In Thailand, we mostly take care of terminally ill patients with what is called “sustaining” care in hospitals. In fact, most of these patients would prefer to stay at home where things are familiar rather than in a hospital. But Thailand does not have the necessary conditions in place, apart from some informal arrangements, to make this possible.
Seeing how our neighbours Singapore and Malaysia approach this issue might help us understand it better and acknowledge the importance of home-based care for terminally ill patients. Home-based care can greatly improve the quality of life of patients as well as their family members. It may also reduce physical pain and improve a patient’s mental condition. While home-based care doesn’t mean patients will live longer, their passing is likely to be more peaceful than it would in the institutional surroundings of a hospital.
Singapore and Malaysia have long recognised the importance of home-based care for terminally ill patients, providing “home hospice” services for more than 25 years. Services are provided by charities in those two countries free of charge or for very little, reducing the financial burden on patients and their families. While the services provided in the two countries are quite similar, the financial and human resource support they receive varies.
HCA Hospice Care (HCA) is one of eight charities in Singapore providing hospice care for terminally ill patients. Founded in 1989, HCA is regarded a part of Intermediate and Long-Term Care (ILTC) Services under the supervision of the Agency for Integrated Care (AIC) which was set up by Singapore’s Ministry of Health. It provides three kinds of services, including Home Hospice, Day Hospice and services for youth up to 19 years old.
Hospis Malaysia is also a charity run by NGOs. It was founded in 1991 and provides care to patients in Kuala Lumpur free of charge. Hospis Malaysia’s service focuses on homebased hospice care. Every Tuesday, patients are able to visit the charity’s centre to talk to other patients. That gives caregivers at home a chance to rest.
HCA and Hospis Malaysia have similar regulations regarding patient eligibility. They include those suffering from end-stage cancer, illnesses that require limited care throughout the patient’s life, or those told by doctors that they have only one year left to live.
Those patients who want to receive services from the centre are required to submit a doctor’s certificate. Within a couple of days, the centres arrange for a doctor and nurse to visit them at home to make a diagnosis. Information gathered from this visit is used to set up a visiting schedule for the individual patient.
Patients are asked about their health and mental condition, as are their families and caregivers. In the event that a nurse is unaccompanied by a doctor and there are specific questions that need the opinion of a doctor, they will contact the doctors at the centre immediately. Also if a patient needs to take medicine that is available, the nurse must still consult with the doctor on the phone before giving it to the patient.
After the visit, the nurse will discuss the case and follow up. Both charities lend medical equipment to patients.
We joined a field visit conducted by Hospis Malaysia to seven terminally ill cancer patients. Mostly, they came from middle-income families and lived with caregivers (spouses, children or a maid). Only one patient had no family and lived at a home provided by a charity run by a temple. The patients appeared to be confident about staying at home while having nurses visit them. The patients are also given a hotline number to contact a nurse at any time in the event of an emergency.
In Singapore, the state plays a big role in providing support for hospice care. HCA receives subsidies directly for each patient. Based on the family’s income, the subsidies can cover up to 80% of total expenses. HCA pays the remaining 20% out of its income from donations and fundraising.
Donors may deduct personal income tax of as much as 250% of the donation. The government also gives 200 Singapore dollars (about 5,248 baht) per year to any family attending a caring course. An important element of hospice care in Singapore is that social workers provide assistance at every step of the way, right from the beginning, including consulting patients and families as well as managing financial support.
Hospis Malaysia mainly gets financial support from the private sector and income from organising activities such as marathon runs. It also receives donations in the form of medicine from the public and other patients that it distributes to the patients its its programme. Hospis Malaysia has a good working system and management from income planning, hiring doctors and nurses, medicine management, patient follow-ups and worker assessment.
The key idea of Hospis Malaysia’s management team and organisation is professionalism. A generous spirit is not enough to run an organisation. It requires efficiency too. Its performance must be both visible and accountable so that donors are willing to continue their support. The past 25 years have revealed ample evidence of the achievements of this organisation.
As we have noted, in Thailand hospice care for terminally ill patients does not exist. But it is never too late to set up this system. Thailand has the advantage of being able to learn from other countries’ experiences. We can choose a system and a platform that suits our own environment. A charity providing home hospice care is an option for Thailand.
Worawan Chandoevwit, PhD, is a lecturer at Faculty of Economics, Khon Kaen University, and an adviser of Thailand Development Research Institute. Yos Vajragupta is a TDRI researcher.