How long should treatment continue?
It is commonplace to knock the NHS but I don't think there was anything the staff at Jimmy's didn't try in their efforts to save Joe and we have nothing but praise for them. From oxygen therapy to additional nitric oxide therapy, plasmapheresis to dialysis; standard ventilation through to oscillating ventilation and 24 hour nursing care from staff who were completely committed to not only helping Joe but also trying to help us. We truly believe there was nothing more that could have been done for Joe. At one point they brought him a special bed that was so new even the ICU staff hadn't seen it. It moved Joe, vibrated him and even gave him physiotherapy by pounding his back to loosen the secretions and blood in his lungs. There comes a time however when you have to face the facts that there really isn't anything else to try. After the 5th of March we had come to that point and when the doctors asked to see us I think we knew what they were going to say.
When Joe was first ventilated and we were discussing the treatment that Joe was receiving, one of his nurses had said to us that whatever they did in the end it was down to the patient. When they have exhausted everything, the only thing left is for the patient to respond - and Joe wasn't responding to anything they did. As I explained earlier, he would seem to be improving slightly but would then dip again. We also knew that the treatment he was having carried its own risks; particularly when someone is on mechanical ventilation as long as Joe had been. When the ventilator pushes air into the lungs this can cause a part of the lung to get over-expanded and for air sacs to leak air into the chest cavity and cause the lung to collapse. I forget how many time his lung had collapsed at this point but it was at least twice, perhaps three times. Each time this happened it was further strain on Joe's body and already struggling lungs. It was becoming apparent what an agonising position we were in; Joe couldn't survive off the ventilator but the persistent treatment was beginning to cause further damage to his lungs.
The doctors explained again everything they were trying to do for Joe and they also explained that they were still no further forward in discovering what was wrong with him. To have any hope of treating him successfully they needed to do further investigations but they couldn't do anything that involved moving Joe because he was too fragile. Even tweaking his treatment slightly meant that Joe would desaturate. So they were clearly at an impasse.
In an horrific echo of that first meeting in the relatives' room it was clear that there was something else the doctors were wating to say to us. Once again we both felt that this 'unsaid' was why we were in this room in the first place. everything else felt like a preamble. Eventually the doctor said it.
'We need to look at what the options for treatment are and at the moment there doesn't seem to be any more that can be done. Unless there is significant improvement soon there will come a time when we need to consider whether continuing treatment is the right thing to do'
I think it was Anna who said 'when do you think we will get to that time'.
'In the next couple of days'
We were being asked to consider the unthinkable and it was too hard. Each time we had been in this situation the doctors had always asked us if we had any questions and we rarely did. You would think we would have dozens, why, when, what, how, - but it was as if we were struck dumb. Certainly thought wasn't an option, it wasn't possible. All we did was lurch from one god-awful piece of news to another and there was no space to think about what was going to happen. I'm quite sure also that there was a part of us that didn't want to know. If we didn't ask then they couldn't tell us and it wasn't happening.
Returning to the cottage that night we went through the motions of keeping ourselves alive whilst contemplating Joe's death. Even eating felt like a betrayal. We were letting normal life go on and he couldn't have a normal life. It's a phenomenon we are all aware of, the proliferation of poetry and prose that describes how life goes on is testament to that; but it still felt wrong to be just carrying on. Even after writing all this I still struggle to describe the utter desolation we felt at what was happening. Hope was a stranger again.
When Joe was first ventilated and we were discussing the treatment that Joe was receiving, one of his nurses had said to us that whatever they did in the end it was down to the patient. When they have exhausted everything, the only thing left is for the patient to respond - and Joe wasn't responding to anything they did. As I explained earlier, he would seem to be improving slightly but would then dip again. We also knew that the treatment he was having carried its own risks; particularly when someone is on mechanical ventilation as long as Joe had been. When the ventilator pushes air into the lungs this can cause a part of the lung to get over-expanded and for air sacs to leak air into the chest cavity and cause the lung to collapse. I forget how many time his lung had collapsed at this point but it was at least twice, perhaps three times. Each time this happened it was further strain on Joe's body and already struggling lungs. It was becoming apparent what an agonising position we were in; Joe couldn't survive off the ventilator but the persistent treatment was beginning to cause further damage to his lungs.
The doctors explained again everything they were trying to do for Joe and they also explained that they were still no further forward in discovering what was wrong with him. To have any hope of treating him successfully they needed to do further investigations but they couldn't do anything that involved moving Joe because he was too fragile. Even tweaking his treatment slightly meant that Joe would desaturate. So they were clearly at an impasse.
In an horrific echo of that first meeting in the relatives' room it was clear that there was something else the doctors were wating to say to us. Once again we both felt that this 'unsaid' was why we were in this room in the first place. everything else felt like a preamble. Eventually the doctor said it.
'We need to look at what the options for treatment are and at the moment there doesn't seem to be any more that can be done. Unless there is significant improvement soon there will come a time when we need to consider whether continuing treatment is the right thing to do'
I think it was Anna who said 'when do you think we will get to that time'.
'In the next couple of days'
We were being asked to consider the unthinkable and it was too hard. Each time we had been in this situation the doctors had always asked us if we had any questions and we rarely did. You would think we would have dozens, why, when, what, how, - but it was as if we were struck dumb. Certainly thought wasn't an option, it wasn't possible. All we did was lurch from one god-awful piece of news to another and there was no space to think about what was going to happen. I'm quite sure also that there was a part of us that didn't want to know. If we didn't ask then they couldn't tell us and it wasn't happening.
Returning to the cottage that night we went through the motions of keeping ourselves alive whilst contemplating Joe's death. Even eating felt like a betrayal. We were letting normal life go on and he couldn't have a normal life. It's a phenomenon we are all aware of, the proliferation of poetry and prose that describes how life goes on is testament to that; but it still felt wrong to be just carrying on. Even after writing all this I still struggle to describe the utter desolation we felt at what was happening. Hope was a stranger again.
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