[Celeste Teixeira-Swiegelaar]

#86960

I am a dietitian, and a mommy, so I am always, somewhere in my mind to some degree, analyzing food and the need to eat for life enhancing and sustenance. So, for me, it has always been a difficult decision to withhold food. I think this is the case with many of the drs I work with. I know that it is a heavy decision for the families of most of the patients I have been involved in. Food is, after all, one of the first things a newborn needs, and forever after as well. Food is the gathering point around the day, festive events and all other major events in our lives. We think of it, plan around it and spend much time either preparing it, enjoying it and, even sometimes, fighting it…but it is always there. When people become sick we further worry about it and try to encourage the intake, we modify it and even administer it via different ways in order to keep the body alive. As with air, we cannot survive without it. So, having trained for years about optimally nourishing all age groups and all types of conditions and illness…we now come to the dying. One of the things that is lamentably absent in most of our studies in medicine is death and how to allow it to proceed, after all we all know rationally that we will all travel through that way. The intellectual knowledge of death and its inevitably certainly doesn’t prepare us for when it is happening to one of our beloved or ourselves (I imagine) or, indeed, one of our patients. This acceptance of death is also culturally and, very much, individually influenced. I know within my field not much was taught, which is unfortunate. So the discontinuing of feeds at end of life has been personally learnt through ethics articles published in medical and nutrition journals over the years. I have learnt that feeding during end of life can actually hurt the patient. It can cause feelings of fullness and discomfort and there is no value in feeding a patient who is in the natural process of shutting down heading to death. This, however, is a very uncomfortable feeling for me – I guess its the ‘mommy idea’ of wanting to fix things. I really do believe that death at the end of a trial life and fight for life, should be absolutely respected and honoured, regardless of the emotional pain it brings to the observer – we are at that time all observers of someone else’s journey and it is really an honour to just be there witnessing their passing.
Having said all of that, I have seen many drs who actively continue to request TPN or NG feeds even though death is approaching. I have been told that they don’t want the pt to feel like they’ve been abandoned or that it makes the family feel like we’re still caring for the pt. I have come to realize that this is due to a lack of communication and decision making from a MDT through the process of advance care planning. Maybe this is due to the fact that at times there is no MDT around the patient and that often the dr goes it alone without the support of an excellent MDT that would lighten the load of decision making. On the other hand I have worked with drs who understand the process of death and have requested the discontinuation of feeding. One thing for sure that I have experienced is the lack of deep involvement in a MDT where I could voice my knowledge and experience in ACP.

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