- Sahin Aksoy M.D., Ph.D. Harran University Faculty of Medicine, Department of Medical Ethics and History of Medicine, Sanliurfa-TURKEY Email: firstname.lastname@example.org
Death, the end of life, is one of the most real things in life. Therefore it has always been the major concern of people to meet with it. It is not the death but the process of dying worries people. Although the moment of death may be at any time, for some reason, it has been perceived as identical with the old age. Much research has indicated that almost in every country, particularly in the developed countries, aged population increases, which brings extra burden to the health care systems and social services. The diseases encountered in old age are mostly chronic and long lasting, which necessitate the provision of health care services in long and costly manner. This, inevitably, brings the problem of the distribution of limited sources into discussion (Aksoy, 1998:419).
Before getting into detail on end of life decision-making, it is of benefit to give some basic information about the country. Turkey is a nation state with almost 68 million population comprising people from different ethnic backgrounds. The male and female populations are almost equal to each other. It has a young population with 55% under the age of 20 (Republic of Turkey, Prime Ministry State Institute of Statistics, 2002). The major faith tradition in Turkey is Islam (95%). There are some Jews, Christians and others. Although Turkey is a secular state by its governmental system, since there is such a great majority of Muslims with a long tradition, religion plays a significant role in ethical reasoning in public mind, though not in official level. The rate of population over 65 is 8%, and the life expectancy at birth is 70.2. (Republic of Turkey, Prime Ministry State Institute of Statistics, 2002) Turkey is a unique country in its region as a Muslim State officially committed to adapt western life style and tradition.
Every country has its own priorities in health services. Although most attention in the West has focused on the elderly as terminal patients, in some countries the major focus might be on younger adult AIDS patients or on children dying from malnutrition or infectious diseases. Another important category, although much smaller in number, are critically ill or extremely low birth weight babies. In each of these categories, the issues might be similar but the solutions differ significantly from country to country. Turkey still has some problems in basic health services and preventive care, and the high infant mortality rate (39 deaths per 1000 births) compare to other European countries is an indication of this. Despite these negativities many other services are quite well developed in recent years. Table 1 gives some figures (Ministry of Health, 2001).
These figures indicate that, although it is not sufficient, the health care services, especially to inpatients have significantly improved in last few decades. In terms of palliative care Turkey has its own limitations. As it is seen in Table 1, the number of beds per 10,000 patients is only 25.8, which is 67 in Japan, 97 in Germany, 101 in France and 51 in UK. (The World Bank, 1997:44) This situation prevents doctors to keep patients for long in hospitals. The case especially applies to the terminal patients that need palliative care.
According to "Guideline for Health Care Services" (Ministry of Health, 2001:41) it is health centres' duty to provide services for patients with chronic and terminal diseases at the first level of health care services. The guideline suggests the personnel in health care centres to visit these patients regularly, keep their records, refer them to appropriate health care institutions if needed, planning their nursing care at home, provide their medicine, and guide their families. However despite these guidelines these services cannot be well provided due to lack of personnel and equipment as well as disorganization.
It is also argued that palliative care is a synonym for hospice (Cundiff, 1992:7). According to American National Hospice Organization hospice exists to provide support and care for persons in the last phases of incurable disease so that they might live as fully and comfortably as possible. Hospice recognizes dying as a normal process whether or not resulting from disease. Hospice neither hastens nor postpones death. Hospice exists in the hope and belief that, through appropriate care and the promotion of a caring community sensitive to their needs, patients and families may be free to attain a degree of mental and spiritual preparation for death that is satisfactory to them (The National Hospice Organization, 1982:1).
