The gentleman has no family, or rather he has a family, but they have disowned him. Reason: he is gay. When he contracted HIV and lost his sense of awareness, they remain resolute that they do not wish to have anything to do with him.
He has lost his family, his identity, his wealth, his health. He has no idea who he is, his history, where he is going, where he is from and who once loved and cared for him. With that, perhaps a huge element of his worth is taken away. He has no economic value. Being a recipient of Medifund and likely further state funds to maintain him when he is well enough to be discharged and a suitable shelter has been found for him, he does not contribute to the economy of Singapore. Some may write on their reports as “patient is not gainfully employed”. Sometimes I wonder what that means: to be gainfully employed. How do we define gainfully? If I work on something that does not give me monetary reward but it offers me something of value more than money, is that still gainful? The usual term for it is “volunteer work”. Sometimes words offer such narrow and limited explanation of what the heart can fill. Or perhaps I am the one who has limited vocabulary. In any case, I digressed…..
Well.. thankfully this gentleman has maintained his ability to care for himself, performs basic level of self-hygiene and is largely independent. The people whom he meets with daily are the healthcare workers. With that, he has a place to lay his head, food to fill his stomach, clean clothes to wear and some connection with other humans. Perhaps losing his awareness is worse for healthcare professionals but not for him. The stink of this utter rejection from this family does not hurt him since he is not aware.
Medically, we call it no mental capacity. He is deemed unable to make decision concerning his treatment but does have capacity to decide on his care. I’m continually fascinated how the psychiatrists who made this assessment came to make this distinction.
He was started on HIV medication. Since he has lost mental capacity to decide on his treatment, his doctors had decided this for him. Withholding it will be unethical as will just be waiting for him to contract some preventable health conditions and slowly die. Except, the treatment itself can be toxic to his organs if not monitored and assessed. To do so require drawing of his blood, a move that he had vehemently rejected. It felt like violation of his will to proceed even though he is not able to make a sound decision. Pressing ahead with this move will either require sedation or some form of restrains which the physician is not comfortable to proceed. In any case, a request was made to the ethics committee to advice on the next steps.
Ethics can sometimes be deemed as unkind. It guides decision and help professionals work through difficult situations and present us with some clarity in making decisions. However, not all decisions is welcomed by all. How do you tell a lady hopeful to carry the fertilized eggs of her daughter who died in an accident that it is unethical to do so; Or the mother that her request to deliver her 34-week-old unborn baby is against ethical principles. It was her last hope to save her 6 years old child who is dying of a rare form of leukaemia. How do you work through the resistance of doctors who couldn’t bring themselves to tell their 89 year old patient with end stage renal failure that starting dialysis is an option but one that brings suffering. Yes, ethics can be uncomfortable, even if it seems like the right thing to do. Many times ethics is up against personal moral distress…. And depending on who wields more power, moral distress sometimes wins.
In this case, the ethical thing to do is clear — do no harm. If continuing treatment can cause harm, this extent of the harm needs to be ascertained and addressed. It will bring moral distress to do the unpleasant — of doing things against the will of the patient. Refraining from doing so can actually be seen as respectful — that despite being deemed unable to make treatment decision this patient’s will is being respected. It will also suggest that doing the ethical thing may also be disrespectful.
What the ethics committee recommended is essentially an exceptional art and demonstration of grace and wisdom. The eloquence of how it was written essentially reconciled what is needful vs what is respectful and compassionate. It was not in what was recommended but how the recommendation was made. At point of writing this, it was something that had happened 3 years ago. I don’t exactly recall the contents of what was written, but I vividly recalled my thoughts and my feelings reading through it.
The committee highlighted a few very poignant points that recognize the uniqueness of his situation. They were demonstrating social work values, and without a doubt, values of the medical profession, perhaps more so than social workers. They care about his situation, the impact of the condition, his concern about the procedure and directed that proper care and sensitivity be exercised in view of stigma, avoid causing distress but doing the ethical part of doing no harm. It also shows due concern for the healthcare workers who is doing the procedure and those who are caring for him. It was being humane and compassionate in a place that can sometimes be brutal.
It moved me on different levels and highlighted to me about the wonders of compassion, even in ethics. That yes sometimes doing the right thing, guided by ethical principles can cause moral distress, but it is not devoid of compassion in its execution. It is like what the Bible teaches us — the letter kills, but the spirit gives life (2 Cor 3:6). I guess I have new appreciation of this verse, not that the ethics committee was God, but I learned sometimes, it’s ok to hold that space of discomfort that doing the right thing brings including moral distress but it can be executed with due consideration of these distress and not just dismiss it in name of what is right.
Most, if not all who are healthcare professionals are guided by their own professional code of ethics that contain articles admonishing us to be compassionate, humane. To comfort and to be kind — apart from doing what is right, guided by science and ethics. However the delivery of it can be a very different story. Perhaps it is bureaucracy, perhaps it is about management that tears down whatever goodwill that all the profession profess to be. Or perhaps, it is capitalism — that dictates human worth as tied in to production, and how these values are so internalized by any professional. After all, we are in this world…. We hold ourselves to these standards of our own worth, why wouldn’t we externalize that to our patients?
And face it — medical treatment can be brutal. Navigating the services can be very unkind. Time is pressing to all the people operating it — essentially, everyone just wants to complete their tasks … some do it with a touch of humanity, some, well are just ticking off their check list or clearing their in-tray — figurative ones included. Yet, it is in this place, that this gentleman found a place of humanity. A place that wants his blood and wants to take it against his will that has shown him kindness, consider his situation, remind everyone to show him compassion — the compassion that was denied to him by the very people who should be showing him. It was here that the committee in their recommendation goes against the grain of a capitalist society that debased his worth since he is not producing. It didn’t stop there, it also defies how some in society (some are quite powerful) devalue his worth riding the high horses of morality and simply ask that we be kind — all cos he is a human. No strings attached, just a human. So, be kind.
