Advertisement

Medicine, Health Care and Philosophy

, Volume 22, Issue 3, pp 407–425 | Cite as

Narrative methods for assessing “quality of life” in hand transplantation: five case studies with bioethical commentary

  • Emily R. HerringtonEmail author
  • Lisa S. Parker
Scientific Contribution

Abstract

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.

Keywords

Reconstructive surgery Hand transplantation Vascularized composite allotransplantation Person-centered medicine Disability Research ethics Caregiver burden Qualitative methods Informed consent 

Notes

Funding

This study was funded by Department of Communication, University of Pittsburgh (US).

Compliance with ethical standards

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. For this type of study formal [IRB] consent is not required.

Informed consent

Informed consent was obtained from all individual participants included in the study. Additional informed consent was obtained from all individual participants for whom identifying information is included in this article. “Deed of Gift” forms for all narrators are on file with the first author.

References

  1. Alexander, C. 1977. A Pattern Language: Towns, Buildings, Construction. New York: Oxford University Press.Google Scholar
  2. Alnaes, A. 2012. Narratives: an essential tool for evaluating living kidney donations. Medicine, Health Care and Philosophy. 15: 181–194.CrossRefGoogle Scholar
  3. Bachmann, D. 2007. Quality of life in hand transplant patients. In Hand Transplantation, eds. Marco Lanzetta and Jean-Michel Dubernard, 363–369. Springer.Google Scholar
  4. Baylis, F. 2004. A face is not just like a hand: pace Barker. The American Journal of Bioethics: AJOB 4 (3): 30–32.  https://doi.org/10.1080/15265160490496804. discussion W23–31.CrossRefGoogle Scholar
  5. Benedict, J. L. 2017. A Revised Consent Model for the Transplantation of Face and Upper Limbs: Covenant Consent. Cham: Springer.CrossRefGoogle Scholar
  6. Bornat, J., and R. Perks. 2014. Oral History, Health, and Welfare. London: Routledge.Google Scholar
  7. Brandacher, G. 2015. The science of reconstructive transplantation. New York: Humana Press.  https://doi.org/10.1007/978-1-4939-2071-6.CrossRefGoogle Scholar
  8. Breidenbach et al. 2016. A methodology for determining standard of care status for a new surgical procedure: hand transplantation. Plastic and Reconstructive Surgery 137 (1): 367–373.  https://doi.org/10.1097/PRS.0000000000001892.CrossRefGoogle Scholar
  9. Brockman, R. 2013. Only stories matter: the Psychology and neurobiology of story. American Imago 70 (3): 445–460.CrossRefGoogle Scholar
  10. Bueno, E., M. Benjamin, G. Sisk, C. E. Sampson, M. Carty, J. J. Pribaz, … S. G. Talbot. 2013. Rehabilitation following hand transplantation. Hand 9 (1): 9–15.  https://doi.org/10.1007/s11552-013-9568-8.CrossRefGoogle Scholar
  11. Calcott, et al. 2015. Engineering and biology: counsel for a continued relationship. Biological Theory 10 (1): 50–59.  https://doi.org/10.1007/s13752-014-0198-3.CrossRefGoogle Scholar
  12. Campbell, F. 2004. The case of Clint Hallam’s wayward hand: print media representations of the ‘uncooperative’ disabled patient. Continuum 18 (3): 443–458.  https://doi.org/10.1080/1030431042000256162.CrossRefGoogle Scholar
  13. Caplan, A. L., and D. Purves. 2017. A quiet revolution in organ transplant ethics. Journal of Medical Ethics 43 (11): 797–800.  https://doi.org/10.1136/medethics-2015-103348.CrossRefGoogle Scholar
