Pain is universal. Millions of people around the world suffer from pain in varying degrees, from mild to excruciating aches in different parts of their bodies . Until recently the only answer they had for pain relief was to pop a pill into their mouths and wait till the pain subsided.
No one, not even the medical community seemed to fully understand the extent of pain and how it impacted on the lives of patients with life threatening illnesses that constantly impeded their day to day living and reduced their quality of life. However, in recent years health authorities have begun to address this issue following a growing demand on the part of pain sufferers globally, and a few have devoted time and energy to find out the causes of pain and how medical science and technology could relieve it. Following these studies backed by scientific proof, patients are now being offered palliative care which not only addresses pain relief but goes beyond to giving persons with life threatening illnesses accompanied by constant pain, other much needed services as well.
The Sunday Observer spoke to Community Care Physician , National Cancer Control Program, Ministry of Health , Dr Suraj Perera who says, this relatively new service is being offered to Lankan patients , especially, those with cancer related diseases.
Following are excerpts ...
Q. World Palliative Care Day was observed on October 14. I understand that plans are now afoot to introduce these services to Lankan patients . Tell us more about these plans. .
A. Every year, the second Saturday of October is named as ‘World Palliative Care Day’. The theme of this year is ‘Palliative Care and Universal Health Coverage: Do not leave those suffering behind’. Considering palliative care initiatives in Sri Lanka, e.g. drafting of palliative care strategic plan, commencement of palliative care services at hospital level and beyond, development of educational program.
Q. At what stage of the patient’s life is this service offered to them?
A. Palliative care begins at the time of diagnosis of a life-threatening disease (eg. cancer) and continues throughout the disease process until death and into the family’s bereavement period.
Palliative care is a right of every person with a life threatening illness to receive appropriate palliative care wherever they are. It is also a responsibility of every health care professional to practice palliative care according to the need, irrespective of the illness or its stage, and any other characteristic of the patient, including age, sex, ethnicity, religion or the income status.
Q. You referred to a strategic plan for palliative care now being framed. What is it? What is its objective?
A. Yes. We have now drawn up a framework for a National Strategic framework for Palliative Care Development in Sri Lanka - 2017- 2021, which includes details and data on patients living in pain .
Palliative care is an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. (WHO)
Q. So your overall goal is to…?
A. Promote quality of life, respect dignity and lifestyle and ensure a holistic support system to patients with life threatening illnesses and their families through evidence-based, multi-disciplinary and cost effective approaches. It is estimated that palliative care is needed for 40%-60% of deaths annually. With the demographic and epidemiological transition, deaths due to chronic non communicable diseases are increasing and it has led to an increasing demand for palliative care services worldwide.
Q. In Sri Lanka how many need this service?
A. According to the cause of death data of year 2014 in Sri Lanka too it is shown that about 75% deaths have occurred due to chronic non communicable diseases.
Q. What are the leading conditions which require palliative care for adults and children in the global context ?
A. The leading disease conditions which require palliative care for adults and children in global context are listed as follows:. see Table 1
Q. Who needs this care in the SriLankan context?
A. With the demographic and epidemiological transition, deaths due to chronic non communicable diseases are increasing and it has lead to the increasing demand for palliative care services worldwide. According to the cause of death data of year 2014 in Sri Lanka too it is shown that about 75% deaths have occurred due to the chronic non communicable diseases as shown in figure 2. Fig. 2 Cause of death data of Sri Lanka – Year 2014
Q.The W.H.O has recently acknowledged the importance of Palliative Care for both, critically ill adults and children, and offered some guidelines to follow worldwide. What are these guidelines? Does the Health Ministry also adhere to them?
A. WHO defines Palliative Care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual. For adults suffering from pain from terminal illnesses or grieving for the loss of a child, it says Palliative care: must; provide relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patient’s illness and in their own bereavement; uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness; is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.
WHO Definition of Palliative Care for Children
Palliative care for children represents a special, albeit closely related field to adult palliative care. WHO’s definition of palliative care appropriate for children and their families is as follows: the principles apply to other paediatric chronic disorders (WHO; 1998): Palliative care for children is the active total care of the child’s body, mind and spirit, and also involves giving support to the family.It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease.
Health providers must evaluate and alleviate a child’s physical, psychological, and social distress. Effective palliative care requires a broad multidisciplinary approach that includes the family and makes use of available community resources; it can be successfully implemented even if resources are limited. It can be provided in tertiary care facilities, in community health centres and even in children’s homes.
The National Cancer Control Unit of the Health Ministry has adapted thee guidelines in its national program to suit the customs, and cultural differences in our own country.
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Q. What are its strategic objectives?
1. Include palliative care as an essential component of comprehensive health care
2. Integrate palliative care services at all levels of care: tertiary, secondary, primary and at community level.
3. Ensure availability of skilled multi disciplinary human resources for delivery of palliative care services at institutional and at community levels.
4. Ensure availability, adherence of protocols and guidelines in palliative care
5. Ensure availability of drugs and technologies for provision of palliative care at all levels: tertiary, secondary, primary and community level
6. Build partnerships with government and non-governmental organizations for delivery of palliative care
7. Empower family members, care givers for the provision of palliative care
8. Encourage research related to palliative care
9. Ensure adequate financing and resource allocation for cost effective delivery of palliative care
10. Facilitate strengthening legislative framework for delivery of palliative care
11. Ensure availability of management information system to monitor palliative care services.