Practice Reflections: Ethical considerations for nurses working in rare cancer care: Focus on sarcoma
Abstract
Keywords: cancer, ethics, rare cancer types, oncology nursing care
Is rare cancer management a nursing ethics issue? A rare cancer is commonly defined as occurring in less than six people out of every 100,000 people (Drabbe et al., 2021). Treatment for rare cancer offers numerous challenges for patients such as a likely delay in diagnosis and difficulty finding a specialist (Drabbe et al., 2021). Patients with a rare cancer struggle to access information on their diagnosis, which may cause distress (Blay et al., 2016; Srikanthan et al., 2019). There is also less clinical trial-based evidence available in treating rare cancers (Drabbe et al., 2021; Van Der Graaf et al., 2022). In addition, it is difficult for these patients to find clinical trials in which to participate (Blay et al., 2016). Thus, there are fewer drugs for rare cancer, which likely contributes to the shorter overall survival for these patients (Kondo, 2021).
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Alberta Health Services. (2017). Soft-tissue sarcoma: Management of metastatic disease. https://www.albertahealthservices.ca/assets/info/hp/cancer/if-hp-cancer-guide-sar-003-management-soft-tissue-sarcoma.pdf
Ashley, D., Thomas, D., Gore, L., Carter, R., Zalcberg, J. R., Otmar, R., & Savulescu, J. (2015). Accepting risk in the acceleration of drug development for rare cancers. The Lancet Oncology, 16(4), e190–e194. https://doi.org/10.1016/S1470-2045(14)71153-2
Best, M., Newson, A. J., Meiser, B., Juraskova, I., Goldstein, D., Tucker, K., Ballinger, M. L., Hess, D., Schlub, T. E., Biesecker, B., Vines, R., Vines, K., Thomas, D., Young, M.-A., Savard, J., Jacobs, C., & Butow, P. (2018). The PiGeOn project: Protocol for a longitudinal study examining psychosocial, behavioural and ethical issues and outcomes in cancer tumour genomic profiling. BMC Cancer, 18(1), 389–389. https://doi.org/10.1186/s12885-018-4310-0
Blay, J.-Y., Coindre, J.-M., Ducimetière, F., & Ray-Coquard, I. (2016). The value of research collaborations and consortia in rare cancers. The Lancet Oncology, 17(2), e62–e69. https://doi.org/10.1016/S1470-2045(15)00388-5
Burningham, Z., Hashibe, M., Spector, L., & Schiffman, J. D. (2012). The epidemiology of sarcoma. Clinical Sarcoma Research, 2, 14. https://doi.org/10.1186/2045-3329-2-14
Canadian Association of Nurses in Oncology. (2023). Home page. https://www.cano-acio.ca/
Canadian Cancer Society (2015). Survival statistics for soft tissue sarcoma. https://cancer.ca/en/cancer-information/cancer-types/soft-tissue-sarcoma/prognosis-and-survival/survival-statistics
Canadian Institutes of Health Research. (2022). What are clinical trials? https://cihr-irsc.gc.ca/e/52988.html
Drabbe, C., Grünhagen, D. J., Van Houdt, W. J., Braam, P. M., Soomers, V. L. M. N., Van Der Hage, J. A., De Haan, J. J., Keymeulen, K. B. M. I., Husson, O., & Van Der Graaf, W. T. A. (2021). Diagnosed with a rare cancer: Experiences of adult sarcoma survivors with the healthcare system—results from the SURVSARC study. Cancers, 13(4), 679. https://doi.org/10.3390/cancers13040679
Ezeife, D. A., Truong, T. H., Heng, D. Y. C., Bourque, S., Welch, S. A., & Tang, P. A. (2015). Comparison of oncology drug approval between Health Canada and the US Food and Drug Administration. Cancer, 121(10), 1688–1693. https://doi.org/10.1002/cncr.29246
Farrell, C. (2016). Advanced nursing practice and nurse-led clinics in oncology. Routledge. https://doi.org/10.4324/9781315797502
