Hope, denial and ethics of care
"Someone has to give this patient a dose of reality therapy –- she thinks she's getting better!" exclaimed the physician after trying to discuss advance wishes with a seriously ill patient. In this scenario, the physician felt his patient's denial, expressed in her hope for recovery, prevented her from facing her illness, appreciating the implications and exercising her autonomy.
The patient and her physician were not in agreement about her poor prognosis. After expressing his frustration to me, the physician later acknowledged with sadness how much he cared about her and her struggle.
For many people, hope is a source of sustenance in the face of tragic circumstances – it is programmed into their souls. "Where there is life, there is hope" is an expression often coined by people facing the loss of a loved one. Underlying such expressions of hope can also be a tacit understanding that the hoped-for outcome will not be realized. Expressions of hope when the facts suggest otherwise may seem disturbingly inappropriate to those who believe that one must face the truth and accept reality.
A study conducted with dying patients concluded that "hope is based on something other than prognosis, or is a concept that suggests a greater emotional component than mere expectation, and is seen as an active process of conscious and unconscious meaning" (Chochinov, 2006).
Patients with a life threatening illness may refuse to discuss a poor prognosis, holding onto hope until the very end for a variety of reasons. Everyone has heard at least one story about a patient who defied the statistics, miraculously outliving by years his/her projected survival time. In the face of all this, health care professionals are obligated to provide their patients with pertinent health information, to do no harm and to maximize the benefit to the patient in the care that is provided.
How can such important ethical obligations be met when a patient with a poor prognosis maintains her spirit of hope and does not wish to discuss advance care wishes?
Care providers need to understand what hope means to their patient. Is hope expressed for the benefit of loving family members, to protect a spouse or child from emotional pain or anxiety?
Can hope in the face of serious illness reflect the way this person has always faced and overcome adversity? Does hope stem from deeply held religious values about divinely inspired healing or salvation?
Hope can serve an important role in the spiritual, emotional, psychological and relational experience of having a serious illness. Health care providers can support patients by providing information sensitive to the patient's readiness to hear this information.
However, there may be information that must be shared due to issues of safety, informed consent or according to law. Although capable, some patients prefer that a relative or loved one receive health information and participate in care decisions. Patients should be asked the kind of information they are prepared to receive and, where appropriate, whether a loved one could be told instead.
Ultimately, these discussions addressing hope, prognosis and care require certain essential caregiver qualities. These qualities include an unhurried, sensitive and sincere engagement with the patient, and an interaction based on acceptance of the patient as she is, not as one would prefer her to be.
