What Are Sources of Spiritual and Existential Suffering for Patients With Advanced Illness?

Introduction and Scope of the Problem

For all of the rightful concern in health care about the lack of attention to physical and emotional pain, spiritual and existential suffering may be the most universal and underrecognized component of the disease process. Sociologist Arthur Frank writes about his experience with heart disease and cancer: “From the perspective of the ill person, the root issue is suffering.” Dr. Daniel Sulmasy reminds us that “patient” comes originally from “patiens ,” which means “one who suffers.”

Certainly, physical and emotional pain contribute to suffering. However, this distress alone does not necessarily produce suffering. For example, one may be familiar with the small minority of patients who welcome their physical pain because they believe it is given to them by their God as a way of wiping out some amount of sin they have committed in their lives. This expiation, they believe, increases their chances of going to heaven. These patients are not suffering. Other patients suffer greatly with the same pain because they believe the pain indicates that their God has abandoned them. The difference is in the meaning the person gives to the pain rather than in the intensity of the pain itself. Some patients suffer because they are disconnected from that which is important to them—family, job, or even themselves. Other people with the same amount of pain maintain connections and so do not suffer.

The Clinical Practice Guidelines for Quality Palliative Care advise that religious, spiritual, and existential aspects of care constitute an essential domain that should be addressed in palliative care. This chapter outlines ways that members of the team caring for patients with advanced disease can ensure the assessment, diagnosis, and treatment of patients’ spiritual and existential suffering.

Definitions

The first step in understanding how patients may be suffering is to be familiar with the definition of the key terms of “spirituality,” “existential experience,” and “suffering.”