My brother David

My brother David died recently in the care of the NHS. His death was not their fault: no one can do anything about bone cancer except alleviate the pain.  Which is what they spectacularly failed to do.

Bone cancer does not kill you. It just hurts like hell and your bones become so fragile that coughing breaks ribs. You have to wait for the disease to spread to an organ, the failing of which will kill you. Or you can hope for “the old man’s friend” pneumonia, to finish you off.

Either way, you should not, surely, have to endure months of pain and die in agony? Pain relief is possible, and many hospices and a few hospitals (notably the Royal Marsden) manage a patient’s dying days with compassion and palliative drugs (notably morphine) tailored to the patient’s pain.  But most do not.

Hospices have a better reputation. Their aim is to aid a peaceful death. Hospitals, on the other hand are tasked with keeping the patient alive, however much he suffers.

David was eventually given morphine. The blessed relief would last three hours, but the nurses would be unable to give him his next dose for another hour. So out of every four hours, one would be spent in groaning, crying, sometimes begging, agony.

Consultants see their patients rarely and briefly. If they saw them in extremis, pity might move them to increase the dose - something the ward staff, who must deal with the pleading and crying, cannot do. It must be hell for the nurses; hell also for the other patients in the ward; distressing beyond measure for the family.  And torture for the patient.

The truth is, I suspect, that doctors fear being accused of murder, or mercy-killing. They dare not prescribe enough morphine to make the patient comfortable.  In our parents’ day, doctors would give their dying patients enough drugs to relieve the pain. Of course this also made them drowsy and they slept a lot. And if it helped them on their way, no one thought it wrong. 

You would not treat a dog like that. And if you did, the RSPCA would rightly prosecute you for wilful cruelty and neglect.

In the last six weeks a pattern developed. David would get pneumonia, be admitted to the hospital, they would give him antibiotics, he would recover, be sent home. And a week or two later, be admitted again. 

With only a fortnight or so to go, David’s wife discharged him, thinking it would be easier at home.  They lived in a two-bedroom house and their four children came to spend their father’s last days with him. There were some good times. When the morphine was doing its job, David would be pain free, surrounded by his family, joking, or (unusual for him) telling them just how they had enriched his life and how much he loved them. That is how dying should be.  And proper palliative care allows that – the space and time for the dying and the grieving to say those things they need to say, to give each other reassurance, comfort and love.

But mostly it was not like that. Those four children and beloved wife’s memories should be of those good times. But for David’s family I fear they are overlaid by the memories of the one-hour-in-four of agony for David and anguish and helplessness for them.  Two of my nieces, separately and unknown to each other, pleaded with the agency nurses who came night and morning, to increase the morphine dose. But they could not, any more than the hospital nurses could. One said, “If you knew how many times we are asked that! We would willingly do it. All over the country, in and out of hospitals, people are suffering like your Dad. It’s so unnecessary, but no one admits its happening.”

David’s wife and children took turns to be with him, night and day. One said to me she’d sat for half an hour with a pillow in her hands, trying to screw her courage to the sticking point. But she could not suffocate her own Dad. 

In the end David, determined to end the pain, refused any more antibiotics, so allowing the next dose of pneumonia to kill him. Dying of pneumonia is a horrible death. Basically you drown, slowly and painfully, as your lungs fill with mucus and you cannot breathe. David’s family had to endure the sound of laboured breathing, then for the last five days, a constant loud “death rattle”. They had to bear the sight of their father and husband, thick green discharge running from mouth and nose, veering from semi-coma to excruciating pain. Death is always distressing, but in 2012, with all our talk of respect and consideration for others, how can it be that a wife ends up praying for her husband to please, please, just die?

Surely all that is needed is something like a hospital protocol that if the patient and the next of kin want to end the misery, and two doctors agree the patient will be dead in a month anyway, they can increase the dose of drugs to the level sufficient to alleviate the pain, even at the risk of death. 

If that is a step too far, cannot we at least accept Lord Joffe’s proposed bill which would allow, if not “mercy killing”, at least “assisted suicide”? This would make it lawful for doctors to prescribe, though not to administer, a drug that would cause death. The patient would have to request it, and take it while still capable of doing so. 

The present state of affairs is surely monstrous. With 80% of the population is in favour of assisted dying, what are they waiting for?