Palliative care is not just for the old or cancer patients, but also for those
with life-limiting illnesses to improve their quality of life.
At age 14, Nami is not a typical palliative care recipient. He is young and he does not have cancer.
Nami was diagnosed with spinal muscular atrophy, a genetic condition that renders his body unable to maintain and support the growth of nerve cells that govern the body’s movements.
There is no cure for this condition, but Nami continues to be the kind of child who makes his parents smile with pride at his excellent academic results, strong extra-curricular activities, and love for math and science.
He is a scout and an avid chess player who won a gold medal for Malaysia at the 2013 Asian Youth Para Games held in Kuala Lumpur. He even taught himself how to play blindfolded shortly after witnessing a blind chess game.
For the past four years, Nami has been receiving palliative care from a healthcare team at Hospis Malaysia, a community-based palliative care provider, as his condition has made it necessary to have closer monitoring of his mental and physical well-being.
The team also supports his parents, Nizam and Midah, in caring for him.
Making patients comfortable
Nami’s story dispels two of the most common myths about palliative care: that it is needed only by people who are old or have cancer.
There are many illnesses for which palliative care is appropriate, says Hospis Malaysia deputy medical director Dr Sylvia McCarthy.
People with life-limiting illnesses such as chronic obstructive pulmonary disease, multiple sclerosis, AIDS, liver failure, renal failure, heart failure or neurological diseases like Nami’s motor neuron disease, can receive help to make them feel and function better, even while they are still receiving treatment to slow down the progression of their illness.
Life-limiting illnesses are diseases that shorten a person’s life significantly and impact their quality of life. Full recovery from the illness is also highly unlikely.
“It is important to recognise that palliative care is not end-of-life care; it is about helping people live in a difficult situation, and the goal of care is about improving people’s quality of life,” says Dr McCarthy.
Palliative care ranges from medical services designed to help patients control symptoms such as pain and nausea, to counselling and spiritual support to help them adjust to changes in their quality of life.
The care needed and wanted by each patient is different, and so are the desired outcomes.
“The goal of care is not necessarily to cure, but is instead, the person’s wellbeing, to enable them to live the kind of life they want to live,” the doctor says.
Getting palliative care
As palliative care is relatively young in Malaysia, there are less than 10 palliative care physicians in the country, and specialised palliative care offered by hospice organisations is available mostly in major cities.
Patients usually need a referral from their attending doctors to access these services. However, not everyone requires specialised palliative care, says Dr McCarthy.
“The model in most countries is that generalist palliative care can be provided by general practitioners and general physicians… but we still have to develop more specialised palliative care to support that,” she says.
Family members can ask doctors about things like symptom control or psychological support for their loved ones, to make their journey with a life-limiting illness more comfortable.
It helps to remember that palliative care usually complements a person’s treatment, rather than replacing it.
A 2010 study at the Massachu-setts General Hospital, United States, found that patients given palliative care on top of standard treatment for advanced non-small cell lung cancer lived as long as 2.7 months longer than those who didn’t receive palliative care.
“Palliative care is about the recognition that it is not enough to treat the disease,” says Dr McCarthy.
“You need to treat the side effects of the disease, the side effects of the treatment of the disease, and deal with the impact of illness on somebody’s life.
“Sometimes medicine is seen as only for cure, whereas I prefer to see it as for healing.
“And healing can be in the sense of making someone well. It doesn’t necessarily mean curing the disease.”
> Hospis Malaysia will be launching a new symbol to raise awareness about palliative care nationwide on April 25 at Publika, Kuala Lumpur. A photo exhibition featuring the stories of palliative care recipients will also be held from April 25-29 at Publika. A public lecture on euthanasia by Cardiff University, United Kingdom, palliative medicine professor Baroness Ilora Finlay will be held at JW Marriott Hotel, Kuala Lumpur, at 5pm on April 25. To register, kindly email firstname.lastname@example.org.