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How is palliative care a human rights issue?
What is palliative care?
Palliative care is an approach that improves the quality of life of patients and their families facing the 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.
Palliative care:
- Provides 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 patients illness and in their own bereavement
- Uses a multidisciplinary team approach to address the needs of patients and their families, including bereavement counseling, 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, radiation therapy, HAART, and includes those investigations needed to better understand and manage distressing clinical complications.
Source: WHO (World Health Organization) 2002 Definition of Palliative Care. Please see www.who.int/cancer/palliative/definition/en for a more complete reference.
What are palliative care rights?
Palliative care embraces human rights that are already recognized in national laws, international human rights documents, and other consensus statements.
Palliative care rights include the right to:
- Pain relief
- Symptom control for physical and psychological symptoms
- Essential drugs for palliative care
- Spiritual and bereavement care
- Family-centered care
- Care by trained palliative care professionals
- Receive home-based care when dying and to die at home if desired
- Treatment of disease and to have treatment withheld or withdrawn
- Information about diagnosis, prognosis, and palliative care services
- Name a health care proxy for decision making
- Not be discriminated against in the provision of care because of age, gender, socioeconomic status, geographic location, national status, prognosis, or means of infection.
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Did you know?
- Death statistics
- Of the 58 million people dying annually, at least 60% will have a prolonged advanced illness and would benefit from palliative care.
- About 80% of the dying would benefit from palliative care to alleviate pain and suffering in their final days of life. Yet, in countries such as India, only around 1% of them are able to access such car
- Elderly
- There are 600 million people 60 years of age or older. By 2025 there will be 1.2 billion, and by 2050 the number will increase to 2 billion.
- Cancer
- 7 million people die from cancer each year. There are 24.6 million people living with cancer. The incidence of cancer will more than double to an estimated 24 million new cancers per year by 2050.
- The WHO has demonstrated that up to 90% of cancer patients can receive adequate therapy for their pain with opioid analgesics. Yet, in 2005, 80% of cancer patients did not have access to pain relieving drugs.
- Despite the WHO stating that palliative care is essential to national cancer control programs, few countries have incorporated it.
- HIV and AIDS
- In 2005, approximately 2.8 million people died of AIDS. An estimated 39.5 million people worldwide are living with HIV and AIDS. Up to 80% of patients in the advanced stages of AIDS suffer great pain, but very few have access to pain relieving drugs or palliative care services.
- Pain management and palliative care have been shown to increase drug treatment adherence for both cancer and AIDS therapies.
- Cancer patients in developing countries have access to opioid analgesics for pain management, but AIDS patients do not.
- Despite UNAIDS stating that palliative care is essential to national HIV and AIDS plans, few countries have developed palliative care programs.
- Essential drugs
- Eighteen pain and palliative care professional organizations from all over the world have created a list of essential drugs for palliative care. Fourteen drugs are currently on the WHO Essential Drug List, but few countries have incorporated them into their health care strategies.
- Barriers
- The International Narcotics Control Board has strongly supported the appropriate use of analgesics for medical use; yet, patients, physicians and policy makers fear addiction and are reluctant to use or prescribe these drugs. Significant regulatory barriers also limit access.
- According to 2004 data published by the International Narcotics Board, 6 nations account for 79% of medical morphine consumption and 120 consumed little or no morphine.
- Despite the existence of a palliative care educational curriculum, little or no training on end of life care palliative care is given to health professionals.
- Caregivers
- Most of the burden of care at home falls on women and girls. 68% of primary caregivers in South Africa were female; in Uganda 86% were female. Women and girls often give up their jobs or drop out of school to be caregivers.
- In many countries, after a man’s death, wives lose their homes because they have no legal rights to ownership. Children without a birth certificate lose access to the estate and may be unable to attend school because they lack school fees.
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