THE HISTORY OF THE DEVELOPMENT OFPALLIATIVE CARE IN TURKEY
Since the early 1990s there has been an increasing awareness for the need of developing a national palliative care program (NPCP) in Turkey that includes not only pain relief and symptom control but also the psychosocial needs for end-of-life care of patients and their families.
The concept of palliative care has improved and disseminated slowly in Turkey; however, the development of methods for pain management has improved fast. In 1998, the Association of Pain was established by Dr Serdar Erdine. Several clinics of pain were developed with a later initiative.
Some pain specialists and oncologists have recognized the need for palliative care services, and a number of doctors have sought palliative medicine training overseas and have returned to Turkey to encourage training and development in palliative care in their own units. Dr Seref Komurcu, after finishing his palliative care fellowship (the first palliative care fellow in Turkey) in The Horvitz Center at The Cleveland Clinic, between 1997 and 1998, initiated The Subgroup for Supportive Care in Cancer (SSCC) in the Turkish Oncology Group. SSCC was formed in 1999, and consisted of 45 members (medical/radiation oncologists) from 18 different centers. Some initiative oncologists including Seref Komurcu, Ozgur Ozyilkan, Filiz Cay Senler, and Deniz Yamac organized several meetings and studies to increase the awareness of health-care professionals of supportive care to patients with cancer, end-of-life care, communication, and so on (Table 1).
Sixteen investigators of SSCC published a special issue of Hematoloji-Onkoloji Güncel Derleme Dergisi on “Control of Symptoms excluding Pain” as a Turkish reference in 2001.
Several members of SSCC translated The Council of Europe report (Rec 2003/24) on Organization of Palliative Care (Recommendation 24 of the Committee of member states) into Turkish language and distributed it to medical centers, the Ministry of Health, and other places related to the organization of palliative care.1
The European Society for Medical Oncology Handbook of Advanced Cancer Care was translated by some SSCC members into Turkish language and it has been used by students, physicians, and nurses who deliver palliative care in their clinics.2
Turkey joined the Middle East Cancer Consortium (MECC) in June 2004. MECC is funded by the National Cancer Institute, and supports 6 member countries to develop cancer registry, increase cancer awareness, and reduce the burden of cancer in the Middle East.3 MECC organizes conferences for health-care professionals and supports initiatives to develop palliative care in the region.
There were no national guidelines or government support for palliative care until 2008 in Turkey. Some initiatives, driven by the Ministry of Health, Cancer Control Department, and the members of several organizations including Turkish Oncology Group, Palliative Care Organization, Medical Oncology Organization, Association of Pain, have started the NPCP by setting up a palliative care committee with the initiatives in universities and have invited palliative care leaders from the World Health Organization. During the last 2 years of active work, the Palliative Medicine Committee held many meetings with the Ministry of Health, the conferences were organized, and finally palliative care action plan was prepared.
Recently, the Ministry of Health and Palliative Medicine Committee have been preparing the education program of palliative care for all health-care professionals.
Presently, there are just a couple of palliative care services in university or government hospitals. However, medical oncologists, internists, anesthetists, family physicians, and pediatricians provide some form of palliative care in services. Although there are a few education programs on symptom control, formal comprehensive palliative care curriculum is not yet present. Hospitals and their staff are not organized or trained to provide holistic palliative care. According to the action plan of NPCP, palliative care units will be built in all university and government hospitals with the determined standards.
Recently, 290 home-care units have been set up in 71 cities. Several private home-care programs are present. Some new regulations are being regulated for defining the standards of palliative care program and reimbursement issues. Hospice programs are not widely applied, and just a couple of hospice programs are present. End-of-life care is given in the inpatient setting, and most of the patients stay at home at their end-of-life period, and some patients prefer to stay at hospitals in their terminal stage. No hospital had a policy on advanced directives including proxy, living will, and DNR (do not resuscitate).
Costs may be partially (or completely) covered by governmental social insurance (SGK), by the Green Card scheme, or by private insurance for patients who need palliative care in hospitals.
PALLIATIVE CARE BARRIERS IN TURKEY4
* Lack of social and health-care personnel awareness about palliative care
* Separating antitumor treatments from palliative care
* Lack of opioids in the market
* Insufficient economic support
* Absence of trained health-care personnel
* Inequality in the distribution of resources
* Lack of regulations on palliative care
Opioids are often available to meet the needs of patients with chronic pain. However, Turkey has a complicated, restrictive, and burdensome regulatory system for prescribing opioids that makes it difficult for outpatients to receive pain medications such as morphine. Turkey has a color-coded prescription system; red prescription sheets for strong opioids and green ones for sedatives and weak opioids. White prescription sheets are used for all other drugs. There is a dosage limit for morphine and other opioids. Supply is limited to no more than 300 mg of morphine-HCl ampoules, 2700 mg morphine sulfate tablets, 1 g of codeine, and 1500 mcg transdermal fentanyl per prescription. Patient controlled analgesia morphine pumps (intravenous, intrathecal, epidural) and all types of nerve blocks are performed in algology departments in university hospitals.
Only codeine, tramadol, slow-releasing morphine, hydromorphone, and fentanyl are the available opioids in Turkish markets. Short-acting oral morphine, oxycodone, methadone, and the other opioids are not available. The average defined daily dose consumption of morphine during 2000 to 2002 in member countries in MECC is shown in Figure 1.5,6 This shows that morphine consumption remains relatively low. Transdermal fentanyl usage has increased a lot for the last 3 years, as morphine has not been generally available in the Turkish market.
Barriers to use of opioids:
* Exaggerating the side effects of opioids (addiction, respiratory depression etc.)
* Absence of weak or strong opioids in the market
* Regulatory difficulties related to prescription dose limits, heavy official controls
* Doctors', patients', and chemists' fear of opioids
Generally, Turkish people have a tendency to die at home cared for by their family. Turkish family is usually suitable for caring patients at home. In rural areas, homeisstill the most common place for death. Between1980 and 2000, there has been a radical shift for the place of death in Turkish people toward hospitals, particularly those who have migrated to urban areas.7 With this change in socioeconomic patterns, fewer women areavailable to care for relatives at home as they are working outside.
There is a difficulty in Turkey of informing cancer diagnosis to the patients, because cancer diagnosis may be regarded as death for them.
Turkish culture has tended toward a “paternalistic attitude” in the physician. There are signs that physicians' and public attitudes are changing, along with changes in legal responsibility toward patient's rights and autonomy; these changes are essential to encourage greater openness.8,9
Although most of the Turkish people know that they are at the end-of-life phase, they do not mention it; approximately 50% can talk about end of life or cancer, but some do not want to talk about it. Doctors act according to the patients' desire and readiness to determine how much to talk.
The practice of euthanasia or assisted suicide, which is not legal in Turkey, for patients suffering from refractory symptoms has been being discussed in meetings about medical ethics since the mid 1970s. There is a comment that improved training on better pain management will decrease the suffering, and consequently decrease the call for euthanasia and assisted suicide.9
RECOMMENDATIONS FOR IMPROVING PALLIATIVE CARE
A national cancer control policy and palliative care program
A national hospice/palliative care association
National guidelines for symptom management and end-of-life care
Certification programs for doctors and nurses
Palliative care programs in inpatient, outpatient, and home-care settings
Reimbursement issue for home-based palliative care
Pediatric palliative care services
High opioid levels determined in the International Narcotic Control Board
Morphine production by the government
Patients with cancer are still suffering a lot, especially those in developing countries including Turkey. It is essential that improved palliative care program should be integrated into national health-care systems to control this suffering.