Objective: Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people).
Methods: The consultation involved qualitative thematic analysis of data from 14 young people (aged 12–18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19–24 years). Findings were shared with participants, and feedback helped to interpret the findings.
Results: Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this.
Conclusion: Young people’s priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.
AIM/PURPOSE: This integrative review addresses whether the presence and timing of advanced care planning (ACP) with or without a palliative care (PC) consultation affect place of death and use of high-intensity medical care at end-of-life (EOL) in adolescent and young adult and adult cancer patients receiving hematopoietic stem cell transplant (HSCT) therapy.
METHODS AND RESULTS: A literature search was completed in the Scopus and PubMed databases. The search was not restricted by date but was restricted to English language. A total of 1,616 articles were found, and after exclusion of duplicates and irrelevance, 79 articles were available to review. After reviewing inclusion and exclusion criteria, 9 articles related to ACP with HSCT were found, and 4 were eliminated after further review, resulting in 5 viable articles for review related to EOL outcomes. EOL outcomes reviewed were place of death and high-intensity medical care. Factors noted to influence these measures included the presence or absence of ACP, the timing of ACP, and PC consultation. Overall survival also emerged as an EOL outcome affected by ACP.
CONCLUSION: Although there have been many barriers identified to ACP discussions in the HSCT population, the findings from the integrative literature review support the use of early ACP with patients who have hematologic malignancies undergoing HSCT to address patient EOL goals and reduce healthcare utilization at the EOL. The data also suggest that identification of patients who would most benefit from early engagement in ACP may positively impact outcomes.
Posttraumatic stress disorder (PTSD) and prolonged grief disorder (PGD) are well-documented in parentally bereaved adolescents. Whether or not the parent's death is perceived as traumatic may be influenced by several end-of-life-related factors. This study aimed to examine the associations between end-of-life-related factors, symptoms of posttraumatic stress disorder (PTSD), symptoms of prolonged grief disorder and PGD, and the association between PTSD and PGD. Mann-Whitney U tests and Spearman correlation were used to analyze the relationships between end-of-life-related factors, PTSD, and PGD. Regretting one's decision to be present or not present at the time of death resulted in a significant difference in self-reported scores for PTSD, but not PGD.
Losing a loved one is among the most common and stressful traumatic events that a child or and adolescent can experience and can be associated with mental health and somatic disorders, as well as a range of life issues and potentially negative outcomes that may impact longitudinal development. Complicated grief, a disorder that has been studied primarily among adults, has received increasing recognition among children and adolescents in recent years. The demonstration of the distinctive character of grief reactions in relation to major depressive disorder and posttraumatic stress disorder has resulted in the inclusion of “persistent complex bereavement disorder” in an annex section of DSM-5 and of “prolonged grief disorder” in ICD-11. The grieving process in children and adolescents is not linear and is often characterised by periods of regression. Developmental phases should be taken into account to understand and clinically describe grief reactions occurring during childhood and adolescence. There are currently numerous interventions for bereaved children and adolescents, but little evidence to support them. More research focusing on the understanding of the underlying mechanisms and the risk factors for complicated grief among children and adolescents, as well as the implementation of evidence-based interventions, is definitely warranted.
The definition of adolescents and young adults (AYAs) in oncology varies with upper limits up to age 39. Younger AYAs, ages 12-24 years, are often cared for within pediatrics. In caring for AYAs with cancer, there are unique considerations that become even more important to recognize, acknowledge, and address in AYAs with life-threatening cancer receiving palliative care. This review highlights important factors such as psychosocial development, cultural considerations, and support structure, which should be considered when providing palliative care to AYAs with cancer during the various stages of care: introduction of palliative care; symptom management; advanced care planning (ACP); end-of-life (EOL) care; and bereavement.
OBJECTIVES: To develop a generalizable advance care planning ACP intervention for children and children, adolescents, and young adults with serious illness using a multi-stage stakeholder driven approach.
STUDY DESIGN: We first convened an expert panel of multidisciplinary HCPs, researchers, and parents to delineate key ACP intervention elements. We then adapted an existing adult guide for use in pediatrics and conducted focus groups and interviews with HCPs, parents and seriously ill AYAs to contextualize perspectives on ACP communication and our pediatric serious illness communication program (PediSICP). Using thematic analysis, we identified guide adaptations, preferred content and barriers for PediSICP implementation. Expert panelists then reviewed, amended and finalized the guide.
