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  • Letter to the Editor
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Engender trust and edify

Bone Marrow Transplantation volume 53, page 104 (2018)Cite this article

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Scanlan et al.1 provide an important contribution to the discussion surrounding informed consent for hematopoietic cell transplantation (HCT), rightly noting that HCT is high risk and complex, and that patients who might consider HCT are vulnerable and often have limited treatment options. While we agree with Scanlan et al.1 that the informed consent process and accompanying information disclosure can, as the authors argue, ‘provide a ‘space’ in which a relationship of trust could flourish’,1 we worry that given the vulnerable state in which patients consent to HCT, trust without understanding could have negative consequences, particularly for those patients who may be cured of the underlying primary disease by the HCT, but may have permanent negative consequences (e.g. chronic graft-versus-host disease), or those who will not be cured, and, in hindsight, would have chosen to discontinue treatment and pursue palliative care sooner.

As we note in our original article,2 trust is an important factor in the decision-making process regarding HCT. We do not suggest that the decision-making process should rely solely on education, enhancing comprehension or better consent forms, nor that trust is not essential. Quite the contrary, we argue that trust is an important factor, but cannot take the place of informed consent. In fact, we argued that, ‘depending on the degree of control the patient wishes to exert, the informed consent process can serve as a mutual trust-building exercise between the patient and physician’,2 as patients place a high emphasis on trust in their physicians, particularly in the context of BMT. We further argue that this need not be seen as unjustifiably paternalistic, as patients may autonomously choose to act on the guidance of a trusted physician. It is essential though that this decision is left to patients. An over-reliance on trust, at the expense of informed consent, is problematic because it may raise serious legal concerns, it is not clear what would ground physician recommendations and it may lead to patient regret in an already vulnerable population.

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References

  1. Scanlan CL, Stewart C, Kerridge I . Trust, not education, is the key to consent in hematopoietic cell transplant: in response to D'Souza, Pasquini and Spellecy. Bone Marrow Transplant, e-pub ahead of print 10 July 2017; doi:10.1038/bmt.2017.125.

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Authors and Affiliations

  1. Department of Medicine, Division of Hematology/Oncology, Medical College of Wisconsin, Milwaukee, WI, USA

    A D'Souza & A Derse

  2. Center for Bioethics and Medical Humanities, Institute for Health and Equity, Medical College of Wisconsin, Milwaukee, WI, USA

    R Spellecy & A Derse

Authors
  1. A D'Souza
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  2. R Spellecy
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  3. A Derse
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Corresponding author

Correspondence to R Spellecy.

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The authors declare no conflict of interest.

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D'Souza, A., Spellecy, R. & Derse, A. Engender trust and edify. Bone Marrow Transplant 53, 104 (2018). https://doi.org/10.1038/bmt.2017.217

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