This case note review provides a good insight into a hospital based palliative care service in a low resource setting, with a high HIV prevalence, in SSA. Palliative care has recently been recognised by the Ministry of Health in Malawi as part of a minimum standard of care for all tertiary institutions (Dr Jane Mallewa, QECH, personal communication). This paper provides useful data of some of the service needs that would need to be considered when developing such a service in the same or similar settings.
The mean age of in-patients seen by the palliative care team was 39.1 years; the average life expectancy in Malawi is 53 years [12
]. Other studies of palliative care populations from around the world have found a mean age of 66 years in the UK, a median of 62 years in Taiwan and a mean of 42.7 years from a hospital based palliative care service in South Africa, highlighting the lower age range which maybe expected by those providing palliative care in SSA [13
]. The difference in age between the patients with HIV related diagnoses and cancer patients (33 years compared with 48 years) emphasises the impact of the HIV epidemic in our setting. Patients are being referred to palliative care services during what should be expected to be their most productive working years. This places a particular burden on families and has implications for patients and carers alike.
It is important to note however that more than one in five of the patients seen were either over the age of 60 (12%) or under the age of 25 (11%). Health care professionals need to be aware of the special needs and perspectives of both adolescents and young adults, and the elderly facing life threatening illnesses in this setting.
At the time of review referrals were predominately taken from general medical adult wards. More recently an outreach service to general surgical, gynaecology and other specialist wards in the hospital is being developed utilising a series of 'link nurses' based on the specialist wards who are trained to undertake palliative care assessments. There is a separate paediatric palliative care team operating at the hospital. The total number of patients requiring palliative care across all hospital specialties at our hospital during this period is likely to have been much higher.
HIV was common, with just over half of the patients HIV positive. Malawi has an HIV prevalence of 11.9%, although the urban prevalence is known to be higher at around 17% [16
]. Recent studies in QECH have found an HIV prevalence of 70% among medical in-patients [17
]. Only a third of the HIV positive patients were on ARVs. Reasons for patients not being on ARVs when being seen by the palliative care team may include this presentation being their first presentation of disease, and therefore the initial diagnosis of HIV, or the presence of other co-morbidities, such as TB, delaying the initiation of ARVs until a later date. ARVs have been freely available in the public sector in Malawi since 2004, with an estimated 300,000 people eligible. Currently around 200,000 are on treatment [18
]. More work to improve awareness of, and access to, ARVs in Malawi is still needed to further increase the number of eligible people receiving ARVs. However it is important to emphasize that palliative care services may still be required for patients with HIV who are taking ARVs, especially for those who have treatment related side effects, poor adherence or HIV related malignancies.
There was a high prevalence of pain among patients with cancer (83%) and with HIV related diagnoses (71%). Other symptoms were also common among both sets of patients, which is consistent with previous findings that symptoms among HIV/AIDS patients are similar to those of patients with terminal cancer [19
]. 56% of patient's required oral morphine. The mean daily dose of morphine prescribed by palliative care personnel in this setting, 30 mg/day, was much lower than the average dose of 100-250 mg/day found by a 2007 Cochrane review of opiate prescribing in palliative care [20
]. Reasons for the lower doses are not clear and are likely to be multi-factorial. Despite the fact that it has repeatedly be shown to be safe and cost effective to use in low resource setting, with negligible rates of iatrogenic addiction, morphine is underutilised in numerous low resource settings [7
]. Reasons for this include restrictive legislation, drug availability, lack of training, and fears over addiction and dependence [6
A short mention should be made regarding symptoms of anxiety and depression. According to our results these symptoms were only reported by 4 patients. Other studies estimate that between 7% and 30% of palliative patients suffer from depression [23
]. HIV patients in South Africa were found to exhibit high levels of psychological symptoms, with 55% of patients reporting depression and 49% anxiety [25
]. There is little recognition of, and in-fact no word in Chichewa, the local language in Malawi, for depression. Whether our findings represent a true lack of symptoms or reflect under reporting in our records is not clear. Further work into evaluating psychological symptoms among our patient population using more in-depth screening tools would be helpful to address whether we are adequately screening for, and therefore responding appropriately to, these symptoms.
Hospital in-patient stays were short (mean 6.3 days). Ongoing provision of holistic care in the community is therefore vital, with family members, community home based care teams and community leaders all playing their part. Through collaboration with NGOs and community based organisations the Ministry of Health in Malawi has a clear system for training of home based care volunteers, and numerous groups operate in all regions of the country. Our programme works with over 100 community based volunteers in a nearby township area to provide ongoing care after discharge from hospital. Programmes such as the integrated community based home care (ICHC) models from South Africa [7
] provide some ideas as to how such programmes may be implemented, though the dramatic paucity of resources for health care and of human resource in Malawi may limit replication.
Only 40% of patients discharged were followed up by the palliative care team. Transport has been cited by others as a major barrier in access to health services in resource poor settings [26
]. As a central teaching hospital patients are often referred from distant health facilities far from the clinic. There is no government system of welfare payments to support palliative care patients in Malawi, with loss of income due to disease meaning funds for transport to attend follow-up, along with many other things, may be significantly lacking. Palliative care training at district and health centre level is vital to assist with timely and appropriate follow-up for patients in this setting.