“Who has seen the wind? Neither you nor I; but when the trees bow down their heads the wind is passing by.” Christina Rossetti

On a rigorous climb to Máméan in Connemara, Ireland last summer, a hearty band of us passed a lone scrub tree, clinging to the rocky hillside. Its branches were windblown into a straight-line pattern, and the appearance reminded me of a long-haired person standing, defiant in a gale-force wind. To me, it symbolized tenacity.

How often folks take a stubborn stance as they approach the ends of their lives because of chronic, progressive illness. People frequently cling desperately to the last heartbeat, the last breath our bodies can sustain. For many, death represents a great defeat, and it needs to be postponed for as long as possible, at all costs.

I propose that such tenacity might sometimes be reflexive rather than intentional. What would happen if one’s tenacity were focused on maintaining one’s identity, one’s unique qualities of self, for as long as possible? I suspect priorities might change, and that quality of life would assume center stage while living an extra week, or a few extra months might become less important.

Potentially, each of us has these choices, these decisions to make as we acknowledge the consequences of living with progressive serious illness. Unfortunately, the healthcare system doesn’t always provide information to allow patients and their families the permission to make these choices.

In medical terms, such decisions are called Goals of Care. Cultural norms, personalities, styles of living, family dynamics, and severity of symptoms all play important roles in generating an individual’s Goals of Care. Just as we as individuals are unique, so should our Goals of Care reflect the values and singular characteristics that coalesce in making each of us one of a kind. There are communication guides that can help craft Goals of Care that feel authentic. I’ll be elaborating on this topic in future articles.

SL Hines, MD
April 2016