Thank God he’d stopped that awful rattling sound. Now his breaths were even, but with increasingly longer gaps in between. I knew this could go on for some time, but I was pretty surprised when ten minutes later, the gap just went on – and on, and on and on.
And that moment – of no more breathing – that’s what it’s like when someone dies.
I am not a nurse who has seen many die – just a woman who watched what happened to her husband. Since then, I’ve done a lot of research and talked to many people, and right now, am part of a team of friends sitting with another friend who is going through the dying process.
So what I’m about to say is a very personal story of what happened to one man, informed by what I know now about the dying process. (I’ve been asked to write this, so stop reading here if you don’t want to know the details).
My husband Philip knew he was on borrowed time. The operation to take out the cancer from his stomach had not worked, there were still traces of it to be found in the stomach lining. His decision to not continue taking chemotherapy also meant he would be dying sooner than later. That turned out to be about 5/6 months before he actually died.
But it was only in the hospital that I began to see what happens to a body when it is ready to leave this world. (He had been admitted initially to have radiotherapy, but had been kept in because he was so thin and unable to eat any longer; it never once crossed our minds that he wouldn’t come home again).
He was fed intravenously (which was what he wanted) but it took several weeks of doctors trying to get a feeding tube down his throat before they finally said there was nothing more they could do.
At this stage, Philip’s body was already very near the end. (Though you don’t know this at the time, I hasten to add. At the time, we had no idea, just wanted him to be at home. This proved impossible as he was too ill to be moved by this stage, meaning he would likely have died on the journey home. You can read a full account of this in the first section of my book Gifted By Grief, and Philip’s blog about his last year – a very moving read – is here).
Philip had prostrate problems so eventually was put on a catheter so he didn’t have to get out of bed. This proved to be a huge challenge as he then developed really bad bed sores, which shouldn’t have happened. Because he was not being moved, and wasn’t wanting to move himself, this was a result.
There were problems with getting his morphine dosage correct, and so he had very unpleasant hallucinations. He developed pneumonia and was given antibiotics.
(If I had known then what I know now, I would have questioned the thinking behind that – but Philip was afraid of dying and wanted to stay alive as long as possible, regardless of his health, so even if I had known, it might not have made any difference).
He fought off that first bout of pneumonia, only to succumb again a couple of weeks later.
He was still being fed through an intravenous drip all this time. (Another anomaly, what was he being fed for, if he was going to die anyway? It could surely only prolong the agony. But again, I didn’t know and he didn’t want to know).
Naturally, when the body is closing down, desire for food and for drink comes to an end. In Philip’s case, the intravenous tube was only taken out when I saw he was going to be more comfortable without the constant noise the machine gave off.
Even then the doctor looked at me with alarm in her eyes, and asked ‘do you realise what that means?’ Honestly, what a silly question! Is our fear so great, even with our doctors, that we have to prolong life-giving sustenance even when it is against what nature is wanting? It would appear so.
Philip’s body had started to swell up around his tummy and legs, as fluid built up in his body. He had not had a bowel movement for weeks; and his catheter bag was filling less and less quickly. He had lost interest in what was going on around him by this stage.
He was not in pain as far as I am aware, at least he didn’t complain of it. He spoke very little, having said that talking exacerbated the cough reflex, which was painful, and meant he coughed up unpleasant tasting black bile.
His eyes were closed most of the time by now, and he was often sleeping. His colour had been yellow-ish for a few days, maybe a couple of weeks, as his liver was under strain.
When I told him that his kidneys and liver were no longer working properly, he did hear that, knowing that this meant the end was near. He closed his eyes again.
The night before what turned out to be his last day, I was called into the hospital in the middle of the night by my friend Barbara who was sitting with him. I was met by a terrified man, sitting upright in bed, nurses bustling around. (I have worked hard to distance myself from this particular memory, it was not a pleasant one).
He had been having a horrible coughing fit, producing a lot more black bile and feeling very distressed by it. He told me ‘unless this changes, this is it. I can’t bear it any more’. He was given more medication and was settled down again, much more comfortably.
That turned out to be his last day, during which he had the rattley breathing in his throat that precludes death so often (it sounds horrible but he did not seem in any distress).
Later that evening, having been apparently peaceful all day, but still able to bring his hands into the prayer position and murmur ‘take me’, Philip looked uncomfortable in the bed, as if he was falling out.
Clearly by this time he could not move himself at all; I asked the nurses to move him, and left the room to let them do that. They called me back in to say his breathing had changed – no longer was it rattling in his throat; instead there were normal breaths being taken, but with a long gap in between. After about ten minutes of this, there was a very long gap – and then no more breaths.
It’s been good for me to write this in the middle of the night, as I have done. I had awoken wondering if this really is my path in life; questioning why I had chosen (yet another!) opportunity to be a pioneer, in this case, educating people to feel more comfortable about death, dying and grief. Sometimes it does feel like I’m going against what everyone wants to know about, which is not usually end of life matters!
But writing this has made me realise once more how utterly crucial this topic is. In a day when the technologies of modern medicine mean we are likely to die a much slower, more lingering death; when doctors themselves are required to do all they can to sustain life; when pneumonia is treated with antibiotics instead of being regarded as ‘an old man’s friend’, it is even more important that we overcome our fear of not being here anymore.
And we can only do that by addressing it now, when we are alive and well.
I know from my own experiences of being with my partner as he died in hospital the fear you talk of the medical staff having.
To this end I have an Advanced Directive and a DNR in place, hopefully with both it will be very clear that I wish nature to be allowed to take it’s natural course without out medical interference/intervention.
I believe that you are right to speak out and I’m glad you have found a platform on which to do it.
In my own small way I speak openly about my plans for my end of life and my funeral.
I’m aware that it makes people uncomfortable as does my raising awareness of my childhood abuse and my subsequent mental health issues.
Sadly all of these things are facts of life and will not disappear no matter how many rugs we push them under or how many backs are turned. Fingers in ears while singing lalala are not going to make them go either.
So to my mind those with a voice have a duty to speak, we may never know if we were heard but that’s ok – we just have to speak up, speak out.
Yes Lucy, you’re right. Talking about it is so important; people don’t realise until it is too late. But the more of us who do what you have done with your preparations, and who are willing to share about it, the better. I salute you!