Image courtesy of Desmond & Leah Tutu Legacy Foundation

Image courtesy of Desmond & Leah Tutu Legacy Foundation – thank you.

During all my years of pastoral care, I have never had the privilege of being with someone when they die. I’ve visited dying colleagues and friends at St Luke’s hospice, Cape Town, in the last period of their lives; I’ve witnessed their being cared for beautifully – but I’ve never been there at the exact moment of 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.

I am myself now closer to my end than to my beginning.

Dying is part of life. We have to die. The Earth cannot sustain us and the millions of people that came before us. We have to make way for those who are yet to be born. And since dying is part of life, talking about it shouldn’t be taboo. People should die a decent death. For me that means having had the conversations with those I have crossed 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 lie overnight in St Mary’s Cathedral in Johannesburg. It was such an important place in my life; it’s where I became a deacon, where so many 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, 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, the one of plain wood, with the 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 does it mean 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, then you have to ask questions about the quality of life being experienced and about the way money is being spent. This may be hard 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 that are at the beginning or in full flow of their life. Of course, these are my personal opinions and not of my church.

What was done to Madiba (Nelson Mandela) 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 Madiba’s dignity.

It is important for all of us to talk about death and our dying. A survey was done of 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 of death. In the 20th 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 learned 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, for 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 the 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. And Britain’s supreme court recently ruled that a ban on assisted suicide is incompatible with human rights.

We need to revisit our own South African laws which 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 the thought of enduring more was unbearable. He could find no legal assistance to help him die. On the night of 1 September 2009, he swallowed 12 sleeping pills, put two plastic bags over his head tied with elastic bands and was found dead by his parents the next morning. Craig 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 on this sensitive issue. The words euthanasia and suicide carry negative connotations. Suicide is considered a premature death often accompanied by mental instability. Craig’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 journeying towards an easeful death. Some people opine that with good palliative care there is no need for assisted dying, no need for people to request to be legally given a lethal dose of medication. That was not the case for Craig 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 truly 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 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 on Friday we will be thinking of a great man. On the same day in London, the House of Lords will hold a second hearing on Lord Falconer’s bill on assisted dying. Oregon, Washington, Quebec, Holland, Switzerland have already taken this step. South Africa has a hard-won constitution that we are proud of that should provide a basis to guide changes to the legal status of end-of-life wishes to support the dignity of the dying.

On our continent of Africa, dying as an elderly person is a privilege. We are sadly too familiar with the early deaths of loved ones. War, violence, HIV/Aids and socioeconomic diseases take their toll. We need a mind shift in our societies. We need to think. We need to question. What is life? And isn’t death part of living – a natural part of life?
 


 
Archbishop Desmond Tutu welcoming delegates to the World Federation of Right to Die Societies conference in Chicago in September 2014. The conference was attended by Prof. Sean Davison, the founder of DignitySA.

Tutu welcomes delegates of the World Federation of Right to Die

 
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Archbishop Desmond Tutu speaking to Sean Davison about the thought processes that led to his support of assisted dying in certain circumstances.

Desmond Tutu on Assisted Dying and the Right to Die

 
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Read below a collection of very interesting articles on Archbishop Desmond Tutu’s stance with regard to the issue of assisted dying:

21 thoughts on “Desmond Tutu: ‘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.’

  • 20 March 2017 at 05:21
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    I guess Archbishop Desmond Tutu has many highly informed and articulate connections in the Canadian Anglican Church. Canada has already made an ocean change of national law in this matter middle of 2016 (https://www.canada.ca/en/health-canada/services/medical-assistance-dying.html). But why international activists and media just keep focusing on a few US states? It’s the world geographically second country making a change. Looking forward to the Archbishop finding it opportune to comment. Don’t tell me the number of people in South Africa with Canadian nationality is minuscule. 🙂

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  • 2 January 2017 at 04:24
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    As the Archbishop mentions the word “suicide” carries negative connotations, let’s note that in German the word used is “Freitod”, a combination of “free” and “death”, not from an etymology meaning “killing oneself”. How about relevant South African organisations search Afrikaans and the country’s main African languages for the word to replace “suicide”?

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  • 30 January 2015 at 15:39
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    Hi, my husband has a rare cancer called Chondrosarcoma and has been fighting severe pain for years now. All he wishes for now is for euthanasia to be legalised so that he can rest. I pray everyday for God to take him so that he doesn’t suffer anymore, I wish so badly that euthanasia can be legalised so that people won’t have to suffer anymore. I watched my grandfather die because he couldn’t breathe anymore due to severe emphysema and his death has been clear in my mind for now 14 years because I always think and feel like we could have done something more for him rather then just watching and waiting for him to die. Now I wish that there is something more that I can do for my husband, I don’t want to watch him suffer the way his is now helplessly just waiting for his day to rest and be free of this torturous life that prevents him from his dignity.

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    • 31 January 2015 at 16:19
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      This is a joke. Your life belongs to you, not to some draconian government.

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    • 8 March 2015 at 20:45
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      Hi Samantha. I am so very sorry to hear about your husband’s suffering and ill health. If he would like, we could apply to the High Court, on his behalf, for the right to an assisted death. It would cost him nothing and he could change his mind at any time.
      Sorry too to hear about your grandfather. Emphysema is a dreadful way to die and an awful death to watch.
      Please contact me at lee@dignitysa.org if you would like to communicate further.
      Apologies for delay in responding. Have only now seen this comment.
      Warm regards
      Lee

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  • 29 September 2014 at 12:34
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    I believe that it is everyone’s right to die in dignity, especially in the case of any terminal illness. My Mother is only 74 years old and has been diagnosed with Alzheimer’s – it is painful to see how her personality has changed, even become aggressive although she’s not aware of it. She finds it extremely difficult to complete her sentences or to express herself in conversations, she also finds it embarrassing because she can’t tell people how old she is or give her date of birth. It is painful for any sibling to watch the “slow death” of Alzheimer’s. I’m of opinion that any person should have the right that if you are not conscious anymore and is only lying in bed full of pain and suffering, that you must have the option for “assisted dying”.

