"THERE was a lot they didn't tell you about death, and one of the biggies was how long it took the ones you loved most to die in your heart."
I'll never forget the day my father died. His laboured breathing and the beep of the machines that surrounded him sounded like the death knell marking the hours, minutes and seconds of his final lap on earth. "He's as comfortable as he can be," a voice by my side told me gently. It was the palliative care physician who came to stand next to me quietly.
"Talk to him, say your goodbyes, touch his hand. It's often said his sense of touch and his hearing would be the last to go," he continued, adding: "Be there for him. He needs that right now." I nodded wordlessly, gulping down my hot tears that threatened to spill over.
And so, we did just that. His four daughters gathered around his bed, taking turns to hold his hands as we reminisced, laughed and cried. We sought his forgiveness and told him we loved him — conversations we scrupulously avoided in the past. "Don't worry about us," I told him gently. His rattling breath stilled a little and I could've sworn he listened as I spoke.
My father's death finally announced itself with a long exhale and then silence, as the breath literally left his body. I felt a steady hand on my shoulder. It was that same palliative doctor who spoke to us earlier. I couldn't remember his name in my grief, but I felt his compassion as he stood silently with us.
Of all the times I spent with my dying father, I remember these moments the most — the sound of the machines, his rattling breath and swollen hands; the hum of the flat line on the machine once his final breath left him in a soft sigh; the aching numbness, then tears and regret. But most of all, I remember the kindness and empathy shown by the doctors who prepared us for his imminent death.
As I narrate my experience to Dr Richard Lim Boon Leong, he smiles before responding simply: "These final moments matter."
I confess shamefacedly to him that I'd initially rejected the option of palliative care for my father. "The word 'palliative', I thought of it as synonymous with hospice," I admit, echoing a common misperception. "I didn't want to face that possibility. I didn't think it was time yet."
Perhaps it's not surprising that many families know little about palliative care; it only became a recognised medical specialty in recent years. My own experience, as a daughter who navigated her father's last years with chronic illness, has kept me alert to the national conversations now taking place about the role of palliative medicine as essential health care.
Dr Lim, who's the head of the Palliative Care Unit in Hospital Selayang and national adviser for palliative medicine in the Health Ministry of Health Malaysia, gently corrects me, saying: "The perception that palliative medicine is focused on death and dying isn't true at all."
"But don't you deal with death and endings on a daily basis?" I argue. "Well, we do," he agrees, before continuing: "The truth is, palliative care is about life and it's about living. It's about living life to the fullest."
PALLIATIVE CARE
From the early days of medicine, caregivers have understood the primacy of reducing their patients' suffering; the first aim has always been to make people feel better. Palliate comes from pallium, the Latin word for "cloak". To palliate is to cloak, or cover up, the symptoms of an illness without curing it.
This meaning eventually evolved into the idea of alleviating or reducing suffering. Palliative care began as hospice care, often delivered by caregivers at religious institutions. Dame Cicely Saunders, a British physician who had degrees in nursing, social work and medicine, founded the first hospice in 1948 primarily to care for patients with terminal illnesses.
Her success in improving her patients' quality of life led her to introduce the concept of hospice care to other physicians, who very quickly saw the value in respecting people's wishes and needs at the end of life. Doctors and caregivers began to understand that these values could apply to patients without terminal illnesses as well.
In Malaysia, the first formal palliative care unit was created at Queen Elizabeth Hospital in Sabah in 1995. The unit in Sabah promoted palliative care to the Ministry of Health Ministry, and in 1998, it was agreed that this unit should be promoted and developed at all state hospitals. But he concedes that despite its growing recognition, it was a field that very few people had a clear understanding about.
He leans forward and says impassionedly: "I mean, let's be honest here. Why put all that effort into treating someone who's going to die anyway? How much effort do I need to put into that? But that's where I question this: When people are facing the end of their lives, they have a serious problem and they're the sickest patients in the healthcare system. Why would people think that this doesn't require expertise or effort?"
He sighs, telling me that people often ask why he opted to take up palliative care as a specialty. "They were asking me why would I want to be a specialist in palliative care?" I nod and tease him: "Well if it was up to me, I'd be a plastic surgeon!"
Dr Lim chuckles at that, retorting: "Yup. They probably thought I couldn't really do anything else, so that's why I opted for palliative care. I mean, you couldn't do any worse. The patient's already having a life-limiting disease anyway!"