RESULTS: Stakeholders (34 HCPs, 9 parents, and 7 seriously ill AYAs) participated in focus groups and interviews. Stakeholders validated and refined the guide and PediSICP intervention and identified barriers to PediSICP implementation including need for HCP training, competing demands, uncertainty regarding timing and documentation of ACP discussions.
CONCLUSION: The finalized PediSICP intervention includes a structured HCP and family ACP conversation occasion supported by a three-part communication tool and bolstered by focused HCP training. We also identified strategies to ameliorate implementation barriers. Future research will determine feasibility of the PediSICP and whether it improves care alignment with patient and family goals.
The terminal stage of disease in teenagers is extremely complex to manage. In this study, we share some stories of terminally ill adolescent patients who made use of illusion as a way to overcome their anguish in their final stages of illness. These experiences show how young patients can cope better with terminal illness by resorting to a nonrational and fictional dimension that can serve them as a psychological compromise, helping them tolerate their real everyday life by suspending their critical senses for a while. Illusions can serve as a resource for young patients and a potentially useful tool for medical professionals.
BACKGROUND: Managing transition of adolescents/young adults with life-limiting conditions from children's to adult services has become a global health and social care issue. Suboptimal transitions from children's to adult services can lead to measurable adverse outcomes. Interventions are emerging but there is little theory to guide service developments aimed at improving transition. The Transition to Adult Services for Young Adults with Life-limiting conditions (TAYSL study) included development of the TASYL Transition Theory, which describes eight interventions which can help prepare services and adolescents/young adults with life-limiting conditions for a successful transition. We aimed to assess the usefulness of the TASYL Transition Theory in a Canadian context to identify interventions, mechanisms and contextual factors associated with a successful transition from children's to adult services for adolescents/young adults; and to discover new theoretical elements that might modify the TASYL Theory.
METHODS: A cross-sectional survey focused on organisational approaches to transition was distributed to three organisations providing services to adolescents with life-limiting conditions in Toronto, Canada. This data was mapped to the TASYL Transition Theory to identify corresponding and new theoretical elements.
RESULTS: Invitations were sent to 411 potentially eligible health care professionals with 56 responses from across the three participating sites. The results validated three of the eight interventions: early start to the transition process; developing adolescent/young adult autonomy; and the role of parents/carers; with partial support for the remaining five. One new intervention was identified: effective communication between healthcare professionals and the adolescent/young adult and their parents/carers. There was also support for contextual factors including those related to staff knowledge and attitudes, and a lack of time to provide transition services centred on the adolescent/young adult. Some mechanisms were supported, including the adolescent/young adult gaining confidence in relationships with service providers and in decision-making.
CONCLUSIONS: The Transition Theory travelled well between Ireland and Toronto, indicating its potential to guide both service development and research in different contexts. Future research could include studies with adult service providers; qualitative work to further explicate mechanisms and contextual factors; and use the theory prospectively to develop and test new or modified interventions to improve transition.
Palliative care (PC) serves a valuable role throughout the disease trajectory for adolescents and young adults (AYAs) living with cancer. A 3-year retrospective chart review was performed to characterize AYA PC referral patterns in patients aged 18-39 years to identify strategies for improving PC access. Despite known benefits, AYA referrals to PC during oncologic treatment occurred only for a small percentage of eligible patients (8.4%), largely occurred in the inpatient setting (73%), and were more likely in specific cancer types with high symptom burden and/or poor survival, with the greatest penetrance noted in lung cancer (51%).
BACKGROUND: Childhood bereavement after sibling death is common, but often unrecognized. The psychosomatic and socioeconomic outcomes of bereaved children can be compromised if appropriate care is unavailable during the formative years leading into adulthood.
AIM: This review aims to describe the methods, structures and procedures of bereavement care for children and adolescents after the loss of a sibling, and the impact on the families benefiting from these interventions.
DESIGN: A systematic review without restriction on study design was conducted.
DATA SOURCES: Four databases (MEDLINE, PsycINFO, EMBASE, Cochrane Library) were searched for articles published from 2000 to 2019. The search was conducted according to PRISMA guidelines and the protocol is registered on PROSPERO under number CRD42019124675. Articles were assessed against eligibility criteria by both authors, and quality was appraised using CASP checklists and NHMRC grading guidelines.
