PALLIATIVE care is defined by the World Health Organisation (WHO) as an approach that improves the quality of life for patients and their families facing the problem associated with life-threatening illness through the prevention and relief of suffering using early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial, and spiritual.
Over the past decade, WHO has continuously referred to the importance of developing better access to palliative care throughout the world, emphasising the urgency to relieve suffering, and improve quality of life in those with life-limiting illnesses as a basic humanitarian need.
While it is a field of medical practice that commonly involves doctors, nurses and many different allied health professionals, we must remember that the work of truly supporting and caring for a person suffering from a life-limiting illness is really done by family members, friends, and people in our communities.
So this is where it is often said that ‘Palliative care is everybody’s business’ because whether we like it or not, we and all those who are close to us will finally reach a point in our lives where the end becomes more and more inevitable.
What can we do to help?
How then can we support someone who is suffering particularly from an incurable medical condition?
Researchers in the field of palliative medicine have developed various tools that can be used to assess suffering.
However, among these, the simplest tool that can be used by anyone is to ask the person “Are you suffering?” followed by “Would you like to talk about it?”
An important caveat to using this tool, however, is to ensure that after asking this question, you have sufficient time and patience to sit down and listen.
Listening is one of the most important skills to develop when you are trying to support and care for someone sincerely.
By listening attentively, we demonstrate how we recognise the person whom we are talking to and how their thoughts and feelings matter to us.
It also shows respect to the person and maintains dignity.
The art of listening, however, is not only about hearing the words that are being spoken with our ears and it is a skill that is described so aptly in Chinese calligraphy which derives the word ‘listen’ from the components of ear, eye, heart, and emperor.
In essence, it describes listening as an exercise where we use our ears to hear the words and the sounds (intonation of voice), our eyes to see the facial expressions and body language, and finally our hearts to feel the meaning of what is truly being said.
All this can only be achieved when we give the person our undivided attention as though he were an emperor. So when we sit down with a person who is suffering, be sensitive to the gentle cues you may hear in the tone of the person’s voice or the look of despair in their eyes, and feel what it is that they are saying.
By doing this, you can connect with the person and this can be a great comfort.
Since suffering is due to a threat to the intactness of the person who is a construct of a myriad of factors, if we are sensitive enough to see the sources of suffering, we will find there are many things we can do to help address their suffering.
If you are really sensitive in assessing the suffering, you will find there are too many things for just one person to do and, indeed, everybody has a role to play and can help support a person with a life-limiting illness.
One of the most important ways we can help is by offering practical assistance to patients and their families to help them cope with their situation.
Caring for someone who is very sick is, indeed, challenging in so many ways and the biggest problem we are facing globally today is that there are not enough people to care for one another as populations are becoming increasingly aged and the number of young and able bodied individuals who can care for the sick are too few.
For those who are wealthy, they hire private nurses and foreign maids who do the job for a fee but what of those who are less fortunate whose relatives are few and struggling to make ends meet.
Nursing homes can also cost quite a bit and in general, ask yourself, if you were really sick and dying, where would you prefer to be? At home or in a nursing home?
Studies looking at the preferred place of care towards the end of life have repeatedly shown a significant preference to be at home where there is a semblance of normalcy and where people feel most at peace.
So while the majority of people prefer to be cared for at home, this leads to an enormous burden on family members who bear the brunt of providing this care.
I remember Kay*, a 60-year-old patient of mine who was blind and completely paralysed due to a nerve disorder.
This disease had been slowly progressing over many years till she became bedbound and totally dependent on her husband Fred* to feed her, change her, turn her, and constantly stay by her side so she would not feel isolated and alone in the darkness of her loss of vision.
Fred was an amazing husband and I so admired his devotion and love for his wife. They had only one daughter but unfortunately, she was not involved in her mother’s care and hardly ever visited her.
Although Fred was amazingly devoted, his physical being could not take the strain of caring for Kay 24/7. While one may say, their daughter should really step up and help out more, the unfortunate reality is that sometimes the rejection of your own flesh and blood maybe even more painful than the incurable disease that renders one so dependent.
For Fred, it was easier to bear struggling with caring for Kay on his own rather than to call his daughter only to feel rejected and hurt.
Soon, he began to entertain a thought that he felt was the only way out. He thought of carrying Kay down to their car in the night, get a hose connected to the exhaust and place it through a crack in the closed windows.
He would then get in the car with Kay, turn on the engine, play some gentle music and just cuddle his ailing wife till they both fall asleep for eternity.
Studies have shown while many think pain and physical suffering from diseases is the main reason people consider things like euthanasia and physician-assisted suicide, recent data suggests that people are increasingly requesting for euthanasia because they feel they are a burden to others and there is just not enough care available to maintain their dignity.
For Fred and Kay, fortunately, they were referred to the local community hospice team who brought her to the hospital to allow Fred to get more help and support.
