David Patient, renowned AIDS activist, in his own words
The late David Ross Patient, who lived with HIV for more than 30 years, shares his story:
Peter had made an agreement with his life partner Joe and myself, that when things got too rough, we’d help Peter end his life. He was in the advanced stages of AIDS and the clock was ticking. He was bed-ridden and daily losing his faculties, like being able to feed himself, or even brush his own teeth, was catheterised and had to wear diapers [nappies].
Peter and Joe had both witnessed their fair share of the dying process to know that it is anything but what we see portrayed in Hollywood movies. It’s is messy, scary and there is no dignity. Both had been around AIDS for many years and knew, first-hand, the appalling deaths suffered.
Peter wanted no part of it. Peter wanted to control the end of his life and not be at the mercy of nature or some God/s.
So, we got hold of copies of several books on the subject, which was very much a taboo subject and did our ‘homework’ by identifying and then locating the drugs to assisting in ending Peters life. Sourcing the drugs was a mission of note as they had to be bought on the black market and we had no idea of the quality of what we were being sold. None of us had any experience in this no-go area so it was new to us.
There were no laws supporting assisted suicide let alone any group we could approach for guidance or support.
The big day arrives. Peter’s family all gather at his bed. The proverbial Last Supper is held and each family member has a chance to say goodbye to Peter. An incredibly emotionally exhausting experience for all involved. Several hours later, we made sure everyone was gone and it was just the three of us.
Peter was exhausted, but still fully coherent and responsive despite the huge amount of pain he was in, due to the eruptions of the massive Kaposi’s sarcoma (KS) wounds all over his feet, making them look like cut open water melons. The smell of decomposing flesh permeated everything. He told us it was time.
I left Joe and Peter alone to say their good byes and about ten minutes later, Joe called me back in. I asked Peter if he was still wanting to go ahead with ending his life and he reassured me he did.
He swallowed the combination of pills and chemicals we had mixed in with his morphine and we sat there, waiting for the combo to do its work. While we were waiting, Peter talked about the possibility of heaven and that he’d meet up with many of our friends who had gone before us. He spoke about it with great enthusiasm and that once he fell asleep, when he awoke, he’d be in a whole different reality.
He started getting drowsy, his speech became slurred, his breathing laboured and, within an hour, he was completely non-responsive but still had a faint pulse and his breathing was staggered. A couple of times he did what is called a ‘jump start’ – from long periods of not breathing to suddenly jumping back into life with a gasping motion. The jump-starting became less and less and both Joe and I thought it was now only a matter of a few hours [what the books had told us] until Peter would be pain-free and will have made his transition.
Several hours passed. Then his breathing started to become more regular and within three hours, he was wide awake.
[What do you say to someone who thinks they have woken up and are in Heaven, but still stuck in the very reality they were trying escape? “Coffee?”] Peter was mortified. Joe was angry and the whole family was traumatised beyond belief.
Either the combinations of the meds had been off or we had bought ineffective drugs. Neither of the books were forthcoming as far as to the precise quantities needed so it was pure guesswork on our side.
Joe and I spent the day gathering more drugs as Peter was now even more determined to end his suffering, so we doubled up on everything and even added more street drugs just to be on the safe side.
Our second attempt later that night worked and Peter passed away. Eight months later, I helped Joe end his suffering – he had CMV [ Cytomegalovirus] of the eyes and brain- an incredibly painful, protracted and dehumanising demise. Our experience with helping Peter served us well as Joe’s passing was very quiet, quick and dignified.
I know many people reading this find what I did flies against everything they stand for, however, the vast majority who do object, I have found, have never personally helped someone die at that level of intimacy, so their objections are either religious, ethical or academic, and hold very little weight in my book. I doubt many have the stomach for what really happens when someone is dying.
Let me walk you through a few to give you a snapshot.
The patient’s lungs start to fill with fluid, causing very difficult breathing, often choking and this in turn causes panic ‘attacks’ for the patient and emotional trauma to the caregivers. And this can go on for days on end. There is also the formation of a yellowish bile foam that comes out the mouth and there is a lot of it so its constant cleaning up this by-product. And the gargling noises to try and clear their throats from the bile/foam are haunting. This too lasts for days.
They are almost always incontinent and soil the sheets constantly. They become more restless and often aggravated, sometimes physically lashing out at those around them. And the smells of a mixture of sweat, puke, bile, pee, shit and decomposing flesh pushes one’s gag reflexes to an all new limit. For many, there is nothing remotely attractive or peaceful about the dying process.
Ever since Peters act of self-determination, I have learned a great deal on more effective methods to assist someone end their lives and have helped 9 people die in the early ’80’s, in the USA. Each assisted suicide was an incredibly intimate and humbling experience. As a result of my almost 34 years in AIDS, I have become a firm advocate for the Right of an individual to end their own lives, when there are no other options and death is inevitable.
I am NOT advocating someone having the right to end their lives due to a bad hair day or for being heartbroken by some relationship. I am talking about a person, living with a terminal illness, who has exhausted all their options and their future is one of pain and suffering and that they be allowed, by law and with the assistance of a medical practitioner, to decide when they want to die and to be able to access the appropriate help, legally.
For this who do not know it, assisted suicide and self-determination is now legal as of June 2016 , in the Netherlands, Belgium, Colombia, and Luxembourg.
Assisted suicide is legal in Switzerland, Germany, Japan, Canada, and in the US states of Washington, Oregon, Colorado, Vermont, Montana, Washington DC, and California.
And this is where DignitySA comes in.
DignitySA is an advocacy non-profit organisation, advocating for peoples right to self autonomy that is so enshrined in our South African Constitution and the Global Declaration of Human Rights and they are working at numerous levels to effect change in the current laws.
Please won’t you go to their Facebook page and ‘like’ them if you too support an individuals right to self-determination and if you can, get involved. Or go onto their website and share your experiences so we can educate more people on this.