How It All Started
Allow me to introduce myself. My name is Tim Ong. I am a general practitioner (GP) who work mainly as a family doctor in a small township situated about 30 minute drives from Kuala Lumpur, the capital of Malaysia.
In July 2002, my 44 year old uncle came to see me for a pain in his right leg. Little did I know then that it would be the beginning of a journey into the world of palliative care and the life of a caregiver.
An X-ray of the right tibia (leg bone) revealed abnormal erosion on the upper portion. Fearing the worse, I immediately referred him to an orthopaedic colleague of mine for further investigations.
After extensive tests, my uncle was eventually diagnosed of having right renal cell carcinoma with secondary spread to the bones. What this means is that he has malignant cancer of the right kidney, and this cancer has spread to involve the bones, specifically the pelvic bones, both his thigh bones and the bone in his right leg.
He was told that there was no effective cure for him at this stage, and that the best he can hope for from allopathic medicine is palliative care. He was offered radiotherapy to the affected bones to prevent pain and further erosions to the bones. His doctor was worried that further erosions to the thigh bones could result in a fracture later.
My uncle refused the radiotherapy. In fact, he refused any form of treatment from orthodox medicine and instead opted to trust his cure on traditional Chinese medicine. He truly believed that traditional Chinese medicine could offer him a cure.
This was the beginning of a pattern of seeking treatment from "reputable" Chinese physicians. After a period of trying one healer's treatment and not seeing any improvement, he would change to another healer. This goes on even until the last few days before his death. He refused to give up hope.
Meanwhile, his physical conditions deteriorated. He became more wasted as the days passed, and eventually it was too painful for him to move. Once he was bedridden, other complications set in. He developed a large bed sore on his back, just above the buttocks. He had difficulty passing urine in bed. Eventually, he also had constipation.
However, the symptom that troubled him the most was the bone pain. It was painful even to breathe. Whenever he tried to bring out his phlegm, the effort was always accompanied by pain.
Initially, he refused my offer to refer him for hospice care and pain control. To him, such a referral is an admission of the terminality of his condition. Eventually, however, due to the unbearable pain, he agreed to the hospice care.
He soon realised the immense benefit of having someone from the hospice to care for him. A big part of his bone pain was controlled with transcutaneous fentanyl patches, and any break through pain was treated with additional oral morphine. The bone pain did not entirely disappear but at least it was better than before.
The hospice nurses also taught his wife how to care for his bedsore, how to bathe him and change him in bed, and how to change the bed linen with him in bed. She was also told about the changes she would see in him as he becomes worse, the symptoms she should be on the look out for and when she should call them or a doctor.
All this information was necessary to make the caregiving experience one that is easier to cope with. It also helps to allay fear and anxiety and generally makes life more bearable for the caregiver.
My uncle eventually died after battling his cancer for nearly ten months.
However, my uncle did not have a good death. He suffered tremendously from the beginning till the end. We were able to do a fair bit to alleviate his physical sufferings by nursing him and providing him with the appropriate pain control.
It was the emotional and psychosocial sufferings that we were not able to do much to help him.
There were two reasons why this was so.
Firstly, my uncle has a very fixed idea about allopathic medicine. He did not trust doctors in general. He often suspects that they are out to make money from his illness. The only reason he trusted me was because I was his nephew.
He was also unable to accept the terminality of his illness, even when it was obvious that all the traditional Chinese therapies he had tried had failed. This was further compounded by the false hope that the Chinese healers would offer him, promising him recovery if he should abstain from certain food and Western medicine.
Like most people, my uncle feared death.
At one point, he told me that he was afraid to die. This would have been an opportune time to dwell into his fears. Unfortunately, I was so unprepared for this that I was not able to offer him a chance to explore his fears. I simply replied that everyone is afraid to die, and left it there. There was no further discussion and I lost a golden opportunity to allow him to come to term with his fear of death.
Looking back, I believed my uncle fear death because he lacked spiritual understanding. He was not a very religious man although he was generous in contributing to religious activities. Thus, when it was clear that death was imminent, he must have wondered about what would happen to him after death.
Would it all be final?
Would there be anything after death?
Would he even continue to exist?
In his last few days, when he was drifting in and out of consciousness, he would beg me to rescue him from harm or do something to save him. It was clear that he was still very much in fear.
Seeing him in those states was very difficult for all of us who were caring for him. It must have been worse for my grandmother who had to see one of her sons die before her.
We were all helpless and did not know how to assist him in this aspect. Taking care of his physical pain was easy but helping him to resolve his emotional problems was something none of us understood, not even me.
Thus the second reason why he had to suffer was because his caregivers, including myself, were not equip with the knowledge and skills to deal with the emotional and psychosocial aspects of a dying person. I believe that having such skills would have made a difference to my uncle in his last days.
It was seeing all these sufferings my uncle endured and knowing that with proper skills and knowledge my uncle's final days could have been better that convinced me of the need to familiarize myself with hospice care.
It was this seed that eventually grew into my own involvement in the hospice movement in my local community.