What is the African Palliative Care Association and what does it do?
The African Palliative Care Association (APCA) is a pan-African non-profit organisation mandated with promoting and supporting culturally appropriate palliative care across Africa, through education and training, advocacy, and development of standards of care. APCA's mission is to ensure palliative care is widely understood, integrated into health systems at all levels, and underpinned by evidence in order to reduce pain and suffering across Africa. APCA does not provide hospice services or direct care to patients.

APCA is in a unique position to drive forward the palliative care agenda across the continent.  With a pan-African remit, it has a proud and proven track record of supporting, developing and building the organisational capacity of its members, including national palliative care associations.  It is the regional voice for palliative care, speaking for the whole of Africa. In the past, less than effective health delivery systems have posed a substantial challenge to APCA's attempt to realise this vision.  According to the World Health Organisation, the six fundamental building blocks of a generic health system include: service delivery; health workforce; information; medical products, vaccines and technologies; financing; and leadership and governance.  A critical component of the WHO's service delivery building block is a package of integrated services.  However, despite being defined as an integral and essential component of a comprehensive package of care for people living with life-limiting illnesses, palliative care is a variable component of service delivery models in Africa.  A health system that excludes palliative care services is both deficient and not working optimally.

Strengthening health systems so as to ensure the public health delivery of palliative care therefore underpins APCA's third strategic plan.  In achieving this goal, APCA will be propelled by four strategic drivers:

• Strategic driver 1: Increasing knowledge and awareness of palliative care among all stakeholders;
• Strategic driver 2: Strengthening health systems by integrating palliative care;
• Strategic driver 3: Building the evidence base for palliative care in Africa, and;
• Strategic driver 4: Ensuring the economic sustainability of APCA.

APCA recognises the integration of palliative care into the national health systems across Africa as the cornerstone for palliative care and its sustainability.  

What is palliative care?
The World Health Organisation defines palliative care as 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. In view of this palliative care is primarily directed at providing relief to people with a life-limiting illness through symptom and pain management. The goal is not to cure, but to provide comfort and maintain the highest possible quality of life for as long as life remains. The focus is not on death, but on compassionate, specialised care for the living. Palliative care therefore, strives to help individuals and their families:

• address physical, psychological, social, spiritual and practical issues as well as associated expectations, needs, hopes and fears.
• prepare for, and manage self-determined life closure and the dying process, and cope with loss and grief during illness and bereavement.
• What is involved in palliative care?
• Palliative care involves holistic care for the patient and his or her family with the patient being at the centre of care. Palliative care also involves:
• Pain management – palliative care providers work with patients and families to find out what could be causing their pain and the best ways to relieve it. The WHO has recommended morphine (a narcotic) as the drug of choice for patients with moderate-to-severe pain. Other modalities and/or other drugs could be used in the management of a patient's physical pain.
• Symptom management – patients with cancer and/or HIV/AIDS often have to deal with symptoms such as: nausea and vomiting, weakness, difficulty breathing, bowel and bladder problems, among others. Palliative care can help relieve these symptoms that may be very distressing for patients.
• Psychosocial, spiritual and emotional support – the health of the whole person is important in palliative care, hence the need for provision of many different kinds of support to both the individual and family.
• Caregiver support – caregivers may be concerned about whether it is possible to look after their family member, especially when the person being cared for is at home. Palliative care services can help the family cope. Caregiver support services might include:

1. Advice and assistance from health care providers -- nurses and doctors -- who are skilled in providing palliative care.
2. Instruction on how to care for the person – e.g. how to give medication, prevention of skin problems, how to recognise when a person is close to death and what to do at that time.
3. Home support services that provide assistance with household tasks and other activities of daily living (ADL). Providing relief for the caregiver through day care services and staying at home with the patient could also alleviate the strain an illness places on caregivers.
4. Palliative care may complement and enhance disease-modifying therapy or may become the total focus of care. It continues even after the death of a patient through bereavement support for family members.

Who provides palliative care in Africa?
Palliative care in Africa is still a very new concept and it is not widely available. Many countries do not have an active palliative care programme. However, a growing number of countries in Africa are beginning to integrate palliative care into their national health care plans. Consequently, not only is palliative care absent from the vast majority of African national health policies or basic care packages, but its provision is limited primarily to non-governmental organisations, faith- and community-based organisations and dedicated hospices.  Whilst some of these services are excellent demonstration sites for care provision, they cannot begin to reach the significant national need for palliative care (estimated as one percent of a country's total population).  Unmet needs can only be addressed by the public health approach to palliative care delivery that is advocated by the WHO.
Why palliative care?
By 2008 an estimated 22 million people in the region were living with the human immunodeficiency virus / acquired immune deficiency syndrome (HIV / AIDS), 67 per cent of the global disease burden, with 1.9 million new infections reported in that year alone.  Moreover, there were over 700,000 new cancer cases and nearly 600,000 cancer-related deaths in Africa in 2007, while cancer rates on the continent are expected to grow by 400 percent over the next 50 years.  Despite the need for palliative care to address this disease burden, current provision of palliative care on the continent is inconsistent, often provided from isolated centres of excellence rather than integrated into mainstream health systems.  Indeed, for the overwhelming majority of Africans who currently endure progressive, life-limiting illnesses, access to culturally appropriate, holistic palliative care (that includes effective pain and symptom management) is at best limited, and at worst non-existent.  Moreover, a survey of hospice and palliative care services on the continent found not only that 45% (21/47) of African countries had no identified hospice or palliative care activity, but that only 9% (n=4) could be classified as having services approaching some measure of integration with mainstream service providers

Is there a difference between palliative care and home-based care?
There are various models of delivery of palliative care services in different parts of the world. One of the models of delivery is home-based where patients are cared for in their own homes. 

Home-based care is defined as the provision of health services by formal and informal caregivers in the home. However, home-based care without holistic palliative care including effective pain and symptom control is not classified as palliative care. Palliative care delivered in the patients' homes is a convenient and preferred way of care for many patients, allowing them to be in an environment where they have access to loved ones and the comfort of being in a familiar environment.

What is Grief and Bereavement?
Grief is a personal emotional response to a loss. The loss of a loved one is life's most stressful event and can cause a major emotional crisis. Anticipatory grieving may start with a diagnosis of a life-threatening illness and may enable preparation for loss. Anticipatory grieving does not mean that the family will not grieve after the death of their loved one. Expression of the loss varies greatly among different cultures and the aching pain of bereavement can last for years.

What is Bereavement Support?
Grief is exhausting and it is important for the person in grief to continue in their daily routines. A bereaved person needs support in order to cope with the loss, which is why palliative care is important. The following interventions have been found to be beneficial to the bereaved:

• Showing your genuine concern and emotions;
• Avoid clichés e.g. 'you need to be strong now…' 'It is God's will', etc. Such responses can make survivors feel angry, misunderstood or unsupported, as every person's response is unique;
• Use of touch, when appropriate;
• Allowing for silence and emotional reactions;
• Facilitation of expression of feelings or conversations about the person who has died;
• Sharing your memories (if appropriate) of the deceased and talking about his or her special qualities.
• How can I find out about palliative care services in my country?
• The following resources may be helpful to learn about country-specific palliative care services and resources:
• Hospice and Palliative Care worldwide
• Aids map/palliative care in resource limited settings
• World Health Organization publications
• Diana, Princess of Wales Memorial Fund resources on palliative
• World Palliative Crae Alliance
• National Palliative Care Associations

Discussions and Questions