It is suggested in many research that having hospice facility in a country is good for people who would wish to use it. However, there is no hospice in Turkey, except some newly established hospice look-alike nursing homes. When we investigate the reason for this, we see that Turkish tradition plays an important role in the prevention of the flourishing of hospices. We have recently conducted a survey among 200 volunteers half of which were health care professionals. (Aksoy, Cevik and Edisan, 2002) We have chosen our samples from different gender, age group, profession, social background and educational level. We have conducted the research in four different geographical regions of Turkey, namely Ankara (Middle Anatolia); Izmir (West Anatolia); Sanliurfa (South Anatolia); and Erzurum (East Anatolia). Therefore we suggest that our survey is representative to give Turkish perspective on this subject. Our survey indicated that 47% of general public would not wish to send their relatives to hospices, even if they exist, since they see this as an indication of disrespect to the parents. This attitude may be due to the traditional belief derived from Islam that is so intimate to Turkish culture. It is so important for a traditional Turkish family to look after their parents when they are ill or elderly. It is not a virtue for children, but it is a duty. Nowadays, despite so many degenerations in the cultural framework it is good, for the social health of the society, to see that the respect to the parents remains unchanged.
As far as the health care professionals are concerned they are more reluctant to let their relatives to stay in hospice (Aksoy, Cevik and Edisan, 2002). More that half of them (55%) said that they would not wish their parents stay in hospice. Their main reason for this was they would provide better care for them at home. Although the great majority of the university graduates in general public prefer their relatives to stay in hospice, health care professionals (doctors and nurses) do not favor this.
In our survey we also ask to the general public and the health care professionals "If you know that you are at the terminal stage of an illness, would you prefer to stay in hospital or would you prefer to go home? Why?" While 54% of general public prefer to stay in hospital, 64% of the health care professionals prefer to go home. The main reason for the first group to stay in hospital was the hope to have a better care and not to sadden their relatives at home. Beside that, second group prefer to go home as they think there is not much to be done in the hospitals in terminal stage. It is possible to say that Turkish society is an altruistic one that always considers the favors of close relatives rather than themselves. They are mostly ready to sacrifice their comfort for others' convenience.
Decisions regarding place of care should be made in the context of the partnership between patient and professional; caring relatives must be included in the discussion. Whilst the patient must consider relatives' interests, those interests should not undermine the patient's right to be at home. In Turkey, as a paternalistic society, decisions are generally made not by patients but by the next-of-kin. Our research indicated that 55% of the public replied that they would let the patients decide for themselves.
Decision-making is an important process, especially in terminal stages of the illnesses. The moral quality of a clinical decision is dependent on the process of that decision and not only on the outcome. We are accountable and responsible for the way in which our decisions are reached. Since our understanding of the patient's perspective will always be limited, good communication and acceptance of the patient's view is essential in reaching the desired goal of a consensus decision. (Randall and Downie, 1996:79) It is pretty easy to make the 'right decision' if the patient can involve to the decision making process. Autonomous patients can choose the extent to which they wish to participate in decisions about these treatments; if they wish to be fully involved they are adequately informed. However, non-autonomous patients are unable to participate in deriving the balance of benefits to burdens and risk in the particular situation. Advance statements are offered as a solution in case of non-autonomous patients.
There is not a proper advance statement in Turkey. Even it is not legal to put Do-Not-Resuscitate (DNR) orders. However this does not mean that it is not practiced in clinics. Many doctors and nurses in anaesthesiology and reanimation departments reported to us that there are many voluntary and involuntary DNR orders are practiced in ICUs and the wards. Therefore there is no point to talk about the legal binding of advance statements and DNR orders. In recent years some Turkish bioethicists strongly suggested the necessity of advance statements and DNR orders. (Oguz, 2001:61) Oguz argues that a good application of DNR order, under the light of the concept of 'futility of treatment', the number of euthanasia requests will decrease.
