August 4, 2015

Why I don’t want to know about dying to know day

A lot of things have a day now. Last week we had Cheesecake Day. That was good. I like cheesecake. In Mexico they have a Day of the Dead. In Australia The Groundswell Project has declared August 8th #DyingToKnowDay.

Perhaps you’re just dying to know what I think about #DyingToKnowDay?

Of course you are. But please note that, that these are my own personal views and they do not necessary reflect the views of Exit or of Dr.Nitschke. Exit is a broad church (if you will forgive the euphemism) and unlike some other organisations, there is plenty of room for differing and divergent views within it.

So in theory at least, I am in favour of #DyingToKnowDay. It has to be a good thing that people are being encouraged to talk to each other about death and dying. Right?

Certainly. But what kind of conversations are actually being encouraged? And what is more important, what kind of conversations are being discouraged? It seems to me there are two elephants in the room. That’s a lot of elephants in a room as small as this!

Suicide

One is the vexed issue of suicide. The fact is that on average a million people or thereabouts in the world choose to shuffle off this mortal coil ever year, by whatever means available. This is a huge problem and as a society we have no idea how to address it. One of the problems is that the average person is not deemed qualified to have an opinion on suicide, and what has become the norm, is that it’s better not to talk about it. Thus when someone is found dead, and the newspaper says that ‘there are no suspicious circumstances’ we can assume they made a decision to end their life. But it is not named as such because of the idea of suicide ‘contagion’. It’s as if by talking about it, by naming it, people are going to be more likely kill themselves.

Suicide has become the realm of mental health ‘professionals’ and other ‘experts’ like Beyond Blue, the Samaritans and Lifeline. These are the people you are advised to call if you are thinking about ending your life. And the kinds of people you’ll be talking to, if you ring one of those organisations, believe that by definition, anyone who is thinking of ending their life is mentally ill.

They support initiatives like those of the World Health Organisation to limit access to peaceful, effective ways of ending your life. And of course this does have the effect of reducing the numbers of people ‘committing suicide’ somewhat. But does it reduce the amount of suffering and the misery in the world? Does it make people happier? And won’t people who are determined to end their lives just find another way to do it?

The Groundswell Project

It seems to me what the #DyingToKnowDay people and the Death Café people are trying to do is to limit conversations about death and dying to safe topics, like palliative care or end of life care or hospices or advanced health care directives or medical power of attorneys or bereavement or mourning rituals or ‘natural’ burials. These are interesting enough issues and we should be informed about them – but they are not the only conversations that we need to have.

At the beginning of the year I emailed Kerrie Noonan*, the co-founder of the Groundswell Project whose mission is “To develop innovative arts and health programs that create cultural change about death and dying, while championing others to do the same.” I’m in favour of that (again, in theory). I explained who I was and that I would like to be involved in #DyingToKnowDay, but unfortunately I did not receive a response – and a follow up email didn’t get a response either. I subsequently emailed various other people involved with aspects of this and other projects, asking for a meeting, offering to come and give a talk – and was duly ignored by them all.

Why?
Could it be that they don’t want someone participating in the conversation who is interested in the issue of how people can be in control of their own death and determine how they die at a time and in a manner of their choosing? I mean after all it is not ‘natural’ to decide to end your life. I suspect this is why they don’t want me or Exit to be involved.

In October, the Groundswell Project is partnering with an organisation called The Natural Death Association Network (NDAN) to host a ‘Death Literacy’ conference. “EMPOWERING CHOICE AT END OF LIFE” insists their website over a backdrop of sunlight in a forest, and then a child’s hand. Again I too am very interested in end of life choices, but the kinds of choices I am interested in are slightly different.

