African Palliative Care Association

Bridging the gap: the neglected elderly

The African Palliative Care Association (APCA) has completed a pilot study aimed at integrating palliative care services into services for the aged. In sub-Saharan Africa, with an overwhelming communicable and non-communicable disease burden, the palliative care needs of aged people have never been more urgent.  However, services that target this group often lack the necessary skills to provide effective palliative care.

Using in-depth interviews and focus group discussions, this study aimed to: (i) describe the current life experiences of, and care services for, aged people and identify their unmet palliative care needs; (ii) provide recommendations for the integration of palliative care into existing services for the aged, and; (iii) highlight the key components of a provisional palliative care research agenda for older people in Africa.  The study countries were Kenya and Uganda.

The policy and medico-educational context

  • In an era of donor-funded, disease-specific vertical programming across Africa, palliative care services that explicitly address the needs and welfare of the aged irrespective of their diagnostic categories are non-existent in the study countries.
  • Palliative care policy development remains embryonic in many African countries, where it remains a relatively new discipline, especially in relation to the elderly. 

Typical daily life for the aged

  • Central to the problems that can compound a sense of social isolation is poverty, a financial destitution that impacts negatively upon people’s ability to access the health services they need.
  • These financial problems are exacerbated for those aged who look after orphans and vulnerable children.
  • For some aged, functional impairment is exacerbated by unmanaged pain.

Limitations of existing care services

  • Current limitations are multiple and characteristic of many home-based care services on the continent: insufficient staff numerically; inadequate finances; and inadequate health skills.
  • In terms of the aged’s health needs, staff training is critical. Palliative care services are not sufficiently trained to address the specific needs of the aged.

Addressing service limitations and integrating services
Respondents suggested integrating palliative care services for those for the aged at two different levels: (a) training (especially on pain management) from established palliative care organisations, and; (b) joint advocacy as part of a more long-term strategic partnership between the two types of organisations.

Recommendations
Integration
(a) Training

  • This could range from one-off training sessions that provide staff members of aged care organisations with basic palliative care knowledge and skills, or more substantially as part of an ongoing training programme that could have an embedded mentoring component to it.
  • Central to this training would be the need to be sensitive to, and address, the concept of patients’ total pain.

(b) Community partnership model

  • Pursuing a more significant community-based model of care provision based around a strategic partnership between both organisations would necessitate, in the first instance, a meaningful dialogue to clarify what the precise nature of that model could and should be, given the financial constraints facing the care organisations, the attitude of local communities, and the sensitivity and cultural expectations of local populations.
  • Part of this model could entail:
    • The harmonisation of the two services so that any areas of duplication are minimised and service delivery cost effectiveness is maximised;
    • The development of effective access routes for pain assessment and management based around a tiered care approach, possibly entailing immediate family members in the first instance to provide rudimentary care and to highlight changes in patient need as they arise, referring to more specialist attention where the need arises;
    • Effective joint advocacy to advance the aged care policy agenda;
    • The joint development of service development funding proposals, and;
    • Community sensitisation to the needs and inherent value of the local aged.

Research agenda

  • A feasibility study to determine the extent to which community financial support of a palliative care / aged service similar to the Kerala sustainability model is possible in an African setting.
  • A quantitative survey of aged patients’ life experiences and services received to enumerate the extent of the problems encountered.
  • A study of the pathways to palliative care followed by aged patients to determine their nature and any delays in presenting problems.
  • Lastly, the funding of dedicated aged research positions to advance this research agenda that combines international training experience with in situ practical research work.

The full report will be disseminated soon.