When I first saw her in ED, I remembered meeting her previously on a home visit. She lives in a shared home with high level 24 hour care. She cannot communicate comprehensibly and those who have cared for her know that she is very effective in emotional expression. She would often scream and yell out "no" to strangers. And try to thrash about in the body she was imprisoned in. Feeding was via a PEG tube, a tube on the outside connecting to her stomach, that had been inserted for years. The 'accident' which landed her in such a debilitating condition happened when she was 16. From heresay, she attempted suicide by drowning but did not complete the act since she was discovered by her parents. The hypoxic damage to her brain was so extensive which lead her to spend the next 23 years in this state... unable to speak, unable to feed herself, unable to move, unable to define a career, have children, etc. Sometimes I wonder if that same person is in there, unable to get out and show the world who she was.
For all I knew, when she came into ED the other day, she was no different to what she was. Whether this was masked by whatever pain killers she was given or already on, it was difficult to say. She received relatively little attention in the ED from the staff, but was not treated any differently to any other patients with communication difficulties. It was hard to observe any dignity for this patient as she underwent this surgical journey. It was true, that she lacked any capacity to make any clinical decisions; however, her advanced care planning on a flimsy piece of paper was not enough to convince me that this is what she would have wanted had she had the ability to make such a decision or would she? This was the greatest dilemma of them all.
The orthopedic surgeon who performed the operation had not met this lady before. He was not directly involved in the consent process, but was passed on this case from a colleague. From the start, he did not feel that it was appropriate to be operating and thus avoided any possible personal or emotional attachment to the case. He did not assess her until she was under general anesthesia. During the operation he raised discussion and questions about the ethics of making his first cut. From an observer's perspective, he was simply following orders.
As a medical student we learn about risk-benefit analysis. We are trained to think that any intervention performed should have a justifiable reason for doing it. That an operation should be used to provide benefit to quality of life, otherwise should not be performed at all. I really struggled to see the benefits on operating on this young lady. How would waking up after being under in excruciating pain be any improvement in her already compromised quality of life? Even if her pain will improve in the long-term, how long would it take to achieve that, and how many years did she have left? Was the cost of the operation worth it when the same resources could be used on someone else? And who is to say that the complications of this open reduction and internal fixation surgery would leave her in a worse state than she is now? The fear of developing a DVT, osteomyelitis, stroke, pressure ulcers post-operatively could potentially kill her. Was this what we wanted? Is this what she wanted (afterall she did want to end her life that many years ago)?
The issues with these types of patients are countless and only frustrates me as I am riddled with ethical dilemma. All we could do was be content with this universe and let it take its course. I realize that we are not the ones who make these decisions. Under the law, it is this lady's mother who has medical decision making rights. We are merely pawns executing our jobs. In the words of the orthopod who operated on this young girl, "the enemy of good is better"
Why did God create a universe like this? What are we to do?
