A palliative care programme in Malaysia
Keywords: palliative care, volunteers, service development
In 1992, the Department of Surgery at Queen Elizabeth Hospital in Kota Kinabalu found they were operating on a large number of patients with advanced cancer. A lot of time, effort, and money were being spent on patients undergoing major surgery for advanced cancer. After surgery, they were followed up with radiotherapy and chemotherapy, yet even after treatment, the disease recurred in about 70% of patients. When these patients came back with recurrent disease they were in pain and no help was available. They were sent home with their families to die. We asked ourselves whether it was right to operate on these patients when there was no continuity of care - so much effort and expense resulted in such short term benefits followed by frustration and suffering for patients and families when the disease recurred. Towards the latter part of 1992, the Surgical Department organized a statewide 'Early detection of cancer' campaign in collaboration with Sabah Cancer Society, a pre-existing nongovernmental organization for the prevention and early detection of cancer. Exhibitions on the signs and symptoms of early cancer and public forums on the need to develop palliative care for advanced cancer patients in the community were held in all the major towns of Sabah.
Once the community was primed, a home care programme was developed under the banner of the Sabah Cancer Society. An intensive public awareness campaign was conducted using the press, public forums, talks and seminars. A nurse coordinator was appointed and the hospice at home programme started functioning in 1993. The nurse coordinator went to Singapore and Penang to study home hospice programmes there. Volunteers were recruited and trained. Overseas experts and pioneers in palliative care came to share their experiences, offer training and provide inspiration.
Volunteers formed the driving force behind the development of palliative care in Sabah. There are people in every society who want to help and to do good, but they do not know how to get involved in volunteer work. At the same time, there are people who need help and do not know where to get it. In Kota Kinabalu, our aim was to mobilize willing volunteers from the community, train them, give them confidence, back them up and help them capitalize on their own good will and good intentions. We began by going to service clubs and other voluntary organizations and talking to them about the planned hospice programme and the need for volunteers. As a result of this effort, over 100 volunteers registered. They underwent a 2-day course consisting of basic knowledge about cancer, basic nursing, communication skills, etc. About 40 registrants opted to get actively involved. These volunteers were divided into two groups - those who wanted to be directly involved with the patient and family and those who wanted to help by doing odd jobs like transportation, raising funds, office work, etc. The volunteers included five doctors and eight nurses.
Since inception, the home programme was supported by the Surgical Department at Queen Elizabeth Hospital. All the home care patients were registered at Queen Elizabeth Hospital to provide backup and admission facility. The programme started with three to four patients, but the numbers grew rapidly, and a second nurse was appointed to help out.
When they were discharged from the hospital, patients with advanced, incurable cancers who lived in and around Kota Kinabalu were referred to the programme. The nurse coordinator visited the patient at home for the initial assessment. The primary caregiver at home was trained to care for the patient, administer medication, etc. Three categories of volunteers were involved in the care of the patients at home.
Volunteer doctors made home visits with the nurse coordinator whenever she needed a doctor's opinion. Volunteer nurses helped the nurse coordinator and often covered for her during weekends. Lay volunteers provided companionship for patients, gave respite to caregivers, helped with bathing, gave hair cuts and massages, and became friends with the patient, primary caregiver and family. Lay volunteers reported to the nurse coordinator and never interfered with medical management. Volunteers were matched with patients taking into consideration the patient's religion, race, language and the logistics.
Patients were also able to borrow necessary equipment - specialized beds, wheel chairs, commodes, syringe pumps, suction machines, oxygen concentrators, etc. Patients were reviewed weekly in the Department of Surgery at Queen Elizabeth Hospital by the author.
As the home care programme became established in the community, the need became obvious for a palliative care unit in the general hospital with the following objectives:
· To provide a place for patients who, for various reasons, do not wish to die at home.
· To provide a place where patients could be directly admitted to a specialized unit whenever required. When these patients were admitted to a general ward, they were often neglected.
· To provide back up to the home programme.
· To provide the highest standard of palliative medical and nursing care both in the unit and in the home care programme.
· To provide a training centre for palliative care medicine.
The first Palliative Care Unit in Malaysia was set up in January 1995, at Queen Elizabeth Hospital, Kota Kinabalu, under the Department of Surgery and totally funded by the Ministry of Health. The unit started with four beds, increased to ten beds in January of 1996, and gradually became independent in staffing and management. This unit now has 12 beds. The trained staff consists of one sister, eight staff nurses, three assistant nurses, and three attendants as well as two full time medical officers and the author as the honorary consultant.
