"It's a Heavy Thing to Carry:" Internal Medicine and Pediatric Resident Experiences Caring for Dying Patients
child; terminal care; article; human; emotion; Internal Medicine; interview; content analysis; education; dying; physician; resident; multidisciplinary team; genetic transcription; meaning-making; care behavior; skill; witness; tension; personhood; internal medicine; learning environment; self care
BACKGROUND: Residents often feel unprepared to care for dying patients and may benefit from more training. Little is known about factors in the clinical setting that promote resident learning about end of life (EOL) care. <br/>OBJECTIVE(S): This qualitative study aimed to characterize the experiences of residents caring for dying patients and elucidate the impact of emotional, cultural, and logistical factors on learning. <br/>METHOD(S): 6 US internal medicine and 8 pediatric residents who had cared for at least 1 dying patient completed a semi-structured one-on-one interview between 2019 and 2020. Residents described an experience caring for a dying patient including their confidence in clinical skills, emotional experience, role within the interdisciplinary team, and perspective on how to improve their education. Interviews were transcribed verbatim and investigators conducted content analysis to generate themes. <br/>RESULT(S): 3 themes (with subthemes) emerged: (1) experiencing strong emotion or tension (loss of patient personhood, emerging professional identity, emotional dissonance); (2) processing the experience (innate resilience, team support); and (3) recognition of a new perspective or skill (bearing witness, meaning making, recognizing biases, emotional work of doctoring). <br/>CONCLUSION(S): Our data suggests a model for the process by which residents learn affective skills critical to EOL care: residents (1) notice strong emotion, (2) reflect on the meaning of the emotion, and (3) crystallize this reflection into a new perspective or skill. Educators can use this model to develop educational methods that emphasize normalization of physician emotions and space for processing and professional identity formation.
Gibbon LM; Buck L; Schmidt L; Bogetz JF; Trowbridge A
American Journal of Hospice and Palliative Care
2023
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).
<a href="http://doi.org/10.1177/10499091231181567" target="_blank" rel="noreferrer noopener">10.1177/10499091231181567</a>
How can advance care planning tools help young people's voices be heard?
child; pediatrics; female; male; human; review; advance care planning; palliative therapy; human experiment; skill; legal aspect; pediatrician; conversation; tension; voice
The integration of the child or young person (CYP) in conversations around advance care planning (ACP) is an important area of paediatric practice. These discussions provide CYP with the opportunity to voice their values, goals and preferences, enabling health-care professionals to ensure they are aligned with their planned course of treatment. This process, often undertaken within the context of the child's family, empowers children to participate in decisions and experience the dignity of self-determination. It also facilitates an increased understanding between the CYP and those involved in their care. The objectives of this paper are to highlight the importance of these conversations for paediatricians and identify barriers, both real and perceived, that may prevent them from engaging with a CYP about their preferences for future care including focusing more on discussion with the parents, and concern about or not having the skills to engage the child in such sensitive conversations. Triggers that can prompt clinicians to undertake ACP are also discussed. A further complexity is that after seeking their perspective, it may become apparent that the CYP may hold different views and perspectives to their parents and/or clinician. This review article will especially examine elements of end-of-life conversations that are critical to support the important goal of listening to the voice of the CYP. This includes considerations around timing, legal aspects, ethical tensions that arise when amplifying a child's voice, clinician/team-member roles, clinical process considerations, and the use of specific interventions and ACP tools to facilitate these conversations with CYP. Copyright © 2022 Paediatrics and Child Health Division (The Royal Australasian College of Physicians).
Trang J; Herbert A; Sansom-Daly UM
Journal of Paediatrics and Child Health
2022
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).
<a href="http://doi.org/10.1111/jpc.16095" target="_blank" rel="noreferrer noopener">10.1111/jpc.16095</a>
Parental experiences and coping strategies when caring for a child receiving paediatric palliative care: a qualitative study
article; child; female; human; male; palliative therapy; controlled study; qualitative research; thematic analysis; Coping; Paediatrics; pediatrics; clinical article; coping behavior; decision making; interview; child care; anxiety; Caregiving; child parent relation; Experiences; grief; Palliative care; Parents; perception; tension; uncertainty
Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s). Conclusion(s): Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies.What is Known:* In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance.What is New:* Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship.* Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes.* To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies. Copyright © 2019, The Author(s).
Verberne L M; Kars M C; Schouten-van Meeteren A Y N; van den Bergh E M M; Bosman D K; Colenbrander D A; Grootenhuis M A; van Delden J J M
European Journal of Pediatrics.
2019
<a href="http://doi.org/10.1007/s00431-019-03393-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-019-03393-w</a>