just because its possible doesnt mean its right.
a young man with muscular dystrophy and end stage heart failure represents to his hospital the day after his discharge with not much objective signs of decompensation but subjectively he feels worse. he doesnt diurese much despite intravenous frusemide so he was transferred 400kms back to us. we restart him on inotropes but his systolic blood pressure hovers between 70 and 80. he is wheelchair based and requires a hoist for transfers. his brother had worse heart failure but better skeletal muscle function and received a heart transplantation. all he wants to do is make it to his sisters wedding in 3 weeks' time. but we dont think hes going to be there. transplantation would be futile.
another man referred to us with (recreational) drug-induced cardiomyopathy presents with pneumonia exacerbating his underlying heart failure. he was initially drowsy and rousable only to pain and needed non-invasive ventilation. after antibiotics and diuresis he has now woken up and is demanding benzodiazepines for his panic attacks and drug withdrawal. he threatens to discharge himself against medical advice. the nurses ask me: would that be such a bad thing? he'll never be transplanted.
he is a father of an seventeen year old boy currently doing vce. his son thinks he is lazy but really he has an ejection fraction of 16% and still tries to work full time to support his family. he thinks all he needs to do is "get fit" but feels tired and breathless all the time. i presented him for transplantation and the cardiologists and surgeons in the audience approved him for listing but still i dont know if he understands what he needs and what is ahead of him.
what is informed consent? should we let some people die because they dont know whats best for them? should we let some people waste a heart (or any other organ for that matter) that could benefit another simply to prevent their death? its hard not to be paternalistic. maybe its even right to be paternalistic. after all, what do the masses know? nothing. and what do i know? the futility of the whole thing.