The EDPCC centre is located at the Kampung Tawas Klinik Komuniti. — Photos: RONNIE CHIN/The Star
Home palliative care group treats patients and family members who tend to them
PALLIATIVE care in Perak has gone one step further with the setting up of the first excellent domiciliary palliative care centre (EDPCC) in the country.
The centre provides care for patients in the comfort of their own home instead of being admitted to a hospital, where most terminally ill patients are given palliative care now.
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It provides high-quality domiciliary palliative care services to patients and families afflicted by life-limiting illnesses and to improve their quality of life.
Although it now caters only for patients living in the Kinta district, the Perak Health Department plans to open up centres in Kuala Kangsar and Taiping after assessing the success of the first EDPCC.
The centre run by four medical personnel started operating in October last year and more than 60 patients, including children, have been assisted since it began.
Compassionate group: Since the centre started last year, the team has assisted over 50 palliative cases.— RONNIE CHIN/The Star
The EDPCC is the brainchild of Dr Albert Yong Kui Choon, who is a Family Medicine specialist working at Klinik Kesihatan Chemor.
He said the goal of palliative care was to provide a support system to help patients live actively until their final moments.
“Palliative care offers physical, psychosocial, spiritual and practical support to people with terminal illnesses to make sure patients are comfortable and not aiming for a cure.
“A study on the needs of palliative care in Malaysia was conducted and it showed that there would be a growth of 240%, from 100,000 cases in 2014 to 240,000 cases by 2030,” he said.
While palliative care is often related to cancer patients, Dr Yong said about two-thirds of patients involved are non-cancer patients, including those with heart or kidney failure, stroke, Alzheimer’s, dementia, AIDS and other incurable diseases.
“Local surveys showed that a majority of patients with life- limiting illnesses preferred to receive the main bulk of care at home as well as spend their last days there,” he said, adding that these wishes would not be possible to achieve without strong community palliative care services.
EDPCC team
Dr Yong told StarMetro that the main team on the ground comprised Dr P. Pothanantha Raja, staff nurse Samsinar Samsudin and medical assistant W. Jagathismary.
An office was set up for the centre on the second floor of the Klinik Komuniti Kampung Tawas in Ipoh, he said.
“It was empty so we cleaned it and allocated some budget for minor renovations.”
He said the team was blessed with much support from local non-governmental organisations and philanthropists.
“Tzu Chi Foundation donated chairs, tables and shelves, which enabled us to set up our office, and some medical equipment such as oxygen concentrators.
“Teratai Foundation contributed a computer, printer, projector and meeting table, while Ericsen Foundation pledged a second-hand car.
“Hospital Raja Permaisuri Bainun’s palliative care unit contributed wheelchairs,” he said, adding that a member from his church group also donated curtains for the office.
Dr Pothanantha checking on Kum Wah at his house in Tanjung Rambutan.
As he was stationed at the Chemor Health Clinic, Dr Yong said he would go to EDPCC weekly for case discussions and visit patients with complex needs while the team would visit the patients every weekday without fail.
“We work closely with palliative care physicians, teams in the palliative care unit of Hospital Raja Permaisuri Bainun and allied health professionals such as dieticians, occupational therapists, physiotherapists and paediatricians too to address all the needs of patients,” he said.
“Since there are only three of them, the most the team can cover are three patients a day.
“While it may sound like an easy task, the job scope is beyond just checking the patients, as it also includes evaluations of caretakers and family members,” he added.
Dr Yong said they used a comprehensive clerking sheet to assess the four important domains of palliative care – physical, psychological, social and spiritual aspects of a patient and family.
They also use the Integrated Palliative Care Outcome Scale (IPOS) to identify distressing symptoms and other needs to take timely measures, he said.
Dr Yong says there is an increasing number of patients needing community palliative care.
He further said that the team introduced a questionnaire as well to gauge the satisfaction of families with the services provided for future improvement.
“We are collecting a lot of data and we hope to analyse and publish our work and embark on research in the near future so that we can help policymakers to plan and implement community palliative care services in the country,” he added.
