We’ve all heard horror stories about people who’ve been left to die in hospitals, without even water. There’s even a (now discredited) system, called The Liverpool Care Pathway for the Dying Patient (LCP), where hospitals seem to be trying to hasten the deaths of patients who are deemed to be terminal.
To be honest - I know of two people – one a relative - who chose to refuse food and drink because they felt it was their time to go. And a long and distressing way it is to go. I have already started to make plans about hiding paracetamols where I can get at them when I feel it’s my time. Preferably washed down with a large gin and tonic.
But my experiences over the past few weeks, ever since my mother went to see her chest specialist for a routine check-up, which led to her being referred to the Palliative Care Unit, have given me a whole new insight into the 21st century way of death.
As my purpose in writing this blog is to be helpful to anyone else who may be in the same situation as me, I’m going to go into details here.
Once you’re under the Palliative Care system, all sorts of things seem to come into place, so I now feel quite supported and have a clearer idea of how to do the next phase of my mother’s life.
Because she now is into the final stage. It may go on for a long time – possibly another year, but there has been a step change in her condition, and I am now undoubtedly living with someone who is dying.
Lots of things have happened very fast. A man just turned up with an oxygen condenser, and quickly got Mum set up with oxygen being very gently pumped into her nose. So - no lighted candles when the vicar came round the following day to do communion.
Then we had a visit from the Palliative Care Team, (actually McMillan Nurses, who now do all P.C. I didn’t know that) who went through a whole list of questions, including difficult questions about end-of-life care.
We know we want Mum to stay at home as far as possible. Mum’s wish is to die quietly in her own home, not to go to hospital if at all possible. We now know that if she does require hospital admission, then it will be a Hospice rather than a General Hospital, which is a much quieter and nicer place. But that will only happen when there is clearly some treatment that would benefit her that cannot be done at home - such as anything intravenous.
But then they ask her ‘Do you want to be resuscitated?’
So - this is where I find out that if you die, they don’t just leave you dead, they do CPR on you and bring you back – as a default. They have to have a legal form called Do Not Attempt Cardio-Pulmonary Resuscitation order (DNACPR), aka a purple form. Apparently it’s that colour so it’s unmistakable to any medical personnel who turn up at the house.
You get it from your GP, if the patient agrees to it.
Mum just didn’t have a clear answer. She said ‘Well, theoretically, no, but I don’t know how I’ll feel about it at the time.’
It was hard for the PC team person to be too brutally direct with her, and Mum kept falling asleep while the woman was trying to discuss this with her. On her way out I had a discussion with this woman, who said that if it was her she'd be able to make the decision not to do CPR, but the younger ones are so scared of litigation, they will resuscitate - even with someone like her, unless they have this purple form.
If she has to go to hospital with pneumonia and dies while she's on a heart monitor, unless they have this form in the system on Mum’s notes, the crash team will rush in and pump on her chest and shock her and get her back to life, and then she'll still have pneumonia, but she’ll be semi-conscious with broken ribs, and she’ll just linger on, in pain and still very ill, and it will be utterly ghastly - then she'll have to die again.
This is the main reason to keep her out of hospital - which she agrees with.
Even if she dies here in the house, which is what we would all like - they may insist on trying CPR unless there is a purple form in the house which is recognized by para medics and anyone else as legally allowing them not to resuscitate her.
The prospect is utterly ghastly. As far as I am concerned there is no fucking way I am going to let them resuscitate her and then let her linger in a limbo state till she dies anyway. And how many times would you have to die before they finally let you stay dead? Obviously if she’s responding to treatment and there is a chance of her making a recovery, then it’s not an issue. But once her heart stops, even if she had seemed to be getting a bit better, I think that should be it.
I’ve spoken to friends who’ve told me they had very different experiences with parents dying, but when I ran it past the lovely, very good, GP, she said my take on it was substantially correct. Even if quite a bit of time had passed between Mum dying at home and paramedics arriving, which would surely be around 20-30 minutes even if I was sitting by Mother at the moment of her death, and longer if I'm out of the room at the time of death, the GP said they may still try CPR on her.
This is all a very far cry from when my husband died in 1984. He just told them verbally that he didn’t want any further treatment and would stay at home till he died there. When he died there was no question of resuscitating him, it would have been pointless anyway, but he didn’t have to sign a document stating that he would not sue them if they didn’t resuscitate him.
FFS! The whole thing is a travesty now.
So - I’ve very gently found the right way and right time to go over this again with Mum. I had to think carefully about when she was most likely to be awake enough to deal with it, as she sleeps all the time now. I chose to do it while I was giving her a bed bath, first thing in the morning – as she is quite alert then and it’s a very intimate and tender time, with no loud music playing.
I was worried that she didn’t get what the question was about, and rehearsed it over and over in my mind to find the best way to tell her. But in the end she just said, straightforwardly, “I have been thinking about it, even before that woman came, and I think it is the best thing not to be resuscitated. It’s just that it’s scary to think of. I know I have to go sometime, and I do accept it, but when I really think about it, I’m scared.” My eyes filled with tears.
When I did tell her briefly, that they would do CPR on her even if she’d died in a nice gentle way at home just as she hoped for, then she was quite clear it was right for her to get that form.
Over the years I’ve had friends suggest I get Mother to make out a Living Will, when it was clearly not appropriate to push her into this conversation before she was ready. They seemed to think I should just insist on this. To which my response is - Go get yourself a Living Will if you are ready to think of this. Leave others to decide when they are ready in their own time.
One of my brothers decided he’d just sit down and talk this over with Mum a couple of years ago, and he came back and told me it had all been settled. When I checked with Mum she had no idea that was what the conversation was about. So my next piece of advice is to talk about it more than once. Don’t assume you are both talking about the same thing. Be patient. And be sensitive.
On a different note – they are going to send out an Occupational Therapist to see Mum and assess if there is any kind of transfer aid that can be used to get Mum from chair to wheelchair/commode/bed. At the moment the carers and I are coping, but when Mum gets weaker they won’t allow the carers to help her as they are not allowed to do lifting, only assist to stand. Once the carers can no longer come I will be restricted to the house most of the time, and no longer be able to take whole days off to have a break. I know from past experience this will push me to the limits and will be unsustainable for a longer period, so I am desperately hoping there will be something that can help. One of the carers tells me there is something but it’s nearly £3000, so is very hard to get one given to you by the NHS. I’m waiting to see what they can offer.