Caring hands: Premala providing comfort to a patient alongside medical support. — Photo courtesy of Premala
JOHOR BARU: Despite being ravaged by cancer, the final days of Tee Boon Leng’s father’s life were marked by dignity and peace.
He credited palliative care for helping his family navigate an emotionally devastating period.
The 37-year-old described palliative care as not giving up, but a way to preserve dignity at the end of life.
His 72-year-old father, diagnosed with end-stage pancreatic cancer in April last year, died after a two-month battle.
“In those final days, palliative care brought peace not just to my father but to all of us.
“It was medical support that eased his extreme pain, soothed emotions and helped guide my family through a roller coaster of feelings.
“Death is inevitable, but it does not have to be cruel,” said Tee, who works in sales.
He said his family was initially divided over whether to pursue chemotherapy or palliative care when his father was first diagnosed.
Given his father’s age and existing liver and kidney complications, Tee advocated palliative care, but the sick man decided to fight on and began chemotherapy.
His condition deteriorated sharply within two weeks.
Treatment was stopped and he was referred to the Palliative Care Association of Johor Baru (PCAJB).
A home visit was arranged promptly, with PCAJB senior nurse manager Premala Ponnusamy working closely with the hospital to secure controlled medication to manage his pain.
He said the palliative care nurses’ role went far beyond clinical care, as they patiently explained and reassured family members with empathy.
“They helped us come to terms with what was happening. They didn’t just help my father pass with dignity, they helped us cope, accept and be present,” he said.
For Premala, such moments reflect the essence of palliative care.
“People think palliative care is about death, but to us, it is about how someone lives until the very end,” she said, adding that the focus shifted from cure to comfort in a patient’s final days.
“We manage severe pain, breathlessness, anxiety and agitation. We also care for emotions, fears, distress and family dynamics.
“Very often, families are overwhelmed and afraid. They need guidance just as much as the patient does,” she added.
Beyond administering medication, Premala said palliative care nurses must navigate difficult conversations about dying, help families understand what is happening, and prepare them for what lies ahead, while respecting cultural and religious beliefs.
“Many patients fear being a burden or dying alone. Others worry about unresolved family matters.
“Sometimes, what they need most is someone who will sit with them, listen and reassure them that they will not be abandoned,” she said.
She said PCAJB provided phone consultations and worked closely with government hospitals to access controlled medications, with support from locum doctors when available.
Premala said a common misconception about palliative care was that it meant giving up.
“In reality, late referrals deprive patients of the comfort and families of the support they deserve,” she said.
The growing demand for palliative care is evident at PCAJB, where a small team is often stretched thin. Currently, three nurses, supported by an administrative manager, care for about 120 patients across Johor Baru and Masai, making up to six home visits a day.
PCAJB president Sonny Lim Pang Tew said many patients approached the association when their medical options run out to seek comfort at the end of life.
“We hope to cover more areas, including Senai, Kulai and Iskandar Puteri, but we are limited by resources and a shortage of palliative care nurses,” he said.
Founded in 2007, PCAJB is fully licensed by the Health Ministry and is the only dedicated palliative home-care outreach programme in Johor Baru, which also serves as a training centre for final-year medical students and postgraduate doctors.
Lim said PCAJB relied heavily on public donations, with annual operating costs of about RM480,000 for medical and nursing services.
Those interested in learning more about palliative care or contributing to the association can call 07-222 9188 or e-mail pcajb.admin@gmail.com.
