Clinicians often withhold information about disease progression and prognosis for fear of destroying their patients’hopes. Hope is not a monolithic entity that lives ordies with the prospects for cure or recovery, but rather a process that unfolds as illness progresses, whether or not treatment is successful.
Managing hope is different from managing treatment Patients and families facing the end of life are emotionally vulnerable. It’s more compassionate and more effective to be unconditionally present and to help patients’ hopes evolve in a gentle and compassionate way. Managing hope requires some important qualities in clinicians qualities that aren’t usually emphasized in traditional medical training.
Some principles and practices include:
RELIEVING PAIN AND OTHER SYMPTOMS.
Unrelieved pain triggers hopelessness, whereas controlling pain allows intrinsic hope to emerge. Hospice and palliative care providers are trained to do this.
ASKING EMPHATIC QUESTIONS.
When the news is that illness is incurable, certain questions can assist patients on the journey from focused to intrinsic hope questions like “What do you hope to gain from treatment?” and
“What do you hope we can help you with?”
HELPING THE BODY BE THE TEACHER.
Downturns and new symptoms are distressing, but they often contain useful information that
clinicians can use to help patients through denial.
LEANING ON THE DOOR.
If the message the clinician is trying to deliver triggers denial, trying to break the door down can be counterproductive. Instead, knocking gently and, when the door opens a crack, continuing the conversation at the patient’s own pace, perhaps over several encounters, builds trust.
LEARNING TO SEE IN THE DARK.
Compassion means standing unflinchingly with patients, letting them know that the clinician can tolerate the very situation they find intolerable — so perhaps, over time, they can too. This kind of silent courage is contagious.
SEEING THROUGH TO THE OTHER SIDE OF DESPAIR.
Depression is a clinical syndrome that should be detected and treated, but despair is different. Despair may be seen as the ultimate form of letting go, a necessary step in healing when a cure is impossible and a rehearsal for the ultimate release that will happen at the time of death. (Brad Stuart is a general internist who created the conceptual model for the first advanced illness management program in the United States.)