in all settings.

Ventilation non invasive et soins palliatifs en pédiatrie. État des lieux en France

The benefits of non-invasive ventilation (NIV) have been clearly demonstrated in pediatrics. In palliative care, NIV can improve the level of comfort and quality of life and can decrease dyspnea. The objective was to survey pediatricians' opinions and practices regarding NIV in palliative care in France. A mail survey was conducted among pediatric pneumologists, intensivists and palliative medicine consultants from February 2015 to March 2015. In case of acute respiratory failure, 84% of the responding practitioners found NIV appropriate in do-not-intubate (DNI) children, while only 35% of them found it appropriate in comfort-measures-only (CMO) children (P<0.0001). In case of progressive respiratory failure, 68% of the responders found NIV appropriate in DNI children, while only 30% in CMO children (P<0.05). The major criterion for initiating NIV in pediatric palliative care was the presence of dyspnea. In pediatric palliative care, the efficacy of NIV was evaluated primarily clinically in terms of the improvement of the child's comfort level, as well as the child's and family's satisfaction. Hypercapnia and desaturation were rarely measured to initiate NIV or to assess its efficacy. Sixty percent of the responding practitioners indicated that referral to NIV was anticipated with children and family before acute events or end-of-life occurred. French pediatricians habitually use NIV for management of acute or progressive respiratory symptoms in DNI children. In CMO children, a majority of responding practitioners find NIV inappropriate. In palliative care, the indications for and efficacy of NIV are evaluated based on clinical criteria and rarely on gasometric criteria.

Fifteen-minute consultation: perinatal palliative care

Perinatal palliative medicine is an emerging subspecialty within paediatric palliative medicine, neonatal medicine, fetal medicine and obstetrics. It comprises patient-focused, non-judgemental shared decision making and aims to provide holistic multidisciplinary...

THE ROLE OF THE PHARMACIST IN PAEDIATRIC PALLIATIVE CARE

AimTo explore what involvement pharmacists in the UK have in paediatric palliative careObjectives1. To determine the current roles and services provided by pharmacists to paediatric palliative care patients.2. To establish...