THE NATIONAL VOICE FOR HOSPICE AND PALLIATIVE CARE MOVEMENT IN MALAYSIA
Is "Palliative Care"
as "Hospice Care"?
In certain countries, "Hospice" is used to distinguish home care services from hospital services, or volunteer-based services provided in the community from services provided by a specialised team in a hospital (Palliative Care Department/Unit). However, the principles of care are and should be the same. The "modern hospice movement" started in the 60's in England, and in 1973, the term "Palliative Care" was coined in Canada. "Palliative Care" is the preferred term for healthcare professionals particularly since it became a medical specialty in many countries. Hospice care is often related to a prognosis of six months or less and focused on care at the end of life, while palliative care patient at any time, at any stage of illness.
HISTORY & DEVELOPMENT OF COMMUNITY HOSPICE CARE IN MALAYSIA
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.
Hospice care began in Malaysia in early 1992 as a grassroots movement with home programmes starting in Kuala Lumpur and Penang. Since then additional community hospice services have been set up in other towns of Malaysia.
Features common to these hospice home care programmes are:
Open to anyone with an advanced illness, such as cancer
It is a free service
There must be a primary carer at home
Service is provided by trained nurses, full-time/volunteer doctors, allied health professionals and other lay volunteers.
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
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.
HISTORY & DEVELOPMENT OF IN-PATIENT HOSPICE CARE IN MALAYSIA
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.
Initially 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 institution for a few days.
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.
CURRENT HOSPICES SERVICES AVAILABLE IN MALAYSIA
To date, there is a total of 30 NGO hospice organizations functioning independently throughout the country in every state except Perlis. The majority of these organisations (28) provide community palliative care/hospice home care services. Two (2) hospice organisations with in-patient stand-alone hospice units, which located in Pulau Pinang and Johor.
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.