  14. Caplan, A. L., B. Parent, J. Kahn, W. Dean, L. L. Kimberly, W. A. Lee, and E. D. Rodriguez. 2018. Emerging ethical challenges raised by the evolution of vascularized composite allotransplantation. Transplantation.  https://doi.org/10.1097/tp.0000000000002478.CrossRefGoogle Scholar
  15. Cendales, et al. 2011. Implementation of vascularized composite allografts in the United States: recommendations from the ASTS VCA ad hoc committee and the executive committee. American Journal of Transplantation 11 (1): 13–17.  https://doi.org/10.1111/j.1600-6143.2010.03374.x.CrossRefGoogle Scholar
  16. Charon, R. 2001. Narrative medicine. Annals of Internal Medicine 135 (10): 930.  https://doi.org/10.7326/0003-4819-135-10-200111200-00022.CrossRefGoogle Scholar
  17. Charon, R. 2006. The self-telling body. Narrative Inquiry 16 (1): 191–200.  https://doi.org/10.1075/ni.16.1.24cha.CrossRefGoogle Scholar
  18. Charon, R. 2016. Clinical contributions of narrative medicine. Oxford Medicine Online.  https://doi.org/10.1093/med/9780199360192.003.0014.CrossRefGoogle Scholar
  19. Constant, N., and L. Roberts. 2017. Narratives as a mode of research evaluation in citizen science: understanding broader science communication impacts. Journal of Science Communication A03: 1–18.Google Scholar
  20. Corbin, J. M., and A. L. Strauss. 2015. Basics of qualitative research: Techniques and procedures for developing grounded theory. Los Angeles: SAGE.Google Scholar
  21. Coulehan, J. 2003. Metaphor and medicine: narrative in clinical practice. The Yale Journal of Biology and Medicine 76 (2), 87–95.Google Scholar
  22. Cudney, P. 2014. What really separates casuistry from principlism in biomedical ethics. Theoretical Medicine and Bioethics 35 (3): 205–229.  https://doi.org/10.1007/s11017-014-9295-3.CrossRefGoogle Scholar
  23. Dickenson, D., and G. Widdershoven. 2001. Ethical issues in limb transplants. Bioethics 15(2): 110–124.CrossRefGoogle Scholar
  24. Editors, T., and M. Pl. 2007. Qualitative research: understanding patients’ needs and experiences. PLoS Medicine 4 (8): e258.  https://doi.org/10.1371/journal.pmed.0040258.CrossRefGoogle Scholar
  25. Errico, M., N. H. Metcalfe, and A. Platt. 2012. History and ethics of hand transplants. JRSM Short Reports 3 (10): 1–6.  https://doi.org/10.1258/shorts.2012.011178.CrossRefGoogle Scholar
  26. Foucault, M., and A. Sheridan. 1973. The Birth of the Clinic: An Archaeology of Medical Perception. London: Tavistock Publications.Google Scholar
  27. Geisler, S. L. 2006. The value of narrative ethics to medicine. The Journal of Physician Assistant Education 17 (2): 54–57.  https://doi.org/10.1097/01367895-200617020-00014.CrossRefGoogle Scholar
  28. Health Quality, Ontario. 2016. Composite tissue transplant of hand or arm: a health technology assessment. Ontario Health Technology Assessment Series [Internet]. (13):1–70. http://www.hqontario.ca/Evidence-to-Improve-Care/Journal-Ontario-Health-Technology-Assessment-Series/hand-arm-transplant.
  29. Hettiaratchy, S., and P. Butler. 2003. Extending the boundaries of transplantation. BMJ 326 (7401): 1226–1227.  https://doi.org/10.1136/bmj.326.7401.1226.CrossRefGoogle Scholar
  30. Hurwitz, B., and V. Bates. 2018. The roots and ramifications of narrative in modern medicine. In The Edinburgh Companion to the Critical Medical Humanities, eds Sarah Atkinson, Jane Macnaughton, Jennifer Richards, Anne Whitehead, and Angela Woods. Edinburgh: Edinburgh University Press.  https://doi.org/10.3366/edinburgh/9781474400046.003.0032.CrossRefGoogle Scholar
  31. Jensen, S. E., Z. Butt, A. Bill, T. Baker, M. M. Abecassis, A. W. Heinemann, D. Cella, and G. A. Dumanian. 2012. Quality of life considerations in upper limb transplantation: Review and Future Directions. The Journal of Hand Surgery 37 (10): 2126–2135.  https://doi.org/10.1016/j.jhsa.2012.06.010.CrossRefGoogle Scholar
