Dying for dignity

2014-07-18 13:45

Multimedia   ·   User Galleries   ·   News in Pictures Send us your pictures  ·  Send us your stories

We need to develop new ways of thinking about death and what it means to be allowed to die with dignity, writes Archbishop Emeritus Desmond Tutu

In all my years of pastoral care, I have never once had the privilege of being with someone when they die. I’ve visited dying colleagues and friends at St Luke’s Hospice in Cape Town in the last period of their lives.

I’ve witnessed their being cared for beautifully, but I have never been there at the exact moment of someone’s passing.

I’ve been asked why I consider it a privilege to be present when temporal death takes place. It comes from my belief system. It is the wonder of a new life beginning, the wonder of someone going to meet their maker, returning to their source of life.

In some ways, death is like a birth, it is the transition to a new life.

l am now closer to my end than to my beginning.

Dying is a part of life. We have to die. The earth cannot sustain us and the millions of people who came before us. We have to make way for those who have yet to be born. And since dying is a part of life, talking about it should not be taboo.

People should die a decent death. For me, that means having had the conversations with those I have met in life and being at peace. It means being able to say goodbye to loved ones?–?if possible, at home.

Recently, I discussed my wishes with my youngest daughter, Mpho. My choice of the liturgy, the hymns and who should preach. I’d like to overnight in St Mary’s Cathedral in Joburg. It was such an important place in my life – it’s where I became a deacon and where so many other important things happened.

I would like to be cremated. Some people are not comfortable with that idea. I’d like my ashes to be interred at St George’s Cathedral in Cape Town.

There are certain African traditions I am not comfortable with?–?the turning of photos to face the wall, the clearing of furniture from the bedroom and placing of straw mats for the women to sit on for days.

I am comfortable that on my passing, these traditions should not be followed.

It concerns me how people get into debt at funerals, buying expensive caskets, slaughtering animals they can ill afford to pay for. I want to role-model modesty. I would like a simple coffin, one of plain wood with rope handles.

I would like modest refreshments after my funeral. If people want to slaughter an animal as part of traditional ritual, I’d be happy with a sheep or a goat?–?it doesn’t need to be a big animal.

My memorial stone should also be modest. My concern is not just about affordability, it’s my strong preference that money should be spent on the living.

This takes me to the question of what it means to be alive. What constitutes quality of life and dignity when dying? These are big, important questions.

I have come to realise that I do not want my life to be prolonged artificially. I think when you need machines to help you breathe, you have to ask questions about the quality of life being experienced and about the way money is being spent. This might be difficult for some people to consider.

But why is a life that is ending being prolonged? Why is money being spent in this way? It could be better spent on a mother giving birth to a baby or an organ transplant needed by a young person.

Money should be spent on those who are at the beginning or in full flow of their life. Of course, these are my personal opinions and not those of my church.

What was done to Madiba was disgraceful. There was that occasion when Madiba was televised with political leaders President Jacob Zuma and Cyril Ramaphosa. You could see Madiba was not fully there. He did not speak. He was not connecting. My friend was no longer himself. It was an affront to his dignity.

It is important for all of us to talk about death and our dying. A survey was done of 1?001 doctors in the UK in 2008. As many as two-thirds of them said they had difficulty discussing end-of-life care with their patients.

Physicians were once healers of life and easers towards death. In this century, the training for the latter has been neglected.

Death can come to us at any age. The clearer we are about our end-of-life preferences, the easier it will be for our loved ones and our doctors. I am coming to understand the importance of having a living will or advance directive as some people call it.

I do not want artificial feeding or to be on an artificial breathing machine?–?I don’t want people to do their damnedest to keep me alive.

I’ve learnt there are wider societal benefits to living wills. In La Crosse, Wisconsin, where physicians campaigned for decades for all adults to sign their end-of-life preferences, one benefit has been the savings, for families, the government and healthcare companies?– savings now used more creatively elsewhere.

The second upside is that having discussions earlier in life seems to put people’s minds at rest and they live longer. How else do you explain that life expectancy in La Crosse is now statistically higher than other similar geographies?

