I have looked after someone with no speech and little movement who needed to be artificially fed so I do know something of what this family is going through.
The thing that always amazes me is that the right to die discussion takes place completely separately from the deaths facilitated by doctors. I saw one GP last week estimate that 130,000 patients a year had their deaths facilitated by doctors in the UK. This normally goes under the cover of pain control. I have seen many circumstances where the morphine dose is increased until death is inevitable. I know that family members are sometimes given responsibility for a morphine driver and can just let their family member drift away.
But there have always been more explicit methods. In Victorian times you would just take your extra laudanum like a good (dying) patient....and if you weren't dying before, you are now. And I remember hospitals having something called a Brompton Cocktail that was designed to see you off in a haze of morphine, cocaine and booze.
And now we have the Liverpool pathway. I know that its origins were well intentioned and it is probably still used really carefully, and caringly, in hospices, but the more widespread use is getting worrying. People who are not terminally ill, people who want to live, people whose prognosis has not been discussed......they can all find their way onto the Liverpool pathway. And unlike morphine drivers or Brompton cocktails, it can be a painful way to go, denied medication and also denied food or water. I said I had looked after someone who needed to be artificially fed. Before their naso-gastric tube was fitted the biggest problem was thirst, a far worse sensation than hunger. And the worry is that the Liverpool pathway inexpertly applied without compassion or sensitivity is just allowing people to die in the agony of thirst. Withdrawal of fluids is apparently a common component of torture. When we have a torture technique masquerading as a medical intervention, then we really are in trouble.
I can never understand how we come to have all of the legal debate about a very few individual cases where people want to have the right to die, and nothing about the apparently thousands of cases where cruel treatment is quite deliberately causing patient deaths. How can these things co-exist?
I think I know the answer. The families who pursue their right to die cases are challenging the classic British fudge that has always been the way things are done. Here's a little dose of morphine, now be a good chap......That's the way it gets done. But if the patient says - I want to know my rights, I want to know how the law will treat this, I want to know how my family will be regarded after my death - then that causes problems.
What is wrong is that this never gets dealt with as the whole system problem that it is. Instead it gets left to families like this one to pursue their individual case and to be forced to let the rest of us engage in the most painful aspects of their lives.