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Guidelines for Disclosure and Discussion of Conditions and Events with Patients, Families and Guardians

From: Kennedy Institute of Ethics Journal
Volume 11, Number 2, June 2001
pp. 165-168 | 10.1353/ken.2001.0019

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Kennedy Institute of Ethics Journal 11.2 (2001) 165-168

UPMC Presbyterian Policy and Procedure Manual

I. Introduction and Background

In the course of hospital care, an extensive amount of clinical information is generated. It includes diagnostic findings, treatment options, responses to interventions, and professional opinions. The information can be positive or negative. Clinical events may or may not be caused by clinicians and consequently may be iatrogenic (caused by medical treatment), nosocomial (occurring in the hospital) or natural events.

In accordance with the informed consent policy (#4011), Patients' Bill of Rights (# 0154, Section II H), and the Guidelines on Forgoing Life Sustaining Treatment (#4007), patients have the right to information regarding their condition and care. Physicians and other caregivers are obligated to provide accurate information as expeditiously as possible. While it is usually easy to provide positive information, negative information is more difficult to disclose, especially when the cause is iatrogenic.

"Therapeutic privilege" has been invoked to explain why certain negative information might be withheld. By invoking therapeutic privilege, the physician refrains from full disclosure to protect the patient from the effects of receiving the information itself. The use of therapeutic privilege is increasingly being called into question because it decreases patient autonomy and reduces trust.

The following recommendations are provided to clinicians to help guide delivery of sensitive information, positive and negative. Specific recommendations are provided for situations where the information is about an unfavorable or adverse event, or where the information might best be characterized as "bad news."

II. Definitions

Unfavorable event or unfavorable condition. For the purposes of these guidelines, an unfavorable condition is an occurrence or diagnosis that results in or is likely to result in a significant negative outcome, and/or a significant alteration in the care plan.

An unfavorable event in this context is not the same as a sentinel event, which in policy #4025 is defined as, "a serious, unexpected, adverse patient event which has resulted in, or if repeated would have a significant probability of resulting in, loss of life or serious physical or psychological injury, that is judged to be a warning of an underlying problem involving hospital facilities, policies, procedures, systems or personnel."

Adverse Event. An unfavorable event for the purposes of these guidelines is also distinguished from the FDA definition of the term "adverse event", which is a reportable negative effect of a drug or device potentially resulting in death, hospitalization, or medical or surgical intervention. (See policy #4022 Safe Medical Device Act.)

Examples of unfavorable events or conditions for the purpose of these guidelines include a new diagnosis of cancer, a perioperative myocardial infarction, or unintended delivery of an incorrect medication that results in clinical change.

Examples of events not covered by these guidelines are intravenous saline infiltration and medication dosing errors that have no clinical impact on care.

Iatrogenic. Event caused by the treatment of a healthcare provider.

III. Guidelines and Principles

It is appropriate that UPMC Presbyterian support basic principles for patient and family notification regarding all clinical events and conditions, including unfavorable ones. Physicians must be honest because that is a cornerstone of the patient-physician relationship, and because it fosters patient autonomy.

UPMC Presbyterian supports the following AMA position regarding patient information:

It is a fundamental ethical requirement that a physician should at all times deal honestly and openly with patients. Patients have a right to know their past and present medical status and to be free of any mistaken beliefs concerning their conditions. Situations occasionally occur in which a patient suffers significant medical complications that may have resulted from the physician's mistake or judgement. In these situations, the physician is ethically required to inform the patient of all the facts necessary to ensure understanding of what has occurred. Only through full disclosure is a patient able to make informed decisions regarding future medical care.
Ethical responsibility includes informing patients of changes in their diagnoses resulting from retrospective review of test results or other information. This obligation holds even though the patient's medical treatment or therapeutic options may not be altered by the new information.
Concern regarding legal liability which might result following truthful disclosure should not affect the physician's...

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