I was asked recently what I would wish for myself if I had a terminal illness and my quality of life was seriously deteriorating.

This year, I followed the case of French doctor Nicolas Bonnemaison, who assisted several people to die. It was anticipated that there could be a heavy prison sentence.

Several witnesses, family members included, wrote to support the doctor’s actions as compassionate. The doctor was acquitted. There were jubilant celebrations. The Supreme Court of the UK recently ruled that a ban on assisted suicide was incompatible with human rights.

We need to revisit our South African laws that are not aligned to a Constitution that espouses the human right to dignity.

On our own soil, Craig Schonegevel?–?after 28 years of struggling with neurofibromatosis?–?decided his quality of life was too poor. He’d had so many surgical procedures that the thought of enduring more was unbearable. He could find no legal assistance to help him die. On the night of September 1 2009, he took 12 sleeping pills, put two plastic bags over his head tied with elastic bands and was found dead by his parents the next morning.

Schonegevel wanted to end his life legally assisted, listening to his favourite music and in the embrace of his beloved parents, Patsy and Neville. Our legal system denied him and his family this dignity.

I am coming to understand the importance of language in this sensitive issue. The words ‘euthanasia’ and ‘suicide’ carry negative connotations. Suicide is considered a premature death often accompanied by mental instability. Schonegevel’s thinking was crystal-clear?–?he wanted autonomy and dignity.

Some say that palliative care, including the giving of sedation to ensure freedom from pain, should be enough for the journey towards a peaceful death. Some people are of the opinion that with good palliative care there is no need for assisted dying and no need for people to request to be legally given a lethal dose of medication.

That was not the case for Schonegevel. Others assert their right to autonomy and consciousness?–?why exit in the fog of sedation when there’s the alternative of being alert and present with loved ones?

I have been fortunate to spend my life working for dignity for the living. Now I wish to apply my mind to the issue of dignity for the dying.

I revere the sanctity of life, but not at any cost. I confirm that I don’t want my life prolonged. I can see I would probably incline towards the quality-of-life argument whereas others will be more comfortable with palliative care. Yes, I think a lot of people would be upset if I said I wanted assisted dying. I would say I wouldn’t mind, actually.

On Mandela Day, we will be thinking of a great man.

On the same day, the House of Lords will hold a second hearing on Lord Falconer’s bill on assisted dying.

Oregon and Washington in the US, Quebec in Canada, the Netherlands and Switzerland have already taken this step. South Africa has a hard-won Constitution that should provide a basis to guide changes to be made to the legal status of end-of-life wishes to support the dignity of the dying.

On our continent, dying as an elderly person is a privilege. We are sadly too familiar with the earlier deaths of loved ones. War, violence, HIV/Aids and socioeconomic diseases take their toll.

We need a mind-shift in our society. We need to be thinking. We need to be questioning. What is life? And isn’t death a part of living?–?a natural part of life?

Join the conversation!

24.com encourages commentary submitted via MyNews24. Contributions of 200 words or more will be considered for publication.

We reserve editorial discretion to decide what will be published.
Read our comments policy for guidelines on contributions.

24.com publishes all comments posted on articles provided that they adhere to our Comments Policy. Should you wish to report a comment for editorial review, please do so by clicking the 'Report Comment' button to the right of each comment.

Comment on this story
Comments have been closed for this article.

Inside News24

Traffic Alerts
There are new stories on the homepage. Click here to see them.


Create Profile

Creating your profile will enable you to submit photos and stories to get published on News24.

Please provide a username for your profile page:

This username must be unique, cannot be edited and will be used in the URL to your profile page across the entire 24.com network.


Location Settings

News24 allows you to edit the display of certain components based on a location. If you wish to personalise the page based on your preferences, please select a location for each component and click "Submit" in order for the changes to take affect.

Facebook Sign-In

Hi News addict,

Join the News24 Community to be involved in breaking the news.

Log in with Facebook to comment and personalise news, weather and listings.