Herrington Emily R, Parker Lisa S
University of Pittsburgh, 4200 Fifth Ave, Pittsburgh, PA, 15260, USA.
, 5440 5th Avenue #11, Pittsburgh, PA, 15232, USA.
Med Health Care Philos. 2019 Sep;22(3):407-425. doi: 10.1007/s11019-018-09881-4.
Despite having paved the way for face, womb and penis transplants, hand transplantation today remains a small hybrid of reconstructive microsurgery and transplant immunology. An exceptionally limited patient population internationally (N < 200) complicates medical researchers' efforts to parse outcomes "objectively." Presumed functional and psychosocial benefits of gaining a transplant hand must be weighed in both patient decisions and bioethical discussions against the difficulty of adhering to post-transplant medications, the physical demands of hand transplant recovery on the patient, and the serious long-term health risks of immunosuppressant drugs. This paper relates five narratives of hand transplantation drawn from an oral history project to show how narrative methods can and should inform ethical evaluations and the clinical process of hand transplantation. The interviews with patients and their partners analyzed here lead us to suggest that qualitative accounts of patient experiences should be used to complement clinical case studies reported in medical journals and to help develop instruments to assess outcomes more systematically.
尽管面部、子宫和阴茎移植已铺平道路,但如今手部移植仍是重建显微外科和移植免疫学的一个小分支。国际上患者群体极为有限(N<200),这使得医学研究人员“客观”剖析结果的努力变得复杂。在患者的决策以及生物伦理讨论中,获得移植手所假定的功能和心理社会效益,必须与坚持移植后用药的困难、手部移植恢复对患者的身体要求以及免疫抑制药物严重的长期健康风险相权衡。本文讲述了从一个口述历史项目中选取的五个手部移植故事,以展示叙事方法如何能够且应该为手部移植的伦理评估和临床过程提供信息。在此分析的对患者及其伴侣的访谈促使我们提出,患者经历的定性描述应用于补充医学期刊上报道的临床案例研究,并有助于开发更系统地评估结果的工具。