To Disclose or To Not Disclose: Nursing and the Ethics of Nondisclosure in the Dying Patient Kally L. Price Samuel Merritt University Abstract In nursing, the practice of nondisclosure is an ethical issue that calls into question the founding principles of trust, integrity, and autonomy in the nurse-patient relationship. Although the decision of nondisclosure to the terminal patient is the physician’s, the nurse must follow and support this decision.
The right of the patient to have control over their own healthcare information, and their right to know their diagnosis and prognosis and make treatment decisions are supported by the American Hospital Association, The Patient Self Determination Act, which requires education on advanced directives, California’s 2008 Terminal Patients’ Right to Know End-of-Life Options Act, and by the practices of obtaining informed consent before any procedure/surgery (Cochella & Pederson, 2003, Krisman-Scott, 2000).
The dying patient deserves the right to know their condition so they can make preparations (financial, spiritual and personal and interpersonal) for death and make appropriate treatment decisions. To Disclose or To Not Disclose: Nursing and the Ethics of Nondisclosure in the Dying Patient i. Introduction In medical practice, disclosure refers to the physician’s act of revealing a diagnosis, treatment options, risks, and prognosis to the patient.
Therapeutic nondisclosure (sometimes called therapeutic privilege) is the act of a physician withholding a diagnosis or prognosis because the patient is perceived to be psychologically or emotionally incapable of coping with the news. Therapeutic nondisclosure can also refer to the withholding of a diagnosis or prognosis for other reasons, such as familial request, which often involves cultural considerations. (Goldberg, McCabe, Wood, 2009) In Oken’s 1961 study of 218 physicians, 90% did not disclose cancer diagnoses to patients.
The ethical principle of nonmaleficence, to not cause harm, might guide the physician’s decision to not disclose a patient’s terminal status (Black & Chitty, 2011). For centuries, physicians believed that disclosure of the terminal nature of an illness would cause the patient’s condition to decline (Krisman-Scott, 2000). However, Kubler-Ross and Glaser and Strauss methodically studied dying patients and found that while the patient’s first reaction to a terminal diagnosis is adverse, it later shifts to a more positive view.
Additionally, Feifel’s 1960’s study of 60 dying patients found that 82% would like to be made aware about their health information and diagnosis (Krisman-Scott, 2000). ii. Thesis The nurse’s relationship with the patient is based on trust. In the Gallup poll for the last 8 years, nurses were selected as the most trustworthy professionals (Jones, 2009), showing that American society on the whole trusts nurses. When a nurse is caring for a terminal patient, the nurse witnesses patient’s health growing progressively worse.
Under nondisclosure, the nurse must maintain the guise that there is hope for recovery (Krisman-Scott, 2000). The nurse would be unable to acknowledge or help the patient prepare for the impending death. Even if the dying patient may not be able to move toward better health, they still deserve the same opportunity to prepare themselves (financially, personally and spiritually and interpersonal) and their loved ones for their death. The purpose of this paper is to outline some of the ethical issues surrounding nondisclosure in the healthcare of the terminally ill and to look at some of the ways the ethical issues affect nurses.
A patient’s personal medical care is collaborative venture between the patient and their doctors, nurses, and healthcare team. Patients must be able to make informed decisions in regards to their medical treatment. The practices of informed consent and education on advanced directives (as required by The Patient Self-Determination Act) reinforce the rights of the patient to stay informed and to play a central role in the decision making process in their end of life medical care (Cochella & Pederson, 2003).
In order to get the terminal patients on board for a risky treatment modality, the gravity of their illness must be put into the balance in order for the patient to make an informed decision (Krisman-Scott, 2000). iii. Analysis It is central to the role of nursing to recognize the patient’s autonomy, their ability to participate in their own healthcare regimen and power to move themselves to independence and better health (Black & Chitty, 2011). The American Hospital Association acknowledges the patient’s right to their healthcare diagnosis and treatment options (Black & Chitty, 2011).
California’s 2008 Terminal Patients’ Right to Know End-of-Life Options Act requires physicians, upon request, to fully disclose all end-of-life care options including: voluntary stopping of eating and drinking, refusal or withdrawal of life extending measures, and hospice, palliative care and sedation (Morrow, 2008). The Code of Ethics for Nurses (Provision 3) requires that nurses support and speak for the rights of the patient (American Nurses Association, 2001). iv. Conclusion
Because there is great variability in personal values on the subject of right to know, there needs to be a professional set of values in place for the physician that overrides this variability in personal values. This set of standards would serve an ethical framework to reference, as well as a procedure to follow if physicians need guidance. One strategy developed for the physician to use in handling requests for nondisclosure by the family was proposed by Dr Hallenbeck.
The most important step in this strategy is to have a discussion with the patient about their preference: whether they want to stay fully informed of their medical condition and to manage their healthcare decisions, or if they want to have another act on their behalf (Cochella & Pederson, 2003, Hallenbeck & Arnold, 2007). The requirement of physicians to consult with their patients on this simple question of their desire to stay informed could be used with any dilemma involving nondisclosure.
By asking the patient their desires, the physician could give them the option to maintain direct knowledge and participation in their healthcare, thus honoring the patient’s ethical right to autonomy. Participating in the care of a terminally ill patient who do not know their own medical condition through nondisclosure is an ethical issue for many nurses. Given the power structure within hospitals, the nurse doesn’t have much authority to enact change (Cochella & Pederson, 2003).
If nurses find themselves in a position witnessing or having to take part in a nondisclosure which they believe is unethical, they can contact the hospital authorities, or the board of ethics to review the case.