Pediatric Perspectives on Palliative Care in the Neurocritical Care Unit

被引:0
作者
Vermilion, Paul [1 ]
Boss, Renee [2 ]
机构
[1] Univ Rochester, Dept Med Pediat & Neurol, Med Ctr, Box 687,601 Elmwood Ave, Rochester, NY 14642 USA
[2] Johns Hopkins Univ, Dept Pediat Palliat Care, Sch Med, Baltimore, MD USA
关键词
Palliative care; Terminal care; Communication; Pain; Infant; Child; Quality of life; Humans; Parents; Ethics; TRAUMATIC BRAIN-INJURY; INTENSIVE-CARE; OF-LIFE; CHILDREN; PARENTS; COMMUNICATION; OUTCOMES; INFANTS; DEATH; COMPETENCE;
D O I
10.1007/s12028-024-02076-1
中图分类号
R4 [临床医学];
学科分类号
1002 ; 100602 ;
摘要
Pediatric neurocritical care teams care for patients and families facing the potential for significant neurologic impairment and high mortality. Such admissions are often marked by significant prognostic uncertainty, high levels of parental emotional overload, and multiple potentially life-altering decision points. In addition to clinical acumen, families desire clear and consistent communication, supported decision-making, a multidisciplinary approach to psychosocial supports throughout an admission, and comprehensive bereavement support after a death. Distinct from their adult counterparts, pediatric providers care for a broader set of rare diagnoses with limited prognostic information. Decision-making requires its own ethical framework, with substitutive judgment giving way to the best interest standard as well as "good parent" narratives. When a child dies, bereavement support is often needed for the broader community. There will always be a role for specialist palliative care consultation in the pediatric neurocritical care unit, but the care of every patient and family will be well served by improving these primary palliative care skills.
引用
收藏
页码:739 / 748
页数:10
相关论文
共 88 条
  • [1] Religious perspectives on withdrawal of treatment from patients with multiple organ failure
    Ankeny, RA
    Clifford, R
    Jordens, CFC
    Kerridge, IH
    Benson, R
    [J]. MEDICAL JOURNAL OF AUSTRALIA, 2005, 183 (11-12) : 616 - +
  • [2] [Anonymous], 2023, MOST PUBLIC SCH FACE
  • [3] [Anonymous], SERIOUS NEWS BREAKIN
  • [4] [Anonymous], RESPONDING EMOTION A
  • [5] [Anonymous], 2019, CRITICAL CARE MED CO
  • [6] [Anonymous], 2020, AM BOARD PEDIAT
  • [7] Efficacy of communication skills training for giving bad news and discussing transitions to palliative care
    Back, Anthony L.
    Arnold, Robert M.
    Baile, Walter F.
    Fryer-Edwards, Kelly A.
    Alexander, Stewart C.
    Barley, Gwyn E.
    Gooley, Ted A.
    Tulsky, James A.
    [J]. ARCHIVES OF INTERNAL MEDICINE, 2007, 167 (05) : 453 - 460
  • [8] Baile W F, 2000, Oncologist, V5, P302, DOI 10.1634/theoncologist.5-4-302
  • [9] Characterizing the Language Used to Discuss Death in Family Meetings for Critically III Infants
    Barlet, Margaret H.
    Barks, Mary C.
    Ubel, Peter A.
    Davis, J. Kelly
    Pollak, Kathryn, I
    Kaye, Erica C.
    Weinfurt, Kevin P.
    Lemmon, Monica E.
    [J]. JAMA NETWORK OPEN, 2022, 5 (10) : E2233722
  • [10] Allocation to pediatric recipients around the world: An IPTA global survey of current pediatric solid organ transplantation deceased donation allocation practices
    Benabe, Stefany Hernandez
    Batsis, Irini
    Dipchand, Anne I. I.
    Marks, Stephen D. D.
    McCulloch, Mignon I. I.
    Hsu, Evelyn K. K.
    [J]. PEDIATRIC TRANSPLANTATION, 2023, 27