About 10 years ago, when I first started working on infusion devices, I met a medical director who did a lot of work in hospices; he noted that the motors in the syringe drivers in use at that time hummed gently while delivering medication, and that many families hated the constant reminder that this meant that their loved one was on end-of-life care.
Recently, I have experienced this at first-hand, except that the syringe driver being used was mercifully quiet, and did nothing to remind us of its presence. It only really featured when Dad (now very peacefully sleeping) had to be turned to a different position, when the care professionals had to take care not to occlude or dislodge the line. And yet this simple device had huge emotional import: it still, silently, announced that the end of a life was near. It was exactly the ending that we had agreed we would want if possible: peaceful, not disrupted by any invasive or disruptive interventions, with family around. And yet I still found myself wanting to remove the driver because it signified a conscious decision, or determination, that Dad was indeed going to die. Maybe if I removed the driver then Dad would spring back into life. So I find myself with very mixed emotions about the driver: gratitude that it did indeed contribute to a peaceful, pain-free ending combined with distress that it announced and determined the inevitability of that ending.
As a technology professional, I of course also found the device interesting: the nurse who set it up did so with great care, and clearly found it easy to use: it is a task she performs routinely. But the three aspects that we highlight in our paper on "Bags, Batteries and Boxes" all came up in the conversation around the driver. The disposable bag provided was identical to the one featured on the left in Figure 1 of our paper (though all it did was notionally hide the driver which was, in any case, hidden under the sheet). The nurse replaced the battery at the start and after 24 hours to minimise the risk of it running out of charge. The box was locked to prevent tampering (correct) but, bizarrely, when it came to removing the driver after Dad's death, I was the only person in the room who knew where the key was located, which rather undermined its role as protection against tampering. Since no nurse visited after Dad's death and I didn't want him to be moved while still attached to said driver, I asked the doctor to remove the butterfly needle. Clearly, the doctor had never done such a thing before, reinforcing findings from our study of incident reports involving syringe drivers used in private homes that doctors are sometimes put in the position of having to use technology they have no familiarity with. Thankfully, the doctor did kindly remove the line, gently as if removing from a living patient, and we could send Dad off suitably clothed and unencumbered by redundant technology. I can only assume that the driver was returned to the community nurse team later.
I'll close by thanking the amazing staff at Tegfield House, who cared so diligently for both Dad and us and the equally amazing NHS nurses and doctors who cared for Dad over many years, and particularly in his final hours.
Recently, I have experienced this at first-hand, except that the syringe driver being used was mercifully quiet, and did nothing to remind us of its presence. It only really featured when Dad (now very peacefully sleeping) had to be turned to a different position, when the care professionals had to take care not to occlude or dislodge the line. And yet this simple device had huge emotional import: it still, silently, announced that the end of a life was near. It was exactly the ending that we had agreed we would want if possible: peaceful, not disrupted by any invasive or disruptive interventions, with family around. And yet I still found myself wanting to remove the driver because it signified a conscious decision, or determination, that Dad was indeed going to die. Maybe if I removed the driver then Dad would spring back into life. So I find myself with very mixed emotions about the driver: gratitude that it did indeed contribute to a peaceful, pain-free ending combined with distress that it announced and determined the inevitability of that ending.
As a technology professional, I of course also found the device interesting: the nurse who set it up did so with great care, and clearly found it easy to use: it is a task she performs routinely. But the three aspects that we highlight in our paper on "Bags, Batteries and Boxes" all came up in the conversation around the driver. The disposable bag provided was identical to the one featured on the left in Figure 1 of our paper (though all it did was notionally hide the driver which was, in any case, hidden under the sheet). The nurse replaced the battery at the start and after 24 hours to minimise the risk of it running out of charge. The box was locked to prevent tampering (correct) but, bizarrely, when it came to removing the driver after Dad's death, I was the only person in the room who knew where the key was located, which rather undermined its role as protection against tampering. Since no nurse visited after Dad's death and I didn't want him to be moved while still attached to said driver, I asked the doctor to remove the butterfly needle. Clearly, the doctor had never done such a thing before, reinforcing findings from our study of incident reports involving syringe drivers used in private homes that doctors are sometimes put in the position of having to use technology they have no familiarity with. Thankfully, the doctor did kindly remove the line, gently as if removing from a living patient, and we could send Dad off suitably clothed and unencumbered by redundant technology. I can only assume that the driver was returned to the community nurse team later.I'll close by thanking the amazing staff at Tegfield House, who cared so diligently for both Dad and us and the equally amazing NHS nurses and doctors who cared for Dad over many years, and particularly in his final hours.