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  • 26 September 2014 at 10:14
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    I was deeply moved by Desmond’s insightful article …..Having attended a lecture by Sean at the 2013 Grahamstown festival where he told his story about assisting his mother to die, what jumped out at me and which I believe is at the core of the euthanasia debate is simply this……….denying anyone the right to mindfully die painlessly, peacefully and most importantly with dignity constitutes what must be the most blatant and inhumane HUMAN RIGHTS VIOLATION.
    I was delighted to hear that Britain’s supreme court recently ruled that a ban on assisted suicide is incompatible with human rights.
    It is a sad fact that “intelligent fools” abound and I suspect that the debate on euthanasia might be a quick and simple way for identifying such individuals
    Dr Bruce Copley, Pringle Bay, South Africa

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    • 26 September 2014 at 10:22
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      Thank you for your comment, Dr. We agree wholeheartedly that it is a human right to both live and die with dignity. We are meeting with Senior Councils, Advocates and attorneys in October to discuss the way forward. I would be grateful if you would contact me.
      lee@dignitysa.org

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  • 21 August 2014 at 13:37
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    I think it is your choice and your choice only to be assisted with death if you have a terminal illness. I watched and suffered with my family when it happened to my mom and sister. They both died the most horrific deaths, being able to do nothing but lie in bed suffering with pain and no dignity.
    Well now my time has come and there is no way that I want to go down that road. It took my mom eight years to die and in the last couple of year of her life she was just a bag of bones with skin and bedsored so large that if I put my two fists together it could fit into some of them. Plus you body starts rotting from the inside and it is really unplesant to even be near them. Now I know this sounds harsh but facts are facts. I do not want my little family that is still here to go through all that suffering againg so PLEASE if there is adoctor in Johannesburg or someone that knows of one that helps please let me know. Thank you

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    • 23 August 2014 at 09:48
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      This was incredibly sad to read, Lulu. I am so sorry that you had to witness the passing of your family in such an horrific way and that you, too, are facing the possibility of a difficult death. Sadly, as the law stands in South Africa at the moment, no doctor will, legally, be able to assist you to end your suffering. We are working hard to change this for people like you. We believe that you have a human right to dignity, which dignity extends to your last breath.
      Please let us know what kind of support structure you have and what your immediate needs are in order that we can see how we can help you.
      lee@dignitysa.org

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      • 4 September 2014 at 07:40
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        Good morning, thank you for your reply. In short I will just try to explain what I am going through presently. I was diagnosed with Colon Cancer in May 2012 which already spread to the liver. I had a piece of my colon removed and a part of my liver rwmoved. Last month I was informed that it is still in the liver and has spread to the spleen and lungs. Is there any way I could talk to someone privately as I dont really want to discuss certain problems that I am having for all to see.
        Thank you
        Kind Regards
        Lulu

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        • 4 September 2014 at 10:02
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          Hi Lulu
          Thank you for commenting again. I fully understand your need for privacy. Please email me with your land line and cellphone numbers in order that I can make contact with you.
          Warm regards
          Lee
          lee@dignitysa.org

          Reply
  • 9 August 2014 at 20:27
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    This is absolute proof that The Law is an idiot and that The Government is an a-hole.

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  • 3 August 2014 at 13:25
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    I believe that it is our own choice how to die if we are ill or too old to continue on one’s own!

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  • 24 July 2014 at 16:58
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    I am fully in agreement with assisted dying. I have seen so many people left to suffer when they could have passed away peacefully and with dignity. I would not want to be kept alive on machines

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  • 24 July 2014 at 07:05
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    My father is going through this now, it’s horrific for everyone, every day he hates waking up and wants to go, it’s so unfair, we should be able to help him, this was his worst nightmare, feel so helpless. He’s in Australia so the laws are worse there. It’s cruel, we are kind to animals.

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    • 24 July 2014 at 07:47
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      Watching or being aware of the suffering of a loved one leaves an indelible mark on one’s soul/psyche. More so when it’s unnecessary and alternative options and choices are available. I wish you strength during this difficult time. Know that there is a group of people who care and are doing everything possible to change these barbaric, unconstitutional laws which breach our human right to dignity. Just sorry it’s not in time for your Dad.

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  • 23 July 2014 at 17:34
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    Thank you for fighting this fight! I wish my Mom-in-law had been able to make the choice for dignity in death. Palliative care is terrible, and takes longer than what most people realize. She was comatose for over two weeks and for the two months before that she was in absolute agony with a very low quality of life. She couldn’t go to the toilet or do anything without physical help and she hated that. She wanted to pass with dignity, but cancer and our laws robbed her of that. She even tried to will herself to die when her whole family was around her for the weekend and was upset when she woke up instead. I’m certain she would have chosen assisted dying on that weekend if she had been able to and we all would have been happy for her to have that choice!

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    • 23 July 2014 at 18:51
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      Peta, I’m so sorry to hear about your Mom-in-law’s awful dying experience. I can only imagine how traumatic it must have been for her loved ones to watch that level of suffering and indignity. And ‘they’ want to tell us that palliative care is always enough! It makes me so angry. Stories like yours are what motivate us to succeed. And succeed we will. There are just too many stories like yours. Even one would be too much.

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  • 16 July 2014 at 15:13
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    It’s a human right, we should have the right to choose ourselves.

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    • 23 July 2014 at 18:54
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      Indeed it is. Indeed we should. And indeed we will – one day. In the not too distant future…

      Reply

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