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 "Palliative Care"
and
"Hospice Care"

Working Hand-in-Hand

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. 

In Malaysia - inpatient, consultative and outpatient palliative care services are available in many hospital setting - usually led by a Palliative Medicine Specialist with a team of multidisciplinary personnel i.e. trained medical officers, nurses and allied health professionals. You can find out more about the nearest hospital with these teams here. 

There are also Community Palliative Care teams that can help to deliver palliative care in the community. This is because progressive, life-limiting illnesses change over time and patients will require constant follow ups. Most of the community teams are called "Hospices" and "Palliative Care Associations". The teams usually comprised of trained community nurses led by part-time/full-time doctors. Since 2016, the Ministry of Health (MOH) Malaysia, expanded the Domiciliary Services provided by certain local Klinik Kesihatan to also include the Community Palliative Care scope to improve services where the needs are not met by NGOs. This service is still developing and is currently available at selected sites. 

MHPCC is the umbrella organisation for the NGO Community Palliative Care NGOs to help promote and advocate for palliative care and hospices in Malaysia. You can learn more about our members here. In addition, we also open our membership to individuals who are working within the field but are not affiliated with any of the NGO Hospices/Palliative Care Associations. We provide a common platform where all of us are all able to work together to improve palliative care services in Malaysia. Through MHPCC, we are also able to provide more training and educational sessions for other healthcare professionals who are providing palliative care in the country - be it in the hospital or community setting.

HOSPICE CARE
IN MALAYSIA

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.


Most of these services involve patients and caregivers receiving periodical, scheduled home visits to assess symptoms control and caregiver training (typically once every 2 - 4 weeks). 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 provide community palliative care/hospice home care services. One hospice organisation with in-patient stand-alone hospice units, which located in Pulau Pinang.
 

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FUNDING
OF
HOSPICE SERVICES

As NGO’s, most of the hospices 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.

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