In 1991, a group of people came together in Petaling Jaya, Malaysia and realised that for patients with life limiting illness, there was scant resources available. As doctors, nurses, lawyers, businessmen and others, they volunteered their time and energy to set up Hospis Malaysia. From its early beginnings working from a donated room in a hospital, Hospis Malaysia now runs the largest palliative care community service in the country with about 400 patients being cared for at any time.
Hospice and palliative care remains a rather low key service in Malaysia. It doesn’t help when there are no obvious local words to describe it and where discussions surrounding death and dying are still considered taboo. There are also few professionals and volunteers attracted to this vocation. Despite this, Hospis Malaysia has grown, by being innovative and being strategic in its approach to services, education, advocacy and fundraising.
In early 2012, when it was announced that the Duke and Duchess of Cambridge would be undertaking a tour of South East Asia and the South Pacific Islands as part of the Queen’s Diamond Jubilee celebrations, the thought of a visit by the royal couple was the stuff of dreams, even though we were aware of the Duchess’ patronage of the East Anglia Children’s Hospice in England. Over the coming months, such a visit gradually became a reality and on the 13th September, a quiet corner of Kuala Lumpur became a hive of activity when the world’s media descended on us.
Why Hospis Malaysia? Is palliative care such a worthy cause that befits such attention? There is no glamour in palliative care here and the subject material seems depressing. But why not palliative care? The reality of palliative care is that it does involve us all, directly and indirectly. And for the royal visit to include a hospice in Malaysia, perhaps others will be more curious about palliative care and be moved to engage in it.
It was also important that a royal visit would be meaningful and that a legacy would be left. Hence several elements were planned. The main thrust was to try and push Malaysia to put together a strategic approach in developing national paediatric palliative care services. Despite receiving over 1600 referrals each year, only between 20 – 40 are children. In the next few years, with the creation of a select team of doctors and nurses, it is hoped that we should be able to provide a more specialised community paediatric palliative care service alongside our adult patients. A link with the East Anglia Children’s Hospice seemed a good idea in helping us realise our hopes and help bridge the link between the Duchess with EACH and Hospis Malaysia.
The paediatric community were encouraged to look at the needs of children with life limiting disease and finally, we were able to persuade the Ministry of Health to approve and announce a National Paediatric Palliative Care Strategy as part of the royal visit.
Upon their arrival, our guests were given a short introduction to the work of Hospis Malaysia. In the comfort of our auditorium and away from the media, it was important to show the heart of palliative care with a short lecture and slide presentation. Here the focus was about how palliative care is all about the patient and their family, for them and be relevant to them.
An important element for the day was a chance for our patients and caregivers to be an integral part of the occasion. Unfortunately in dealing with life limiting illness, the composition of group changed every few days but on the day, 33 patients and caregivers were present. For about 40 mins, the Duke and Duchess, accompanied by our own royalty, Her Royal Highness Raja Zarith Sofia of Johor mingled with them. During that period, all aspect of suffering seemed to dissipate with the patients joking and singing. Early in the day, they had also baked a chocolate cake for the Duke. It was a very special moment and the royals certainly endeared themselves to all present. A session creating art with clay bricks with our paediatric patients was particularly poignant.
The long awaited speech by the Duchess at the end of the proceedings. Her words “Providing children and their families with a place of support, care and enhancement at a time of great need is simply life changing. With effective palliative care lives can be transformed. Treatment, support, care and advice can provide a lifeline to families at a time of great need” certainly gave us great encouragement. To describe Hospis Malaysia in her speech “as a very special place” was a bonus.
It seemed surreal that at that moment, images of our little hospice was beamed across the world and reporters jostled for space. All too soon, with a handshake and warm smiles, the visit ended.
Over the following days, there was much attention on Hospis Malaysia and palliative care. Whilst some were simply enthralled by the Duke and Duchess, hopefully others are beginning to realise the importance of caring for those vulnerable and living with life limiting illness. There were specific enquires on paediatric palliative care and requests for more assistance in teaching palliative care to undergraduates. At the onset, it was hoped that the Royal visit will leave a lasting legacy. It probably will but the work has just got harder. We hope that ripples of this event reach other countries and decision makers and advocates will ask ‘what about improving palliative care in our community?’