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Trust, not education, is the key to consent in hematopoietic cell transplant: in response to D’Souza, Pasquini and Spellecy

Bone Marrow Transplantation volume 52, page 1658 (2017)Cite this article

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In a recently published review in Bone Marrow Transplantation, D’Souza et al.1 suggest that, because hematopoietic cell transplantation (HCT) is a complex long-term treatment, a higher level of competence, capacity and health literacy is required by patients to enable them to make an informed decision about undergoing HCT. While there is little doubt that existing decision-making and consent processes may be improved, the ‘realities’ of HCT, the fact that it is high risk, performed in vulnerable patients who have little, if any, other therapeutic options, may limit the impact that any education strategies may elicit.

We suggest that focus on education when patients are making a decision in the shadow of death2 may be misguided. What may be more important is to recognize the patients' intense vulnerability, the degree to which their choices are limited, and their decisions embedded in their social context and in the lives of others, and therefore work to elucidate the patients’ values and beliefs, hopes, fears, and establish a relationship of trust. There are other more achievable and indeed more appropriate matters than ‘education’ in which healthcare professionals can support patients to enable them to ‘consent’, by which we mean that they reach a decision that is aligned with their individual values and beliefs. It is when decisions reflect the patients’ values and beliefs that patients can take ownership of their decisions, and valid consent has been achieved.

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References

  1. D’Souza A, Pasquini M, Spellecy R . Is ‘informed consent’ an ‘understood consent’ in hematopoietic cell transplantation? Bone Marrow Transplant 2015; 50: 10–14.

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  2. Forsyth R, Scanlan C, Carter SM, Jordens CFC, Kerridge I . Decision making in a crowded room: the relational significance of social roles in decisions to proceed with allogeneic stem cell transplantation. Qual Health Res 2011; 21: 1260–1272.

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  3. Scanlan C, Stewart C, Kerridge I . Decision making in the shadow of death. Am J Bioeth 2016; 16: 23–24.

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Acknowledgements

The publication describes research undertaken that was funded by the National Health and Medical Research Council, project grant number 457439.

Author contributions

CLS undertook the protocol design, interviews and analysis, manuscript writing, and approval of the final version of the article; CS undertook manuscript writing, and approval of the final version of the article; IK undertook protocol design, patient management, patient recruitment, manuscript writing, and approval of the final version of the article.

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Authors and Affiliations

  1. Centre for Values, Ethics and the Law in Medicine, University of Sydney, Sydney, NSW, Australia

    C L Scanlan, C Stewart & I Kerridge

  2. Sydney Law School, University of Sydney, Sydney, NSW, Australia

    C Stewart

  3. Haematology Department, Royal North Shore Hospital, Sydney, NSW, Australia

    I Kerridge

Authors
  1. C L Scanlan
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  2. C Stewart
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  3. I Kerridge
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Correspondence to C L Scanlan.

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The authors declare no conflict of interest.

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Scanlan, C., 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 52, 1658 (2017). https://doi.org/10.1038/bmt.2017.125

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