Requests to Withhold the Truth at the End of Life

Requests to Withhold the Truth at the End of Life

Dr Paulina Taboada
Profesor Centro de Bioetica
Pontificia Universidad Catolica de Chile
Alameda 340 Correo Central 1
Santiago, Chile

A frequent ethical dilemma in Cancer Medicine is the question of truthfulness with terminally ill cancer patients. Reluctance to share the truth with the patient about his or her diagnosis or prognosis are often associated with cultural differences. While in developed countries in the 1970’s there was a massive movement from non-disclosure to full disclosure of diagnosis and prognosis, in many regions of Europe, Japan, and developing countries, the pattern continues to be predominately that of non-disclosure of diagnosis and prognosis.

The ethical question I shall briefly analyze in the following is whether family’s requests to withhold the truth about the diagnosis or prognosis to a patient can be ethically acceptable. Further ethical questions are tightly related to the previous one, such as: Should a physician respect a family’s request not to disclosure a patient the truth about his or her diagnosis and prognosis? Does a family have a right to make such a request? Do patients have a right not to know their diagnosis and/or prognosis?

One of the main arguments for the family member’s requests to withhold the truth to the patient is based on the assumption that truth disclosure will induce serious anxiety and depression, causing a real harm to the patient. Indeed, detailed disclosure has been shown to increase anxiety in the short term (Simes et al., 1986). Nevertheless, follow-up reveals that the excess of anxiety dissipates within a few weeks, whereas the effects of limited information on psychological adjustment may persist (Followfield, 1987; Devlen, 1987). On the other hand, evasion and lying isolate the patients behind either a wall of words or a wall of silence that prevents a therapeutic sharing of the patient’s fears, anxieties, and other concerns (Twycross, 1998).

Hence, while relatives may regard truth telling as something potentially harmful to the patient, medical professionals tend to consider it to be part of their duty of beneficence. They think that by explaining the truth about diagnosis, prognosis, and treatment options to the patients the basis for a good professional relationship and for the exercise of freedom is generated. Under this perspective, deception appears to be harmful, both because it may destroy the foundations of the interpersonal relationship that allows a doctor to "do good" (beneficence) and because it prevents the patient from making personal free and informed choices.

But if the physician believes that it is not possible to offer good care without a prior commitment to openness and honesty and goes on communicating the clinical information to the patient against the family’s desire, he or she may be accused of an "assault of truth", i.e., of imposing the truth to a patient. The risk thereby is to interfere with the patient’s coping mechanisms, as determined by his or her personality or cultural background. In fact, we know that in the context of truth telling, in some ethnic groups the delegation of authority is culturally implicit.

This contrast in moral perspectives often underlies the ethical dilemma posed by requests to withhold the truth at the end of life. The apparently conflicting ethical principles are non-maleficence (or beneficence) and autonomy. How can medical ethics help in solving this apparent value-confrontation? Can we simply say that the problem here is one of cultural and ethnic differences with regard to truth telling?

I think that a personalist approach shows that the confrontation between beneficence and autonomy often stressed with regard to truth telling in the context of terminally ill patients – especially if they belong to different cultures or ethnic groups – proves to be more apparent than real. Indeed, the ethical principle of autonomy is grounded in respect for the person and the acknowledgment that as rational beings we have the unique capability to make reasoned choices. But there are different styles of decision-making that can be – in principle – equally respectful for patient’s autonomy. One style may be referred to as "patient-based" model, and the other one as "family-based" style. But in spite of cultural and ethnic diversities, autonomy can still be said to be valid and universal principle in relation to truth disclosure because it is based on what it is to be a person and in the respect due to each person as person (personalist principle). What actually varies among different ethnic groups and cultures is the way in which the respect for a person’s freedom is best exercised: the communication and decision-making "styles".

In order to respect the patient’s autonomous choice it is mandatory to explore carefully his or her preferences with regard to communication and decision-making style. As in our days patients transplanted to other cultures for health care is more common due to globalization, to preserve both autonomy and beneficence, physicians must get to know their patients well enough to discern when, and if, those patients wish to know about their clinical condition, as well as the communication and decision-making style they prefer. Nevertheless, to state that competent human beings are owed the freedom to choose the communication and decision-making style they prefer, and to define beneficence in terms of their own values, is not equivalent to say that all values are morally equivalent or defensible, nor than physicians are mere servants of patient’s desires. What is actually affirmed is that as human beings we are owed respect for the choices we voluntarily make. But this applies obviously both for patients as well as for health care providers. Thus, if a patient or a family requests a path of actions that clearly violates the standards of care, the professional ethos or the law, the attending physician is free to reject the request, provided he or she will not abandon the patient. It becomes evident that a personalist approach to clinical ethics provides good insights for dealing with cultural and personal differences between patients and health care professionals.

Dr. Paulina Taboada, MD, PhD
Palliative Care and Bioethics