Who is the Patient?
One may wonder, why the question “Who is the Patient?” Surely, the healthcare worker knows the answer when confronted with an ill person. But, in practice and ethically, the answer may not be so simple or well established. Take for example the young child who is too immature to be competent to understand and make decisions for him/herself. It is the parents who give the clinician the history and are responsible to care for the child. They are the ones sufficiently aware of the nature of the illness to suffer the emotional and financial consequences of their experience with their child and the knowledge of the illness and prognosis. Many pediatricians look to the family and child together as the “patient” and must evaluate and make treatment recommendations accordingly. Here, because the child is not competent, the autonomy rests with the parents.
Another example where the family is considered as the extended patient is in end-of-life hospice care. During the period when the patient is dying, it is often the family who has the potential for suffering, perhaps not in the same way as their ill family member, but suffering non-the-less. Those attending to the needs of the ill person must also attend to the needs of the family. A more prolonged scenario where the family and ill person become clinically integrated would be in Alzheimer’s disease. With Alzheimer’s the family may expend much finances, physical work and emotional attachment involved in the many years of responsibility for care. Other psychiatric illnesses may have similar family involvement but also there may be specific familial dysfunction, which directly contributed to the illness. Again, in these scenarios, the healthcare worker ideally should attend to the family in conjunction with management of the ill person.
In dealing with illness within some cultures, such as American Indians, for example, it is the family or the tribal group who takes the full responsibility for understanding and medical decision-making and thus have been looked upon as the “patient”. In all these examples of adult illness, what has happened to the ill person's autonomy?
As a final example here, genetic counselors consider the family as the patient and must determine why family members seek counseling, not just the person affected or potentially affected with the genetic disease.
Some sociologists and ethicists might even consider society to be included as the patient since it is felt that the physician should consider, in terms of the principle of justice, the effect of their management on, for example, the resources available to others.
The challenge to the practice of medicine by redefining and extending the concept of the patient to include the family and beyond is that it is also extending the limits of the medical responsibility of the physician. For example, while a procedure or treatment may not be medically appropriate for the ill person, if administered for the “whole patient” it could be argued that it might provide some emotional benefit and support for the family component.
Where do you think that a physician’s or other healthcare worker’s responsibility ends? With the ill person? Or with the family or even society? The philosopher Hans Jonas in 1969 had the answer: "the physician is obligated to the patient and to no one else .... We may speak of a sacred trust; strictly by its terms, the doctor is, as it were, alone with his patient and God." But,again, I ask "Who is the Patient?" ..Maurice.