While we sorted out a few medical issues in the hospital, the real treatment for this situation was when we managed to get a group from Fred’s local church to help provide three hours of care a day to allow Fred some respite.
In that time, the volunteers would read to Kay or help feed her and just accompany her so she would not feel alone and that made all the difference.
Fred and Kay now stay in a residential home where there is more assistance for them and they carry on each day, sharing a loving relationship which still matters very much to the both of them.
Another important way to help is by assisting the person who is ill and suffering to realise some of their dreams.
A major part of suffering can come from the spiritual domain where there is a loss of hope to achieve anything meaningful in life.
For many who are diagnosed with incurable illnesses, they know their time will be shorter than others and their hopes and dreams to achieve things in life will never be as fulfilled as their family or friends.
This is especially in those who are young. When we talk about dreams, however, we must understand this is not about building castles in the air and the goals and ambitions being striven for need to be realistic.
Tracy* was in her 30s when she was diagnosed with stage 4 breast cancer, which had spread to her spine, causing a spinal cord injury.
Despite radiotherapy, she continues to experience back pain which significantly affects her movement.
As a young lady who was financially independent, her dream was to travel but when I first met her, she had given up all hope of living and only looked towards death in her future.
After optimising her pain control, we managed to get Tracy sitting up and walking short distances.
When asked about her dreams, Tracy said she wanted to have a holiday in Japan. As unrealistic as this seemed, we did not dismiss the idea but suggested she try something smaller first.
Tracy then mentioned her wish to visit the seaside. With the help of a group of volunteers, Tracy managed to go to Port Dickson and dipped her feet into the sea and this gave her a great sense of achievement.
As the months went by, Tracy continued with her palliative care and cancer treatments and with a lot of support from her friends, and much to my surprise and delight, she did visit Japan! So dreams do come true.
Tracy also talked about her dream of becoming a nurse to work with children and bringing joy to those in the paediatric ward.
Weeks before she passed away, a group of volunteers managed to help her blow up and twist up balloon animals to give to the children in our hospital’s paediatric ward. This was one of her last wishes.
The search for meaning is a constant driver in our lives and more so at the end of one’s life particularly when faced with a terminal illness where one is slowly deteriorating with lots of suffering along the way.
Fulfilling wishes and dreams ultimately aims to improve and maintain one’s self-worth and dignity. It helps the person continue to find meaning in their lives even though they are facing illnesses that ravage their physical form.
Our lives can still grow and discover meaning even when our physical abilities have significantly deteriorated.
Palliative care is an area of medicine that needs to be developed so that every single person in our country can access some form of this care wherever they may be.
This is because a large majority of us will eventually develop some form of chronic illness during our lives which may result in some degree of suffering towards the end.
In Malaysia, palliative care service has been developing for almost 30 years now but the access to this care is far from equitable.
Currently, in Malaysia, over 70 per cent of deaths that occur are due to non-communicable diseases and with better healthcare services, this percentage is likely to increase in the future.
Realistically, a large majority of us will eventually develop some form of chronic illness towards the end of our lives, requiring palliative care.
In November 2019, the Ministry of Health launched the first National Palliative Care Policy and Strategic Plan 2019-2030, which outlines a clear approach on how equitable palliative care can be achieved in Malaysia.
Among its key strategies is community engagement in the delivery of palliative care throughout the nation. This strategy is being highlighted as the Ministry of Health and the World Health Organisation are convinced equitable palliative care in a country cannot be achieved by developing services from within the Health Ministry alone.
More help from non-governmental organisations (NGOs) to develop hospice services is needed, especially in rural areas, and the general public can certainly help by providing more support to these organisations in the form of financial assistance, volunteer support, and also by promoting greater public awareness of the need for palliative care.
An important aspect of public awareness would be to demystify common misperceptions regarding palliative care.
All too often I hear things such as “palliative care is only needed when the person is in the last days of life”, or “palliative care shortens life as they use morphine”, or “palliative care is like euthanasia”.
It must be made very clear palliative care is in no way similar to euthanasia and morphine used for proper pain and symptom relief does not shorten a patient’s life.
The dangers of using morphine come only from the misuse of the drug in people other than those with serious illnesses and not in the palliative care setting.
It is the hope of the Ministry of Health and the Malaysian Hospice Council that more communities will become more aware of the need and the role they can play in providing palliative care to the nation.
It was Mahatma Gandhi who said, “A nation’s greatness is measured by how it treats its weakest members.”
* Names have been changed.
Dr Richard Lim Boon Leong
Consultant Palliative Medicine Physician
About the author
Dr Richard Lim is a consultant palliative medicine physician and the head of the Palliative Care Unit at Selayang Hospital, Kuala Lumpur.
He is currently the national adviser for palliative medicine in the Ministry of Health, Malaysia, and also the current vice-chairman of the Malaysian Hospice Council.
Dr Lim’s main interests include education in cancer pain management, end-of-life care, and communication.
His current focus is on the development of palliative care services throughout Malaysia.