pre-transplant status. “I don’t think a hand transplant is right for me in the long run. What I have to do to take care of the hand interferes too much with how I want to live my life. All things considered, I think it was better for me before.”
Slide 2: Surprised? Transplantation asks a lot of its recipients.
– Lifelong immunosuppression – placing patients at risk for infection, malignancy, and medication toxicity.
– Restrictions around diet, activities and exposures.
– Burden on caregivers in the acute post-transplant period and beyond.
Specific to limb transplant:
– Regular physical therapy to maximize function.
– Loss of prosthetic limbs, on which patients grow to rely.
Slide 3: Harm & Good: Assessing risk/benefit of an intervention for an individual patient is always critical and challenging. When a transplant is directly life-extending (e.g. liver), many patients and physicians can justify the constraints of post-transplant care. However, when a transplant’s primary purpose is quality-of-life improvement, the net benefit of surgery can become less straightforward.
Slide 4: Within the world of transplant research, quality of life (QoL) metrics are not standardized between patients, institutions, or studies. When evaluating success, transplant research also tends to prioritize surgical outcomes and post-procedure graft viability over QoL measures.
Slide 5: TRANSPLANT ETHICISTS HAVE CALLED FOR –
Standardized QoL assessments
Emphasis on QoL over medical/surgical outcomes in transplant research.
Discussion of realistic QoL goals and expectations with patients considering transplant.
Slide 6: Ongoing questions:
If QoL isn’t always improved by transplant, how can we identify recipients most likely to benefit?
How much QoL improvement outweighs the risks of lifetime graft maintenance? Who should have a say in that decision?
Should there be a larger focus on QoL outcomes even when studying procedures that are directly life-saving?
The Food For Thought
With advances in transplantation medicine the possibility of transplanting “non-essential organs,” like a limb, face, or larynx, has become a reality. These procedures bring up new questions about the balance of doing harm and good in primarily life-enhancing interventions, murkiness in the definition of “essential,” and challenges of data collection in transplant medicine.
- DiMartini A, Dew MA. In Experimental Hand Transplantation, Whose Views About Outcomes Should Matter Most? AMA J Ethics. 2019 Nov 1;21(11):E936-942. PMID 31742541 .
- Dorante MI, Devine E, Talbot SG. Should a Caregiver’s QoL Be Considered in Decisions About Whether a Patient Has an Experimental Double-Hand Transplant? AMA J Ethics. 019;21(11):E943-952. PMID 31742542.
- Herrington E. What’s Missing in Our Thinking About Quality of Life in VCA? AMA J Ethics. 2019;21(11):E968-973. PMID 31742545.
- Caplan A, Purves D. A quiet revolution in organ transplant ethics. BMJ J of Medical Ethics. 2017; 43:797-800. PMID 28424230.
- Kumnig M, Massey EK, Parker LS. Why Quality-of-Life Data Collection and Use Should Be Standardized When Evaluating Candidates for Hand Transplantation.AMA J Ethics. 2019;21(11):E974-979. PMID 31742546.
Tags: ethics, transplant