What is palliative care?
The article below appeared in the September 15 issue of Health with Perdana, a regular column in The Star by Perdana University faculty members. This week’s article is contributed by Ms. Siti Safura Jaapar, Perdana University PhD in Bioinformatics student & Founding President of Spinal Muscular Atrophy Malaysia (SMAM) and Prof. Dr. Anthony Cummins MB BCh BAO MRCGP, Foundation Professor of Family Medicine and RCSI Perdana University of Medicine & Health Sciences
Palliative care aims to “palliate” or to improve symptoms in people with life-limiting illnesses. Though many people, including doctors, think of palliative care as only cancer care or terminal care to patients in their last days of life in a hospice, this is not what it is. Palliative care is care for a range of illnesses that are long-term conditions which cannot be cured but with which sufferers live with on a daily basis. It focuses on offering relief from the symptoms of these illnesses.
Which are these life-limiting conditions?
Cancer certainly is one of them but by no means the only one. They also include non-cancer conditions such as chronic heart failure, COPD (Chronic Obstructive Pulmonary Disease), SMA (Spinal Muscular Atrophy, MND (Motor Neurone Disease) and MS (Multiple Sclerosis) as well as others.
Palliative care is still thought of as a specialist branch of medicine. But that should not be so. What is needed in Malaysia is a change of mindset: the core competencies of the palliative care approach should be adopted by all doctors who provide healthcare to patients suffering from life-limiting conditions such as those listed above. This approach lessens the severity of symptoms such as pain, breathlessness, nausea and others and thus improves sufferers’ quality of life.
Isn’t that what we as individuals would wish for ourselves should we develop an incurable life-changing condition?
Palliative care does not only serve to improve physical symptoms such as pain but overall to provide a holistic approach embracing also psychosocial and spiritual aspects of the care of the patient.
Does it really improve patients’ quality of life?
What evidence exists to show this?
In a randomised controlled trial of a palliative approach versus standard cancer care in US patients with lung cancer which had already spread, the patients receiving the palliative approach lad less aggressive treatments but an improved survival rate plus an improved quality of life with less depression of mood than those receiving standard cancer care (N Engl J Med 2010; 363:733-742 doi: 10.1056/NEJMoa1000678).
Palliative care in Malaysia is delivered both from hospitals e.g. Hospital Selayang and in the community through teams of Specialist Palliative Care Nurses e.g. from Hospis Malaysia in Cheras.
Palliative care in other countries
In Australia, palliative care services have been part of national health policy for more many years. As early as 1994, The Australian Association of Hospice and Palliative Care (AAHPC https://palliativecare.org.au/) published the first national palliative care guideline. In 2005 it 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 specialists in palliative care and non-specialists, so that palliative care teams could deliver culturally-sensitive palliative care and end-of-life support. They included palliative care in all university-based medical programmes, both undergraduates and postgraduate. 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 24/7 with formalised links between specialist and non-specialist services. They 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 100 years later when the National Cancer Strategy (NCS) 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 (NACPC). It 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), they identified core competencies in palliative care at 3 levels of practice (Palliative Care Approach, General Palliative Care and Specialist Palliative Care.
Other EU countries
Other European nations such as Belgium, England, France, Germany, the Netherlands, Poland and Spain vary in their policy 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 the recognition of the cost of care delivered by the palliative care unit as eligible for reimbursement under the medical insurance scheme. Other phases included public policy on palliative care, shown by the establishment of the Cancer Control Act, the formulation of the Basic Plan to Promote Cancer Control Programmes. It began in 1981 with the opening of a ward at Seirei Mikatahara Hospital, Hamamatsu City, Shizuoka Prefecture, the first inpatient palliative care facility. Palliative care teams in Japan were established with a full-time physician in charge of improving physical symptom, 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 also established a framework to review curricula to match the required palliative care competencies. They also organised palliative care incorporating home hospice services as well as inpatient hospice services.
Palliative care in Malaysia
In Malaysia, the Ministry of Health (NOH) began creating hospital-based specialised palliative care units from 1990s. In 2005 MOH acknowledged palliative medicine as a medical sub-specialty. By 2010, the Strategic Plan for Palliative Care was introduced to create specialised units in all government state hospitals. Palliative Care Services available in Malaysia, briefly comprise of 3 main components namely 1) In-patient palliative care; 2) Consultative palliative care; 3) Community palliative care. Each element has its own physicians, medical officers and nurses.
In-patient care is provided to patients with acute deterioration of symptoms requiring stabilisation and also for those needing end-of-life care. Others require temporary stay to relieve specific symptoms such as worsening breathlessness due to fluid collection in the chest. This fluid can be removed by a doctor (aspiration) giving the patient an improvement in breathlessness with a better quality of daily living. All referrals to consultant palliative care specialists must be made via referral letter describing the patient’s history and other relevant information.
Many units may require the services of a nurse coordinator who oversees all new referrals and manages all palliative care nursing issues. There are a number of Community Palliative Care Services (PCS) all of which are Non-Governmental Organisations (NGOs) providing free services to patients. Their funding comes from subscriptions, membership fees, donations and grants. As an example there is Hospis Malaysia based in Cheras.
Challenges and future plans
In marked contrast to the delivery of palliative care elsewhere in the world e.g. UK and Ireland, GPs (General Practitioners) in Malaysia have no involvement. In both UK and Ireland, the bulk of day-to-day palliative care is delivered by GPs in liaison with specialist palliative care teams. An average UK 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. By contrast, the lack of GP involvement in Malaysian palliative care delivery is a huge deficiency in an otherwise well-delivered community service such as Hospis Malaysia.
Discussions are proposed between The Academy of Family Physicians of Malaysia and Hospis Malaysia brokered by the Department of Family Medicine at Royal College of Surgeons in Ireland-Perdana University of Medicine & Health Sciences (RCSI Perdana) to identify how this challenge can be met. Malaysia needs GPs as an essential component of delivery of quality community palliative care.
Allied to this challenge is the provision of palliative care teaching to undergraduate medical students. At Perdana University the Department of Family Medicine has developed the curriculum for palliative care, delivered in year 4 of the MB BCh BAO 5-year Medical Degree Programme, in conjunction with home visits to patients at end-of-life with Hospis Malaysia’s community nurse team.
We have since progressed to introducing palliative care to year 1 students through campus-based healthcare symposia in which a Hospis Malaysia doctor and a patient meet our students for an open discussion about the experience of having a life-limiting condition. We also, in collaboration with Hospis Malaysia, off our Year 4 students a summer elective posting at Hospis Malaysia.
One other challenge in Malaysian palliative care delivery 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 numbers of children seen at community and hospital palliative care services is significantly lower than expected. Who is managing these children? Why are they not being referred to palliative care?
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