The emotional terrain of palliative care

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Palliative care nurses provide support to their patients throughout their journey.

PETALING JAYA: Nurul Nadiah Jaafar, who goes by Nadiah, shoulders her backpack filled with vials of medication as she travels from one patient’s home to another.

With each visit, the palliative care nurse carries the emotional burden of the unpredictable nature of her job, as every encounter with those under her care could be the last with them.

Despite the emotional challenges, Nadiah, who specialises in home-based palliative care services under Hospis Malaysia, finds solace in fulfilling her patients’ wishes and bringing comfort to their lives.

“Every time we see a patient and their family members at home with lots of issues, we find fulfilment when they get more comfortable over time, and they can actually find the meaning of life and their dignity is preserved.

Nurul Nadiah Jaafar.

“There will be times when you feel very sad but there will also be times when you feel satisfied because you’ve built a connection with the patient and family members through their illness and life journey,” she told FMT.

Nadiah said palliative care nurses not only served as healthcare professionals but also as steadfast companions, providing unwavering support to their patients throughout their arduous journey.

Nadiah, who cares for both young and elderly patients with serious progressive illnesses, makes an effort to listen intently, ensuring that each person’s desires and needs are met.

Just as patients leant on nurses for support, she said palliative care professionals drew strength from their team members by sharing their emotional burdens, and this provided her the resilience needed to commit to her role.

“Palliative care nursing has changed me a lot. We are seeing suffering day-to-day. So I appreciate the things that I have now. I feel very grateful that we are doing so much, not only for the patient but also their family,” she said.

Nor Amirah Zamri.

Nor Amirah Zamri, a palliative care nurse at Beacon Hospital, finds solace in a similar support network, engaging in regular debriefing sessions within her close-knit team.

“The debriefing sessions include our team of doctors and nurses. We also have a coordinator involved. We sit together and talk about cases that are hard for us. If we need to cry, we cry,” she said.

She said being a good palliative care nurse meant the lines of professional boundaries were blurred in order to build rapport and trust with patients.

Having treated patients suffering from chronic conditions such as cancer and neurodegenerative disorders, she said accompanying patients in their journey had helped her better appreciate her time with loved ones.

“I always take it as a positive thing that God wants me to go through these experiences, to make me appreciate my family and friends more because I have this time,” she said.

Her experience in the field has also opened up her mind when it comes to discussions about death.

“It won’t shorten your life to talk about death and dying. All of us will go through that whether we are ready or not, but at least we’ll be more prepared if we talk about it.”

Nor Amirah said there was a lack of awareness on what palliative care entailed, leading to common misconceptions that it was solely for end-of-life care and associations with opioid use.

“In the past, only dying patients were referred to us. We have always been seen as a dumping ground.

“With integrated palliative care and early referral, we can build early rapport and trust with the patients. It’s important for us to journey with them throughout their treatment and to support the management of the treatment’s side effects.”

Meanwhile, Nadiah said the competency of palliative care nurses had not been fully recognised in the country at governmental and societal levels.

“We are not just nurses, we are also doctors, pharmacists, physiotherapists, social workers, and counsellors. We are doing so much but no one sees this as an important aspect in delivering care to the community,” she said.

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