It has been eight years since Jegadeva Kularatnam was diagnosed with salivary gland cancer. The cancer cells have spread to his shoulders as well as his lungs. Since his diagnosis, Jegadeva says he has undergone surgery but opted not to go though chemotherapy.

“My family members who had cancer and did chemotherapy went through very rough times and it didn’t improve their quality of life. At the same time they didn’t get any better. In fact, their situation deteriorated and soon after, they died.

“So, I decided I did not want that,” he says, adding that he went through two to three years without any treatment.

Jegadeva says that in December 2017, doctors referred him to palliative care due to the shortness of breath and constant hiccups he faced.

“They admitted me (into the palliative care ward of the hospital) and put me on oxygen – funnily, after about two days on oxygen, I recovered and the hiccups stopped,” says the 82-year-old.

Palliative care is often associated with death, a myth that Hospis Malaysia chief executive officer Dr Ednin Hamzah hopes to dispel. He says patients who are referred late to palliative care “suffer a great deal” as the treatment provided is not palliative.

Their symptoms such as pain, breathlessness and insomnia, including issues that affect their quality of life, are often not managed well, he argues.

Hence, he says a patient and their family will become distressed as they are not well informed about what to expect from the illness and how to handle each situation as it arises.

“There is clinical evidence demonstrating that the involvement of palliative care in cancer in the early stages have improved survival.

“So patients having chemotherapy and radiotherapy have a survival benefit, but if you add palliative care into it, many not only may survive longer but also feel better as the side effects of their treatment and the symptoms of the disease is being managed,” says Dr Ednin.

Jegadeva concurs, saying that palliative care has helped him tremendously, improving his quality of life by enabling him to travel around the country and even to Singapore with a portable oxygen tank provided by Hospis Malaysia.

palliative

For breast cancer patient Tengku Nur Hanim Tengku Bahadur, the pain she felt from all her treatments and even a misdiagnosis from her doctors had her almost bedridden.

However, she says that after she was referred to palliative care in 2018, her pain has been well managed. “The palliative care nurses came over to the house and adjusted the pain medication dosage – and now, at least I am not bedridden,” she says.

Tengku Nur Hanim says she is now even able to enjoy one of her favourite activities, gardening.

“So palliative care was very precious to me because … it helped a lot to (manage the pain). Despite being in that condition, after the painkillers, I was able to move around on my own.

“I go to the toilet on my own now, I feed myself. I don’t need anybody to help me with that,” says the 63-year-old.

Nisha Gunasakaran, a nurse with Hospis Malaysia, says most patients come in with the intention of improving their quality of life despite their illness.

“Most of them were active individuals before and the effect of the illness, such as pain or breathlessness, has confined them to a bed or a chair, and just not being able to do the things (they love) anymore.

“Having all these conversations about the quality of life, I think that is what they are looking for because many of our patients still want to live life.

“And if we are able to manage these symptoms, many of them have been able to function better and carry on with their daily activities,” says the 31-year-old.

Hospis Malaysia currently has 18 nurses who see between 30 and 40 patients a month. The organisation also employs three doctors, a pharmacist and an occupational therapist.

Meanwhile, Sydney-based Concord Hospital’s Palliative Care Department head Dr Ghauri Aggarwal, who works closely with Hospis Malaysia, emphasises that palliative care teaches “people to live” and is not just about “dying well”.

“The biggest job we do is teaching people to live with their illness. If we focus on quality of life as important, then young nurses and doctors who are training will automatically absorb that as part of what they want to do in their medical or nursing training.

“If we show the power of how we can improve patients’ lives, many more young professionals will choose that as a specialty,” she says. — By Ashley Tang