SINGAPORE - Parents may feel that the worst thing that could happen to them is to lose their child.
Some, however, may have gone through an even more traumatic experience - on top of losing a child, they feel the medical care received by their child was inadequate or resulted in needless suffering.
"After hearing the stories of parents who have gone through this horrible experience, I now know that that is even worse," said Professor Eric Finkelstein, executive director of the Lien Centre for Palliative Care.
That is one of the reasons why the centre's clinicians, together with those from HCA Hospice Care, KK Women's and Children's Hospital, National University Hospital (NUH) and Singapore General Hospital, have developed Singapore's first set of guidelines to address the complex needs of vulnerable or dying babies.
Launched on Saturday (July 28), this guidance book is issued to equip healthcare professionals with the knowledge and skills to provide palliative care to vulnerable babies. It is available online on the Lien centre's website.
Other countries have come up with similar guidance documents since the 1990s but may not have a set of formalised guidelines. Britain developed a similar set of comprehensive guidelines in 2014.
It is estimated that more than 10,000 people a year would need palliative care by 2020, up from 8,000 in 2009.
Associate Professor Roy Joseph, emeritus consultant at NUH's department of neonatology, said there are roughly 300 vulnerable babies who may need such care a year, given the current infant mortality rate.
He added that the guidelines will be useful as the needs of vulnerable babies and their parents go beyond standard medical ones. Their needs may be social, emotional, mental and spiritual in nature.
"A guidance document will also help in situations where parents and the medical team reach an impasse about decisions on continuing with medical treatment when knowledge tells you it's time to stop," he said.
The document is organised into two sections. The first describes the needs of vulnerable babies and the scope of supportive and comfort care, such as ensuring their physical comfort.
The next section is to arm healthcare professionals who manage vulnerable babies with the expertise to render the care needed, such as how to handle critical decision-making and plan for end-of-life care. There is also information on pain management and bereavement support.
The guidelines were created over the last three years.
A separate set of national guidelines for palliative care for the general population was introduced in 2014 to set standards on what hospices, hospitals and other providers are expected to do, from coordinating care to the use of pain-relieving drugs.
Said Dr Chong Poh Heng, honorary secretary at the Singapore Hospice Council: "The latest guidelines is specifically for doctors who treat newborns, who have mostly never received training in palliative care.
Said Prof Finkelstein: "Although we cannot save every baby, our hope is that this document can minimise needless suffering and help families cope with the heartbreaking loss of a child."