Written evidence submitted by Kenya Hospices and Palliative Care Association (KEHPCA)

• People with disabilities require access to compassionate, quality, and effective palliative and end-of-life care when facing serious, life-limiting illness.
• Recognising that disability needs to be understood primarily as a social and human rights issue is important.
• Palliative care and pain relief are increasingly being recognised as a basic human right, but how many disabled people, especially the intellectually disabled patients receive these services?
• People with disabilities are usually among the poorest in developing world, thus making it difficult for them to access quality health care including palliative care and end of life care.

Meeting the individual needs of patients diagnosed with a life limiting condition is rarely considered easy as professionals strive to assess and respond to the holistic needs of each person and offer appropriate care and support for their family throughout this difficult time. The social context in which people live (and in some cases the labels which they have ascribed to them) may influence the nature of any end of life care accessed and affect the subsequent care they receive. Whilst a holistic approach is recognised as the basis for high quality palliative care and support, some marginalised groups (people with a disability e.g intellectual disability) may struggle to access palliative care and support, for a variety of reasons.

People with a disability may not be able to communicate concerns about their health needs in a meaningful way throughout their palliative care journey. Whilst some people with disabilities may not understand complex concepts (e.g. palliative care, death, dying), others may have associated visual, auditory, or sensory impairments.

Heath care providers working with disabled people do not have the appropriate knowledge and skills to support these patients, therefore patients with disabilities will not receive good quality palliative care during their journey with a life threatening illness like HIV/AIDS and cancer

Palliative care is 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. 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 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.

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; 1998a):

• 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.

Kenya Hospices and Palliative Care Association’s (KEHPCA) mission is to promote and support acceptable, accessible and affordable quality Palliative Care for individuals and families by creating networks of informed and empowered institutions in Kenya and our vision is Quality Palliative care for all in Kenya.

KEHPCA recognises that the underlying ethos and good practice principles of palliative and end of life care remains as important to people with disabilities as they do to anyone else. The challenges remain as to how palliative care professionals and other health care professional can embrace differences in order to meet the particular needs of the patient with a disability at the end of life, including the challenges of breaking difficult news. Education and collaboration may be the key to effective support, and simple changes in practice could improve the patient experience.

KEHPCA welcomes collaboration with partners to advocate for access to quality palliative care for people with disabilities through: education; service provision; availability and accessibility; and also advocating for polices on palliative care to include palliative care for disabled people.

December 2013