  32. Jones, A. H. 2014. Narrative ethics, narrative structure. The Hastings Center Report 44 (1): S32–S35.CrossRefGoogle Scholar
  33. Jonsen, A. R. 1991. Casuistry as methodology in clinical ethics. Theoretical Medicine 12 (4): 295–307.  https://doi.org/10.1007/bf00489890.CrossRefGoogle Scholar
  34. Jowsey-Gregoire, S., and M. Kumnig. 2016. Standardizing psychosocial assessment for vascularized composite allotransplantation. Current Opinion in Organ Transplantation 21 (5): 530–535.  https://doi.org/10.1097/mot.0000000000000351.CrossRefGoogle Scholar
  35. Kalitzkus, V., and P. F. Matthiessen. 2009. Narrative-Based medicine: potential, pitfalls, and practice. The Permanente Journal.  https://doi.org/10.7812/tpp/08-043.CrossRefGoogle Scholar
  36. Kay, S., and D. Wilks. 2013. Invited Comment: Vascularized composite allotransplantation: an update on medical and surgical progress and remaining challenges. Journal of Plastic, Reconstructive & Aesthetic Surgery 66 (11): 1456–1457.  https://doi.org/10.1016/j.bjps.2013.04.065.CrossRefGoogle Scholar
  37. Kleinman, A. 1988. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books.Google Scholar
  38. Kollar, B., S. Tasigiorgos, M. I. Dorante, M. J. Carty, S. G. Talbot, and B. Pomahac. 2018. Innovations in reconstructive microsurgery: reconstructive transplantation. Journal of Surgical Oncology 118 (5): 800–806.  https://doi.org/10.1002/jso.25147.CrossRefGoogle Scholar
  39. Kumnig, M., S. G. Jowsey, and A. F. DiMartini. 2014. Psychological aspects of hand transplantation. Current Opinion in Organ Transplantation 19 (2): 188–195.  https://doi.org/10.1097/MOT.0000000000000047.CrossRefGoogle Scholar
  40. Mitchell, C. 2014. Qualms of a believer in narrative ethics. Hastings Center Report. 44 (s1): S12–S15.CrossRefGoogle Scholar
  41. Murphy, J. W., and B. A. Franz. 2016. Narrative medicine in a hectic schedule. Medicine, Health Care and Philosophy. 19: 545.  https://doi.org/10.1007/s11019-016-9718-1.CrossRefGoogle Scholar
  42. Neukom, M., V. Corti, B. Boothe, A. Boehler, and L. Goetzmann. 2012. Fantasized recipient–donor relationships following lung transplantations: a qualitative case analysis based on patient narratives. The International Journal of Psychoanalysis 93 (1): 117–137.  https://doi.org/10.1111/j.1745-8315.2011.00496.x.CrossRefGoogle Scholar
  43. Parker, L. 1995. Beauty and breast implantation: how candidate selection affects autonomy and informed consent. Hypatia 10 (1): 183–201.CrossRefGoogle Scholar
  44. Peek, J. 2016. ‘There was no great ceremony’: patient narratives and the diagnostic encounter in the context of Parkinsons. Medical Humanities 43 (1): 35–40.  https://doi.org/10.1136/medhum-2016-011054.CrossRefGoogle Scholar
  45. Petruzzo, P., M. Lanzetta, J.-M. Dubernard, L. Landin, P. Cavadas, R. Margreiter, … C. Dumontier. 2010. The international registry on hand and composite tissue transplantation. Transplantation 90 (12): 1590–1594.  https://doi.org/10.1097/TP.0b013e3181ff1472.CrossRefGoogle Scholar
  46. Ren, X., and M. C. Laugel. 2013. The next frontier in composite tissue allotransplantation. CNS Neuroscience & Therapeutics 19 (1): 1–4.  https://doi.org/10.1111/cns.12029.CrossRefGoogle Scholar
  47. Ross, H., S. Abbey, E. D. Luca, O. Mauthner, P. Mckeever, M. Shildrick, and J. Poole. 2010. What they say versus what we see: “Hidden” distress and impaired quality of life in heart transplant recipients. The Journal of Heart and Lung Transplantation 29 (10): 1142–1149.  https://doi.org/10.1016/j.healun.2010.05.009.CrossRefGoogle Scholar
