‘Holding the baby’ at the end of life

J Gibbins,1 C Reid,2 R McCoubrie2

1SpR Palliative Medicine, Department of Palliative Medicine, Bristol Haematology & Oncology Centre, Horfield, Bristol, UK

2Department of Palliative Medicine, Bristol Haematology & Oncology Centre, Horfield, Bristol, UK

Correspondence to Dr Jane Gibbins; janegibbins@hotmail.com

Abstract

Although there are obvious differences in caring for people at the extremes of life (newborns and the dying), there are many principles that can be applied to both—for example, the theory–practice gap, dealing with distress, ‘We’re only human,’ ‘It’s easier with experience’ and ‘It doesn’t have to be complicated.’ These will be presented and discussed. While tending to my newborn in the middle of the night, it dawned on me that there are striking similarities in parenting newborn babies and caring for patients who are dying. Ruminating on this thought with my colleagues who have experience in caring for newborns, the dying and helping others do so the same, our thoughts concurred. Although there are obvious differences in caring for people at these two extremes of life, there are many principles that can be applied to both.

Theory–practice gap

For first-time parents, there is such a huge theory–practice gap—you can read all the key parenting books—Gina (Ford) or Miriam (Stoppard), attend antenatal classes, and get advice from friends and family, but it does not really make any sense until you are actually doing it. Likewise, at medical school, you can read and be taught all of the theory, but you do not really learn the nuts and bolts of how to care for someone who is dying until you are doing it in practice. A newly qualified doctor interviewed last year as part of a research project in our department explained, ‘You learn by doing really don’t you? So it’s something you need to actually work through I think, not just be taught.’

Dealing with distress

Whether you are caring for your unsettled newborn or called to see a distressed imminently dying patient in the middle of the night, it is likely that neither will be able to tell you coherently what is the matter. It is up to you as parent or healthcare professional to do a root-cause analysis through a process of elimination, application of theoretical knowledge and common sense, and, if all else fails, an ‘educated guess.’ Once you have a theory as to what is causing the distress, you can do something to try and solve the problem or ease the discomfort.

It would be unthinkable to blindly resort to sedation to stop a baby crying, and in the same way, we should consider reversible causes for agitation in a dying patient before reaching for midazolam. The physical symptoms to consider for the dying patient and the newborn baby can be similar; are they in pain (or colic), have they had too much opioid (or too much milk), are they hallucinating (or have had a bad dream), have they got a blocked catheter (or soiled nappy), or have they dropped something they are physically or psychologically dependent on such as their oxygen mask (or dummy)? Or is the patient genuinely terminally agitated with no obvious reversible cause, in which case turning to pharmacotherapy is entirely reasonable?

We’re only human

There can also be an emotional component to caring for people at the beginning and at the end of life. In our study, junior doctors talked about the emotions evoked by this part of their role and how their emotions could skew their ability to think logically.

Because the last thing you want to do is break down when you really need to be thinking clearly and making good decisions, and helping and supporting them. You don’t want to be going ‘Oh my word, I have never felt like this before’ or ‘Help, you know, what do I do next?’

Most of us who have survived the early days of parenting will perhaps look back with a combination of nostalgia and ‘Thank God that’s over!’ But we came through it relatively unscathed. For some, there will have been short-term pain—the sleeplessness, the anxiety when they are not settling that there might be something wrong with them, and worrying about doing the right thing. But for the most part, we succeeded in the parenting and we learnt how to do it on the job.

It’s easier with experience

From our experience, parenting the second or third baby did not bring with it the same level of anxiety as being a first-time parent. Having survived and succeeded once, we were able to approach the next baby with a repertoire of skills and strategies learnt from past experience. In the same way, actively engaging in the care of imminently dying patients allows confidence to be gained as well as greater knowledge of pain and symptom control.

It doesn’t have to be complicated

Sometimes, all a baby needs is comfort—just hearing their parent’s voice or seeing their parent can settle them. Similarly, with experience, doctors may find that in some circumstances, words of comfort and ‘being there’ for the patient and their carers may be all that is required.

The bottom line is, as a new parent or new F1, you are the first port of call whether you like it or not, and the patient/baby is relying on you to do something to make the situation better. The learning happens by being there and getting involved. However, to do this effectively, it is important to have armed yourself with the theoretical knowledge of how to handle the situation from the books, and then do not be afraid, think logically (recognise your emotions), use common sense and do not give up until the situation is under control. If it becomes too overwhelming, call in re-enforcements (senior/partner) to come and help.

Competing interests None.

Provenance and peer review Not commissioned; internally peer reviewed.

Contributions JG produced the original idea. All authors contributed to the manuscript.