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'All that matters is what the patient wants'

SUPPORT: Medical social worker Lola Ng with one of her patients.

A medical social worker's story

Terminal illness means family and friends face the reality of having to witness a loved one deteriorate before their eyes.

For issues closer to the heart, it requires a person, not a pill.

Ms Lola Ng, 35, describes her profession as one "in a constant state of flux", and not without reason.

As a medical social worker with HCA Hospice Care for the past five years, she soon realised that her role involved wearing many hats.

Her job centres around providing social and emotional support for the terminally ill and their families.

Helping patients come to terms with their illnesses, seeking out eligible grants and subsidies and providing bereavement management for families are just some of her day-to-day duties.

But the unpredictable nature of her profession also means that she undertakes responsibilities that fall outside her remit.

This includes tracking down estranged family members, arranging funerals or being the only person at a patient's bedside during his or her final moments.

In essence, her job is to tie up the loose ends of a patient's life.

She is also the bridge between patient and medical staff.

A common occurrence is how the terminally ill, having come to terms with death, see no point in taking their medicine.

Doctors and nurses turn to the medical social worker for intervention.

"Naturally, doctors see all medicine as important," says Ms Ng.

She readily admits that it is a tough balancing act.

"On one hand, I have a dying patient who just wants to live out the rest of his life on his own terms.

"On the other hand, I need to remain professional. I'd be lying if I said it was easy.

"The only thing that matters is what the patient wants. Nothing else."

Often, patients appreciate having somebody outside of the family sphere to share their hopes and fears with.

COMFORT

In fact, the mere presence of another person can be a source of comfort. "There were a few times where a particular patient of mine and myself would just sit together in silence," says Ms Ng.

After five years, outright rejection from patients or their families have become part of her everyday life.

She has a theory as to why this is the case.

"Doctors and nurses have clearly defined roles. But there is not much awareness of what a medical social worker does. Patients and family members don't really understand my role. Often, I am not given a chance to explain."

Palliative care nurse: It's about dignity, not desolation

PALLIATIVE CARE: Nurse Amy Lim with one of her patients.

A nurse's story

By the time patients get referred to nurse Amy Lim, 49, they are often into the final stage of their illness.

They are mostly cancer patients and those with irreversible organ damage and their life expectancy could be anything from days to months.

Nurse Amy - as all her patients call her - helps them live out their remaining days with "dignity instead of desolation".

"Medical, spiritual or even miracle healing - these patients would have tried everything to recover," she says.

"I might not be able to cure them, but that doesn't mean I can't help them heal."

The New Paper on Sunday followed her for three days as she went on her rounds of home visits across Singapore.

At first glance, her appearance appears to be at odds with her vocation.

Her enthusiasm is near infectious and her joyful demeanour does not suggest someone who works with the dying.

Then you see why this is perfect.

The smiles she receives show just how welcome a presence she is in her patients' lives.

She does not merely administer treatment. The fact that their nurse spends time, holds their hands and listens to them is visibly appreciated.

Nurse Amy has been a palliative care nurse with HCA Hospice Care for over eight years - a far cry from her early days as an obstetrics and gynaecology nurse.

"I literally went from baby showers to funerals overnight," she says.

SUITCASE

From the one-room rental flats of Taman Jurong to the upmarket gloss of private bungalows in Bukit Timah, Nurse Amy's clientele takes in the entire spectrum of social strata.

She heads out, pulling a travel suitcase that houses her vital supplies. They include vials of injectable morphine, which are so essential to her patients that she would fight for the painkillers above all else if she is robbed.

"I'd say take my money, not this bag," she says.

But Nurse Amy also sees the uglier side of people.

The reality of their body breaking down is a wake-up call some refuse to answer.

"A patient's spouse once told me that she would rather see her husband dead than help change his soiled diapers."

Her tone suggests that this is something she has seen too often.

"Her husband was just beside her."

There have also been instances of patients and their families refusing medical intervention for spiritual reasons.

She recalls a 74-year-old throat cancer patient who believed her illness was retribution for being a poultry butcher during her youth and stopped taking her medication.