As soon as it was established, the unit developed a palliative care support group, which took over the home care programme from the Sabah Cancer Society. In order to concentrate solely on palliative care, all the volunteers and others involved in palliative care moved over to this support group. In 1998, the group sought and gained registration with the Registrar of Societies and became the Palliative Care Association of Kota Kinabalu.
After the Palliative Care Unit at Queen Elizabeth Hospital was set up, it became established practice for departments in the hospital to refer all patients whose disease was considered incurable, to the unit. Referral guidelines were made available in all the wards, and a flow chart was drawn up to guide them.
The close link between the home programme and the palliative care unit in a teaching hospital helps to maintain standards and a teaching atmosphere. All nursing students are exposed to palliative care in the unit.
Most cancer patients in the state came to Kota Kinabalu as it was the only place where radiotherapy and oncological services are available. Patients from the private sector or from other hospitals were directly referred either to the unit or the home programme by their doctors. All patients in the home programme were registered with the unit making them eligible for admission at any time and for free medication supplied by the Ministry of Health.
The Palliative Care Unit at Queen Elizabeth Hospital is collaboration between the Ministry of Health and the community to provide an essential service. The Ministry of Health has accepted Kota Kinabalu as a role model and is trying to develop such services in all the states. Unfortunately, progress has been slow. Most home programmes work independently, but units are being set up in the general hospitals and there is hope that they will soon collaborate with home programmes.
There is continuity of service after office hours. Home care patients are colour coded depending on how sick they are, and the nurse in the unit knows about them. The nurse can offer advice and support on the phone or can admit the patient to the unit if conditions warrant. The patient and the family are assured that a bed will be available whenever required, and the backup offered by the unit adds to the confidence of the patient and family. Home nurses have the support of the specialized unit and this improves the standard of delivery of palliative care.
The Palliative Care Unit and the Palliative Care Association have been the impetus for the development of palliative care throughout the state and in the country. There are functioning palliative care units in the hospitals of Tawau and Sandakan as well as in all the major district hospitals. The communities in both Tawau and Sandakan have responded by establishing independent home programmes. Most district hospitals where it is likely there will be a doctor and nurse trained in palliative care.
The Palliative Care Unit and Home Care Programme run by the Palliative Care Association was recognized by the Malaysian Ministry of Health as a model unit, and the Ministry is trying to set up similar units in hospitals all over the country. Clinical attachments, a 7-10-day intensive training programme covering all aspects of palliative care, was conducted in Kota Kinabalu and has benefited many doctors, nurses, and other volunteers from all over Malaysia and has inspired them to develop this service in their own states. The Palliative Care Association has held workshops, seminars, and international conferences to promote palliative care both in the state and country.
The Palliative Care Association is run by volunteers. The state government allotted two adjacent bungalows near the general hospital for use of the organization, and these were refurbished to house offices, classrooms, a store for home care equipment, and a day care centre. This complex is named the Rumah PCA and has become a centre for the development and delivery of palliative care.
The Rumah PCA has 70 volunteers and employs three full time nurse coordinators, an administrative assistant, and a part time staff, providing home care for 40-50 patients at a time within a 30 km radius. It runs a weekly day care facility. Volunteers run this service. They collect patients from their homes and provide massage therapy, aroma therapy, portrait painting, food and games.
The association publishes an in-house quarterly newsletter, organizes social evenings for patients, staff, and volunteers, conducts bereavement fellowship once every 6 months. The Palliative Care Association Kota Kinabalu is an active member of the Malaysian Hospice Council and the Asia Pacific Hospice Network.
All services provided by the Palliative Care Association are free. Palliative Care Association volunteers raise funds in the community. Besides donations, the main source of funding is a charity dinner concert held at a premier hotel and featuring a popular music group. The Ministry of Health, and service clubs like Rotary and Lions and other organizations also help with financial support.
Recruitment of dedicated and committed volunteers is not an easy task, but they are there in every community. We mobilized a good number, provided basic training and gave them support. With experience, they developed the confidence to carry out their tasks. We maintain a continuing education programme. The volunteers value the friendship and kinship they experience through their association with palliative care.
At times there have been frustrations, even though the utmost care is taken in screening volunteers. Volunteers help, but a core of reliable paid staff is essential to sustaining the programme. Depending only on volunteers can mean inconsistency in numbers at a given project, the home programme's operation is not totally dependent on volunteers. There three paid staff nurses and administrative staff.
The Palliative Care Programme in Kota Kinabalu has a home care service developed and run by the community, with the backup inpatient support of a palliative care unit. We provide care from hospital to home for patients with advanced, incurable cancers. This model has worked well for us. Each state, country, and society has to develop its own model based on available health services, community involvement and cultural factors. Access to palliative care is the right of every human being with advanced, incurable disease and it must be as available as any other branch of essential medical care.