Ligia Marçola, Neonatologist and Medical Researcher, Unit of Pediatric Pain and Palliative Care, Instituto da Criança do Hospital das Clínicas da FMUSP, São Paulo, Brazil, explains the background to a longer article published in the current issue of the European Journal of Palliative Care.
Some things in our professional training as doctors change us forever. It was V., a one-year-old boy with multiple malformations, and his mother, R., who showed me how palliative care can make the suffering of a critically ill patient and his family much more bearable. V. lived in a neonatal intensive care unit (NICU) – he had never gone home.
To evaluate when and how palliative care could be given to the patients in V’s unit, we performed a retrospective descriptive study of the medical records of newborns admitted to the NICU of a university hospital where I was a fellow. The newborns had died between 1 January 2012 and 31 July 2014.
Nowadays, thanks to developing technology many more children survive as premature babies, or with other severe conditions and diseases than a few years ago. But they sometimes survive with important sequelae and limitations and can be a very heavy burden to their parents and society, not to mention their own suffering. Palliative care can change this, especially when it comes to helping healthcare teams and families to decide not to extend lives that most probably would end in much suffering or in a sad death, but instead to help babies to have more dignified care at the end of life.
But in most NICUs around the world, there’s still much to do to make palliative care a reality and to deliver this care properly. And that was exactly what we found in our NICU. Among 49 children that died in this period, all had very serious health conditions diagnosed before their birth, or very soon after their admission to the NICU. (These were mostly prematurity, malformations and genetic syndromes, as this hospital is a national reference centre for these conditions). It was obvious that all the children needed palliative care, but only 20 per cent of them received such care. Of the 12 children who did not receive cardiopulmonary resuscitation (CPR) at the time of death, only eight were in palliative care.
We also found:
- Lack of discussion with parents (80 per cent of cases), and an even greater lack of discussion between professionals at multidisciplinary meetings (only 16 per cent of cases). However, there is a possibility that discussions had not always been recorded in the medical notes.
- Lack of access to psychological support for parents (22 per cent of them received it).
- Ineffective treatment of pain, as evidenced by the 65 per cent of children with altered pain scales.
- Very common use of invasive procedures and devices.
The authors and the healthcare team are aware of the need to expand and improve palliative care for children admitted to this NICU, so that they receive the best possible treatment, whether or not they survive, and so that parents also receive adequate support.
May what I learnt from the story of V. continue to inspire us.
Wright V, Prasun MA, Hilgenberg C. Why is end-of-life care delivery sporadic? A quantitative look at the barriers to and facilitators of providing end-of-life care in the neonatal intensive care unit. Adv Neonatal Care 2011; 11: 29–36.
Barbosa SMM, Lima e Souza J, Bueno M et al. Particularidades em cuidado paliativo: período neonatal [Particularities in palliative care: the neonatal period]. In: de Oliveira RA. Cuidado Paliativo. [Palliative Care] São Paulo: Conselho Regional de Medicina do Estado de São Paulo, 2008.
Read the full article in the European Journal of Palliative Care
This post relates to a longer article, ‘Evaluating palliative care in a neonatal intensive care unit in São Paulo, Brazil’ by Ligia Marçola, Rita TV Polastrini, Ivete Zoboli, Maria Esther J Ceccon and Silvia Maria M Barbosa published in the September/October 2016 edition of the European Journal of Palliative Care (vol. 23.5).
If you have a web-based subscription to the journal you’ll be able to download this issue, plus all articles in the journal archive. You can also browse the archive and download articles by taking a 10-minute or 30-minute subscription. Members of the EAPC receive discounted subscription rates to the journal – click here to subscribe online.
You can read more about children’s palliative care in the current series that we are publishing on the EAPC Blog.