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  • Print publication year: 2010
  • Online publication date: March 2012

32 - The ethics of research on pain and other symptoms for which effective treatments already exist

from 4 - Research and publication

Summary

This chapter presents a case study which analyzes whether physicians can end a patient's life at his or her request (as in euthanasia), or otherwise collaborate with the ending of life at a patient's initiative (as in assisted suicide). A request for euthanasia or assisted suicide is an emotionally taxing situation, where a thoughtful and respectful response is particularly important. Requirements for legal euthanasia or assisted suicide include that patients need to be capable of decision making and persistently requesting death, and that there be otherwise intractable suffering. Requests for aid-in-dying should be taken seriously and carefully listened to. Screening for and treatment of problematic symptoms and depression may lead to withdrawal of the request. When a request for aid-in-dying persists and no life-sustaining treatments are being employed, the response will depend on the legal status of euthanasia or assisted suicide, and on the physician's own convictions.

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References

1*The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research (1979); ICH Steering Committee (1996); CIOMS (2002); World Medical Association (2008); Department of Health and Human Services, (March 1983).
2 Moore, R. A., Edwards, J. E., and McQuay, H. J. (2005). Acute pain: individual patient meta-analysis shows the impact of different ways of analysing and presenting results. Pain, 116(3), 322–31.
3 Farrar, J. T., Young, J. P. Jr., LaMoreaux, L., et al. (2001). Clinical importance of changes in chronic pain intensity measured on an 11-point numerical pain rating scale. Pain, 94(2), 149–58.
4* Appelbaum, P. S., Lidz, C. W., and Grisso, T. (2004). Therapeutic misconception in clinical research: frequency and risk factors. IRB, 26(2), 1–8.
5* de Melo-Martin, I. and Ho, A. (2008). Beyond informed consent: the therapeutic misconception and trust. J Med Ethics, 34(3), 202–5.
6* Pautex, S., Herrmann, F. R., and Zulian, G. B. (2005). Is research really problematic in palliative care? A pilot study. J Pain Symptom Manage, 30(2), 109–11.
7* Todd, A. M., Laird, B. J., Boyle, D., et al. (2009). A systematic review examining the literature on attitudes of patients with advanced cancer toward research. J Pain Symptom Manage, 37(6), 1078–85.
8* Agrawal, M., Grady, C., Fairlough, D. L., et al. (2006). Patients’ decision-making process regarding participation in phase I oncology research. J Clin Oncol, 24(27), 4479–84.
9* Horrobin, D. F. (2003). Are large clinical trials in rapidly lethal diseases usually unethical?Lancet, 361(9358), 695–7.
10 World Medical Association (2008). Declaration of Helsinki: Ethical Principles for Medical Research Involving Human Subjects. Retrieved February 24, 2009, from http: //www.wma.net/e/policy/b3.htm (accesed October 3, 2006).
11* Emanuel, E. J. and Miller, F. G. (2001). The ethics of placebo-controlled trials – a middle ground. N Engl J Med, 345(12), 915–19.
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13* Kay, R. and Siriwardena, A. K. (2001). The process of informed consent for urgent abdominal surgery. J Med Ethics, 27(3), 157–61.

Further reading

CIOMS (2002). Guideline 4: Individual Informed Consent. International Ethical Guidelines for Biomedical Research Involving Human Subjects. Geneva: CIOMS.
Emanuel, E. J., Grady, C., Crouch, R. A., et al. (2008). The Oxford Textbook of Clinical Research Ethics. Oxford, New York: Oxford University Press.
Emanuel, E. J., Wendler, D., and Grady, C. (2000). What makes clinical research ethical?JAMA, 283(20), 2701–11.
Faden, R. and Beauchamp, T. (1986). A History and Theory of Informed Consent. Oxford, New York: Oxford University Press.
Grisso, T. and Appelbaum, P. S. (1998). Assessing Competence to Consent to Treatment. A Guide for Physicians and Other Health Care Professionals. New York: Oxford, Oxford University Press.
Hawkins, J. S. and Emanuel, E. J. (2005). Clarifying confusions about coercion. Hastings Cent Rep 35(5), 16–19.
International Association for the Study of Pain. Ethical Guidelines for Pain Research in Humans. http://www.iasp-pain.org.