Loving care: Rohani Rani has advanced stage cervical cancer which has spread to her spine. Hospice Klang and Dr Michael Yoong got her a special bed, and even brought a hairstylist to give her a haircut.
Hospice Klang brings joy to an otherwise sombre situation.
IT’S a hot, sunny morning in Kampung Sireh, Port Klang. As Dr Michael Yoong, nurse Tay Yew Mee and driver Yap Eng Chong step out of their car, a woman gets up from a sofa excitedly and greets them with a big smile.
She is Siti Rubiah Yawil, 55, and from her cheerful outlook, you’d never guess she has advanced breast cancer. She lives in the village with her husband and three children, one of whom is disabled.
Dr Yoong, who is chairman of Hospice Klang, and his team of volunteers are on their daily visits to cancer patients’ homes. These are patients in the advanced stages of the disease where cure is no longer an option. The team starts their morning with smiles and laughter at Hospice Klang’s headquarters in Taman Andalas, Klang.
This may come as a surprise to those who think hospices and palliative care are sombre affairs. Quite the contrary, it’s about patients accepting their situation, and caregivers giving them comfort and joy. It’s about taking away the pain and loneliness, so that the patients can live out their days with smiles and friendship.
Siti Rubiah cracks jokes even as she recounts how she first became ill.
“I liked to merempit!” she laughs. “I used to transport schoolchildren on my motorcycle to earn some money.”
One day, she felt feverish, and didn’t know why. Doctors in hospitals and clinics had no answers. Then her stomach began bloating. It was only after a mammogram that she was diagnosed with breast cancer, which had spread to her abdomen, causing a build-up of liquid there.
“We give her medicine which we know how to administer, and she doesn’t have to go to the hospital,” says Dr Yoong. “Otherwise she would have to go there to drain out the liquid.”
“When I go to the hospital, they won’t give me any medicine because they feel the medicine prescribed by Dr Yoong is better,” says Siti Rubiah.
No more pain
Further down the road, at Jalan Kem, is Chew Yoke Lian, 52, who has advanced stage throat cancer. Looking at her now, it’s hard to believe that she used to suffer excruciating headaches, pain so bad that she had to hit her head with a spoon continuously just to get some relief.
She used to need two injections a week, but now she doesn’t even have to go to the hospital because of the medication given to her by Hospice Klang and the visits by Dr Yoong and his team.
“I told my friends, but none of them believed me,” she says. “They said: ‘Where in the world are there such good doctors who make house calls?’ They thought I’m imagining things. I had to take a photograph and prove to them that it’s true. I used to suffer terrible pain and nausea for a whole month, unable to eat or sleep.”
According to Dr Yoong, a hospice is about hope.
But it is hope redefined in the context of a patient’s illness. Although a cure is no longer an option for these patients, “what they can hope for is to have no pain, and have friends who come to see them, and hope that they don’t have to keep going to the hospital.”
Hospice Klang started in 1995 as a charitable, non-governmental organisation that offers palliative care and service for free. Depending wholly on public donations, Hospice Klang also provides equipment such as wheelchairs and beds for free. Dr Yoong and his teams make almost 260 home visits in a month.
Some patients face more complicated situations than others. Rohani Rani, 48, who was formerly with the Customs Department, has advanced stage cervical cancer which has spread to her spine. She is bedridden, so her husband, Abdul Rahman Lazim, an employee with Tenaga Nasional Bhd, has to do the housework as well as care for their six-year-old son.
Abdul Rahman leaves their house in Bandar Botanic, Klang, at 1pm every day to go to work in Kapar. He comes home at 5pm to care for his wife and do some housework before going back to work from 8pm till 2am.
“At times, it can get a bit too quiet in the house, and my sister comes by sometimes,” says Abdul Rahman. “If someone new comes to visit, it makes my wife happy.
“She has a problem with her spine because she lies down all the time. It’s difficult for me to move her by myself, so I need someone to help. We move her onto her side, but for only 10 minutes, after which she has to lie on her back.”
It is important for patients such as Rohani to have someone around not just to help with the housework but also to keep her company.
On our visit, Rohani is a little upset, and also drowsy from her medication. Dr Yoong assures her: “Don’t worry, we will bring more friends along next time!”
As a little smile slowly appears on her face, Dr Yoong laughs: “Aha! Is that a smile there?”
“The first thing we did was to give her a haircut,” says Dr Yoong.
“Next, we will find someone to give her a bath.”
Says Tay: “All the pressure is on her husband. It would be good if someone could help them go to the market, or tidy up the house. The husband can then go out and do what he needs to do. Even just a couple of hours would be helpful to them.”
Meanwhile, Rethinammah Petter, 64, of Taman Sentosa, Klang, has advanced breast cancer that has spread to her bones. Initially she could not walk and was confined to a wheelchair. But after being cared for by Hospice Klang, Rethinammah can even go to the bathroom by herself.
Dr Yoong says: “The most important thing is self-care. Once they can do that, we will see whether they can do some other work.”
One step further
According to Dr Yoong, Hospice Klang has 75 volunteers at the moment, but not all are members of the organisation. About 30 are committed volunteers.
Currently, non-medical volunteers are not in contact with the patients and only do administrative or fund-raising work. Only the volunteer drivers interact with the patients, chatting and making friends with them. But all that is about to change with the Helping Hands programme.
“Now we are taking volunteers’ interaction with patients a step further,” says Dr Yoong. “We will have them trained. We are getting them ready to be surrogate home-makers, especially for the female patients.
“Maybe they can give the patient a haircut, or a bath, and cook them a meal. Or just simply tidy up the house. We will be selecting people who have the right attitude, and also patients who want this to happen.”
He estimates that training will take about four to six weeks. There is no need for professional experience, he says. The most important thing is to have a friendly personality and the ability to relate to others.
“You can learn all the other things, but personality is something which is difficult to change,” says Dr Yoong. “We need people who are willing to let their hair down, make others laugh. It’s only through opening up that sharing begins.”
Cecilia Fernandez, 75, a retired nurse who now works for Hospice Klang, concurs: “Some people take to it very easily, some find it very difficult. If you’re already queasy with very sick people, then maybe you’ll need a lot of getting used to.”
The Helping Hands programme already has a group of volunteers ready, consisting mostly of cancer survivors who want to give back. The first programme is set to launch in May.
From the heart
Tan Guat Hong, who was one of the pioneer members of Hospice Klang, recalls that the organisation started with only a table in a room at Hospital Tengku Ampuan Rahimah. From just one patient, today Hospice Klang cares for 160 patients on average.
“Initially it was very difficult, but the doctors were very helpful,” says Tan.
“Whenever we needed any help, we had to wait at the outpatient clinic, and we couldn’t get any dangerous drugs such as morphine. We only really could get things moving with the help of the surgical doctors and the specialists.”
Dr Yoong joined Hospice Klang in 2005, and he has a vision to keep the organisation community-owned.
“My ambition is to have this organisation as a grassroots-owned charity,” he explains.
“We all can contribute a little bit to the charity and have a strong foundation of community service. That’s why the volunteers are important because they represent the community.”
And Hospice Klang definitely needs more medical and non-medical volunteers.
“It’s also good to have people who want to do it from the heart, rather than paid help,” says Dr Yoong.
“The person receiving care will also feel that she or he is wanted, rather than just a person who needs care. The patients have had all the clinical skills that they need, and what they need now is heart. So we need doctors, nurses and volunteers with a heart.”
To volunteer, call Hospice Klang on 03-3324 2125 or 03-3324 4740, or e-mail hpsklang@gmail.com. Visit www.hospiceklang.org for more information.
