RIP

One of the factors in hiring my current carer, Hannah (18 going on 19, doing Art Foundation this year before disappearing off to uni in September/October), was that she understood long-term illhealth. Not because of herself, or her parents - because of her older sister.

Her sister had been born with liver problems and had a transplant, and lived her childhood and adolescence more or less healthy. In the latter end of her teens she started getting ill again. Livers, as with other transplant organs, don't last forever. She started at university in London but wasn't well enough, and ended up back at home, back to the local hospital which had been treating her since birth.

Hannah came to work/care for me in April 2010. Her sister had been in hospital for at least a month at that point, and she was never well enough to leave. The goal, Hannah said, was to get her well enough for a transplant and keep her well enough long enough for a really good match to come up. As a second transplant, they wanted a really good match to improve the chances of success.

In September 2010 a match came up; 14 hours later, the new liver was in place. Hannah's sister went slowly from intensive care, to HDU, to a ward, with two trips back into surgery to try to find an internal bleed. Finally, in November, she was allowed home after months in the hospital. And stopped taking her anti-rejection pills, which was only discovered when, a month later, she became ill and had to go back into hospital. She was 'let out' for Christmas, but only managed a few hours at home before being rushed back in with a chest infection that became severe. Back into intensive care.

She was sedated, ventilated, then given a tracheotomy. She was in pain. One of the drugs she was given caused an extremely rare side effect of paralysis, and they didn't know if or when that would leave. She couldn't move, couldn't really communicate.

Yesterday was her 21st birthday, and she died.

It's a very strange position to be in: Hannah comes here five days a week, every week. She's talked about her sister, and her sister's illness, with complete frankness, and Mum and I have become very involved because we like Hannah so much, and care about her. Mum had actually met the rest of the family once (they're friends with neighbours, and Mum met them at a party), but I haven't; and yet we are both so very sad about this.

It's not unexpected, although of course it's still utterly tragic; I suspect Hannah has basically been waiting for this to happen, and from things she's said I don't think she's really felt her sister was really still her sister. And she's said quite frankly that her sister didn't really want to be alive anymore (thus stopping taking the anti-rejection pills).

It's got me thinking about life, death, and life-prolonging measures. I know my Mum's thoughts, and making a living will is high on her list of priorities right now. She's come very near death many times - last winter I think the hospital were extremely concerned with the e-coli infection in her lungs that was resistant to three kinds of antibiotics. I went in to see her only once (I was very tired, and it's 20miles outside the city) but she wasn't really well enough for visitors. I know very well that if she ends up needing ventilation (a very real possibility given her lung conditions), she does not want to continue.

But what if she's on a ventilator...but there's a chance she'll pull through and improve? This is why Mum needs to make a living will, because I don't want to be in that position. I don't want to be there, with my mother on a ventilator, being told that there's a 5%, 10% chance that she'll improve. Because I would know her wishes and yet I know that I would not want to let her go. Because she's my mum.

I think I know that if she were in that position but would not improve enough - would never regain any independence or dignity - I would be able to respect her choices. But would I? I can't know, of course I can't. Nobody can know until they're in that situation. And yet I know Mum's views and wishes, and I respect them - I agree with them. I feel the same - if I were to end up barely alive, on a ventilator, paralysed with no idea if it would go...I wouldn't want to be kept alive artificially like that, but when I said this to Mum, she said she couldn't make that decision, that if there was even the smallest chance that I could improve or recover, she would cling on to it - the way Hannah's mother has, of course. And I can't blame her for that.

Mum is already kept alive artificially: most people don't realise that. Several of the drugs she's on are literally keeping her alive, and if she stopped taking them she'd die. Very quickly, in the case of the steroids - without them, she'd lapse into a coma and die. Unless someone intervened, of course. Papworth are an excellent hospital, and we both trust her consultant there implicitly, but everything they do is keeping Mum alive artificially. Without the antibiotics, the physio machines, and yes the steroids, Mum would be dead by now.

I know that for a fact: Mum's uncle had the exact same lung conditions, asthma and bronchiectasis, and died when he was 54. Mum will be 55 in April.

I've told Hannah to take as much time off as she needs, and of course I'm paying her compassionate leave. I doubt she'll take long. She's kept working solidly throughout her sister's illness, and she's the kind of person who wants to keep working through emotion. If she takes more than a week I'll be surprised.