Why do we fear the word "hospice"?
I just found out today that one of my patients, who is slowly dying from multiple cancers, has been enrolled in our hospice program without being told he is going into "hospice". At the request of his family, the "H" word was not spoken in his presence, as if this will shield him from emotional harm or depression when he begins to receive end-of-life care. This seems absurd to me - my patient knows that when he stops seeing his oncologist in the office, his treatment is over. Why would he be frightened about a compassionate program designed to help him live with dignity in his own home? Why do families fear the concept of hospice?
To me it seems that some caregivers live in dread of the idea of stopping a patient's chemotherapy, because to them it marks the beginning of the end of life. By not admitting that treatment is no longer delaying the growth of the cancer, they maintain the illusion that nothing has changed in the patient's prognosis. This does nothing to prepare the family for the inevitable - in contrast, it weakens their ability to cope, to reflect, to love.
Why do some of us avoid using this word in front of the cancer patient? Perhaps it is because "hospice" has become a euphemism for "execution". Many family members believe that enrolling in hospice seems to imply that a patient has been branded as dead, and is no longer permitted to enjoy the daily pleasures of life. Families therefore hide the dying process from the patient, creating a tense masquerade of home life that compounds their own distress.
I believe in speaking the word "hospice" when discussing the options for the care of the cancer patient who is finished with treatment. When faced with a choice between admitting the reality of the situation, or denying it, choose to speak the truth. It may seem an ordeal at the time, but the emotional release gained from deciding together to face the future honestly will strengthen the bond between the patient and his or her family, and perhaps ever so gently soften the grief to follow.