The Antidote to Hopelessness

Whenever I talk to physicians about why they don’t recommend hospice care sooner for their terminally ill patients, I often hear the same answer: “I don’t want to take hope away from my patients.” Hope is always connected to the future and to some outcome a person wants for themselves or others. The kind of hope physicians think is important to their patients is hope for a cure, or failing that, hope for life being prolonged. 

Naturally, there is nothing wrong with hope for either of those outcomes, accept when those forms of hope don’t make sense any longer. The problem is: when that time comes the physician doesn’t know how to back away from the hope they have been offering their patient up until then. 

Part of the appeal of hospice is the focus on another form of hope: comfort through the last days of life. While this is a worthwhile goal, in my mind it doesn’t address the real problem when the doctor finally admits that there is nothing more they can do: hopelessness. That feeling is the result of a sense of doom, a form of despair that comes from believing that death is now approaching much more quickly than previously believed. In fact, this is true, partly because the doctor has referred the person to hospice so late in the illness. People fear the word “hospice” because they see it as synonymous with the word “death.” 

What makes this feeling of hopelessness worse for the dying person, is the alienation from the rest of society—they see the family and the world going on without them, although they are still living. They feel powerless, a captive of the illness, ever-declining functionality, and even those taking care of them. 

There are no medications to address hopelessness. Even if the dying person is comfortable physically, hopelessness may overwhelm the quality of their life and make the dying process hell. But, there is another form of hope that can be offered the dying, and it is one of the cornerstones of the INELDA approach to end of life doula care: hope for finding meaning in the time one has left. 

Meaning and its corollary: legacy, can enrich the end phase of a person’s life right up to the time they will slip into active dying—and perhaps in some ways even through that time. This is why we at INELDA focus on the exploration of meaning and the creation of a legacy as central to the work we do in the time leading up to a vigil. 

Meaning and legacy work are the antidotes to despair that is the root of hopelessness. When engaged in these activities the dying person feels enlivened, they believe they still matter, and they don’t feel alienated. While they see the power ebbing out of their body, they recognize another form of power: the ability to continue to shape their impact on those around them, up to and even beyond their death.