Dying with dignity

Yesterday, a strange collection of people received an unusual email. It was a suicide note from a man we knew to varying degrees, sent to people with whom he’d formed a connection over the years, whether via secular humanist activism (as in my case) or badminton, or something more intimate, like being family or close friends.

It was scheduled to be sent hours after he had taken his life, and included instructions regarding memorial services, burial and the like.

I didn’t know him well, so I’m not sad at his death in any personal fashion. I am however sad at how he had to die – alone, and with no certainty that his suffering would be alleviated, given that the medical support that should be available at times like these cannot be provided unless you can find a physician who is willing to break the law.

The decision to end one’s life should not be taken lightly, and I’m confident that it rarely is. We know we have obligations to friends and family, and he certainly knew this, saying:

I have been told repeatedly that I have to hang on, not for my sake, but for other people’s, especially my children’s. It has what has kept me going this long, when every day, sometimes every hour, is torture to be endured. There is only so much one can expect of a human in such circumstances. We are frail organisms, subject to the whims of nature (red in tooth and claw), and sometimes, as in my case, the organism is damaged and irreparable, and so it fails.

Those of us who received the email also received a farewell letter, detailing his struggle, permission to share that letter or excerpts from it, and a specific request to share it (I’ve done so) with Dignity South Africa, launched in 2011 to campaign for the right to assisted dying in South Africa.

He suffered from depression that had been completely resistant to treatment for over a decade, even though he “tried more than 45 different psychotropic medications, … more than 12 psychiatrists over the last decade, and multiple GP’s and physicians and endocrinologists.”

Without exception, they declared themselves unable to help, and passed me on to others. Most times this was done kindly, sometimes roughly, but sooner or later in each instance I was firmly shown the door.

“I have nothing left in my arsenal”, “I do not have the experience or knowledge to help you”, “You are the great exception to all the rules”. These are some quotes that I remember.

Some people might of course take such decisions too hastily, but this is not such a case. But more to the point, this is a matter of personal agency, and nobody is as well-placed to judge whether their lives are worth living than the person in question.

Abuse is certainly possible, such as in cases where people are pressured to end their lives in order for inheritances to be collected, to name one example. This is why we need a coherent legal framework, including provision for counseling and so forth.

But, appeals to life’s sanctity are an insult to those who are experiencing terrible suffering. A life can cease to be worth living, and it’s not your, or my, place to insist on someone else’s behalf that they have an obligation to endure that suffering.

Please support DignitySA’s work to make a safe and dignified death a possibility in cases such as these. And, if you’re in a situation like his, consider reaching out to the South African Depression and Anxiety Group for help or a reference to other support structures.

The final words are his, as they should be:

I want it to be crystal clear that there is no-one to blame for this. I am simply a broken product. I rolled off the production line with at least one critical inbuilt error (refractory depression), and somewhere along the line something else failed (Chronic Fatigue Syndrome). All forms of diagnostics and repair were fruitless, and so this is just another example of human fragility.

People will ask themselves; “Could I have done more, helped more, been around more?”, and maybe for some of those things the answer is yes, but these are not the factors in my passing, are certainly not the drivers or causes, and I want to ask you please, even beg you if necessary, not to take any form of burden or guilt upon yourselves. The truth of the root cause here is simple: I was very ill, so I died. The end.

Also published on Medium.

  • Tom

    Jacques- this is a terribly sad situation and all involved have my deepest sympathy. I think its also important to point out that under almost all assisted dying or assisted suicide laws in the world this man could not have legally been helped to die. I think Switzerland is the exception although I stand to be corrected. From what you say he was not in the last 6 months of life due to a physical illness which is a prerequisite for AD/AS in most laws including the one proposed by Lord Falconer for the UK. AD/AS for severe refractory depression is a separate and extremely difficult debate but many of us campaigning for AD/AS in South Africa would stop short of including severe refractory depression as an indication. I certainly would, pending a thorough debate on an extremely challenging issue.

    • Good points, Tom, thanks. I do think, though, that even if this case might not have passed muster under (most) existing law, it serves as a good prompt for the need to consider the permissibility of assisted dying in general, and is the sort of case that should at least be considered in the formulation of such laws (even if some might think laws shouldn’t cover this case). I’m in support of allowing assisted dying in cases like this myself, but as you say, thorough debate is certainly necessary (and overdue).

  • Udo Schuklenk

    I have, jointly with Suzanne van de Vathorst, argued that treatment resistant depression should b e included among the conditions for which medical aid in dying ought to be made available, subject to certain conditions. http://jme.bmj.com/content/41/8/577