Spotlight on Palliative Care

The active and dedicated care of the dying person is relatively new as a philosophy and a service in our society – and is still far from universal. Moreover, there is still a reluctance in our society to accept dying as a part of living.

In 2001 the Journal of Palliative Care included an article on palliative care in Albania. “Cancer and morphine are synonymous with death and therefore not mentioned. Even the medical profession is reluctant to use the word 'cancer' preferring to call it 'the big severe illness' when communicating with patients and their families. The result is great anxiety and distress for the patients who, while on the one hand are told that they are getting better, are increasingly aware that their symptoms are getting worse. They do not want to distress their family by asking awkward questions so they exist in an uneasy silence.” Since then a PRIME-led programme is working with a recently formed palliative care service to develop 20 professional palliative care educators from a variety of disciplines who will be able to teach others to provide much needed palliative care services across the country. This scheme is designed to be self-sustainable once the initial programme is complete, and is already attracting participants from other cities, as well as the Chairman of the new Palliative Care Association of Albania.

In Nepal since 2000 PRIME has been working closely with the Princess Alice Hospice (Surrey) in devising the Certificate in Essential Palliative Care, an eight-week distance learning programme. The course has been adapted for Nepal where it has been run two to three times a year since 2005.

In 2007 the Indian Association of Palliative Care worked with PRIME to further adapt the course for the Indian context. Following two workshops the course has now been rolled out across 25 teaching centres throughout India, with over 1,100 nurses and doctors completing the programme. Bangladesh has also recently requested to adopt the programme, which has been very encouraging, especially as it will be the trainers in India who will pioneer and supervise the work in Bangladesh.

"Palliative Care is an urgent humanitarian responsibility and freedom from pain is, officially designated a human right. Unfortunately the reality is very different. For most of the world's population, and in particular for those in sub-saharan Africa, freedom from pain is a pipe dream." Dr Mhoira Leng, Cairdeas, speaking at the International Palliative Care Awareness and Training Seminar, October 2009.

In Zambia a PRIME team led a two-week of intensive training programme for 27 medical and nursing teachers from the Chainama College of Health Sciences. The training was rated highly successful, but it was the unexpected consequences which particularly thrilled us on this occasion. For example: a course member who, during the visit to the Cancer Disease Hospital, volunteered her services as the (only) social worker for the patients of that brand-new and very high-tech hospital; Nurses who, seeing the stretched circumstances of the city centre hospice, offered to set up a support service among themselves to help with funds and provision for patient-care; and the Director of Human Resources at the college who determined to organise groups of trainee nurses to have placements at the hospices, not only to give the students wider experience of good nursing practice, but also to help with the staffing needs of the hospices. "Thank you for the course in Palliative Care. The course was an eye opener. I have always known that there are terminally ill in our midst. To care for them was mainly a family matter as far as I was concerned. This course taught me that the care for the terminally ill was for all in one way or another." Zambian Doctor.

In Armenia a three-year programme is underway at the request of the Vice-Rector for Postgraduate Education in the medical university and the Vice-Rector for Education of the National Institute of Health (who runs the state's medical services). A PRIME International Palliative Care Workbook has now been produced in English and Armenian, based in part on the Wessex Palliative Care Handbook. We are greatful to the Saint Sarkis Trust and the Gulbenkian Foundation who have provided he funding to make this possible.

Meanwhile PRIME was invited to return to Albania to help run another course there and took a few unfinished samples of the new Workbook which thrilled our Albanian colleagues who immediately set about using it one-to-one with a junior doctor asking 'Could we not have it for Albania?' The Armenian colleagues in London had no objection, so now the Albanians are planning to do their own translation to accompany courses in Albania.

Most recently PRIME has been asked to visit the Ukraine for palliative care teaching, so perhaps the workbook could be translated into Russian? 'Why not?’ say the colleagues of the language department of the Armenian State University 'We could translate into Albanian and Russian as well as Armenian if you want!' And now the Gulbenkian Foundation has agreed to finance the printing of the first Armenian edition of the PRIME International Workbook of Palliative Care. We are eagerly awaiting the first Armenian copies ready for our Autumn 2011 visit and teaching courses...

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