RESULTS: Twenty-three studies met inclusion criteria. Bereavement care was most often accessed by children ages 6-18 who lost a sibling to cancer 6-12 months prior. The interventions were typically group sessions or weekend camps, run predominantly by unpaid staff from a variety of backgrounds. Some staff members received priori specific training. Grief education is taught through mediated discussion and bereavement-centered activities balanced with playful and relaxed activities. Several services have effectuated evaluations of their interventions, and preliminary results show a positive effect for families.
CONCLUSION: Existing literature most likely gives an incomplete picture of appropriate childhood bereavement care, and many interventions possibly remain unpublished or published in other non-scientific sources. An effective response to childhood grief would involve collaboration between medical resources and community services, reinforced through the development of outreach and training programs.
Objective: To understand the perception of adolescents with cancer undergoing palliative cares about their illness process.
Method: An exploratory and qualitative study, per formed at a federal public hospital specialized in oncology disease in Rio de Janeiro, through interviews with nine adolescents aged 12 to 20 years old, from July to August 2017. Data was submitted to thematic analysis and the theoretical framework was Hildegard Peplau's Theory of Interpersonal Relationships.
Results: Three categories emerged: Living the difficult moment of the trajectory of the disease; Feeling the social isolation and that life has stopped; and Overcoming the difficult stage of the disease. They addressed the trajectory of the disease since the diagnosis, with the awakening of feelings of isolation and stagnation of life. Moreover, they highlighted the overcoming power of these adolescents.
Final considerations: The study made it possible to know the difficulties experienced during the course of the disease, providing subsidies for the practice of nurses to happen in a sensitive, individualized manner and focused on the individual's need thus enhancing comfort and quality of life.
Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated.
Purpose: This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction.
Method: A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol.
Results: Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience.
Conclusion: Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.
BACKGROUND: We aim to describe the access to palliative care (PC) in hospitalized children during end-of-life care and compare the circumstances surrounding the deaths of hospitalized children as a basis for implementing a pediatric PC program at our institution.
METHODS: We performed a retrospective chart review of deceased pediatric patients at a tertiary referral hospital in Colombia. The study group was selected by randomly drawing a sample of 100 observations from the 737 deceased children from 2013 to 2016. A 1:1 propensity score (PS) matching was performed to compare the characteristics and outcomes between PC and non-PC treated patients.
RESULTS: We included 87 patients. After PS matching, we found that patients under the care of non-PC physicians were more likely to die in the pediatric intensive care unit (non-PC: 6/10 vs PC: 1/10; P = .02), to be on vasopressor agents and mechanical ventilation (non-PC: 7/10 vs PC: 1/10; P = .02), and to receive cardiopulmonary resuscitation at the end of life (non-PC: 5/10 vs PC: 0/10; P = .03). In contrast, a significantly higher proportion of patients under the care of the pediatric PC team died with comfort measures (non-PC: 2/10 vs 8/10; P = .02) and nonescalation of care in physician orders (non-PC: 5/10 vs PC: 10/10; 0.03).
CONCLUSION: In this study, only 10 of 87 patients were treated by the pediatric PC team at the end of life. The latter finding is concerning and is a call to action to improve access to pediatric PC at our institution.
This article will focus on the following objectives specific to end-of-life care for professional case management:
Discuss recent industry topics that influence care processes.
Explore the opioid epidemic's impact on pain management.
Identify terms associated with end-of-life and life-limiting care.
Understand types of advance directives and care defining tools.
Define the purpose of psychiatric advance directives.
Discuss the shifting diagnostic face.
Discuss how inclusion manifests for the lesbian, gay, bisexual, transgender, queer/questioning (LGBTQ) population.
Explore challenges working through adolescent decision making and treatment.
Review regulation and reimbursement shifts across the industry.
Identify the use of artificial intelligence.
Discuss the value of ethics committees in health care organizations.
Define the Four Cs of Care Considerations.
Identify ethical principles for consideration by the workforce.
Le livre est indéniablement associé à l’enfance, au rituel du coucher où les parents commencent souvent par un « Il était une fois ». L’objectif de cet article est de montrer le rôle que la littérature de jeunesse peut jouer auprès des enfants de tout âge, hospitalisés, gravement malades ou en fin de vie ainsi qu’auprès de leur fratrie. L’enfant s’approprie le livre différemment selon son âge : si un nourrisson aura un rapport sensoriel au livre (essentiellement le toucher et l’ouïe), l’enfant se laissera emporter par l’histoire, oubliant pour un temps la douleur liée aux soins. Quant aux adolescents et jeunes adultes, leur identification à un personnage qui les comprend, qui vit la même chose, pourra leur permettre de faire face à la fin de vie à un âge de tous les possibles.
