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

While stakeholders in hand transplantation (HTx) recognize the importance of assessing quality of life (QoL), QoL has historically been inadequately defined and measured in such assessment procedures. Current conversations related to QoL in HTx could be enhanced by a phenomenological account of the lived body-namely, by illuminating the ways in which humans develop a holistic QoL through meaningful orientation in their interactions with the world and others. This meaningful orientation involves many factors; this essay considers how QoL is shaped by temporality (how past and future inform present satisfaction), embodiment (habituated, generally unconscious, meaningful attunement to the world), and intersubjectivity (how our identity as selves is constructed through social relationships). Hands-on PhenomenologyStakeholders in vascularized composite allotransplantation-specifically, hand transplantation (HTx)-acknowledge that standard assessment of quality of life (QoL) and providing long-term enhancement of QoL to hand transplant recipients is essential for the future of HTx. 1,2 However, there is ongoing debate regarding how QoL is to be defined and measured in such assessment procedures and, furthermore, how assessments can be standardized across the unique circumstances of individual transplant recipients. 2,3 Concerns over how to assess QoL are magnified by the tendency among stakeholders and the media to overemphasize cases that have been particularly successful and without incident. 2,3 For example, the website for the Louisville program 4 provides links to the success stories of its 10 HTx patients but does not mention that one recipient completed suicide, 2 have had their hand transplants removed, or that another feels that his hand transplant is effectively useless. 2,3 Furthermore, current tools that are used to track the progress of HTx patients (Carroll; Disabilities of the Arm, Shoulder and Hand, or DASH; and Hand Transplantation Score System, or HTSS, which still needs validation 1,5 ) are primarily concerned with functionality of the hand and lack adequate metrics for evaluating QoL.Current QoL assessments of hand transplant recipients fail to appreciate how our habituated, multifaceted, and generally unconscious facilitation of our Citation

Section: Temporalitymentioning

confidence: 99%

Section: Temporalitymentioning

confidence: 99%

What Hand Transplantation Teaches Us About Embodiment

Bahler

2019

“…Efforts are being made to study hand and upper extremity transplant recipients and caregivers outside of laboratory settings. 14 Herrington et al explored the narratives of caregivers who often felt burdened by demands of providing care, 15 despite their being crucial for long-term patient well-being and allograft survival. 16 Caregiving imposes physical and psychosocial demands on caregivers that affect their health and well-being sufficiently to impact the care they provide.…”

Section: Commentarymentioning

confidence: 99%

Should a Caregiver's QoL Be Considered in Decisions About Whether a Patient Has an Experimental Double-Hand Transplant?

Dorante¹,

Devine

Talbot

2019

A goal of hand and upper extremity transplantation is to return motor and sensory function to an amputee. Given the integral roles of one's hands in activities of daily living and social interaction, however, restoring psychosocial well-being should also be a priority. Based on the authors' experience, double-hand transplantation success depends significantly on strong social support, physical rehabilitation, medication adherence, and social integration. Because caregiving is demanding, tasks should be distributed among members of a patient's family and social network. This article analyzes how to respond to an overwhelmed caregiver by drawing on solid organ transplant literature about caregiver fatigue. CaseC is a quadrilateral amputee who lives with her partner, N. After 2 years of working with prosthetics and outfitting their apartment with assistive devices, N and C have a life together they enjoy.

“…Although attempts have been made to describe transformations in the health and quality of life of HTx patients using self-reported, survey-based methods or thematic analysis of psychiatric semistructured interviews, 28,29,30 these approaches do not necessarily perform the essential work of representing the viewpoints of recipients and their families before and after hand transplant surgery. In a 2012 review, "Quality of Life Considerations in Upper Limb Transplantation," Sally E. Jensen and colleagues consulted approximately 250 academic papers on HTx, 27 of which had quality of life as their main topic and were included in their analysis.…”

Section: Gaps In the Literature On Htx And Vcamentioning

confidence: 99%

“…In some cases, no attempt was made to approach experimental participants for their point of view even when the stated goals of the research were compatible with doing so. 30 The poor quality of QoL outcomes reporting in the first 2 decades of HTx and VCA experimentation has been remarked on by health care policy and behavioral health researchers and HTx practitioners. 17,19,31 Martin Kumnig and colleagues wrote in a 2014 review paper:…”

Section: Gaps In the Literature On Htx And Vcamentioning

confidence: 99%

What's Missing in Our Thinking About Quality of Life in VCA?

Herrington

2019

Drawing on the principles of respect for autonomy and beneficence, many scholars have argued that despite significant drawbacks of immunosuppression and surgery, vascularized composite allotransplantation (VCA), such as hand and face transplantation, has the potential to enhance the lives of patients who meet appropriate criteria and are well supported. This article provides a brief overview of the literature on VCA with a focus on hand transplantation (HTx) and offers a critique of the lack of empirical data on HTx patients' perspectives. Quality of Life in Hand Transplants Within a few years after the publication of the first journal articles arguing for the ethical and scientific viability of hand transplantation in the modern era of immunosuppression, 1,2,3 hand transplantation (HTx) and other forms of vascularized composite allotransplantation (VCA) had become technically possible, 4,5,6 and they now are viewed as beneficial for properly selected and supported recipients. 7,8,9,10 Because reconstructive transplantation, such as hand and face transplantation, does not afford the lifesaving or life-extending benefits that have so far characterized transplant medicine, the permissibility of VCA resides in the potential of these transplants to enhance recipients' subjective quality of life (QoL) for as long as they have their allograft. Realizing potential gains in QoL is complicated, however, by the burdens of lifelong immunosuppression to prevent graft rejection and loss, which can also potentially limit longevity.