He shakes his head. This is an attitude he hopes to dispel. "Everyone at any stage of their life is important. At every part of the healthcare system, physicians put in so much of their effort into helping their patients. We shouldn't be shabby about giving our best during the patient's final days. This too is an important part of everyone's journey and requires specific training and skillsets. Every single person is worth the effort and that's why palliative care is important."
Yet, those who are dying aren't the sole beneficiaries of this form of treatment. Palliative care is sometimes misunderstood to shorten life expectancy, but it's actually a method to improve symptom burdens. "Hospice is a form of palliative care for people who are dying, but palliative care isn't about dying," he explains, adding: "It's about living as well as you can for as long as you can."
As we talk about death, dying and life-limiting illnesses, I'm reminded that these difficult conversations are often discussed here, in this hospital and many other hospitals like this. Doctors like Dr Lim are in the business of saving lives and giving hope to those who are suffering and their caregivers.
"Even though someone is sick and has an irreversible illness, that person is actually still alive and there are certain steps that can be taken to help him live out the rest of his days meaningfully. Paradoxically, people are actually living out the best times of their lives even though they may be facing the very end of it," he shares.
For a moment, he grows quiet. From the window behind his chair, I see that the skies have darkened slightly. It's Friday evening and I can just imagine people out there getting ready to leave their offices to head home. Meanwhile, in hospitals like this one, there are patients who may never experience those mundane moments again. I gulp. It's easy to think of such thoughts here.
"Here's an example," he finally says, breaking my reverie. He tells me of a 16-year-old girl from a well-to-do family who was dying. Her father, a successful businessman was busy all the time and didn't have a lot of time to spend with his daughter until she got really sick.
"She was referred to me by a private hospital, and we sorted out her pain," recalls Dr Lim, adding that he had a long discussion with the girl's family on palliative care as her disease progressed and ravaged through her body.
Days after she passed away, her grateful father visited Dr Lim and said tearfully: "The time I spent with her in the last six months has been so important and meant more to me than all the times I'd been her father before that."
He grows quiet again. With an air of thoughtfulness, he continues: "It's sad, no doubt, and life has its limitations. But it doesn't mean that because you got a diagnosis that can't be cured, life ends there. With support, you can use that time you have meaningfully. That's why I say palliative care is all about life and living life to the fullest."
Over and over again, Dr Lim sees that in the scores of patients he's been treating since the 1990s — the desire to live life as they see fit and not be dictated by the ravages of disease and time.
People with serious or life-limiting illnesses, seniors and caregivers should understand that palliative care offers more care as needed, not less. Unlike hospice, says Dr Lim, patients can use it at any point in an illness — many will "graduate" as they recover — without forgoing curative treatment.
The vast majority of patients who need palliative care aren't dying, points out Dr Lim, adding: "They're debilitated by things like pain that affect the quality of their lives and ability to function, and can eventually impact their survival."
Palliative care focuses on quality of life, providing emotional and spiritual support for patients and families, along with drugs and other remedies to ease symptoms. Its practitioners help patients and their caregivers explore the complex medical decisions they often face, then document their preferences.
I nod my head. "I don't think we could've navigated my father's passing without the help of palliative care," I admit, a lump forming in my throat. Dr Lim nods his head understandingly. An air of calmness seems to radiate from the youthful 51-year-old.
The kind voice, the reassuring smile and his quiet assurance seem to be hallmarks of a dedicated physician who takes the Hippocratic Oath — the oldest binding documents in history — to heart, and to "…first do no harm and to treat patients to the best of one's ability."
If I were to face, God forbid, a devastating illness, or have someone I love go through that painful process, I'd certainly want Dr Lim in my corner.
EARLY MOTIVATIONS
For someone who deals with death and life-limiting illness on a daily basis, the lanky doctor's office looks decidedly cheerful. Brightly lit with a large desk cluttered with stacks of papers and files (he apologises for the messy desk), Dr Lim sits across me with a wide smile on his face.
The only ode to death (I confess I'm looking for something a little bit more morbid to tie his profession to the Grim Reaper) is the bouquet of dying flowers wilting from one of his cabinets, which he apologises sheepishly for as well.
Born and bred in Petaling Jaya, Dr Lim studied in LaSalle Petaling Jaya. His earliest ambition was to become a mad scientist. "I imagined inventing something as mind-blowing as well… as iPhone!" he quips, before adding drolly: "I think it's the result of reading too many Marvel comics when I was younger!"
But the call of becoming a physician was birthed out of his love for community service. "I joined the Leo Club when I was still in school. And we did a lot of community works, and my interest in working with people and serving the community actually evolved from there," recalls Dr Lim.
