Right to Refuse
In light of yesterday’s Vatican letter clarifying the former Pope’s commentary on food and hydration for PVS patients, I offer a snippet of McCann et al’s 1994 JAMA article on comfort care for terminally ill patients:
While much attention has been focused on the rights of patients to refuse medical interventions, little has been written about the benefits that competent terminally ill patients may experience by exercising this right, particularly in regard to artificial feeding. We found that patients with terminal illness can experience comfort care despite minimal if any intake of food or fluids. This is consistent with the experience that others have had in caring for dying patients. Using a patient-centered team approach, we were able to direct our efforts toward each patient’s particular needs. ((McCann et al, Comfort Care for Terminally Ill Patients. JAMA, October 26, 1994. Vol 272, No 16.))
When you cannot communicate directly with the patient, you communicate with the caretakers and family. What then, is the benefit for these actual people you interact with, that these surrogate patients might receive and experience by exercising the right to refuse for the body/person they stand in for?
Part of the Catholic ruling is based on the notion that the PVS patient, unable to communicate with the world at large, is still able to communicate with the world internal, that is, with God, and we humans should not step around the authority of God to circumvent His will.
Looking at the ruling, we can see that the focus is, beyond this focus on fundamental human dignity (which is intimately tied to communion with God), the alleviation of suffering – or more specifically, the avoidance of causing suffering to begin with. But as McGee asked in a lecture given a year ago in front of a variety of students, and I tied into Cassell, what does it mean to suffer? Can a PVS patient suffer, if by definition of PVS we are saying there is nothing left to return? That the body has become a biologic husk, no longer a Being in the world as much as a Memory in the world? Doesn’t there need to be something there beyond chemical and biologic processes in order for there to be suffering? (And to keep Cassell in the picture, there is of course a difference between pain and suffering ((You can read me slightly misreading Cassell here)). Suffering is feeling, experiencing, while pain is ‘just’ the biological response. A sea anemone can ‘feel’ pain without suffering, and it’s an important distinction to make, and keep in mind.)
The letter from the Offices of the Congregation for the Doctrine of the Faith emphasizes the alleviation of suffering, but makes an error in focusing only on the potential suffering of the patient, while ignoring the entirely probable suffering of those around the patient, the affective whole of family and friends. It’s almost ironic, given the Catholic emphasis on non-individuality, that the letter and ruling itself focus on the individual to the detriment of the whole.