"Her job as a butcher helped send her children to school and put food on the table," says Nurse Amy.

"What saddens me most was that she died a slow, painful death, thinking she had committed a terrible sin."

Most recently, she touched the life of 55-year-old Rhama Mohd Said, a patient suffering from stomach cancer."Amy is more of a sister than a nurse," Ms Rhama told TNPS.

"She has been there for me from the start even when no one else was. That is something I'll never forget."

Sadly, Ms Rhama, who had lived with her older sister and four other relatives in her three-room apartment in Clementi, died on March 14.

'My daughter is a ticking time bomb'

RARE DISEASE: Madam Grace Chin with her daughter, Miss Jane Tan, who suffers from a rare degenerative disease that slowly destroys the brain, nervous system, organs and muscles.

A mother's story

Jane's smile hides her mother's fear.

"My daughter is a ticking time bomb, there is really no way of telling what will happen tomorrow," says Madam Grace Chin, 55.

Her fingertips trace across her daughter's forehead to put her fringe back in place. Another smile.

Jane's condition means that she does not talk much. One of her doctors dubbed her the "silent fighter".

The first thing that grabs your attention about Madam Chin is her eyes - they have a strong, steely gaze, yet every so often a glisten of hope comes through.

A hope that comes from caring for someone with a terminal disease.

Her 28-year-old daughter Jane Tan suffers from a condition called Melas (mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes) - a rare degenerative disease that slowly destroys the brain, nervous system, organs and muscles.

It was not always this way.

Jane used to be healthy and enjoyed cooking, travelling and being with her friends for most of her teens.

That changed when she was diagnosed at 17.

Today, severe muscle dystrophy has left her wheelchair-bound.

She experiences splitting headaches, vomiting, loss of appetite, seizures and strokes on a regular basis.

DENIAL

Jane's condition is heartbreaking for Madam Chin.

"I was in denial. I couldn't accept that this could happen to my daughter," she says.

Early signs of trouble surfaced in 2004, when Jane abruptly lost her hearing. She was 15 and in Secondary 3.

Despite this, she was able to sit for her O-level examinations the following year, and her results secured her a place to study applied food sciences and nutrition at Temasek Polytechnic.

A mandatory pre-enrolment health screening alerted her to abnormal amounts of protein in her urine.

Tests led to a prognosis of suspected kidney failure.

A muscle biopsy confirmed the presence of Melas and from that point, life for the family was turned on its head.

The unpredictable nature of her daughter's illness means that Madam Chin can never let her guard down.

"What is more painful than seeing her in this condition is not knowing when things will take a turn for the worse."

Apart from being a full-time housewife and caregiver, Madam Chin is also her daughter's closest friend and treasured confidant.

From accompanying her daughter to weekly dialysis sessions and doctor's appointments, to administering hourly medication and keeping vigil by her bedside at night, Madam Chin tirelessly ensures that all her daughter's needs are met.

Whether it is watching the latest Korean dramas or trying out new recipes together, mother and daughter share an inseparable bond.

Madam Chin can find it an arduous task financing her daughter's home-based palliative care each month.

She says that medication, specialist check-ups and dialysis sessions can cost up to $3,500 a month.

Madam Chin's husband is the sole breadwinner of the family of five and things can hit rock bottom when their daughter has to undergo an operation.

The family is ineligible for a number of subsidies and grants because they own private property - a shophouse in Bedok where her husband sells furniture.

"Many patients I've spoken to feel that if you really cannot afford it, then yes, the Government will step in," says Madam Chin.

"If you are rich, then of course you can pay for it."

Her tone turns to one of resignation: "It is just us, the middle income group, that gets caught in the middle."

Thankfully, since last November, some help has come in the form of the Medication Assistance Fund.

What Jane misses most of all is the company of friends.

She struggles to speak, taking a whole breath to say each word.

"In the past, my friends and classmates, who could come, visited me whenever they could," she says before pausing to regain her strength.

"But everyone is so caught up with life, and most of them are working or married, so I hardly see them."

She admits it pains her that she cannot do the things most of us take for granted.

