Between 69% and 82% of those who die need palliative care, according to a new study published in Palliative Medicine. The Western World has responded by providing hospices to offer pain relief and support during life-threatening illness, but in developing countries the story is very different. The reality for many millions of adults and children battling diseases like HIV and AIDS is a loss of all quality of life and often a long, painful death.
All of our destinations struggle with the delivery of palliative care, but statistics from the WHO global atlas of palliative care show that Africa faces the biggest challenge. We interviewed Dr Charles Campion Smith, a Macmillan GP adviser, who has just returned from a trip to introduce palliative care to a region in Tanzania.
What was the aim of your visit?
While there have been great advances in the treatment of HIV/AIDS in East Africa, still less than a third of those affected are receiving treatment and there is still a huge burden of care for patients with cancer too. There is much interest in using the principles of symptom control and palliative care pioneered by UK hospices in Tanzania. We hoped to support the introduction of palliative care to the Korogwe district, mentoring local health leaders in both teaching, clinical assessment and treatment. The aim was to bring about improvements that would be sustained after our stay.
Was there any understanding of the WHO definition of palliative care?
People do understand what palliative care is, but statistics show that Tanzania has just two specialist doctors and 37 nurses per 100,000 people. We gave presentations at the hospital’s multidisciplinary clinical meetings to introduce concept of palliative care and the need for this to embrace physical, social, psychological and spiritual aspects. Later we explored pain assessment and the use of oral morphine (which was previously not available locally) and the use of other drugs and approaches for symptoms in palliative care.
We were struck by the stoicism of local people whose expectations of the health service are very modest and who are appreciative of any efforts made to lessen their distress.
How did you work with the local healthcare staff?
We formed a core local palliative care team. It had a charismatic nurse coordinator, a skilled clinical officer, the hospital pharmacist, an HIV/AIDS NGO representative and the newly appointed hospital matron. We worked with them on a plan for the following three months, focussing on how they could support each other, include others, learn together and teach others.
What resources did you use for teaching?
The Palliative Care Toolkit, developed by Help the Hospices and the World Palliative Care Association has a message: “there is never nothing you can do”, which we felt was particularly strong in an area of minimal resource. There is a KiSwahili translation of the tool kit and this proved invaluable as many of the healthcare workers had limited English.
How did you communicate the theory behind palliative care to communities?
Because many people providing palliative care are based in the community, we held a series of meetings in local health centres and dispensaries. We invited clinical officers, nurse-midwives, nursing assistants and voluntary village health workers.
We started by asking participants to share their views of the care they would wish for themselves or a family member. We then gave presentations about the concept of palliative care. This led into team-work sessions and role play, allowing us to demonstrate non-verbal aspects of good and poor communication as well as allowing them to reflect on the relevance to their own working situation.
We focussed on patients and how you could identify them in hospital or at home; assess physical, psychological, social and spiritual needs; treat pain and other symptoms and use oral morphine appropriately and safely. We also tried to instil the need to make more links within the wider community.
Were the meetings successful?
One hundred and sixty health workers participated in the six sessions. We also taught nursing students, a local HIV/AIDS patients group and the local interfaith religious leaders group. This resulted in Muslim and Christian faith leaders agreeing to work together to provide spiritual care.
As well as teaching, what else did you put in place?
A practical palliative care approach was modelled by working alongside the nurses and clinical officers in the wards and clinics. We were pleased to be able to add specific interventions such as the provision of basic opiate analgesia and other simple symptom control measures. A supply of oral morphine was obtained and procedures put in place for its safe dispensing and administration. A local palliative care register was established; most patients received only symptomatic care but a few were referred for palliative radiotherapy.
The African Palliative Care Association acknowledges that although the concept of palliative care is based on a UK model, it must be adapted to African traditions, beliefs and cultures – all of which vary between communities and countries. Did you have to adapt your delivery of palliative care?
We had to consider the social, political and economic context of Tanzania. We learnt that it was always important to balance the benefits and costs (total costs - distress, journey time, absence from home and family, loss of money for children's schooling etc) when thinking about treatments for communities in Tanzania - especially those unlikely to have significant or long term benefit. It is important to frame this as not 'doing nothing' but rather doing something different - that meets people's overall needs better.
With the lack of resource and demands on staff, how did you ensure continuation of the work?
There were concerns that the work established might not continue – health workers have huge demands on their time, attention and energy. However, three months after we returned from our first trip, more people had been identified in need of palliative care and received appropriate assessment and care as a result. The Palliative Care Toolkit highlights that the interest and concern of health professionals can be used as a powerful therapeutic tool, and we found this to be true. We came away impressed by the enthusiasm and passion to improve services shown by the professionals with whom we worked, and were heartened by the way in which religious leaders from all faiths were eager to work together.
Our second trip showed that there has not been much fundamental change in early identification and treatment of disease nationally. Many cancers, for example, present late when curative treatment is not possible and palliative care is the only useful option. That in mind, we were pleased to see pockets of better care with staff skilled in the holistic assessment (considering physical, psychological, spiritual and social factors) of people affected by solid tumours, HIV/AIDS and other progressive and incurable illnesses, and the availability of morphine for both in- and out-patient use.
We were grateful for the opportunity we had to spend time working with the local community; the welcome we received and friendships we made created a very special experience for us both and helped us focus on what is truly important in caring for patients where-ever they are.
Work the World thank Dr Charles Campion Smith for his co-operation in this interview. If you're interested in learning more about elective placements linked to palliative care in our Tanzanian hospitals, fill out the short enquiry form and we'll get in touch with you ASAP.