JEDDAH, 9 November 2005 — While death must to all, for millions it comes after long years of agony. Of patients with advanced cancer, 70 percent suffer severe pain and 90 percent of those with advanced AIDS have uncontrollable pain. In developing countries, people with cancer are mostly diagnosed after their disease has become incurable. In the case of HIV/AIDS, it is still worse. Due to the stigma attached to it, many do not take advantage of care and support programs, even where available, until the final stages. Because a majority of HIV/AIDS victims are from countries with poor medical facilities — 29 million of the estimated 40 million are Africans — they have limited access to advanced diagnosis and treatment. Unrelieved suffering on this scale is unacceptable and unnecessary.
In recent years, remarkable advances have been made in pain and symptom management in people with progressive incurable diseases. Great strides have been taken in understanding the psychological, social and spiritual aspects of dying and death. Health professionals, family members, volunteers and others are working together to create dynamic partnerships for the relief of suffering. High-quality hospice and palliative care, which aims to meet the needs of the whole person, can and does provide the answer to suffering.
This is an issue that affects everybody on our planet. We would all like our lives and that of those we love to end peacefully and comfortably.
The concept of hospice and palliative care is based on interdisciplinary care that incorporates medicine, nursing, social work, psychology, pastoral care, physiotherapy, occupational therapy and related disciplines. The aim is to provide care to all those who need it — of all classes and status, excluding none.
The experience gained from the hospice and palliative care of cancer should be extended to the care of people with other chronic incurable diseases worldwide. Based on the World Health Organization’s definition, palliative care is not just end-of-life care. It starts from the time a life-threatening illness is diagnosed and should be offered along with treatment. It becomes invaluable for patients and their families who are in need of physical and psychosocial support.
WHO recommends that all countries develop comprehensive palliative care policies and programs with a public health approach that includes symptom management, psychosocial support for patients and their caregivers and are integrated into the existing health system. WHO also recognizes that palliative care programs must be tailored to each country’s resources, existing health-care infrastructures, cultural attitudes and availability of resources. The provision of home-based care by trained and adequately supervised family or community caregivers, particularly in poor resource settings, can be the best way to provide palliative care for the majority of patients who require it. Families and other informal caregivers are essential contributors to the delivery of effective care. They should be recognized and empowered by government policy.
National hospice and palliative care organizations have a key role to play in advocating the development of a good health policy in their countries. Governments and NGOs must work together to further develop care programs and services.
It is in order to highlight the need for a coordinated and consistent effort worldwide to relieve pain that the World Hospice and Palliative Care Day is being observed. It is meant as a day of coordinated action to support hospice and palliative care everywhere. On Oct. 8 this year various events and activities took place worldwide to mark the day. The message was that the care offers a holistic approach of physical, emotional and spiritual care to alleviate suffering.
The World Hospice and Palliative Care Day brings together a collective global voice to raise awareness of:
• The need for all countries to include palliative care in their national health care programs.
• The urgent need for greater and more secure funding to support hospice and palliative care services worldwide.
• The need for essential low-cost opioid analgesics for pain and symptom control to be made available, particularly in resource-poor countries.
• The need to extend and develop the lessons learned in hospice and palliative care into wider disease groups, particularly in relation to the HIV/AIDS pandemic.
• To improve the availability of palliative care for people in resource-poor countries — particularly in rural areas and to ensure that it reaches marginalized groups throughout the world, such as prisoners, the homeless and those with special needs such as learning difficulties.
• The need to integrate hospice and palliative care into all health-care professionals’ education programs.
• To make all aware that palliative care should not be a last resort but should be provided concurrently with the treatment of diseases such as AIDS or cancer.
While Palliative care and symptom management have become an integral part of treating painful terminal illnesses in advanced countries, it is still in the beginning stage in the Middle East. The concept is not yet known to the public. This is surprising, considering the speed with which advancements in medicine come to the region.
However, it is wrong to assume that palliative care is a preserve of the advanced world. Kerala, a small state in southern India, provides a striking example. In the districts of Malappuram and Calicut, there is one palliative care clinic for every 10-square kilometer area. These are all run with community participation. The awareness among the public about the palliative care is very high and the opioid drugs are easily available to the patients from pain clinics.
