This year marks the 25th year of palliative care in Malaysia, and though we have made great strides in the field, our community engagement is way below average.
Many are still being left to die in pain, in discom-fort and without dignity.
Everyone has a role to play in contribut-ing to better care for all.
“Learning to be caring and recognising the need to respect human life can make a world of difference. Nobody should have to struggle and suffer on their own at the end of their life,” said Malaysian Hospice Council (MHC) chairman Dr Richard Lim Boon Leong at the 12th Malaysian Hospice Congress held recently.
Themed Palliative Care Is Everyone’s Business, the congress was organised by MHC, the national voice of 25 hospices scattered throughout the country.
The World Health Organization (WHO) defines palliative care as “an approach that improves the quality of life of patients facing problems associated with life-threatening illnesses”. It is not only confined to aged or terminal cancer patients.
Palliative care services in Malaysia are provided free to patients, regardless of need. This includes loans of wheelchairs, com-modes, crutches, hospital beds and oxygen concentrators, as well as home visits by doctors and nurses specially trained in palliative care.
Currently, Malaysia has 18 specialists trained in the field, and seven government hospitals with full-time specialists in palliative care.
There are also formal teaching courses for nurses and paramedics in this industry, plus advanced diploma programmes for nurses, occupational therapists and physiothera-pists.
Despite the significant growth in the field, there remains a lot more to be achieved as society continues to age, said
Dr Lim, who is also the Health Ministry’s national advisor for palliative medicine.
A recent survey of the number of patients served by MHC revealed the figure to be 4,500. However, data from needs analyses showed that at least 50,000 people who die in Malaysia need palliative care.
“Hence, we are seeing only about 10% of the need. Can we say that we have achieved good pain control for all cancer patients in Malaysia? Can we say that we provide adequate coverage and support for people who want to spend their last moments at home?
“Can we say that even in our specialised palliative care units, we are achieving adequate psychological, social and spiritual support for our patients?
“I think what we have achieved is far from what we need. No matter how many specialists or nurses we train, or how many palliative care units or hospice organisations we create, we will not be able to reach the universal coverage we hope to achieve unless we can involve everyone,” he said
Out of the 141,085 deaths recorded in the country last year, 51,975 deaths occurred in hospitals.
Dr Lim noted, “The statistics show people are dying at home more. But how are these people being managed? Are they abandoned or suffering in pain?
“Patients who need palliative care are in severe pain, immobile, distressed and breathless. No one should be left to die alone and in pain, so we need to bridge the gap between the hospitals and the community.”
Health Ministry (medical) deputy director-general Datuk Dr Jeyaindran Sinnadurai pointed out that Malaysia has an unhealthy ageing population, with most people above 50 having at least one non-communicable disease.
One of the problems in Asian society is that families often make medical decisions for the patient, though the patient is of sound mind.
According to palliative care specialist Dr Fazlina Ahmad, who delivered her paper on Bad News And Collusion Consequences, family members do not want to deliver bad news to the patient, for fear of them being distressed or losing the will to live, or upsetting their lifestyle.
“In our culture, it is not uncommon for doctors not to disclose diagnosis of advanced cancer to patients. Literature shows that 80% of doctors agree to the family’s request.
“For doctors, collusion is an easier option than telling the truth. It reduces their own stress and anxiety – they don’t have to worry that the patient might deteriorate quicker.
“Although the truth hurts, deceits and lies hurt even more! You don’t want to present a false reality and deny patients and families the opportunity to adapt a more achievable goal. This also strains relationships because of the ‘secrets’ involved and a feeling of distrust develops, which can then induce depression and panic attacks in patients,” she said.
As patients need to prepare to say goodbye, Dr Fazlina felt it might be liberating for them to know about their medical condition so they can organise their remaining time and attend to unfinished businesses.
“You may think collusion is an act of love or filial piety, but non-disclosure has unfavourable outcomes.”
Palliative medicine consultant Dr Loh Ee Chin addressed the issue of Morphine – Myths and Truths, noting that it was the most common drug prescribed for those with end stage terminal illnesses.
“Drug addiction is a chronic seeking behaviour to feel high, but with cancer patients, it has an opposite effect. They are reluctant to take morphine for fear of addiction. Morphine is friendly on the stomach and doesn’t cause gastric or kidney problems. The only side effects are sleepi-ness, dry mouth and constipation. If any doctor tells you a medicine has no side effect, you better get worried!”
Morphine is obtained from the seedpod extract found in the poppy plant. Certain drugs that are derived straight from opium are called opiates, and these can be highly addictive while causing physical and psychological dependence, and withdrawal symptoms.
Dr Loh said, “When synthetic opium came about, people started using it as medication to relieve moderate to severe pain.
“An example of this is oxycodone. It is widely prescribed, and everyday, people are dying in the United States because they are mixing it with alcohol.
“So, know what you’re taking.”
Towards the later part of life, or when something drastic happens, people tend to get more spiritual or religious, observed Reverend Father Simon Labrooy.
“Spirituality cuts across every boundary of race, religion and belief systems. When you’re faced with a dying person, encourage them to open up and express themselves. Don’t talk about yourself and deny their feelings.
“Patients always have a story to tell and a mountain of emotions to battle with. Talking helps patients bridge the gap between where they are and where they want to be,” he said in his paper Discussing Spirituality In Palliative Care.
He cited Australian palliative care nurse and singer Bronnie Ware’s experience in counselling the dying in their last days.
She recorded their dying epiphanies in a blog called Inspiration And Chai, which gathered so much attention that she put her observations into a book called The Top Five Regrets Of The Dying.
Here are the common five regrets she witnessed:
1 I wish I’d had the courage to live a life true to myself, not the life others expected of me
This was the most common regret of all. When people realise that their life is almost over and look back on it, it is easy to see how many dreams have gone unfulfilled. Most people had not honoured even half of their dreams, and had to die knowing that it was due to choices they had made, or not made.
2 I wish I didn’t work so hard
This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners.
All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence.
3 I wish I’d had the courage to express my feelings
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result.
4 I wish I had stayed in touch with my friends
Often, they would not truly realise the full benefits of old friends until their dying weeks, and it was not always possible to track them down.
Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved.
Everyone misses their friends when they are dying.
5 I wish that I had let myself be happier
This is a surprisingly common one. Many did not realise until the end that happiness is a choice. They had stayed stuck in old patterns and habits.
The so-called “comfort” of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content, when deep within, they longed to laugh properly and have silliness in their life again.