So this whole ‘movement’ if that is what it deserves to be called, seems to be an unholy alliance between what appear to be, on the face of it, sensible professionals like Kerrie Noonan who is a psychologist and people who work in palliative care on the one hand – and old (and new) school hippies, the ‘spiritual’ crowd who like scented candles, on the other. They are interested in death and dying because they think of it as a ‘sacred portal’ to another existence. They believe in an afterlife and they are dying (excuse me) to tell you about it. They call themselves ‘death doulas’ or ‘death walkers’ who will ‘accompany’ you on your ‘death journey’ (for a fee) or ‘celebrants’ looking for a gig. Or, you can do a workshop where they will teach you how to be a death walker or death doula.

But what is really important for those of us who are committed to a secular autonomous approach to death and dying, in my view, is that we don’t become distracted. We need to continue to focus our energies on working out ways in which we can give people who want it, who need it, access to the information that is required to have control over how and when you die. This is the way we can help reduce unnecessary suffering, powerlessness and misery in the world and that can only be a good thing.

A lot of good people are attracted these kinds of initiatives because there is such a dearth of them. When there are so few conversations about death and dying – something which happens to all of us and to the ones we love and care about – when these conversations do happen and there is good publicity, they attract a lot of interest. And therein lies the problem. Politically and ideologically, I would argue, we must be careful about who we allow to dictate the terms of these conversations. The Groundswell Project, the well intentioned Death Café organisers, the self appointed ‘experts’ of the Natural Death movement – and dare I say it, the Voluntary Euthanasia Party – all have more or less hidden agendas and vested interests, and they want to claim a piece of the action now. Because what is coming is inevitable, but it won’t be self determination.

Voluntary Euthansia?

In the debate about what is now called Voluntary Euthanasia (much to my chagrin – but that’s a story for another day) we are also seeing it. As the legal system and the long arm of law enforcement do everything within their power to silence Exit and its supporters, and whilst the media is engaged in a vendetta against Philip Nitschke – Rodney Syme and his supporters (which include the Fairfax press) are hell bent on hijacking the debate. “Trust us,” they say, “We are doctors. And look,(pointing at Philip) he is not a doctor anymore.” (The fact that the Supreme Court has ruled the suspension of Dr.Nitschkse’s medical license illegal notwithstanding. The damage is done.) Well I for one, don’t want to have to go cap in hand to the likes of Rodney Syme and beg for help when the time comes, and have him sit in judgment over whether my suffering is unbearable or not.

But most of my friends are enthusiastic supporters of the VEP and many of them are likely to think #DyingToKnowDay is a good thing. I don’t want to alienate them – but what I am saying is: If what we want is to have control over our own deaths, no existing or proposed legislation that I’ve seen is ever going to give us that. What those kinds of legislation propose to do is give a little bit more power to others to have a bit more of a say over our deaths. And the numbers of people who will benefit from such legislation will be very small. They will be a limited number of terminally ill people, most probably in the very final stages of their disease.

But wouldn’t a change in legislation be a step in the right direction? you might ask. Isn’t it better than what we have now? Well in a way, yes – but in another way no! Not really. Why would you vote for legislation which requires you to hand over control over how your life ends to a doctor? Being a doctor doesn’t make you an expert in dying or suffering. A doctor may be able to make you well or to give you appropriate pain relief if you need it, but the medical people are not experts in dying. Every death is unique. Your death, just like your life, belongs to you and you are the expert of your own death.

Of course it’s a good idea talk with your nearest and dearest about your death and to consult with professionals when you are making your will, or when you are arranging your funeral – and when you are thinking about your health and the quality of your life. But what I am advocating is autonomy and self determination in dying. That is the issue I want to talk about. Who wants to talk about that with me?

Dr.Johannes Klabbers

* Subsequent to posting this I received a friendly call from Kerrie Noonan. She read my post and apologised profusely for not responding to my email. She assured me that anyone can be involved in Dying To Know Day including Exit and that there is not excluding right-to-die conversations – but that they walk a fine line, with the palliative care… shall we call it an industry? (my word not hers) seeking to medicalise and dominate the conversation. So that is encouraging. Next year we (Exit) will do something and I will put in a proposal for the Death Literacy conference. I also offered her the opportunity to write a post for the Peaceful Pill Blog which she said she’s be interested in doing. Watch this space!