Few families given option of letting the child die at home
By Poon Chian Hui, The Straits Times, 16 Apr 2012
IT GOES against the natural order of life, but children do die in Singapore daily - some painfully, and most of them in hospital.
A recently published study says that for the 68 children under the age of 19 who died of illness between 2008 and 2009 in Singapore, the option of having the child die at home was hardly offered to their distraught families.
Studies done elsewhere have noted that the families of as many as eight in 10 dying children would choose to take the child home if the choice was presented.
The fact that this option is hardly exercised in Singapore is all the more surprising when caring for a dying child at home can be arranged, even if medical equipment like respirators needs to be set up.
The study also found that among the eight in 10 patients with cancer, only half were referred for palliative care, when all of them, and their families, could have used such support.
The researchers from KK Women's & Children's Hospital (KKH) and HCA Hospice Care, whose study made it to the Singapore Medical Journal last month, thus concluded that more can be done to improve the care given to critically ill children.
The study, done in a period of nearly 40,000 admissions to KKH, excluded 24 other children who died of other causes, such as in accidents.
Apart from the eight in 10 who died of cancer, the others died from infections or heart and congenital problems.
The researchers expressed the hope that doctors and parents would seek palliative care for sick children earlier, instead of only when they are about to die.
Lead researcher Chong Poh Heng said: 'Many children die 'invisibly' because people don't want to talk about it.'
The truth is that about 300 children die here every year.
But when the subject of palliative care comes up, it is more likely than not to be in reference to care given to the ailing elderly.
The study did, however, unearth one bright spot - that 'advance care planning' is satisfactory.
By this, the researchers meant that in seven out of the 10 cases in the study, the families were told that the child's illness was critical, and were consulted on how they wanted the child's care to be managed.
This included following through on a 'do not resuscitate' order to spare the dying child the trauma of being revived.
Dr Chong, explaining the rationale for the study on critically ill children, said: 'By knowing what their dying experience was like, we can better define what specific needs these children and their families have.'
As deputy medical director of HCA Hospice Care and a member of KKH's paediatric palliative service, Dr Chong holds the issue close to his heart.
He said that he has come across only one or two families every year who choose to bring their child home to die.
The palliative care service can arrange for the simplest to the most complex medical support for families who want this option.
Yet, two-thirds of the 68 children in the study died in intensive care units in hospitals.
Health-care staff may find it difficult to raise the subject, for fear of being taken as having given up on the child's chances of recovery.
Parents themselves may hold off facing the issue, for fear that they may be unable to cope on their own at home, without doctors and nurses on call.
There is also the fear that moving the child home may compromise his or her chances of survival, or bring death sooner.
But a dying child who is moved home will receive visits from doctors, nurses and social workers from the palliative-care service, said Dr Chong.
In fact, with the precious little time the child has left, this arrangement gives him or her quality time with the family.
Dr Chong added that children find more comfort in a familiar environment than in a 'cold and clinical place'.
'It is the only gift we can give to the family at this most difficult time.'
Star Pals give caregivers a break
A ROVING team is at the ready to support the families of critically ill children who have been discharged from hospital.
Called Star Pals, the team - comprising a doctor, four nurses, two social workers and a group of volunteers - provides a range of services.
This can include palliative care, and even 'babysitting' the ailing child so the caregiver in the family can have a break to run errands or enjoy some personal time.
Started just this month, Star Pals is an expansion of the existing inpatient palliative care service run by KK Women's & Children's Hospital.
It is run in partnership with HCA Hospice Care, which already operates a similar programme for adults.
This way, the care given to a critically ill child starts during his hospital stay and extends to after the young patient is taken home.
The new service now runs on funding from the Tote Board, but hopes to be funded by the Government after three years, when the money runs out.
More than 20 families are now served by Star Pals.
Each pays $30 to $90 a month, depending on a means test they take; those with financial problems can ask for aid from other funds from HCA Hospice Care.
The service is open to everyone - young patients from other public hospitals as well as those from private hospitals may also sign up for it.
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