Living and Dying with Dignity

The last photo of Ali was taken on 24 November 2013

As the first anniversary of Ali's death approaches, it is inevitable that thoughts go back to the events of last year.  The last photo of Ali was taken on this day last year when she enjoyed a visit from her sister, Tina, and brother-in-law, Tony.   

Ali cheerfully joined in singing 'happy birthday,' and helped me to blow out the candle on a lovely chocolate cake Tina had made.  I felt quite choked, realising that it would be the last birthday candle Ali would blow out.   She would have enough breath for nine more days.

There is currently discussion in Parliament of Lord Falconer's Assisted Dying Bill. If enacted it would enable  patients, who are judged (rightly or wrongly) to have a life expectancy of less than 6 months, to commit suicide by obtaining prescription drugs to end their life.   

As is well known, Ali frequently wrote and spoke in the media (from about 6 mins 30 secs on the linked clip) against any form of "assisted dying" or "assisted suicide" or "voluntary euthanasia." She spoke against it with compassion, knowing well that life can be wretched and that death can be appealing - as it was for Ali for several years. She knew that if Lord Falconer's Bill, with its risible 'strict safeguards,' had been enacted thirty years ago she would have qualified to be killed in the late 1980s when life was at its lowest for her and when doctors thought she had less than six months to live.

It would obviously have been a tragedy if an "assisted dying" law had facilitated Ali's death nearly 30 years earlier.  And, of course, if Ali's life had been ended then nobody would have known that she could have lived for many years, and would have come to find a meaning and value to living, even though her physical and other difficulties continued.  But it would also have been a tragedy if an "assisted dying" law had cut short Ali's life even for those last nine precious days.  

Ali objected to the way proponents of assisted suicide have hijacked our language - the mantra of 'dying with dignity' has led to an increasingly widespread attitude that if you are terminally ill or disabled you can only have 'dignity' if you are killed.  The final days of Ali's life, which included much suffering, were lived with great dignity and she died with great dignity - a far greater dignity than those who choose 'the easier way out'  of suicide.

In September I was invited to speak at the national conference of the Society for the Protection of Unborn Children (SPUC) on the subject:  "Suffering for what we value: the legacy of Alison Davis." In concluding the talk I said a little about Ali's last days.  It seems fitting to reproduce now what I said then:

I haven’t spoken of Ali’s opposition to assisted suicide or euthanasia, mainly because I want to make just a single point now on this topic.  I don’t think it will be helpful as a public argument but I think it is something that needs to be learned and incorporated into the lives of those who don’t accept killing as the appropriate response to human suffering.    The point I want to make – which was Ali’s unspoken lesson to me in her final days – is that a painless death, without difficulties, is not really what matters.   

Ali had a week of respite care in the local hospice in October of last year and then spent the last six weeks of her life at home.  Some time after getting home she was unable to get out of bed even to go to the bathroom.   I was struck by the fact that, though it was a time of upheaval and of momentous change, it was a very peaceful time.  It sounds strange to say but – paradoxically – it was possibly the best six weeks of my life. 

When it was clear that Ali was dying a number of friends visited.  They normally had to wait a while to see her and then it would be for just a few minutes.  Ali had pain and was exhausted and her ability to interact was limited, but she was joyful.  The final photograph of her [above] was taken with me on 24 November, nine days before she died.

I want to stress that Ali received excellent care from our local GPs, nurses, health care assistants, and also from our local hospice.  They were faultless.  They were concerned that Ali was in too much pain. At best it was bad enough; at times it was extreme.  However, it seemed to me that, paradoxically, the more they tried to ease her pain the more she had.   This was especially after they put her on a syringe driver four days before she died.  The only way to be painless would be if she were totally zonked out, which she didn’t want.

Ali died at home on the morning of Tuesday 3 December.  She lost her swallow reflex on the Sunday night.  So from then, she could no longer take even small drops of liquid to drink; or liquid morphine for pain.  She would generally wake up for short periods, with pain coming soon after she was awake.  

About 8pm on the Monday night, after being awake for an hour or so, the pain was so extreme she wanted me to call the out-of-hours doctor.  It was known that if she called the out-of-hours service, Ali would receive an injection of diamorphine which she duly received and it zonked her out in seconds.  Knowing that she hadn’t had liquids for nearly 24 hours, and expecting that the diamorphine would last some time, it seemed to me that Ali might die without waking up again.

I was surprised, then, when Ali woke up at 1am.   She could say little – a few words at a time.  Often she would respond just 'yes' or 'no' to my questions.   It was soon clear that she was in pain. 

-  Do you have pain? "Yes."  -  Is it very bad?  "Yes." - Do you want me to call the doctor to give you something?  "No."   I frequently asked her if she wanted me to call the doctor to help with the pain. She always said "no".  I would ask:  - Are you happy?  She always said, and you could read it in her eyes: "Yes!" 

Ali once said that our life in the world is like that of an unborn child.   In a way ,we are unborn.  The unborn child knows only the womb.  He or she doesn’t know the marvellous world that lies beyond the womb. The suffering of his mother accompanies the child into the world – and it is traumatic for the child.  The world, Ali said, is like a mother’s womb.  It is a preparation for what lies beyond.  What lies beyond is so much beyond our imagination, just as the world is beyond the imagination of a child in the womb.  Just as suffering accompanies our entrance into the world, so it is fitting that it accompanies our exit from the world.  We prepare for what lies beyond.

I am convinced that Ali didn’t ask me to call the out-of-hours doctor again, because she knew that if she received another injection of diamorphine she would be zonked out for the rest of her journey into the next world.  She didn’t want that.   She wasn’t clinging on to life, afraid to let go – the sentence she said more than any other in her last weeks and days  was “I want to go home.”  She was anticipating her eternal destiny – but she knew she wanted to take with her as much as she could.  And what can we take with us?  Not material goods – but  the treasures of our good actions, our prayers, our suffering,  our love.

How precious were those last hours of Ali's life!  The good deed she performed then, contributing to the treasures she took with her, was a final lesson to me - and, through me, to you and others - how to die with real dignity and courage.  She prayed - expressing sorrow for the things she got wrong in life - and offered up her suffering to God, in loving gratitude for the life she had been given, and for  all His love and mercies. 

Ali amassed all the treasures she could of good deeds, prayers, suffering and love - while she had the opportunity to do so.  And for some silly reason she loved me and wanted to spend as much time as she could with me. 

 So she didn’t want me to call the doctor to zonk her out. She wanted to be sat upright in the bed – which ensured that she would live longer – and for me to hold her.  I encouraged her as best I could. We prayed.  Her body gradually wound down in a way I had never experienced before and eventually she lost all ability to communicate.. I believe though that she remained conscious, and could hear the ongoing encouragement and prayers, until the end.   Ali died at 8:40 in the morning.

She could have died easily and painlessly, but chose a far happier death of suffering with great love.

As I said [earlier in the talk], I’m a wimp.  But I hope I can learn from Ali to be willing to suffer lovingly during life and especially at the end of my life.

Ali was small - four foot something and getting smaller as her spine collapsed. But she walked head and shoulders above us all.