  48. Samuel, Taylor-Alexander. 2014. Bioethics in the making: “ideal patients” and the beginnings of face transplant surgery in Mexico. Science as Culture 23 (1): 27–50.  https://doi.org/10.1080/09505431.2013.789843.CrossRefGoogle Scholar
  49. Sgro, G., M. Benson, J. Corbelli, and S. M. Zimmer. 2016. Rounds for reflection (R4R): enhancing the physician-patient connection through storytelling. Journal of Graduate Medical Education 8 (3): 455–457.  https://doi.org/10.4300/jgme-d-15-00705.1.CrossRefGoogle Scholar
  50. Shakespeare, Tom. 1996. Book review: an anthropologist on mars. Disability and Society 11 (1): 137–142.  https://doi.org/10.1080/09687599650023416.CrossRefGoogle Scholar
  51. Shildrick, M., A. Carnie, A. Wright, P. Mckeever, E. H. Jan, E. D. Luca, … H. Ross. 2017. Messy entanglements: Research assemblages in heart transplantation discourses and practices. Medical Humanities 44 (1): 46–54.  https://doi.org/10.1136/medhum-2017-011212.CrossRefGoogle Scholar
  52. Siegler, M. 1998. Ethical issues in innovative surgery: Should we attempt a cadaveric hand transplantation in a human subject? Transplantation Proceedings 30 (6): 2779–2782.  https://doi.org/10.1016/s0041-1345(98)00807-0.CrossRefGoogle Scholar
  53. Simmons, P. D. 2000. Ethical considerations in composite tissue allotransplantation. Microsurgery 20 (8): 458–465.  https://doi.org/10.1002/1098-2752(2000)20:83.0.co;2-g.CrossRefGoogle Scholar
  54. Slatman, J., and G. Widdershoven. 2010. Hand Transplants and Bodily Integrity. Body & Society 16 (3): 69–92.  https://doi.org/10.1177/1357034X10373406.CrossRefGoogle Scholar
  55. Svenaeus, F. 2012. Organ transplantation and personal identity: how does loss and change of organs affect the self? Journal of Medicine and Philosophy 37 (2): 139–158.  https://doi.org/10.1093/jmp/jhs011.CrossRefGoogle Scholar
  56. Taylor-Alexander, S. 2014. On face transplantation: Life and ethics in experimental biomedicine. Houndmills, Basingstoke, Hampshire: Palgrave Macmillan.CrossRefGoogle Scholar
  57. Tobin, G., W. Breidenbach, M. Klapheke, F. Bentley, D. Pidwell, and P. Simmons. 2005. Ethical considerations in the early composite tissue allograft experience: a review of the Louisville ethics program. Transplantation Proceedings 37 (2): 1392–1395.  https://doi.org/10.1016/j.transproceed.2004.12.179.CrossRefGoogle Scholar
  58. Yow, V. R. 2015. Recording oral history: A guide for the humanities and social sciences. Lanham: Rowman & Littlefield.Google Scholar
  59. Webster, L., and P. Mertova. 2008. Using narrative inquiry as a research method: an introduction to using critical event narrative analysis in research on learning and teaching. London: Routledge/Taylor & Francis Group.Google Scholar
  60. Williams, A., J. K. Low, E. Manias, and K. Crawford. 2016. The transplant team’s support of kidney transplant recipients to take their prescribed medications: a collective responsibility. Journal of Clinical Nursing 25 (15–16): 2251–2261.  https://doi.org/10.1111/jocn.13267.CrossRefGoogle Scholar
  61. Wiltshire, J. 1999. Ethnography and Oliver Sacks: the anthropologist on Mars. Postcolonial Studies 2 (3): 389–402.  https://doi.org/10.1080/13688799989670.CrossRefGoogle Scholar
  62. Woods, A. 2011. The limits of narrative: provocations for the medical humanities. Medical Humanities 37 (2): 73–78.  https://doi.org/10.1136/medhum-2011-010045.CrossRefGoogle Scholar

Copyright information

© Springer Nature B.V. 2019

Authors and Affiliations

  1. 1.University of PittsburghPittsburghUSA
  2. 2.PittsburghUSA

Personalised recommendations