By Siti Safura Jaapar and Prof Dr Anthony Cummins
There comes a time when a patient’s condition no longer has any curative treatment, or perhaps the condition was never curable in the first place. However, this does not mean that doctors are going to abdicate all care for this patient. In fact, this is were palliative care comes in.
Palliative care aims to “palliate” or to improve symptoms in people with life-limiting illnesses. Many people, including doctors, tend to think of palliative care as only for cancer patients or hospice patients at the end of their life.
However, palliative care can apply to all long-term illnesses that cannot be cured, like chronic heart failure, chronic obstructive pulmonary disease (COPD), spinal muscular atrophy (SMA), motor neurone disease and multiple sclerosis.
It not only aims to alleviate physical symptoms like pain, but also provide a holistic approach that includes taking care of the patient’s psychosocial and spiritual needs.
While palliative care is still considered a specialised branch of medicine, it should actually be practised by all doctors with patients who require this type of care. This approach will improve the continuity of care for the patient, allowing them better control over their symptoms and better quality of life.
In Malaysia, palliative care is currently delivered in hospitals and in the community through teams of specialist palliative care nurses. Let’s take a look at how palliative care is delivered in other countries.
In Australia, palliative care services have been part of national health policy for many years. The first national palliative care guideline was published by the Australian Association of Hospice and Palliative Care (AAHPC) in 1994.
In 2005, the guideline was incorporated into government policy. The AAHPC disseminated practice guidelines and provided education for doctors in core palliative care knowledge and skills.
They created protocols and training packages for both specialists and non-specialists in palliative care, so that palliative care teams could deliver culturally-sensitive care and end-of-life support.
They have palliative care included in all university-based medical programmes for both undergraduates and postgraduates. In addition, they improved the skills and confidence of the general practitioners (GPs) caring for people with palliative care needs.
Australians can access palliative care services around the clock with formalised links between specialist and non-specialist services. The AAHPC also identified and recommended improved funding models to promote flexibility in meeting the needs of the patient and family/carers.
Ireland has one of the oldest examples of palliative care. Charitable hospice programmes were established in 1879 by the Irish Sisters of Charity (Our Lady’s Hospice, Dublin).
But formal government participation in palliative care only started a century later when the National Cancer Strategy recognised the contribution of palliative care in enhancing the quality of life of cancer patients.
In 1999, the Irish government expanded the role of palliative care teams beyond cancer by establishing the National Advisory Committee on Palliative Care. This established that all patients should be able to access all hospice environments based on need.
In Ireland, each regional health board should have a comprehensive specialist palliative care service with at least one specialist inpatient palliative care unit. In addition, all general hospitals and community services, including GPs, should have formal links with that specialist inpatient palliative care unit.
Through the Palliative Care Competency Framework (2014), core competencies in palliative care were identified at three levels of practice: palliative care approach, general palliative care and specialist palliative care.
Other European Union nations such as Belgium, England, France, Germany, the Netherlands, Poland and Spain vary in their policies on palliative care, partially because of cultural differences and historical factors.
The right to palliative care was established in Belgium, France and Germany, while all EU nations have policies on access to palliative care. Other policies, e.g. on advanced directives, palliative care training, research, opioid laws and volunteering, vary from nation to nation.
Palliative care in Japan has evolved through a number of phases of transformation. The first of these was allowing palliative care to be reimbursed under their national medical insurance scheme.
Other phases included public policy on palliative care, shown by the establishment of the Cancer Control Act, which is the basis for Japan’s Basic Plan to Promote Cancer Control programmes.
Palliative care teams in Japan were established with a full-time physician in charge of improving physical symptoms, another full-time physician for relief of psychological symptoms, a full-time nurse and a pharmacist with experience in palliative care.
By 2010, there were 541 medical institutions with specialised palliative care services, including palliative care teams, palliative care outpatient clinics, palliative care units and community palliative care consultations.
Under its National Strategy for Palliative Care (2011), Singapore ensures that all healthcare professionals have core palliative care knowledge and skills.
Besides the incorporation of palliative care training in all undergraduate and diploma courses for doctors, nurses, and allied health professionals, Singapore established a framework to review curricula to match the required palliative care competencies.
They also organised palliative care by incorporating home hospice services, as well as inpatient hospice services.
Challenges in Malaysia
In Malaysia, the Health Ministry began creating hospital-based specialised palliative care units from the 1990s. In 2005, the ministry acknowledged palliative medicine as a medical subspecialty. By 2010, the Strategic Plan for Palliative Care was introduced to create specialised units in all public state hospitals.
Palliative care services in Malaysia comprise of three main components: in-patient palliative care, consultative palliative care and community palliative care. Each component has its own physicians, medical officers and nurses.
In-patient care is provided to patients with acute deterioration of symptoms requiring stabilisation and patients needing end-of-life care.Many units may require the services of a nurse coordinator who oversees all new referrals and manages all palliative care nursing issues.
For outpatient care, patients are usually referred to a consultant palliative care specialist from another doctor, with a referral letter describing the patient’s history and other relevant information.
Meanwhile, community palliative care is usually provided by non-governmental organisations like Hospis Malaysia, which provide free services that are funded by subscriptions, membership fees, donations and grants.
In contrast to countries like Australia, Ireland and Singapore, GPs in Malaysia have no involvement in delivering palliative care. In both the UK and Ireland, the bulk of day-to-day palliative care is delivered by GPs in liaison with specialist palliative care teams.
An average British or Irish GP would have a number of patients regularly receiving palliative care in their own homes, delivered by the GP. From surveys with patients and families, this model of palliative care delivery is hugely preferable and valued.
The lack of GP involvement in Malaysian palliative care delivery is a huge deficiency in an otherwise well-delivered community palliative care service. Malaysia needs GPs as an essential component of delivery of quality community palliative care.
In addition, palliative care needs to be part of the curriculum for undergraduate medical students to equip them with basic knowledge of this type of care. Another challenge in the Malaysian palliative care scene is the low number of children with life-limiting conditions who are receiving palliative care.
Given the known prevalence of major life-limiting conditions in childhood, the actual number of children seen at community and hospital palliative care services is significantly lower than expected.
It is possible that many children who need palliative care are not receiving it, leading to a lower quality of life for them.