Out of the several patients we have dealt with, the following stand out.
Cancer patients should not die in pain
A true story
Sarath was 21 yrs old when I heard of him. One of my volunteer friends who visit cancer patients regularly, saw him and his father, at Shanthi Niwasa; a tranquil place, a place where patients from faraway places, could rest and stay, free of charge. She rang me soon afterwards requesting help for Sarath.
She asked me to help him as he was in severe pain. He had cancer which has spread to the spine. The doctors have told him there is no further treatment. But he was in excruciating pain. The irony is that no one in the ward believed him.
The reason was that as soon as morphine, which is given for severe pain, was given, the pain subsided. When the effect of morphine wore off, the pain came back. Unfortunately, there was no one who understood the severity of his pain and no one in that ward knew how to control the severe pain.
There was no one who would sit down for a few minutes to ask about the pain or to explain what was happening.
Unfortunately, his symptoms were ignored by the HC professionals in the ward, due to the lack of knowledge of pain management and palliative care. As a result, it was thought that he was a drug addict.
Whenever he c/o pain, he was given a morphine injection and discharged from the ward. As he lived far away from Colombo, he could not go home due to the severity of the pain. He stayed at Shanthi Niwasa and would go back to the ward, next day, following a sleepless, agonizing night due to the recurrence of severe pain.
sadly he was reprimanded for coming back to the ward. In the end, he was transferred to the hospital close to his home. Here too, pain control was very poor. He would lie in bed curled up day after day. His family didn’t realize the severity of the pain and was reluctant to take him to a specialist, competent in pain management. I have been in touch with him, and his family from time to time throughout this difficult period.
Sarath rang me about a month before he died. At last, he was taken to see the specialist we recommended for pain control. He told me that the pain is much less and the doctor was very kind. After at least 9 months of suffering, physically and mentally, he was feeling better only for a month or so. He died a week ago. There are a number of lessons we need to learn from this unfortunate young man’s death; to prevent such sufferings to patients and their families.
Although there is no further treatment for a patient with widespread cancer, there is so much we could do to help the patient to live with pain. Last 9 months of his life would have been pain-free if only the doctors listened to him and knew how to control the pain.
- All doctors who are caring for cancer patients must be taught pain management. If they are not competent, the patient must be referred to a pain specialist.
- We must never laugh at a patient as the patient knows his or her symptoms more than we do.
- We must learn to go to the patient, sit by the bedside, and take a pain history; then treat accordingly.
- Explain to the patient and family regarding our management. This will take a load off their minds. The patient will feel better instantly.
- In the long term, all medical students should be taught pain management in depth, and care of the dying patient.
Then only our patients could die with peace and with dignity; pain and other symptoms controlled.
Dr. Chitra Weerakkody
RAH is a patient with oesophageal cancer (gullet). He could not have surgery or radiotherapy because of heart failure. He could not swallow and the food was given via a nasogastric tube. When the time came to renew the tube, it could not be passed. He was given a jejunostomy (a small hole is made through the abdominal wall and a loop of the small bowel is fixed to it and an opening made in it. A tube is passed into it and liquid food is given through this tube). He was so desperate to eat something; he would take a bite, chew and discard. We felt strongly that this is not quality of life. So, we referred him to an endoscopy specialist for a second opinion, with a view to inserting a “stent” past the obstruction in his gullet, so that he could enjoy some time eating like you and me before he dies. Assessment tests are in progress, we are hopeful of a successful result.
Mrs. P is a 60-year-old lady with breast cancer first diagnosed 7 years ago. Since then she has developed progressive weakness of lower and upper limbs. Currently, she is completely paralyzed waist down, has no sensation or control of her bladder or bowels. One arm is also paralyzed. Her husband is her full time and sole carer. She developed severe pain in her legs and we felt she needed admission to hospice for symptomatic treatment. Initially, she was very unwilling to leave the house as she was scared that she would not get the support in hospice that she gets at home. We promised the services of a personal attendant if she needed it. This gave her the confidence to come to the hospice. Her pain is controlled and she is well looked after and settled in the hospice. Equally importantly, this has provided a much-deserved break for her husband, confident that his wife is well cared for. The welfare of the carer and their need for respite care is something often overlooked.
Mr. C’s daughter rang the helpline to inform that her father who is a 62-year-old man is suffering from severe pain over the last 18 months as a result of cancer. He has been working as a labourer and had to stop working due to the illness. He was asked to buy cancer drugs but had no means to get these. (The drugs are not available in hospitals at times.) He was also supporting his daughter and the 3 grandchildren when the disaster happened. The pain was so severe he was requesting something to end his life. As he had no means to travel to the hospice we were able to provide transport for him from the funds of Sahan Suwa. More importantly, we were able to control the pain completely within 3 days. Unfortunately, he left the hospice as he wanted to help the family. It is very likely the pain may have recurred.
These two stories above show that, in most patients, severe pain could be completely controlled.
Mrs. S rang the helpline to ask for a monthly income. When we talked to her it transpired that she is a cancer victim who is undergoing chemotherapy for further spread of the disease. She has lost her husband 6 months ago suddenly due to a heart attack, leaving her with 3 children of ages 18, 16 and 10. She has no income except the occasional help from her family. We sent an email to two friends overseas who in turn have forwarded the mail to others. As a result, we are able to secure the future of the 2 younger children, in the way of education. We are also grateful to kind donors especially from Oman who have pledged financial support for this family. This story shows that it is not just about pain relief. When we engage with people, we are able to help them in all sorts of unexpected ways too.
Our thanks go to the enthusiastic helpline doctors who are taking calls amidst busy working lives. Some have offered to do home visits.
Most of all, thank you all for reading these real-life stories. We shall keep you informed of our progress.