Watching someone waffle between hope and despair is a heart-wrenching spectacle. Having the benefit (or is it a curse?) of a healthcare education, she can see what’s happening to someone she loves and idolizes. She is suspicious that the specialist may not be sharing all the options with her family, yet she’s hesitant to question the physician for fear of taking away the glimmer of hope she sees her loved one clinging to. Of course she doesn’t want her parent to die but she also understands that everyone does … and especially when she sees the signs so blatantly in front of her. Her agenda is to allow loved ones to cling to their hope while she prays that the doctor will soon address the elephant in the room.
The physician, she says, has never spoken of anything except another round of treatment. There has never been a compassionate discussion with the patient and family about goals beyond treatment. There has been no recommendation of a palliative care consult for pain and symptom management. This specialist’s agenda is to follow the treatment trail until it ends, either peacefully or, more likely, in a hospital as a last ditch effort to count one more day on this earth.
The spouse of the patient knows something is amiss yet she doesn’t question the physician. She and the patient are of the generation when the doctor knows best and you don’t question authority. She recognizes her husband’s decline and fears for her own usefulness when he is gone. He is her primary caregiver and her lifelong partner. Her agenda is to love him until his final breath and not allow him to know her worry for her future without him.
There are still others involved in this scenario with agendas of their own in the care of this patient and his family. Some have the best intentions but are restricted by the nature of their position. Still others may struggle with the moral or ethical question of when to share information with the patient without the physician’s authorization. (A suggestion of hospice is often overruled by reasoning such as “not appropriate,” “not there yet,” or “too soon for that.”) Some are friends of the daughter and offer suggestions and guidance based on similar paths they’ve walked. Some are professional healthcare colleagues, not involved directly with this patient, who are ready to support whatever decisions the family makes.
The most important person whose agenda is not addressed in this scenario is the patient himself. The assumption is that he’s clinging to hope for himself when in reality he may be sharing the same worries of his wife – what will happen to her when he’s gone? He is likely concerned about his daughter – “Daddy’s Little Girl” – whom he’s always supported through these kinds of losses. He may very well understand that any more treatments are going to be useless for his condition, yet he doesn’t want to take away the doctor’s hope of curing him.
These competing agendas can (and often do) occur to varying degrees in every end of life situation. The only way to end the competition of different agendas and avoid unspoken concerns, unwanted treatments, and make room for compassionate care is to talk. Talk with family. Talk with physicians, including specialists. Talk with religious advisors. Talk with friends and colleagues. Talk to whomever matters to you … but do it before things change so rapidly that the agendas are no longer relevant.
Caring Choices can help you align agendas to eliminate competition and ensure compassionate care when you need it the most. Talking about what we want as the patient, what we need as the loved ones and what we’re able or not able to do as the healthcare provider is the most valuable gift we can give each other. Talk is not cheap; it’s priceless.
© 2015 Caring Choices