Fountzilas, E., Said, R., & Tsimberidou, A. M. (2018). Expanded access to investigational drugs: Balancing patient safety with potential therapeutic benefits. Expert Opinion on Investigational Drugs, 27(2), 155–162. https://doi.org/10.1080/13543784.2018.1430137
Heynemann, S., Lipworth, W., McLachlan, S.-A., Philip, J., John, T., & Kerridge, I. (2023). When research becomes practice: The concept of the therapeutic misconception and challenges to consent in clinical trials. Internal Medicine Journal, 53(2), 271–274. https://doi.org/10.1111/imj.16015
Jordens, J., & Montgomery, K. (2018). Respecting patient autonomy: Some telling challenges for medical professionals who treat seriously ill patients. In K. Montgomery & W. Lipworth (Eds.) Medical professionals: Conflicts and quandaries in medical practice (1st ed., pp. 13-27). Routledge. https://doi-org.ezproxy.library.uvic.ca/10.4324/9780203712221
Kasper, B. (2021). The challenge of drug approval in rare cancers. Cancer, 127(6), 837–839. https://doi.org/10.1002/cncr.33314
Kondo, T. (2021). Current status and future outlook for patient-derived cancer models from a rare cancer research perspective. Cancer Science, 112(3), 953–961. https://doi.org/10.1111/cas.14669
Lee, S. (n.d.). Sarcoma. Canadian Cancer Society. https://cancer.ca/en/cancer-information/resources/glossary/s/sarcoma
Nash, R. R., & Wells, M. J. (2020). Ethical principles in the practice of medicine. In K. A. Mazur & S. L. Berg (Eds.), Ethical issues in pediatric hematology/oncology (pp. 19–35). Springer International Publishing. https://doi.org/10.1007/978-3-030-22684-8_2
National Cancer Institute. (n.d.). Driver mutation. https://www.cancer.gov/publications/dictionaries/cancer-terms/def/driver-mutation
Newson, A. J., Leonard, S. J., Hall, A., & Gaff, C. L. (2016). Known unknowns: Building an ethics of uncertainty into genomic medicine. BMC Medical Genomics, 9(1), 57–57. https://doi.org/10.1186/s12920-016-0219-0
Nielsen, Z. E., & Berthelsen, C. B. (2019). Cancer patients’ perceptions of factors influencing their decisions on participation in clinical drug trials: A qualitative meta-synthesis. Journal of Clinical Nursing, 28(13–14), 2443–2461. https://doi.org/10.1111/jocn.14785
Phillips, R. S., Vaarwerk, B., & Morgan, J. E. (2022). Using evidence-based medicine to support clinical decision-making in RMS. Cancers, 15(1), 66. https://doi.org/10.3390/cancers15010066
Srikanthan, A., Leung, B., Shokoohi, A., Smrke, A., Bates, A., & Ho, C. (2019). Psychosocial distress scores and needs among newly diagnosed sarcoma patients: A provincial experience. Sarcoma, 2019, 5302639–8. https://doi.org/10.1155/2019/5302639
Starzomski, R., Storch, J. L., Rodney, P., & Nancy, C. (2023). Nursing ethics: Developing a moral compass for leadership. In R. Starzomski, J. L. Storch & P. Rodney (Eds.), Toward a moral horizon: Nursing ethics for leadership and practice (3rd. ed., pp. 17-58). University of Victoria Libraries. https://dspace.library.uvic.ca/handle/1828/14970
Strzebonska, K., & Waligora, M. (2019). Umbrella and basket trials in oncology: Ethical challenges. BMC Medical Ethics, 20(1), 58–58. https://doi.org/10.1186/s12910-019-0395-5
Van Der Graaf, W. T. A., Tesselaar, M. E. T., McVeigh, T. P., Oyen, W. J. G., & Fröhling, S. (2022). Biology-guided precision medicine in rare cancers: Lessons from sarcomas and neuroendocrine tumours. Seminars in Cancer Biology, 84, 228–241. https://doi.org/10.1016/j.semcancer.2022.05.011
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