Background: End-of-life dreams and visions (ELDVs) are a recognized phenomenon that can occur as part of the normal dying process. Data suggest that ELDVs can provide comfort, foster discussion of waking life concerns, and lessen the fear of death. Current literature on ELDVs focuses on the prevalence, content, and effects of ELDVs exclusively in adult populations.
Methods: We present the case of a 15-year-old girl with terminal glioblastoma who was enrolled in a pediatric palliative care program and later in hospice care. During her end-of-life trajectory, the patient experienced two distinct ELDV experiences, from which she recalled vivid details regarding the setting, characters, and content. These ELDV experiences afforded comfort and meaning to the patient and her family through her end-of-life trajectory as well as provided relief for her grieving family.
Conclusion: In the case presented, ELDVs appear to show similar characteristics and impact in the adolescent population as described in the previous literature examining adult ELDVs. In addition, this case demonstrates the potential benefits of ELDV awareness for the bereaved. Clinicians working with pediatric and adolescent end-of-life populations should take note of the potential for ELDVs and the impact they can have on both patients and families.
Cette manifestation consacrée aux enfants, adolescents et jeunes adultes orphelins est une opportunité de mettre la lumière sur leur situation sociale et leur vécu. Placé sous le signe de l’action, cet événement est l’occasion de prendre connaissance des résultats inédits des sept projets de recherche soutenus par la Fondation OCIRP, du partenariat initié avec l'Institut national d'études démographiques (INED) et de l'enquête « École et orphelins », programme interne du pôle Études et recherche de la fondation. Cet événement est enfin l’occasion d’ouvrir un espace de débat entre chercheurs-es et acteurs mobilisés et concernés : praticiens, professionnels de l’action sociale et de la santé, enseignants et personnels de l’éducation, chercheurs, acteurs associatifs, responsables politiques, journalistes, représentants d’institutions publiques et d’organismes privés, et en particulier parents, enfants, adolescents et jeunes adultes orphelins et leurs proches.
C'est l'histoire d'un jeune homme de 17 ans, Parker Santé. Depuis le décès de son père il y a 5 ans, il n'a pas prononcé un mot. Pendant que ses camarades de classe postulent à l'université, lui sèche les cours du lycée et traîne dans les hôtels chics de San Francisco pour parfaire sa technique de pickpocket. Un jour, il rencontre Zelda Toth aux cheveux argentés. Il dérobe de l'argent dans son sac à main. Mais il est très surpris, elle ne le dénonce pas et lui dit qu'elle n'en aura bientôt plus l'utilité. Le livre décrit leur cheminement commun pour redonner goût à la vie l'un à l'autre.
PURPOSE: Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience.
METHODS: Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling.
RESULTS: There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity.
CONCLUSION: Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.
Background: To the authors' knowledge, end-of-life (EOL) care outcomes among adolescents and young adults (AYAs) with cancer who are living in poverty remain poorly understood. The primary aim of the current study was to examine the effect of poverty on EOL care for AYA patients with cancer.
Methods: The authors conducted a multisite, retrospective study of AYA patients with cancer aged 15 to 39 years who died between January 2013 and December 2016 at 3 academic sites. Medical record-based EOL care outcomes included hospice referral, palliative care (PC) consultation, cancer treatment within the last month of life, and location of death. Two measures of poverty were applied: 1) zip code with a median income =200% of the federal poverty level; and 2) public insurance or lack of insurance. Logistic regression analyses were conducted.
Results: A total of 252 AYA cancer decedents were identified. Approximately 41% lived in a high-poverty zip code and 48% had public insurance or lacked insurance; approximately 70% had at least 1 poverty indicator. Nearly 40% had a hospice referral, 60% had a PC consultation (76% on an inpatient basis), 38% received EOL cancer treatment, and 39% died in the hospital. In bivariable analyses, AYA patients living in low-income zip codes were found to be less likely to enroll in hospice (P = .01), have an early PC referral (P = .01), or receive EOL cancer treatment (P = .03), although only EOL cancer treatment met statistical significance in multivariable models. No differences with regard to location of death (P = .99) were observed.
Conclusions: AYA patients with cancer experience low rates of hospice referral and high rates of in-hospital death regardless of socioeconomic status. Future studies should evaluate early inpatient PC referrals as a possible method for improving EOL care.