When they told my husband he had four months to live, he wanted to go to Dignitas. But by the end, at home surrounded by love, he was so glad he didn’t . . .
THE evening of February 7, 2019, was like every other in any February: cold, dark and damp. As I drove my husband Paul to hospital to get the results of tests he’d undergone for a troublesome stomach ulcer, we were planning where to book for our family summer holiday — to remind ourselves that sunny days weren’t that far away.
We walked from the car park and through the hospital’s revolving door, still chatting about holidays.
But the smile left my face within just seconds of my husband giving his name to the receptionist.
A nurse sitting behind the desk looked up sharply then hurried away through the doors of Consulting Room 2, just as the receptionist told us to follow her. And as I turned to face Paul, I found that I couldn’t speak.
You see, I knew exactly what that nurse was doing. She and the doctor had gone through the patients’ notes before the clinic began and he had said: ‘I may need some support for this one — can you sit in, please.’ It’s a role I had played many times when I worked as a nurse in outpatients.
In silence, we followed the nurse. Just a few brutal moments later, Paul had been told he had terminal bowel cancer and given a prognosis of four months to live.
Nothing could be done, we were told. It was inoperable. Paul would be referred to an oncologist to discuss chemotherapy, which could give him additional weeks or months. And we should visit the GP to discuss options for end-of-life care as soon as possible.
We were back out of that revolving door, stunned and standing in the car park, within ten minutes of entering it. It felt as if the ground was opening up beneath us.
We had three beautiful daughters and were the closest of families: how could we cope with this? How could we inflict this devastating news on our girls? The tears came as the shock suddenly hit us both. It was some time before I could drive.
As we reached home and I turned the car into the drive, Paul looked at me in despair. ‘I can’t do this,’ he said. ‘I can’t do it to the girls, or to you. I saw how my dad died with bowel cancer and what my mum went through.’
Then he added the words that shocked me to the core: ‘I want to go to Dignitas. Now, while I still can.’
In the event, that is not what happened. The process to sign up with Dignitas takes a considerable time. You have to register, pay an annual subscription, provide medical and doctors’ records. Paul’s short prognosis timed him out. (The devil is in the detail.)
But, as I will explain, the peaceful way he died at home four months later — surrounded by his loving family — only reinforced my strong view that assisted dying is wrong. Many, of course, disagree with me. Just before Christmas, Esther Rantzen, who is fighting stage four lung cancer, announced she had registered with Dignitas, explaining that her decision was driven in part by her wish that her family’s ‘last memories of me’ are ‘not painful, because if you watch someone you love having a bad death, that memory obliterates all the happy times’.
She has called for a change in the law to allow assisted dying.
In Ireland, the Joint Committee on Assisted Dying has been formed to consider and make recommendations for legislative and policy change relating to a statutory right to assist a person to end his or her life (assisted dying) and a statutory right to receive such assistance.
As it happens, there’s a meeting in the Oireachtas today which will be attended by healthcare professionals and representatives from Voluntary Assisted Dying Australia and New Zealand (VADANZ).
But the truth is that there is no need for anyone to have a bad death or to die in pain today. Medication is sophisticated and palliative care services should be prioritised by government.
Responsibility for providing access to palliative care and pain relief lies with the state, and no government should shirk its responsibility by legalising a cheap shortcut to the end of life.
Today, those with a terminal illness can meet their end peacefully on a morphine syringe-driver, whether at home or in a hospice or hospital.
By contrast, the end of life medication administered at Dignitas, a drug taken in 60ml of water and swallowed, does not, to my mind, result in a peaceful end.
It is sudden, brutal, clinical and, I imagine, distressing for those who have to watch. And it surely leaves loved ones with an end-oflife memory many would rather not have.
If the ending of human life was made legal in countires like Britain and Ireland, we would be asking doctors to kill.
This would be a massive societal change with immense consequences. There would then be pressure to expand the eligibility criteria to perhaps include the disabled, the young and the depressed, as has happened in Canada and Holland.
Those who feel they are a burden on their loved ones could feel pressured to avail themselves of euthanasia when they fall ill.
And would you trust those managing health budgets not to apply pressure to someone who is costing the state and depleting budgets due to their poor health, despite the fact that they may be enjoying every day of their life?
Which brings me back to Paul. His death WAS a good one — and, despite his fears, he DID enjoy his last days.
But he chose to quicken his end by not having chemotherapy, which would have given him the extra months I so wish we had been able to have together.
Paul was never alone. Our daughters moved back home and the house was filled with friends and laughter, memories, music, the dogs on his bed and hours of conversation.
A hospital bed arrived along with a plethora of equipment. His oral morphine and anti-anxiety medication made him funnier than ever and kept him totally free from pain.
The doorbell never stopped ringing and the kitchen resembled a bakery as friends dropped in and I became a short-order chef, dishing up endless meals. It was on May 21, when we returned from a lunch for my birthday, that Paul physically struggled with the stairs up to the bedroom to lie down. I knew then that he would not make it back down again.
We curtailed the visitors and called the GP, who was beyond kind and caring. He organised local hospice nurses who visited every day and for whom we had nothing but praise. He also organised a local agency which sent nursing assistants twice a day to help us wash Paul and change the sheets.
Paul loved the attention and the banter. A local charity sent a nurse to sit with us through the night. Their experience and kindness meant so much.
A week later, one morning, Paul struggled to swallow his oral morphine. The physical process of dying had begun.
It was time for the syringe driver. Despite the months of preparation, I struggled so much. With the morphine, he began to slip away for longer periods of time.
I asked the hospice nurse to remove it — I wanted Paul back. Despite the fact that I had nursed many patients at the end and knew what we were facing, I was in denial.
The nurse hugged me and said: ‘Nadine, he’s dying.’ He was, and it had just hit me.
Our house was filled with music and laughter
Nothing could be done, we were told. It was inoperable
It was us who were suffering. He was pain free but we weren’t. Grief is the price we pay for love, and it cannot be avoided, no matter how or where or when the end arrives.
In our last moments, when he was awake, I sat on his bed and sang to him — Joni Mitchell’s Both Sides Now. He had watched her sing it at the Isle of Wight pop festival and it was a magical memory he had relived with us.
Tears ran down both our faces, my daughter photographed us. Somehow we all knew this was it.
His last words to me were that the past few months had been the best of his life, and he didn’t want to leave us.
He said he only wished we had longer, that he loved me. Then he closed his eyes and slept for three peaceful days before he left us for good.
He died on June 7. Four months to the day following his diagnosis. He had moved from desperately wanting to take a trip to Dignitas, from imploring the girls to make it happen, to wishing that he hadn’t refused that chemotherapy — because it would have given him a few more precious months.
He didn’t die in a clinical setting in Switzerland, but at home in our arms.
And at the end, that was exactly where he wanted to be.