THE NATIONAL VOICE FOR HOSPICE AND PALLIATIVE CARE MOVEMENT IN MALAYSIA
Hospice care began in Malaysia in early 1992 as a grassroots movement with home programmes starting in Kuala Lumpur and Penang. Since then an additional seventeen services have been set up in other towns of Malaysia.
Features common to these home programmes are:
Open to anyone with an advanced illness, usually cancer;
It is a free service;
There must be a primary carer at home;
Service is provided by trained nurses as well as volunteer doctors, nurses and other non-health professionals (three services have full-time doctors). Except for one service it is not a twenty-four-hour service;
Dependent on hospitals (usually public) to manage the patient when care is no longer possible at home or when the primary carer at home needs respite while inpatient care is provided by one service as well;
Some programmes get medications from public hospitals by registering a patient at the hospital;
All are very dependent on funding from public donations and fundraising.
The formal health care system in Malaysia is institution based. Anyone requiring care has to go to a hospital or a clinic. Care is not extended to the homes of patients even though much care can be given at home at reduced costs both to the family as well as the society.
The pioneers of hospice care were aware that though some care was available to patients with advanced illnesses in hospitals, none was on hand at home except for the support of their families. Fortunately, there is still a tradition of care by the family which is enhanced by the knowledge and skills of the hospice home care team. However, it must be pointed out that this tradition is not universal in Malaysia and is already being eroded as the country develops and modernizes.
In-patient hospice care began as a local initiative at the Queen Elizabeth Hospital, Kota Kinabalu in 1995. In 1998 the Ministry of Health decided to offer palliative or hospice care at its large hospitals by setting up Palliative Care Units or Palliative Care Teams. The former had dedicated beds and staff while the latter was a consultancy.
At the NGO level two eight bedded hospice hospitals were set up in Penang in 2001. One of these two has a hospice home programme as well. Thus for this hospice service, continuity of care is possible – the patient can be cared for at home and when necessary, admitted to the hospice hospital for a few days.
Such continuing care is already in place in towns where there are hospice home programmes run by an NGO and when the public hospital has a Palliative Care Unit. However it needs to be noted that most towns have neither and a few have one or the other only so that continuing care is not possible.
Unfortunately, one of the NGOs had to suspend its in-patient service in May 2009 due to financial constraints and concentrate on its home programme. On the other hand the second NGO service has expended into a 16-bedded facility.
As NGO’s we have had to rely on public donations and fundraising projects to finance our community services. In recent years raising money has become increasingly difficult. In addition, grants are available from the Ministry of Health on the annual application.