Truth Telling in Oncology

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In the Shadow of Hope

• Truth Telling in Oncology

Larry D. Cripe, M.D. Indiana University Melvin
and Bren Simon Cancer Center
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The Central ConversationOncologist and the
person with advanced cancer

• The pivotal importance of prescriptive authority
• Knowledge of the implications of the diagnosis
• Cultural norm

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Estimated Cancer Deaths1993
564,800
American Cancer Society
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Cancer care near the end of life
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Two critical goals of the central conversations
in oncology

• Disclosure of diagnosis
• Disclosure of prognosis

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The central tension in conversations with the
person with advanced cancer
Deception
Truth telling
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Physicians reported practice of disclosing the
diagnosis of cancer evolved, in the United
States, between 1960 and 1980
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Physicians attitudes to the disclosure of the
diagnosis of cancer
Novak (1979) JAMA 241897
Oken (1961) JAMA 1751120
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Origins of physicians attitudes to the
disclosure of the diagnosis of cancer
Oken (1961) JAMA 1751120
Novak (1979) JAMA 241897
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The evolution of physicians practice of
disclosing the diagnosis of cancer

• Legal and ethical expectations were articulated
  and applied to clinical encounters
• The discovery and development of anti-cancer
  interventions

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Clinical Research Ethics
Evolution in physician - patient relationship
The informed consent model of medical decision
making
Legal requirements of consent in clinical practice
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The informed consent model of medical
decision-making

• Withholding information deprived subjects of
  right of refusal or choice
• Clinical research, technology of transplantation
  and ICU in the best interest of whom?
• An autonomous, respected and fully-informed
  individual was necessary

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The informed consent model of medical
decision-making

• How well do oncologists do when the diagnosis is
  advanced cancer?

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Study of informed medical decision-making in
people with advanced cancer

• Possible goals of palliative chemotherapy
• Relief of symptoms
• Prolongation of life
• Likelihood of achieving goals decreases with each
  recurrence, thus supportive care with transition
  to end of life care may be appropriate

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Study of informed medical decision-making in
people with advanced cancer

• Observational study of initial consultations
  between oncologists and patients with advanced
  cancer
• Analysis of audiotapes with coding system devised
  to assess
• Information provided
• Estimates of prognosis
• Presentation of treatment options
• Encouragement to participate in decision-making

J Clin Onc. 2002 20503-513
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Study of informed medical decision-making in
people with advanced cancer
Gattellari (2002) 20 503 - 513
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Study of informed medical decision-making in
people with advanced cancer
Gattellari (2002) 20 503 - 513
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Disclosure of informationInformation provided
influences hopefulness
Sardell Cancer (1993) 723353
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End of Life Care Conversations

• What if the precepts of informed consent /
  decision making are not relevant to the choices
  people make about care when life will likely end
  from advanced cancer?

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What do the people we care for value in
communication?

• Three qualitative studies of interest
• Women with early stage breast cancer
• People with esophageal cancer after esophagectomy
• Patients enrolled on phase I trial

J Clin Onc. 2002 20503-513
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What do women with breast cancer value?

• Not communication skills such as
• Provision of information
• Provision of choice
• Enduring characteristics were important
• Demonstration of technical expertise
• Formation of individual relationships
• Demonstrated respect for the woman

BMJ. 2004 Online
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What about people who underwent esophagectomy?

• Cultural belief in surgical cure
• Enhancement of trust in referral process
• Idealization of the specialist surgeon
• Belief in expertise rather than medical
  information
• Resignation to the risks of treatment
• Acceptance of the expert recommendation as consent

J Thor Card Surg. 2000 120264-269
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Where does this leave us?

• Are the obligations of disclosure greater or
  less given that the decisions people make are not
  necessarily influenced by our ability to deliver
  information?

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Flaws of the informed consent model of medical
decision-making

• Refusal to provide consent is not the same as
  assenting to receive a medical intervention
• It is based upon an ethic of disclosure of
  information that is insensitive to the
  expectations of the people who prescribe or the
  people who receive medical care, that is our
  hopes

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Why did the reported practice of physicians
disclosing the diagnosis of cancer evolve, in the
United States, between 1960 and 1980?
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Your patient has no more right to all the truth
you know than he has to all the medicine in your
saddlebagsHe should get only just as much as is
good for himIt is a terrible thing to take away
hope, every earthly hope, from a fellow
creature.
Oliver Wendell Holmes Commencement Address
1871 Bellevue Medical School
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Physicians attitudes to the disclosure of the
diagnosis of cancer (1960)

• The modal policy was to tell as little as
  possible in the most general terms consistent
  with maintaining cooperation in treatment.
• some family member must be informedto
  dissuade patient from fruitless or unwise shifts
  to a new physician or (quack) only by cooperation
  of the informed relative.

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Physicians attitudes to the disclosure of the
diagnosis of cancer (1960)

• Every single physician interviewedhis resolute
  and determined purpose is to sustain and bolster
  the patients hope.
• and whether the expectation of death
  insurmountably deprives the patient of hope.
• No one can be told without giving up and losing
  all hope.

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Medical progress facilitated the disclosure of
the diagnosis of cancer
1980
1960
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Physicians attitudes to the disclosure of the
diagnosis of cancer (1980)

• Physicians believe they can offer their cancer
  patients more hope
• upsurge in interest in dyinga reduction in the
  fear that dying necessarily engenders a loss of
  hope
• sweeping social changesincreasing public
  scrutiny

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Physicians attitudes to the disclosure of the
diagnosis of cancer (1980)

• patients who agree to participate in research
  protocols must be told their diagnosis to satisfy
  the legal requirements of informed consent.

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What about the people we care for?

• An interesting personal experience
• The physician as patient arrogance
• Franz J. Inglefinger, M.D., 1977
• The trained observer as patient
• Donald Cohodes, 1995

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Countervailing forces in truth telling
Beneficence
Prognostic uncertainty
Hope
Respect for autonomy
Intrinsic good
Informed consent
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Countervailing forces in truth telling
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Where do we go from here?

• An informed participation model of medical
  decision making
• Sharing the moral burden of the consequences of
  the medical decision

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Informed participation model

• Explicit statement of recommendation and the
  reasons for recommendation
• Explicit affirmation by the patient that adequate
  opportunity was provided to participate in the
  decision process
• The document facilitates and memorializes the
  process

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Discursive properties of hope in advanced cancer
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Sharing the moral burden of the consequences of
the decision

• Avoidance of the implicit abandonment in medical
  intervention in advanced cancer
• A willingness to discuss the undesirable outcome
• resolute and determined purpose is to sustain
  hopefulness regardless of outcome

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In a journey of compassion what we have
ultimately as our guide is whatever understanding
we may have gained along the way of ourselves and
others, chiefly those close to us, so close to us
that we have lived daily in their sufferings.
From here on, then, in the blinding smoke it is
no longer a seeing world but a feeling
world--the pain of others and our compassion for
them.
Young Men and A Fire --Norman MacClean
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What is prognosis?

• Curability of disease
• Quantitative estimates of life expectancy
• Assessment of likelihood that intervention will
  modify outcome

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Accuracy of prognostication for people with
cancer admitted to hospice
Lamont (2001) 1341096
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Pattern of prognostic disclosure to people with
cancer admitted to hospice
Lamont (2001) 1341096