“But It’s a Gift!” - PowerPoint Presentation

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“But It’s a Gift!”Adherence Pressures Post-Transplant

Laura Guidry-Grimes, PhDAssistant Professor of Medical Humanities and Bioethics  Clinical EthicistUniversity of Arkansas for Medical Sciences  Arkansas Children’s Hospital

DisclosureI have no conflicts of interest.The views presented here are my own and not those of the University of Arkansas for Medical Sciences or Arkansas Children’s Hospital.

A version of this paper is forthcoming in The Journal of Hospital Ethics, Transplant Issue.

“The Gift”

The Gift Ethic

Moral obligation to be as adherent as possible Non-adherence as a type of moral failureDonors’ Families

Donors

Recipients

HCPs

OPOs

Recipients’ Families

Two major implications for transplant recipients

:

Outline Analysis of gifts and gifting

Discussion of how organs could be a certain type of gift Investigation of the moral obligations of transplant recipients as implied by the gift ethic Putative role of healthcare professionals (HCPs) Evaluation of the limitations of those obligations, even under the gift ethic Circumstances when non-adherence is not a moral failure

Gifts and Gifting Relational aspect adds

moral weight to receipt of organ Beyond good stewardship of scarce resources “the giver, the receiver, and their families may find themselves locked in a creditor-debtor vise that binds them one to another in a mutually fettering way” (Fox & Swazey)

Gifts and Gifting Gifting, paradigmatically:

when an agent gives something knowingly, voluntarily, and intentionally with the purpose of benefiting the recipient without explicit or implicit expectation of compensation in return

Gifts and Gifting Gifting vs. Other Exchanges

If expectation of compensation (not nec. $), then closer to a type of implicit or explicit contract Does allow for someone to give a gift with expectation of receiving one in return (e.g., on an anniversary) as long as A’s giving of the benefit to B is not dependent on B’s giving of a benefit to A

Gifts and Gifting Gifting vs. Other Exchanges

To have its fullest social and moral force, motive behind it should be as “pure” as possible intend the benefit for the recipient’s own sake (don’t make Homer’s mistake in giving Marge a bowling ball he wanted for himself)

Organs as Gifts… Donor knowingly, voluntarily, and intentionally arranged for the donation?

Donation arranged for the purpose of benefiting the recipient(s)? Donor had no expectation of compensation?Live donationPosthumous donation

Organs as Gifts… If organs are rarely

part of a proper gifting relationship, then why hold onto the gift ethic at all? Binds together a moral community “gifts of the body are a symbolically rich way to reaffirm the value of solidarity, that we are, in fact, members of one community, responsive to one another’s needs” (Thomas Murray) Harmless to make a mistake when calling something a “gift” but unjust not to call something a “gift” when it was intended as such

…With Strings Attached Gifts with (non-compensatory) expectations of what the recipient ought to do in response to receiving the benefit

Strings can vary… Weak: some acknowledgement and expression of gratitude to Strong: justified to demand return, reimbursement, or apologyShould be clear and explicit with mutual agreement !

Organs have pretty strong strings attached – more than mere gratitude is expected in response. Recipients’ commitments are necessary to sustain the donation system.

…With Strings AttachedPre-tx period (days – years)keeping appointments

consenting to tests

following regimen

abstaining from alcohol & other substances

Post-

tx

period (lifelong)

strictly adhering to medications

agreeing to readmission & convalescence

making recommended diet & lifestyle changes

consenting to medically necessary procedures

communicating any problems

The Role of HCPs

Investigate extent and contributing factors of non-adherence Could involve tests, series of personal questions Try to address any obstacles to strict adherence even 5% deviation from prescribed regimen can lead to graft rejection or loss (Albekairy et al.)How much is too much?

The Role of HCPs?

When HCPs believe they have obligations to protect the gift, they think they are taking on the responsibility of ensuring that the recipient respects the strings attached to it. Seem justified (compelled?) in demanding a great deal from recipients Seem to have moral authority? – having intimate knowledge of what recipients are doing, determining moral appropriateness of some decisions over others, deciding what pressures should be exerted

The Role of HCPs?

Shaming and the force of disappointment Paternalistic measures Shading the truth Coercive pressureCan all be well-intentioned based on what the HCP believes about the pt’s

medical well-being and the

pt’s moral integrity

When Non-Adherence is Not a Moral Failure When expectations (strings) were not clear

Details of how post-op course could go, possible complications, possible need for subsequent hospitalizations, lifelong medical regimen, what all this means for their life Difficult for any HCP to convey, nearly impossible for any pt to grasp Life-or-death, desperate nature of tx waitlist Some aspects of regimen req. experience to understand

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When Non-Adherence is Not a Moral Failure When external barriers are significant

Medications, diet, clinic visits, transportation become financially onerous, more difficult due to lost supports or access Multiple studies show well-intentioned pts struggle with dosing schedule, numerous side effects, other upheavals to daily living Gift ethic can discourage pts from being forthright about these barriers, so they go unaddressed and worsen

When Non-Adherence is Not a Moral Failure When internal barriers are significant

Documented loss of control, helplessness, lost of independence when in the hospital Uncharitable to consider non-adherence mere akrasia (weakness of will) Takes time and adequate supports to build resilience in the face of losses to sense of self-efficacy, hope, confidence

When Non-Adherence is Not a Moral Failure When healthcare goals evolve

If, after reasonable attempts to be adherent, the recipient makes the informed and reflective decision not to follow the medical regimen any longer HCPs might believe they are protecting what the pt “really” wants, but the pt can gain experiential knowledge and have more informed, authentic, autonomous goals Point is to try to benefit a person, not just to promote survival of the organ for its own sake  important for sustaining the donation system as well

Conclusions The gift ethic fortifies the “sick role” – framing transplant recipients as lifelong patients who ought to be eternally grateful that they were given a chance of survival with proper healthcare monitoring and compliance.

When organs are gifts, they have strings attached, and HCPs can make critical errors in misunderstanding the nature of those strings. Accepting the organ does not bind the recipient’s autonomy absolutely, and non-adherence is not always a moral failure.

Thank You!LGuidryGrimes@uams.edu