Dr Felicia Chang and her clinical team of six at the Assunta Palliative Care Centre (AsPacc) have their hands full most days, caring for the terminally ill patients who call on them for help.
The Assunta Palliative Care Centre aims to make the lives of terminally ill patients free from pain.
DR FELICIA Chang and her clinical team of six at the Assunta Palliative Care Centre (AsPacc) have their hands full most days, caring for the terminally ill patients who call on them for help. As palliative care clinicians, their role is to relieve the pain, distress and other physical, emotional and spiritual problems that follow a patient with a terminal illness. The ultimate goal is to improve quality of life for both the patient and their family, regardless of the type of diagnosis.
“We provide holistic care for our patients,” explains Dr Chang, the medical director of AsPacc. “First is the physical care, which is treating pain and symptoms control such as breathing difficulties, confusion, vomiting, nausea and so on. Without controlling the pain, it will be difficult to address the other needs of the patient. Next, we offer emotional care. Terminally ill patients go through a rollercoaster of emotions – denial, hopelessness, uncertainty, anger and so on. Family members too go through a lot. Sometimes there will be conflict within the family, guilt, blaming each other and so on. This is where our counsellors come in. Next is the social aspect – when one has cancer or any debilitating disease, they may lose their jobs and family members too may have to stop work to care for them. Some find themselves isolated from friends and family or may want to isolate themselves from society. This is where our medical social worker comes in,” she explains.
AsPacc was founded in 2010, inspired by the founding Sisters of the Franciscan Missionaries of Mary. The non-profit organisation got some seed money from Assunta Hospital and was given the use of one of the Hospital’s properties as its office, rent free.
Despite their limited resources, Dr Chang and her team aim to remove pain from the lives of as many terminal patients as they can. Surprisingly, says Dr Chang, there are many who do not want to accept palliative care because of the stigma surrounding it.
“Many people are wary of palliative care services as there is a stigma ... people think that the moment we step in, it’s the end. They see it as a defeat. What they don’t realise is that we can help them improve their quality of life and also help them deal with their chronic illness.
“We work together with the doctors and oncologists. Our part is offering the patients pain control and guiding families about caring for the patients. We are talking about end of life care and many patients want to die at home among their family and in familiar surroundings. We help facilitate them as best we can. We want to dispel the myth that cancer patients all die a painful death,” says Dr Chang, who is from Sitiawan, Perak.
Apart from home visits, AsPacc also loans medical equipment to its patients – from oxygen concentrators to wheelchairs, commodes and such. Its consultation, treatment and equipment are free of charge (patients have to pay for transport and sometimes have to put down a refundable deposit).
Dr Chang’s team comprises three nurses, two counsellors and one medical social worker. At present they have a total of 360 patients, with an average of 30 new patients every month. They operate daily and offer 24-hour service – after office hours, the six take turns being on night duty.
“We see between three and six patients a day. It really depends on each case – some issues take more time to treat. Also, we travel to really remote places and often getting from one patient’s house to another can take a lot of time because of traffic or natural obstacles like floods!” says Dr Chang. At present, the team is operating at full capacity, seeing about 100 patients a month. However, Dr Chang hopes to build her team in order to help more people. After all, Health Ministry statistics indicate that each year about 32,000 Malaysians will require palliative care.
“It is hard to get dedicated nurses who want to do palliative care. Our workload is very heavy – some days, even after seeing one patient, we feel drained because of the energy and time put into their care. We love our job but it is draining. There is a risk of burning out on a job like this. So, I tell my girls to take time off if they feel like they’ve had too much,” she explains.
Apart from the heavy workload, another major challenge faced by AsPacc and its team is fundraising.
“Its a vicious cycle. We need funding to build a team but to have a bigger team we will need more money. Without money we can’t run this service as we need to pay for medication, equipment, salary – it is our vocation after all,” she says.
Aspacc needs RM500,000 yearly for its operations. It is appealing for funds through its first-ever major fundraising dinner on Aug 16.
To find out more, go to www.aspacc.org or call 03-7931 7298.