Dr Pothanantha also came up with an online version of the IPOS, where patients and caregivers could use their mobile phones to answer questions pertaining to their symptoms and needs and send the form back to them via email or WhatsApp.
“In this way, we can have a pre-visit assessment and get ready the medications and other medical equipment to palliate the symptoms and support patients.
“As we are holistically helping the patient, we also want to support the family members and caregivers,” he said.
Dr Yong said caregivers were screened for depression and anxiety, and provided counselling as well as respite care.
Dr Pothanantha says the team also wants to support family members and caregivers.
They are also asked to provide feedback on the services for patients and carers.
“Among the questions asked is how effective is the palliative care team in managing patient’s symptoms,” he said.
Since the centre first started, Dr Yong said the team had conducted over 135 home visits, from Chemor all the way to Tronoh and Tanjung Tualang.
“When a case is referred to us, we will visit the patients at their home within three working days and the team will conduct a comprehensive assessment, provide symptom relief and address all needs of the patients and their families.
“We monitor our work through the monthly report to the district health office, which includes whether we can visit the patients within three working days upon referral, assessing pain and other symptoms at every visit, the number of patients needing readmission, and the percentage of patients who died at home.
Jagathismary says many families are thankful for the team visiting their homes to provide care.
“We conducted the first home visits for 83.3% of the cases referred to us.
“We did not achieve 100% as four families requested for the first home visit to be done at a later date, while another 13 terminal patients passed away before we could visit them,” he said.
He added that since EDPCC’s inception in October, they had helped 71.4% of patients to spend their last days at home while 28.5% were admitted to hospital for various reasons, including being unable to cope at home.
Dr Yong said the team also worked with other non-governmental groups such as Tzu Chi Perak and local religious bodies to provide respite care.
As there are only three members on the ground now, Dr Yong hoped to have another team comprising a doctor, medical assistant and nurse.
Help for caregivers
Dr Pothanantha is glad to be part of the EDPCC team, as they get to provide help to both patients and the caregivers.
“Although our visits are on checking the patients’ conditions and symptoms, we often lend our ears to the caregivers who share their ups and downs about taking care of their ill family member.
“A majority of the cases referred to us are those from B40 groups. We sometimes get them groceries, diapers and milk powder,” he said.
He highlighted that before a patient was referred to the centre, the referring doctor would explain in detail the patient’s condition to the family, but some might not understand it fully.
“So the first thing we do is to read the referral letters carefully and check on the medicines given to the patients.
Samsinar says she often spends time listening to caregivers’ personal stories.
“We also need to conduct a holistic assessment, including assessing whether a patient or family knows about the diagnosis and prognosis before we discuss further on patient’s condition, the aim of care and the treatment plan,” he added.
Dr Pothanantha said the team had always been able to communicate with a patient’s family well.
“Among the assessment conducted is to find the sole caretakers and the breadwinner of the family.
“We had a case where a woman was taking care of her Down Syndrome niece and she complained about difficulties carrying her around.
“When we checked, we discovered that the woman had a knee problem so we referred her to our physiotherapist.
“She received treatment in the comfort of her home without having to be away from the child she is taking care of.
“It is important to make sure that the caregiver is in good health because they are our eyes and ears, monitoring the patients every day,” he added.
Samsinar (right) and Jagathismary checking on a young patient at her house in Chemor.
Samsinar said she often spent time listening to caregivers’ personal stories.
“After assisting the patients, such as checking their wounds (if any), diets and other symptoms, we would ask about the well- being of the caregivers.
“Some caregivers quit their jobs just to take care of a sick family member, so we want to make sure that they are taken care of too.
“I remember a dying patient whose family members were crying as they couldn’t handle the thought of losing him.
“I hugged them and provided supportive words.
“All of us are human after all, we do need support.
“As we have many cases to attend to, we often call and check on them too,” she said.
Jagathismary said there were cases where family members needed extra time to accept the fate of the patients.
“We had a case where a family refused our assistance, but after we explained what we did and that the service was free, they gave the green light.
“Given their situation, we just let them give their point of view before we explain why we are visiting their house.
“Sometimes, they would ask about medicines or medical tips they learn on the Internet and we have no problems answering that.
“All of us want the best for the patients,” she said.
