Although palliative care has been very diverse, we at Perak Palliative Care Society (PPCS) mostly deal with its adult population. Five of us from the home care team (Dato Dr Zia, Sr Sumathy , Nurse Yuin & Szu and I) were privileged to attend the eye opening and very educational Paediatrics Palliative Care workshop conducted by Hospis Malaysia.
Palliative experts in this workshop included Dr Ednin Hamzah (Hospis Malaysia), Dr. John Collins (Pain Medicine & Palliative Care, Australia), Dr Sylvia McCarthy (Hospis Malaysia), Datuk Dr Kuan (Paediatrics Consultant, Hospital Melaka) and the very iconic and passionate Dr Rosalie Shaw (Consultant Physician, Australia). Dr. Rosalie Shaw is most dear to many at PPCS.
Quality of life for the young includes their physical, psychological, social and spiritual needs. In Malaysia, Paediatric Palliative Care is still in its early stages and Datuk Dr Kuan stressed the importance of Team Outreach in a home care setting which currently is so much needed to reach the home bound children. She said home care team members must be aware of its team member’s strength and weakness in order to effectively provide palliative care on a holistic scale.
Almost all speakers spoke of one are in particular which was impossible to miss. It blared at us in every topic broached, THE NEED FOR EFFECTIVE COMMUNICATION. This includes skill vs attitude and skill vs personality. In this capacity a multidisciplinary team will be able to provide its best in patient care according to individual case presentation. Dr Rosalie Shaw at one point commented that the right care at the right time by the right team produces effective holistic care. She went on to say that it is important to drop ‘the attitude’ to solve problems and be compassionate towards patient and family. To recognise the difference between the needs of a patient and family by listening to understand as they are facing a grim life limiting condition.
There are many tools that can be used in Paediatrics Palliative Care as what Dr John Collins had highlighted and also by some of the other speakers. The professional care provider must uphold’ Ethics’ in palliative care and be aware of possible ‘Burn Out Syndrome’ for immediate remedy. We must be aware of verbal and non-verbal communication as it allows therapeutic relationships to be built.
The ability to diplomatically handle anguish questions raised by family over their beloved children is necessary. So SHUTTLE DIPLOMACY (a word I have come to like very much) is by itself a great tool in palliative care. The care provider talks to one party then talks to the other party or parties seperately in order to get any issues within the family or patient’s circle settled amicably.
In conclusion, it is very important to be aware that sometimes we as Palliative Care providers on the whole must be prepared to change ourselves if and when we come across a condition where we are not able to change the situation. We were reminded that WE ARE MEDICINE to our beloved patients and consolation to their family.
At the end of the workshop, the five of us bonded with communication and understanding and vision to contribute our skills to PPCS to the best of our abilities.
Chandrika P Choo
Perak Palliative Care Society