By Kiran Gupta
Here in the US, efforts to reform end-of-life care quickly lead to concerns about “pulling the plug on grandma”. Dying is inevitable. Doctors are not divine; we cannot cure everyone. But the US healthcare system – which emphasises heroic interventions using advanced technologies – sometimes leads physicians to believe that death is a failure.
Patients such as Mr B would disagree. Despite losing 30lb in a month, the old man only came to the hospital because he was having trouble swallowing, making it difficult for him to enjoy his meals. Examination showed a large, firm mass on the right side of his neck, a likely indication of cancer. The specialists recommended a “trach and peg” – shorthand for the insertion of breathing and feeding tubes.
But Mr B resisted. “No tubes. I don’t want no tubes,” he pleaded. “I’m 89 years old. I’ve lived a good life. I hear the bugle calling from the other side. My lady friend is gone. My friends are gone. If it’s time, it’s time.” It all seemed so simple to him. Not so, however, when it came to relaying this news up the hospital hierarchy.
The oncology fellow’s voice sounded shrill on the phone. “But this is totally treatable! He just needs chemo. What do you mean he doesn’t want a trach and peg? We could get him through this. I’m going to talk to the attending.” Dial tone. She had hung up.
The well-known bioethicist George Annas once referred to America as having a “death-denying culture that cannot accept death as anything but defeat … we are utterly unable to prepare for death.” When Barack Obama attempted to address end-of-life care as part of healthcare reform, Sarah Palin accused him of forming “death panels” – deciding who lived and who died.
Like it or not, Americans need to accept that healthcare dollars are rationed. But this is not the only reason that things need to change. Too many of our elderly patients die without dignity. “Maximal medical therapy” can mean taking their last breaths in the midst of a bloody code – a chaotic scene at the hospital bed. Why do we do it? Because society demands it.
In medicine, we often direct our treatments at a disease – pneumonia, heart conditions, et cetera. But in all the guidelines and jargon, it becomes easy to lose the patient, focusing too little on quality of life. We may be uncomfortable talking about death but we have a responsibility to tell families that it is OK to let loved ones die peacefully. When a physician says that no intervention is the better option, it alleviates the guilt.
Mr B was wasting away. His body would not tolerate chemotherapy and I arranged a meeting with him, his daughter, and the pain and palliative team.
When I called the oncology fellow to suggest that we send Mr B home with nursing, she was furious. “You want him to receive just comfort measures? We only do that for people who are comatose!” Click.
But Mr B was clear. He was ready to die but wanted to do so on his terms – at home until the very end, tasting his food even if he couldn’t swallow it. He left the ward with a smile on his face.
No human wants to end life as a tangle of tubes, lines and drains. Doctors must remember that we hold tremendous power over the decisions that patients make. We can sway them one way or another in the course of a sentence. It is our obligation to help patients make decisions consistent with their desires and values – not our fear of failure.