"Some days, it can be a little tough when I see friends living their lives, travelling and shopping, while I am wheelchair-bound."

That playful smile emerges again.

"But life goes on."

'The only thing scarier than cancer is the silence'

The New Paper on Sunday spends time with patients and practitioners of palliative care.

SOLACE IN ART: Mr Muhammad Khairul Ikhwan is a Stage 4 cancer patient, who became deaf due to a brain tumour.

A cancer patient's story 

Creativity is central to Mr Muhammad Khairul Ikhwan's identity. The 23-year-old Nanyang Academy of Fine Arts graduate's social media channels feature him in an array of outfits and enjoying being in front of the camera.

Yet he admits his paintings often have macabre themes, manifestations of his innermost thoughts - allegories of hope, sexuality and the unpredictable nature of life.

But Mr Khairul has dealt with the unpredictable.

The avid painter, dancer and drag artist is also a Stage 4 colon cancer patient. At one point, doctors gave him just two months to live.

The New Paper on Sunday visited Mr Khairul a number of times over four months.

When we met him in December, his cancer was at its peak, and his face was swollen from treatment.

He had been living with his disease for over a year, and he seemed fragile.

In November 2014, at age 21 and barely a few months into his national service, he began experiencing an incessant ringing in his ears - often paired with migraine.

"I thought I was going crazy," he explains in a voice softer than his frame would suggest.

The intensity of his symptoms alarmed him but hospital visits resulted only in painkillers.

By the seventh visit, he was experiencing anxiety attacks, double vision and blood in his stool.

In January 2015, after a complete loss of hearing in his left ear, he went to Singapore General Hospital. He was immediately warded.

"They found two mushroom-like lumps in my large intestine and a tumour in the brain - almost immediately they knew it was colon cancer," he says, his speech cautious and slow due to his hearing difficulties.

His first response?

Denial.

"I didn't want to believe it. I've barely lived my life. So why me?"

Yet Mr Khairul did not know at the time just how bad his cancer was.

He had lost all hearing and relied on his mother to tell him the doctor's verdict.

His mother, Mrs Sanisah Sanwan, could not bring herself to tell her son the full diagnosis - Stage 4 is commonly the point of no return.

Mrs Sanisah hoped she could keep his morale high by not telling him. It worked.

"Not knowing what stage helped, because I was feeling fine," says Mr Khairul. "I told myself that if I could survive this far, I could do anything."

He reveals: "I didn't know what stage I was in until a friend accidentally let on."

Discovering a dedicated circle of friends, who were eager to help and determined to see him beat his disease, has been one of the few positives.

He found courage from messages received on an almost daily basis on social media.

LONELY

But it could still get lonely.

"This illness has showed me the best and worst in people," he rues.

"Friends I've known for years avoided me because of my illness."

As a young cancer patient, he scoffs at the Hollywood feel-good take on the terminally ill with films like The Fault In Our Stars.

"They are sugar-coated love stories, which do nothing to highlight the actual struggles people like me go through."

His illness altered his lifestyle. He was no longer the party animal.

"My mother called me a vampire," he says with a laugh.

Yet cancer did little to dampen the spirit of the artist within.

His bedroom cupboards are packed with sketchbooks in a variety of sizes.

Art offers him a much-needed escape.

"When I paint, I wander off into another realm. There, I am someone else. Someone who is not me."

Despite reacting well to chemotherapy sessions, Mr Khairul spent months without his hearing.

"The only thing scarier than cancer is the silence that comes from being deaf," he confesses.

"It is a lonely world when you can't even hear yourself."

Since March, there has been a change in Mr Khairul's status.

He says the cancer has gone from "70 per cent active" to just "10 per cent".

His brain tumour has become smaller, and his hearing has returned.

In April, he even had his first art exhibition ­- fittingly titled Hope - held at the Nafa campus. He has another one lined up in August.

But he is not out of the woods.

He still has cancer. It is still Stage 4.

But he refuses to be meek and wait for darkness. He dresses up when he can.

"I don't really care what people think," he asserts.

"Be it in a positive or negative way, it is important to express yourself wherever you are."

 

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