1. Howe, Tsu-Hsin PhD, OTR

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Neonatal palliative care is commonly offered for patients with medical conditions such as extreme prematurity, lethal anomalies, and other conditions that require continuing and aggressive care considered to be more burdensome than beneficial. The goals of palliative care are to optimize quality of life, relieve symptoms, and provide bereavement support to families so that they may remain functional and intact. In my opinion, the hospital setting should be considered the primary place to conduct neonatal palliative care.


The home environment is not necessarily beneficial for the infant and the family in such a situation. Palliative care always should be considered part of the total care paradigm and should not be viewed as an abrupt all-or-nothing change from life-prolonging to symptom-oriented care (Grager, 1996). In the hospital, the medical staff can continuously monitor the relative burdens of living and dying in one direction or the other and adjust care accordingly under this model. This model is much more appropriate in a hospital setting because there is no clear point when palliative care begins for most infants in the NICU. Because palliative care is a progressive process, parents also have more time to cope and grieve when they have support readily provided by a team of trained staff and they have better access to an interdisciplinary team approach to palliative care. The team is needed to assist the infant and family with physical, psychological, social, emotional, and spiritual suffering. This interdisciplinary team is readily available and easier to assemble in a hospital setting.


Conducting neonatal palliative care in a hospital setting does not deny parental autonomy and involvement in the decision-making process. On the contrary, parents can focus on spending time with their baby and dealing with their own grief with a sense of security offered by a supportive environment. Parents may not have the same experience if they feel abandoned or isolated. They may fear the burden of making decisions alone at home while facing their baby's inevitable death without any professional support.


Palliative care at home may not be cost-effective when compared to hospital settings. Some studies suggest that the cost of home palliative care is higher (Tzala et al., 2005), and the team that provides home services may have more difficulty gathering resources, which decreases their effectiveness (Clark et al., 2002). Healthcare professionals are trained to provide the highest quality of care for critically ill infants and provide equally high quality end-of-life care to infants who die despite receiving the best of care. Hospitals should no longer be perceived as cold and distant now that family-centered care has become the vision, mission, and philosophy embraced by many hospitals. In my opinion, it is appropriate that the primary location of neonatal palliative care be in a hospital and be provided by professionals.




Clark, D., Seymour, J., Douglas, H., Bath, P., Beech, N., Corner, J., et al. (2002). Clinical nurse specialists in palliative care. Part 2. Explaining diversity in the organization and costs of Macmillan nursing services. Palliative Medicine, 16, 375-385. [Context Link]


Grager, G. (1996). Pediatric palliative care: Building the model, bridging the gaps. Journal of Palliative Care, 12, 9-10. [Context Link]


Tzala, S., Lord, J., Zlras, N., Repousls, P., Potamlanou, A., & Tzala, E. (2005). Cost of home palliative compared with conventional hospital care for patients with haematological cancer in Greece. European Journal of Health Economics, 6, 102-106. [Context Link]