He felt that he wanted to find a career that would contribute directly to the people in need. "I could either become a social worker or a doctor. Since I was doing well in studies, why not be a doctor?" he shares.
Dr Lim was also influenced by the founder of his alma mater, La Salle Institute.
The institute was founded in 1680 by John Baptist de La Salle and his earliest followers called themselves "Brothers". De La Salle, felt himself, "moved by the abandonment of the children of the artisans and of the poor", gradually found himself more involved in the training of school teachers who were employed to teach these children by establishing schools, which were run mostly on donations from the local town, village or parish community.
"I felt that his story was inspiring. He gave up his wealth for a cause and left an indelible legacy that goes on to this day," shares Dr Lim, adding with dry humour: "My life comprised both studying hard and praying hard after that!"
He eventually got a place at Universiti Malaya to study medicine. "People often ask me how was medical school and I'd tell them it's everything that I hoped for. It's everything I wanted to do and I've been happy to do it ever since," he says, smiling.
FINDING HIS CALLING
The young medical student's only exposure to palliative care back then was when he was in his third year of medical school. While doing his rotation at the primary care department, he was shown a one-hour video called the cancer journey that chronicled the final journey of a cancer patient.
"Interesting, isn't it?" said the lecturer. It was a rhetorical question, of course. But there was so much to think about. What happens when things aren't working out despite your best efforts? What do you do?
That question ran in his mind when the 23-year-old had a health scare not too long after that. Here, Dr Lim struggles to articulate his experience. "I thought I was actually having a fatal disease," he says, before adding: "It was serious enough to require some investigations and the waiting really got to me."
Dr Lim was anxious and worried. "I never thought I'd be faced with my own mortality at the age of 23," he recalls dryly. One day, the young man had a strange dream. In that dream, he was lying on his deathbed, surrounded by grieving family and friends. "Don't be so sad," he comforted them, adding: "Don't worry. We'll be meeting again someday soon…"
The words that he uttered were so profound that he woke up, believing and finding comfort in them. All the anxiousness and worry disappeared after that dream. "Thankfully I had good news when the results finally came out," he recalls. Still, the whole experience impacted him in a deep way and he later opted to do his electives in palliative care at Hayward House, a palliative care unit in Nottingham, England.
Dr Lim spent a few months there, following consultants, sitting with patients and chatting with them. "I wanted to know more about palliative care and soon found that this branch of medicine really resonated with me. I just felt that this was what I wanted to do," he says softly.
Watching the nurses calm and comfort the patients in the dead of the night deeply touched him. "There was so much care and love. There was something more to this and this really must be a calling. You can't pay people enough to do this kind of work. Being a comforter to those who desperately need comforting the most. There's more to medicine than the biology of it and the medication."
After graduating in 1996, Dr Lim opted to train in internal medicine and oncology owing to the fact that palliative medicine was still at its infancy back then. "I didn't want people to think I was doing palliative care because I couldn't do anything else," he asserts sheepishly.
He went on to complete the MRCP (UK) in 2000. At the end of 2002, Dr Lim was sent to Hospital Selayang to start a palliative care unit. "I've been here ever since!" he says blithely. Of course, he was also sent for training in Palliative Medicine at the Sydney Institute of Palliative Medicine, Australia, in 2006. There was no looking back for Dr Lim.
Today, there are two consultants, including Dr Lim, who runs the unit with a team of specialist trainers and medical officers. What's a day in the life of a palliative care doctor? I ask.
He pauses before replying: "By starting the day with an attitude of gratitude. By spending time with my patients and really listening to them. I often ask an open-ended question: 'So how are you feeling today?'"
The most important thing is to really listen to them. "You don't always have to have an answer for them. People just need to be heard," he continues simply.
Talking will never be easy, but it's increasingly necessary. As medical technology advances, says Dr Lim, there'll be more and more that doctors can do. But it's not always clear there's more they should do.
Only through earlier, deeper conversations can physicians like Dr Lim ensure that patients are heard and valued. And only by acknowledging the gaps in the healthcare system can they try to ensure that everyone, everywhere, gets the care and dignity they deserve in their final stages of life.
I remember the palliative doctor who stood with my family and me as my dad lay on the bed dying. We felt heard, we felt his care and we remember how he listened patiently as we struggled to articulate our feelings. I may not know his name, but I'll never forget him.
How people die, as the hospice founder Dame Cicely Saunders once remarked, stays in the memory of those who live on.