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The Dual Nature of Hope at the End of Life

It is time for a new understanding of how clinicians discuss hope with patients with advanced illness. Traditionally, clinicians do whatever they can to support hope for recovery in their patients. However, many clinicians fear discussing poor prognoses honestly with their patients, families, and caregivers will destroy what we call focused hope, the tangible hope of recovery, and so delay these discussions until it is too late to make flexible treatment plans.

Focused hope is only one phase of a larger process. Once patients understand their disease process and prognosis, focused hope can be difficult to maintain. Transitioning away from focused hope is the first step in moving towards the emergence and growth of intrinsic hope.

Intrinsic hope is stronger and more durable than focused hope. It is more inwardly focused and addresses personal issues, such as caring about those who will be left behind. The lead investigator of a U.S. national clinical trial for acute leukemia in adults describes this state as “the peace, the comfort, the joy, and the sense of completion when a person chooses to live unencumbered by the demands of modern medical therapy.”

Open, honest communication among clinicians, patients, families and caregivers is vital. Avoiding these conversations due to fear or despair is a poor strategy. When the time is right, patients and their loved ones need to receive proper support to help intrinsic hope emerge.

Some clinicians instinctively have these conversations with patients near the end of life. Simply knowing about focused and intrinsic hope can help clinicians stay connected to their patients when therapeutic options run out. Training in these concepts is also emerging for clergy, community health workers, lay navigators and other non-clinicians as they increasingly assume roles that help patients make the challenging transition from treatable to terminal illness.

This post is excerpted from an essay published in BMJ Opinion, the full article is available here.

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