My Living Will

With the passing of Pope John Paul II and Terri Schiavo, it’s only logical to think about formally setting down an advance care directive.

Consider this my framework for the official document to come (when I can be bothered to think of the format). So if circumstances get beyond my control before I get my procrastinating butt on the act, then this post serves as being indicative of my wishes.

I am 31 years old, in good health (except for a recalcitrant hypertrophic inferior turbinate) and of sound mind (I really am, despite the occasional little bouts of paranoia and odd behaviour). When I was very very small, I had a growth surgically removed from the back of my ear. My mum was so impressed at how unscared I was as I sat cutely in my oversized hospital gown on the trolley waiting to be wheeled in (dunno if it was my bravery or my cuteness that was so impressive). I was aware as the surgical instruments were passed over my face and I held the nurse’s hand tightly when the injection went in. Mum must have preened as the nurse later commented on my bravery, how I didn’t cry and of course, how cute I was.

There, that should convince my parents that I actually wrote this and therefore this post is genuine.

I have always been pro-choice. Everyone should be entitled to make their own decisions over their body and health. Provided that we understand that it is one’s own responsibility to think the issues through first and make an informed decision. If the decision turns out wrong in hindsight, so be it. You reap what you sow. No one ought to be blamed but yourself.

I have given much thought to end-of-life issues. Having studied the legal and ethical aspects involved, I believe that I am as well-informed as I ever will be. The following is applicable in any event where I am incapacitated to such extent as to not be able to make my own decisions.

If I were to be diagnosed to be brain damaged to such extent that substantially all cognitive function is lost and am attached to feeding tubes, I would not want to be kept alive. Ideally, I’d like active euthanasia to be carried out…that I be given something (like morphine) to hasten death. Unfortunately, active euthanasia would expose those left behind to criminal liability. So, if you can’t get away with it, then just remove the feeding tube, or if I am on anything other than pain medication, remove that too. Do not resuscitate in the event of heart failure. The law in the US regarding this is that a patient has the right to refuse medical treatment (which includes artificial nutrition and hydration) and this is in effect what I would be doing. Don’t forget to give me pain medication to ease the discomfort as my organs start to fail.

I do understand that mum and dad would be rather resistant to pulling the feeding tube or any other life support which I may be on. And so, since they have the resources to explore most medical options, I am willing to let them do so, if they choose to, but for not more than 2 years from the date of incapacitation. After that, please take me off the machines. It would be time to let go. And the living must go on.

The above also applies in the event that I’m in a coma, with or without possible brain damage.

It’s more tricky if I start to lose my mind because of Alzheimer’s or any similar dementia. In such a situation, I would prefer to go before my mind does. Particularly for me, I am nothing without my cognition. Unfortunately, an Alzheimer’s patient is often quite healthy, so there’s no plug to pull. I would need, essentially, someone to kill me. I’d do it myself, to spare you the moral dilemma. But in the event that the disease gets my brain before I have the chance…you know what I would have wanted. But don’t forget to knock me out with morphine first.

Whatever the case, the guiding principle is this. Without my brain, I am gone anyway. Being merely alive with the lights out is not my idea of living with dignity. I am also terrified of pain. Sadly, I am no longer that brave kid on the hospital trolley, so bring on the morphine please. If I still have my cognitive functions but live in debilitating pain (from, say, motor neurone disease), well, do try to understand if I tell you that I’d really rather die. That’s just no way to live.

Since I’m on the subject of hospitals and stuff, please don’t leave me alone in a private hospital room…I have this silly fear of vampire nurses who go around for the nightly buffet. If they get me, I'll come back and bite you.

Finally, this is important - In the event of any dispute (e.g. mum terrorising the doctors or whoever shows her this blog), I want a guardian appointed for me by the court. This person must not be a relative (I’ve often said, emotions get in the way of best interests) and preferably legally trained. My guardian must act according to my wishes here, and overall, in my best interests. Unfortunately, the only way in Malaysia that one can get a guardian appointed for an adult is under the Mental Disorders Ordinance 1952. A few years ago, I handled a successful court application by the grown-up children of an Alzheimer’s patient to be appointed as a committee to manage her person and her property. So yeah, it can be done that way.

One last note. Please make sure I’m really dead. Don’t want to suddenly come back to life during the cremation. So, go ahead and take out whatever organs whoever needs, but make sure the heart’s really really stopped. This applies, whatever the cause of my death.

Well. There you go. A very public advance directive. So no fighting, people.