Journal of the American College of Surgeons
Volume 196, Issue 3 , Pages 469-474 , March 2003

Ethical considerations and barriers to research in surgical palliative care

  • Robert S Krouse, MD

      Affiliations

    • Department of Surgery, Southern Arizona Veteran’s Affairs Health Care System and the University of Arizona, Tucson, AZ, USA (Krouse)
    • Corresponding Author InformationCorrespondence address: Robert S Krouse, MD, Department of Surgery, Southern Arizona Veteran’s Affairs Health Care System and the University of Arizona, 3601 S 6th Ave, Tucson, AZ 85723, USA.
    • ,
  • Alexandra M Easson, MD, FRCSC, FACS

      Affiliations

    • Division of Surgical Oncology, Princess Margaret Hospital, University Health Network, Toronto, Ontario, Canada (Easson)
    • ,
  • Peter Angelos, MD, PhD, FACS

      Affiliations

    • Department of Surgery, Northwestern University, Chicago, IL, USA (Angelos)

Received 4 December 2002 ,Accepted 4 December 2002.

References 

  1. McCahill LE, Krouse RS, Chu DZJ, et al.  Decision making in palliative surgery. J Am Coll Surg. 2002;195:411–423
  2. Kristjanson LJ, Hanson EJ, Balneaves L. Research in palliative care populations (ethical issues). J Pall Care. 1994;10:10–15
  3. Casarett DJ, Karlawish JHT. Are special ethical guidelines needed for palliative care research?. J Pain Symptom Manage. 2000;20:130–139
  4. Rees E. The ethics and practicalities of consent in palliative care research (an overview). Int J Pall Nurs. 2001;7:489–492
  5. Lawton J. Gaining and maintaining consent (ethical concerns raised in a study of dying patients). Qual Health Res. 2001;11:693–705
  6. Warren JW, Sobal J, Tenney JH. Informed consent by proxy. An issue in research with elderly patients. N Engl J Med. 1986;315:1124–1128
  7. Doyal L. Informed consent in medical research. BMJ. 1997;314:1107–1111
  8. Hekkenberg RJ, Irish JC, Rotstein LE, et al.  Informed consent in head and neck surgery (how much do patients actually remember?). J Otolaryngol. 1997;26:155–159
  9. Saw KC, Wood AM, Murphy K, et al.  Informed consent (an evaluation of patients’ understanding and opinion (with respect to the operation of transurethral resection of prostate)). J Royal Soc Med. 1994;87:143–144
  10. Priluck IA, Robertson DM, Buettner H. What patients recall of the preoperative discussion after retinal detachment surgery. Am J Ophthalmol. 1979;87:620–623
  11. Robinson G, Merav A. Informed consent (recall by patients tested postoperatively). Ann Thorac Surg. 1976;22:209–212
  12. Lloyd A, Hayes P, Bell PR, Naylor AR. The role of risk and benefit perception in informed consent for surgery. Med Decis Making. 2001;21:141–149
  13. Godwin Y. Do they listen? A review of information retained by patients following consent for reduction mammoplasty. Br J Plast Surg. 2000;53:121–125
  14. Krupp W, Spanehl O, Laubach W, Seifert V. Informed consent in neurosurgery (patients’ recall of preoperative discussion). Acta Neurochirurgica. 2000;142:233–238
  15. Hutson MM, Blaha JD. Patients’ recall of preoperative instruction for informed consent for an operation. J Bone Joint Surg. 1991;73:160–162
  16. Leeb D, Bowers DG, Lynch JB. Observations on the myth of “informed consent”. Plast Reconstr Surg. 1976;58:280–282
  17. Bruera E. Ethical issues in palliative care research. J Pall Care. 1994;10:7–9
  18. Marshall E. Panel faults research consent process. Science. 1995;270:25
  19. Janssens R, Gordijn B. Clinical trials in palliative care (an ethical evaluation). Patient Educat Counsel. 2000;41:55–62
  20. Twycross R, Dunn V. Research in palliative care: The pursuit of reliable knowledge. Occasional Paper 5. London: NCHSPCS; 1994;
  21. Hall JC, Hall JL. Randomization in surgical trials. Surgery. 2002;132:513–518
  22. Wells SA. Invited commentary (surgeons and surgical trials—why we must assume a leadership role). Surgery. 2002;132:519–520
  23. Casarett D. ‘Randomize the first patient’ (old advice for a new field). AAHPM Bull. 2002;2:4–5
  24. Macklin R. The ethical problems with sham surgery in clinical research. N Engl J Med. 1999;342:992–996
  25. Johnson AG. Surgery as a placebo. Lancet. 1994;344:1140–1142
  26. La Vaque TJ, Rossiter T. The ethical use of placebo controls in clinical research (the Declaration of Helsinki). Appl Psychophysiol Biofeedback. 2001;26:17–21
  27. Moseley JB, O’Malley K, Petersen NJ. A controlled trial of arthroscopic surgery for osteoarthritis of the knee. N Engl J Med. 2002;347:81–88
  28. Sunshine J. Federal research helps debunk time-honored myths. Federal Practitioner. 2002;19:47–48
  29. Horng S, Miller FG. Is placebo surgery unethical?. N Engl J Med. 2002;347:137–139
  30. de Raeve L. Ethical issues in palliative care research. Pall Med. 1994;8:298–305
  31. Mount BM, Cohen R, MacDonald N, Bruera E. Ethical issues in palliative care research revisited. Pall Med. 1995;9:165–166
  32. Clark D, Ingleton C, Seymour J. Support and supervision in palliative care research. Pall Med. 2000;14:441–446
  33. Kaasa S, De Conno F. Palliative care research. Eur J Cancer. 2001;37:S153–S159
  34. McCulloch P, Taylor I, Sasako M, et al.  Randomized trials in surgery (problems and possible solutions). Br Med J. 2002;324:1448–1451
  35. Krouse RS, Ferrell BR, Uman GC, et al.  Important ethical dilemmas and barriers in palliative care. Program/Proceedings of the American Society of Clinical Oncology. 2002;21:373a
  36. In:  Foley KM,  Gelband H editor. Improving palliative care for cancer, summary and recommendations. Washington, DC: National Cancer Policy Board, Institute of Medicine and National Research Council, National Academy Press; 2001;
  37. Kim P, Love G, Weiss M, et al. Cancer survivorship across the continuum: the call of discovery, definition and delivery. National Cancer Institute’s Director’s Consumer Liaison Group, Survivorship Working Group, April 22, 2002
  38. Baskin SA, Morris J, Ahrohmeim JC, et al.  Barriers to obtaining consent in dementia research (implications for surrogate decision-making). J Am Geriatr Soc. 1998;46:287–289
  39. English DC. Valid informed consent (a process, not a signature). Am Surg. 2002;68:45–48
  40. Rhymes JA. Barriers to palliative care. Cancer Control. 1996;3:230–235
  41. Casarett DJ, Karlawish J, Hirschman KB. Are hospices ready to participate in palliative care research? Results of a national survey. J Pall Med. 2002;5:397–406
  42. Casarett D, Ferrell B, Kirschling J, et al.  NHPCO task force statement of the ethics of hospice participation in research. J Pall Med. 2001;4:441–449

PII: S1072-7515(02)01890-2

doi: 10.1016/S1072-7515(02)01890-2

Journal of the American College of Surgeons
Volume 196, Issue 3 , Pages 469-474 , March 2003

Article Tools