Since the mid 1990s there has been a growing awareness for the need to develop a palliative care service in Turkey that would include not only pain relief and symptom control but also the psychosocial needs of the patient, and their families, at the end of life. Traditionally, Turkish people have tended to die at home cared for by their family. In less populated rural areas home is still the commonest place of death. Studies conducted in the late 1990s and early 2000s revealed a radical shift in the place of death for Turkish people, particularly those who have migrated to urban areas where 75% of the population now live.^34,35 With this change in socio-economic patterns fewer women are available to care for relatives in the home. Over 60% of urban deaths are now in hospitals, although, according to one national survey of people’s attitudes to dying in hospice or hospital, 47% of the 200 adults questioned would prefer to care for their dying relative at home. Conversely, for themselves, 54% would prefer to die in hospital as they hoped to have better care.³⁶

Political events, particularly in the 1990s, inadvertently raised awareness of the need to address adequate provision of care at the end of life, when separatist insurgency led to people fleeing from rural to urban areas (chiefly in regions such as Diyarbakir and Adana in the south-eastern Turkey). This caused an enormous burden for local hospitals that were unprepared for such a large increase in their patient populations and most significantly, the consequent increase in the need for narcotic drugs for patients at the end of life.³⁷

Given this socio economic and cultural background the concepts of palliative care have, however, proved slow to disseminate, in contrast to the development of improved methods of pain relief.³⁸ Professor Serdar Erdine, Chair of the Department of Algology at Istanbul Hospital Faculty of Medicine, explains that although: ‘the real palliative care services are very weak here, pain management is very well developed and is going to be a specialty very soon.³⁹

Several pain specialists and oncologists have recognised the need for specialist palliative care services since the mid 1990s, and a number have sought palliative medicine training overseas and returned to encourage training and development within their own units and faculty departments. There are, however, no national guidelines or government financed support for palliative care services. (Although a cancer control policy is being prepared and there is now a public health policy for AIDS).⁴⁰ Most of the interested oncologists and pain specialists are working in relatively few university hospitals (there are a total of 50 government supported university hospitals in the country and 668 government funded Ministry of Health hospitals). In 2003, Professor Yasemin Oguz, of the Unit of Deontology (Medical Ethics) in the Faculty of Medicine at Ankara University co-authored a paper with colleagues in which they report that end of life care services continue to be markedly inadequate. In particular, she and her colleagues highlight the lack of nursing or financial support for families who have to care for their older, terminally ill relatives at home, which increases the likelihood of hospital admission. Oguz et al. note the issues around using opioids, points reiterated by Serdar Erdine in 2005, and suggests that too often the end of life is likely to be painful and lonely in hospital:

‘Narcotics are often available to meet the needs of dying patients with chronic pain. Many private pharmacies shun the bureaucracy and the potential liability that goes with dispensing “green” prescriptions (for addictive or abusable drugs) and “red” prescriptions (for narcotics). The difficulty in finding a healthcare professional to come to the home to dispense, administer, monitor, or instruct in the proper use of opiates encumbers or entirely obstructs home care with narcotics. Under-treated pain and the lack of a means to secure access to opiates lead people to seek overloaded hospital-based clinics or avoidable and costly inpatient treatment. Hospitals and their staff are not organised or trained to provide palliative care.’ Of 7 university hospitals and 9 state hospitals in the three largest cities: ‘no hospital had a policy on end of life care, pain management or DNR (do not resuscitate) orders. Dying patients are often placed in what healthcare professionals informally call “agonal rooms”. These are often in less noticed areas of the hospitals ... The dying person is often alone in an institution from which he or she or relatives sought help.’⁴¹

A needs assessment was due to be conducted by Professor Oguz in 2004 because as she describes, a major problem in meeting the palliative care needs of patients and educating healthcare professionals lies in the lack of data:

‘As the director of the needs assessment project for palliative care in Turkey I may say that our main problem is the lack of national data on the subject. Without essential data it is not possible to convince the Turkish Ministry of Health and National Health Insurance Organizations about the importance of the subject.

Palliative care and end of life issues are a kind of no man’s land in Turkey. Although many healthcare professionals encounter the problems and are aware of the need, they do not see the subject as their business. There are financial and legal restrictions. Our initial objective is to establish a continuous communication between interested professionals and patient advocacy groups. There are a couple of non-governmental organizations which may support the efforts. One of them is the Association of Patients with Cancer. Their main concern is financial problems of cancer patients. Another important group is the Turkish Oncology Group (TOG) which is not a formal association, but a collection of interested professionals. It has a subgroup named Education, Research and Supportive Treatments.⁴²

Unfortunately, the palliative care needs assessment described here has been delayed for lack of funds.⁴³ Although, these economic difficulties are reported to act to slow the development of hospice home care there are some recent initiatives, driven by members of the TOG. For example, medical oncologists Dr Perran Fulden Yumuk and Dr Nazim Turdal at the Marmara University Medical School Hospital in Istanbul report:

‘We are planning to build a hospice and one fellow is being educated in USA for this purpose and she will finish her fellowship in 3 years. At this time there are no university or government based hospice programs in Istanbul. Most of the time patients are admitted to hospitals for palliative support, which is usually unnecessary use of beds, etc. This is why we decided to build a hospice in Istanbul.⁴⁴

There are also plans to build an inpatient hospice at the Hacettepe Hospital in Ankara, with construction due to start in 2005. This is a project initiated and encouraged by Professor Dincar Firat, President of the Turkish Oncology Group.⁴⁵ Members of theTurkish Oncology Group (TOG) have also been active in encouraging the development of palliative care training. As part of this initiative to raise awareness and address the need for palliative care, the TOG organised a conference in Istanbul during October 2004, dedicated to developing home-based palliative care programmes. Dr Seref Komurçu reported:

‘After that meeting we invited some people from government and from insurance companies, so they learned something about home-care programmes and the need for the programmes. So I believe that meeting helped a lot, and there were some discussions about the new regulations on home care, and I think three weeks ago regulations were done. The government asks our Society about home care: how it can be controlled and to what standard. We gave some opinions, and the government also took some other ideas from some other organizations.’⁴⁶

Although, the Turkish Oncology Group have supported the concept of palliative medicine for medical oncologists and other interested healthcare professionals, professional oncology nursing organisations are not yet involved in developing specialist palliative care training.⁴⁷

In June 2004, Turkey joined the Middle East Cancer Consortium (MECC). MECC, funded by the National Cancer Institute, Bethesda, USA, is involved in helping its 6 member countries to develop a standardised cancer registry as part of its goal to raise cancer awareness and reduce the burden of cancer in the region.⁴⁸ MECC organises and offers free places at its seminars and conferences for its member countries’ healthcare professionals. From February 2004, MECC has been supporting initiatives to assess palliative care provision, needs and training.