| Abstract
Universally, public awareness of the possibilities and scope of palliative care needs to be further increased. Facilities for treatment and palliative care are being developed further. Networking between the public and private sectors and non-governmental organizations is being encouraged. Training of skilled staff in the treatment of cancer is highlighted in this paper. By promoting good palliative care, the issue of euthanasia which is alien to our culture and multi-religious society will not arise. Introduction
Palliative care is the active total care of patients whose disease is not responsive to curative treatment. Palliative care affirms life and regards dying as a normal process, neither hastens nor postpones death, provides relief from pain and other distressing symptoms, integrates the psychological and spiritual aspects of patient care, enables patients to live as actively as possible until death, enables the family to cope during the patient's illness and in their own bereavement (World Health Organization 1990).
This definition is useful as there are many events happening around the world with debates and confusion regarding to end-of-life issues. As an example, withholding chemotherapy from a patient in whom toxicity is likely to outweigh the benefits of chemotherapy has been misunderstood by some to be passive euthanasia. It is important that the dignity and sanctity of every human life be preserved and upheld even in terminal disease. Everyone in society, including family members, medical staff and legislators, must be aware of the implications of our philosophy and attitudes towards the care of patients with terminal illness and not be distracted by arguments which seem to promote euthanasia as a solution to the problem of such illnesses. Burden of Cancer
Adequate attention has to be devoted towards palliative care, especially in societies where the majority of patients present with advanced disease1. Cancer is a major health problem all over the world, including Malaysia. The disease is the fourth leading cause of death among medically certified deaths in Malaysia2. As many patients present at a late stage of their disease, palliative care is an important area that needs to be further developed.
Efforts at improving palliative care services in Malaysia are being actively undertaken by governmental and non-governmental agencies. Home care nursing provided by some institutions serves to enhance continuity of care of terminally ill patients after discharge from hospital.
Palliative care programs with palliative care units and / or hospice home care should include the training of doctors, nurses, medical assistants and lay volunteers in the palliative care of terminally ill cancer patients so that continuity of care of patients after their discharge can be carried out by medical personnel in the peripheral hospitals who have been trained in basic cancer care. Treatment is facilitated by adequate communication between the specialist units and peripheral health facilities.
There is still room for improvement in palliative care services in many parts of the world. For example, despite the availability of aqueous morphine, its usage in patients with advanced cancer is hampered by lack of knowledge of palliative care by the public and a proportion of medical staff. Several local medical schools, postgraduate courses in Family Medicine and nursing colleges have introduced palliative care as part of their teaching programs. Workshops and seminars are held, while palliative care teams in hospitals are being developed. Several hospice groups in Malaysia have begun programmes focusing on care in the home of the patient. The number of patients being cared for by such organisations have steadily risen due to the greater awareness of the role of palliative care in patients with advanced cancer. For instance, from 1992 to 2001, the number of patients seen by one non-governmental organisation has increased from 44 to more than 800 per year3. One of the strengths of hospice or palliative care groups is the ability to provide counseling for the patient and family.
The quality and equity of care, as well as the availability and accessibility of palliative care are issues which need to be continually addressed. Palliative Care Units have been set up in several government hospitals, eg in Queen Elizabeth Hospital in the state of Sabah in 1995. The advantage of having a hospital-based Palliative Care Unit is that large numbers of cancer patients will get palliative care as the majority of cancer patients are treated at public hospitals. Such a Palliative Care Unit provides a specialised short term inpatient unit for the comprehensive care of advanced cancer patients, including good symptom control, temporary respite for the primary carer and the family, trains health professionals in palliative care, recruits volunteers for the support of patients and their families, and supports hospice home programmes.
Some institutional hospices may be started by the hospice group itself. The advantages of such a service are that there is continuity of care. An admission for a short period can be provided for patients who cannot be managed at home, their symptoms can be controlled and then they can be sent back home for continued care in the home programme. Other advantages of an institution with beds is the availability of respite care, training and research besides functioning as a day care facility for procedures such as pleural taps to relieve distressing dyspnoea due to pleural effusion. In the state of Sarawak4, palliative care is part and parcel of the Domicillary Nursing Service, thus reaching a wide area and a big population.
When appropriate treatment is selected for patients, toxicities or side effects should not outweigh intended benefits of management. Orthopaedic surgery for spinal cord compression resulted in neurological improvement in 28% of the patients5. Chronic pain management employing celiac plexus block with the help of CT scanning has been performed by our anaesthetic colleagues6. The management of chronic pain has been recognized as a multidisciplinary approach, employing pharmacological and non-pharmacological modalities7. With modern techniques and expertise, distressing situations which were difficult to palliate can now be satisfactorily relieved. It must be emphasized that most situations in palliative care do not require high levels of technology or expensive drugs, but only a knowledge of how to use simple drugs and equipment effectively.
A palliative care approach incorporates physical, social, emotional and spiritual care for terminally-ill patients. Palliative care staff are trained to manage difficult physical symptoms, help families cope with practical issues as well as provide psychological support. Making a Difference
Health professionals and the public should be informed that there is hope that suffering can be reduced or eliminated and that one's last journey need not be in agony. This hope can be realized with the delivery of adequate palliative care services at home, hospitals or institutional hospices. The attitude towards the patient and family can be changed from that of "nothing else can be done" to that of "something can always be done to relieve suffering".
By involving the family and loved ones, palliative care encourages and nurtures the culture of a caring and loving society, in whom the weaker members are willingly cared for by the stronger members. In our society, this still exists in many extended families. Many elderly folk and sick family members are still often cared for in their own homes by the other family members, although there are signs that this may be influenced by trends in other parts of the world. The promotion of euthanasia (euphemistically called "mercy killing") would certainly reinforce the culture of "finding the easy way out", to cut the cost or burden of care and to minimize the inconvenience caused by a sick relative.
This would sadly make us more like rats in a rat race in which the strongest wins and the sick and dying are ignored. The level of civilization of a society can be judged by the care and concern it gives towards the welfare of its weakest members.
The goal of palliative care for all patients who require such care can be met if the major stakeholders (i.e. the family, hospice groups, health professionals, medical schools, the Ministry of Health, and other Ministries with related social concerns) take up the challenge. Non-Governmental Organizations
Hospice organizations are able to appeal to the goodwill of the community and thus obtain funds and manpower needed to provide care and support for patients who require palliative care. They are involved in home care nursing, symptom control, counseling and education of the patients' families and the public. Publications by non-governmental organizations help to educate the public and patients 8. Concluding remarks
Many more staff, including oncologists, palliative care specialists and nurses, need to be trained to serve the growing number of cancer patients, including those requiring palliative care. Palliative care must be accessible to all who need this service. In doing so, many patients will have the chance of getting relief from the distressing symptoms of advanced cancer. There is a substantial difference between procuring and allowing death, because "the first position rejects life, while the second accepts its natural fulfillment". |
