The Journal of Palliative Medicine reports that researchers in San Diego, USA have conducted a retrospective 5-year review of referrals for perinatal palliative care. The aim of this research was to learn the demographic of those being referred for perinatal palliative care to San Diego hospice – a hospice with one of the longest running perinatal palliative care services until its closure in early 2013. It was also important for them to discover the outcomes of referral and delivery for this population.
Marc-Aurele and Nelesen (2013) accessed the electronic charts of all patients referred to the hospice’s home perinatal palliative care programme from October 2006 to August 2012. Sixty six women were referred during this time, with a mean age of 31 years (median 27 years). The mean gestational age of the baby at the time of referral was 27 weeks (median 25 weeks).
Their findings reflect that while 12% of the diagnoses were unknown, forty-nine per cent of the perinatal palliative care diagnoses were for the chromosomal disorders trisomy 13 and trisomy 18, or anencephaly. A further 39% were for other chromosomal anomalies, other neurological anomalies, pulmonary hypoplasia and congenital heart disease.
The average time between admission and referral was 14 days, and clients received three palliative care home visits on average. The authors highlight that there was wide variability in both of these aspects of care. Further details around the women’s care plans and outcomes are available in the paper.
Several themes emerged from the data, including issues around the support needed by the families and by the non-palliative-specialist medical staff. It is suggested by the authors that earlier referral for perinatal palliative care may allow more visits to be made and may ease some of the families’ suffering and distress. They also emphasised that this need not rule out the simultaneous pursuit of potentially curative care.
The paper for this research can be accessed from the Journal of Palliative Medicine
A second study from Poland
A similar study published in Biomed Research International describes the neonates and infants who received home-based palliative care (as opposed to hospital-based care) in Lodz Region, Poland, between 2005 and 2011 and suggests that perinatal palliative care programmes should be comprehensive, integrative and begun as early as possible.
For this study a retrospective review of medical records was carried out and the figures to emerge showed that of the 53 neonates and infants admitted to a home hospice 41% were for congenital diseases. The most common cause of death was cardiac insufficiency. Neurological symptoms and dysphagia were the mos common clinical problems. The research concluded that perinatal palliative care improves the quality of the lives of the child and provided the family with an opportunity to spend time saying their goodbyes.
This research paper is available at http://www.hindawi.com/journals/bmri/2013/652321/