How do you hope when you cannot “get your life back?” Does one have to give up hope to receive palliative care?
Rebecca Solnit, a contemporary American writer says, “To hope is to give yourself to the future - and that commitment to the future is what makes the present inhabitable.” Solnit says that hope for a specific outcome is a dead-end. Rather than closing in on something that well may be unattainable, hope is a posture of openness to possibility. It is a way of acknowledging you do not know what lies ahead.
Emily Dickinson wrote about hope:
“Hope is the thing with feathers
That perches in the soul
And sings the tune without the words
And never stops at all.”
Palliative care experts point out that hope changes over time. The hopes of late stage illness are not the hopes one may have with a fresh diagnosis. There is always something one can hope for and it is a sad myth that one has to give up hope to receive hospice or palliative care. The nature of hope may change but hope can remain to the end.
Margaret Mitchell, author of Gone with the Wind points out that, “Life's under no obligation to give us what we expect.” Authentic hope can admit this and lean into this reality. We can hope even if things we do not like happen, even if we do not feel we are control.
In an issue of the Harvard Business Review Brad Stuart writes:
“Hope is not a monolithic entity that lives or dies with the prospects for cure or recovery, but rather a process that unfolds as illness progresses — whether or not treatment is successful.”
In his article, Managing the Hopes of Seriously Ill Patients, Stuart does outline two different kinds of hope, which he describes as distinct phases. Focused hope focuses on the “outward tangible goals of cure or recovery.” Most people have to grieve a great deal when they realize there really is no magic pill or treatment and their illness will progress. Stuart believes that releasing focused hope makes room to experience intrinsic hope. He says this hope is focused on subjective goals like quality of life or a search for meaning. He points out this intrinsic hope is our birthright unless pressure from clinicians keep patients focused on further treatment.
To manage hope, Stuart says clinicians need qualities that are not necessarily emphasized in traditional medical training, like “deep empathy, the ability to reframe clinical setbacks, patience in the face of denial, compassion in the face of profound suffering, and the mental and emotional clarity to see through despair.”
Our next blog will focus on the toolkit for supporting hope through a difficult journey with serious illness.