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Palliative care taboo among families of DMD patients

SINGAPORE — With advances in medical care, more boys with Duchenne Muscular Dystrophy (DMD) are now living into adulthood, said Dr Wendy Liew, consultant at Neurology Service, Department of Paediatrics at KK Women’s and Children’s Hospital (KKH).

SINGAPORE — With advances in medical care, more boys with Duchenne Muscular Dystrophy (DMD) are now living into adulthood, said Dr Wendy Liew, consultant at Neurology Service, Department of Paediatrics at KK Women’s and Children’s Hospital (KKH).

But without a cure in sight, the families of many patients would eventually have to think about palliative care. Yet, experts TODAY spoke to said the topic is often considered taboo among families grappling with the condition.

A recent survey led by Associate Professor Stacey Tay, head of the Division of Paediatric Neurology at National University Hospital, showed fewer than one-third of the 30 parents or guardians surveyed knew of palliative care for DMD. Only eight of the 30 were aware of an Advanced Medical Directive (AMD), but 19 were supportive of their child signing an AMD.

An AMD is a legal document the patient signs in advance to inform his doctor that he does not want life-sustaining treatment to prolong life if he becomes terminally ill and unconscious, and where death is imminent.

Assoc Prof Tay said DMD is a chronic disease and that makes it hard for families to accept the decline of their loved one.

Ms Sherena Loh, executive director of the Muscular Dystrophy Association Singapore (MDAS), added: “The end is often not so obvious for boys with DMD. We’ve seen parents who are not prepared (to discuss end-of-life care) and when the child passes on, they are in shock.”

The MDAS supports about 120 individuals with various forms of muscle diseases, of whom 45 have DMD.

“We often advise families to be honest with their child about the disease. With help from the palliative team and support groups like the MDAS, they can interact with other patients with DMD and find out more about the disease,” said Dr Liew.

The experts said palliative care for DMD patients is not only about end-of-life care. It is about providing comprehensive care as they go through the various stages of the chronic disease, explained Assoc Prof Tay.

The study found that more can be done in the area of respite care for caregivers. While 13 families required such services, only four reported receiving it. The MDAS launched a respite care service in 2013 so families can occasionally take a short break from their caregiving duties, said Ms Loh.

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