Telling Patients the Truth: A Case Study in Ethical Decision Making

1. Telling Patients the Truth: A Case Study in Ethical Decision Making Robert Scott Stewart, Ph.D. Professor of Philosophy Cape Breton University Scott_stewart@cbu.ca

2. Clinical Ethics Consultation • At CBDHA, a request for a clinical ethics consultation is sent to the Ethics Committee, currently chaired by Frances Butler. • Such requests can come from patients, health care workers, patients, or families.

3. A Method for Making Clinical Ethical Decisions • Michael MacDonald, UBC http://www.ethics.ubc.ca/upload/Framework2.pdf • Fair consultation process • Collect relevant facts and determine what ethical values are in play • See who will be affected by your decision, and how • Determining options and subjecting them to ethical tests • Make a decision

4. Consultation Process & Collecting the Facts • Hearing from everyone • Representative sample on the committee • Who will be affected by the decision and how • Literature Search

5. Values • Principlism and Normative Ethical Theory • Autonomy • Non-Maleficence • Beneficence • Justice • Kindness as a Virtue • Thomasma. (1994). “Telling Patients the Truth: A Clinical Ethics Exploration,” Cambridge Quarterly of Health Care Ethics 3: 375-382

6. Autonomy and Respect for Persons • Immanuel Kant and the special nature of human beings • Models of patient-physician relationship: the movement away from paternalism (Emanuel and Emanuel. (1992). “Four models of the physician-patient relationship,” JAMA 267 (16): 2212-2226 • In 1961, only 10% of physicians believed it was correct to tell a patient they suffered from a fatal cancer diagnosis. By 1979, 97% of physicians believed disclosure was correct. • Patients agree: In 1998, 90% said they would want to be told of a diagnoses of cancer or Alzheimer’s(Braddock. (1998). “Truth Telling and Withholding Information,” Ethics in Medicine)

7. Autonomy and Respect for Persons • The Consumer or Informative Model of the Patient-Physician Relationship • Patients provided more control over their health care. • To make their own decisions, patients must be given ‘adequate/appropriate/full’ information • Informed consent – avoiding battery

8. Non-Maleficence and Beneficence: Utility • Measuring costs and benefits: avoiding harms and improving benefits • Non-maleficence historically used as a basis for withholding truth • E.g., Mark Lipkin in 1979: (1) Patients don’t have requisite knowledge to be told “the whole truth.” • (2) placebo effect (Mark Lipkin. (1979). “On Telling Patients the Truth,” Newsweek 13).

9. Response to Lipkin • The responsibility of health care workers to communicate effectively • Respect for persons • “Most treatments for serious diseases require the full cooperation of the patient” (Cullen and Klein. (2000).”Respect for patients, physicians, and the truth,” In R. Munson, ed., Intervention and Reflection. (2004), 155-163) • Patient’s good in some situations may mean planning for their death. • Telling patient the truth is the “default” position, which can be overridden only in special circumstances.

10. “Offering the Truth” • “A patient’s knowledge of diagnosis and prognosis is not all-or-nothing. It exists on a continuum, anchored at one end by the purely theoretical ‘absolute ignorance’ and at the other by the unattainable ‘total enlightenment’. Actual patients are to be found along this continuum that vary in response to external factors (verbal information, non-verbal clues, etc.) as well as internal dynamics such as denials.” (B. Freedman. (1993). “Offering Truth,” Archives of Internal Medicine 153 (3) 572-576)

11. “Offering the Truth” • Begin by finding out what the patient knows (or suspects). • “It is important to hear from the patient himself or herself, so that [the health care team] can confirm what he or she knows or clear up any misunderstanding that may have arisen” (Freedman, 1993, 575). • Follow this by a series of steps toward full disclosure. • Be aware that some patients will NOT want to know and want the physician to make their decisions. This is okay.

12. Justice • Justice has both a substantive and procedural side. Substantive views of justice vary depending upon one’s political theory (Marxism, capitalism, socialism, etc.). In Canada, universal health care, so whatever policies we establish have to be available to all. • Procedural theory of justice: ‘Treat equals equally’ • Ethics of Justice vs Ethics of Care & Virtue Ethics

13. Kindness • Virtue Theory: Building Virtuous Character • Kindness and Friendship as Virtues • Trust and Honesty as ingredients of kindness and friendship

14. Concluding Remarks • Telling competent patients the truth is the default position. I.e., one has to provide an outstanding reason to withhold the truth from patients. • This policy can be defended on grounds of Autonomy/Respect for Persons; Utility/Non-Maleficence/Beneficence; Justice; and Kindness/Virtue. • Truth can be told in a process called “offering the truth.”