Euthanasia is another ethical issue related to end of life decision making. The first euthanasia discussions had started in 1990s in Turkey. Official religious authorities and medical associations declared euthanasia as unacceptable. In those days there were very few people who have supported euthanasia in Turkey (Oguz, 1996:170). However, during the course of the time the research conducted in different centers have indicated that health care professionals, especially nurses support the assisted suicide and euthanasia (Bahcecik et al, 1998:345; Akcil et al, 1998:150; Ersoy and Altin, 2001:50). Despite these findings both passive and active euthanasia remain unlawful in Turkish Criminal Law. While passive euthanasia is considered as unintentional killing by law (Turkish Criminal Law. Article: 455), active euthanasia is punishable as intentional killing (Turkish Criminal Law. Article: 448) (Artuk, 2001:45) Like in all divinely revealed religions euthanasia is absolutely forbidden in Islamic understanding. (Rispler-Chaim, 1993:95)
The main reason to ask euthanasia is commonly unbearable pains. Therefore the availability of pain management facilities is very important in health care institutions. Most of the general public believes that physicians and nurses do all that is humanly possible to control pain from cancer or other fatal diseases. Few people realize that most physicians should be much better trained to treat the physical and psychological symptoms associated with terminal illness than they are. As a result, many people develop a sense of hopelessness, thinking that little can be done to relieve the pain and suffering of the dying process (Cundiff, 1992:10).
Pain management services are usually run by anaesthesiology departments in Turkey. However, in recent years, some centres set up new departments dealing only with pain management. Although anaesthesiology specialists are competent on relieving pain in terminal illnesses, most medical and nursing school do not teach palliative care and pain management at desired level, therefore general public in Turkey have fears regarding to pain accompanied with cancer and terminal illnesses.
In the current understanding of modern bioethics the respect for autonomy is a prima facia obligation. Patients are wanted to be in the centre of the decision making process, especially at the end of life. It is argued that all patients have a 'right to know' about their illness and available treatments. Honesty and openness is fundamentally important at the end of life decision-making and in fatal diseases like cancer. Today it is believed that paternalistic attitude of health care professionals should change and patients are informed about their conditions. Patients should be told at least as much of the truth about their illness as they wish to know. They do not have an absolute right to remain in ignorance of aspects of their illness, which have a major impact on their family, professional carers, or the community. However, our research also indicated a very typical attitude in Turkish society on this matter. We asked two questions; (Aksoy, Cevik and Edisan, 2002) the first one was, "If you have got a fatal disease like cancer, and you are in terminal stage of the disease. Would like to know this, or would you prefer it to be told one of your close relatives?" and the second question was, "If one of your close relatives have got a fatal disease like cancer, and he is in terminal stage of the disease. Would you like him to know this, or would you prefer to hide it?" 61% of general public and 89% of health care professionals wanted to know their own diagnosis, but 58% of general public and 71% of health care professionals preferred to hide the diagnosis from their relatives. These replies were quite interesting and full of double standard. The majority of people wanted to know their own diagnosis but do not let others to know about the real nature of their diseases. Although it seems as unjust, the rational behind it is quite innocent. They generally think that they can carry the burden of this bad news but their relatives may not be able to do this. They just do not want their families to be sad. There are also other studies that support our research. (Samur et al) It is possible to say that it is a characteristic attitude for Turkish people to neglect others autonomy in the name of being more protective.
The training of health care professionals is very important for a better health care service. We wonder whether doctors and nurses in Turkey are trained properly to deal with terminal and dying patients. We asked "Have you had any courses on how to deal with a dying patient or a patient who is terminally ill?" The result was very surprising for us. We see that while all nurses (100%) have had a course on this subject, but almost none of the doctors (5%) have had a course or lecture on how to deal with a dying patient or a patient who is terminally ill. This result shows us that although Turkish doctors are well trained on scientific/medical aspect of medicine, they are not well informed about the social/ethical side of it. We have reported this fact to relevant authorities, and suggest them to give some courses to medical students on medical ethics and communication skills as we have been doing in our faculty for along time.
End of life decision-making is an important subject in medical ethics. In this paper I tried to give relevant information on this matter in Turkey. There is no doubt that comparative studies give us cross-cultural insights as to what works or does not work in a wide variety of institutional and value contexts.
1) Akcil, M., Bilgili, N., Turkan, S.K., Yardim, M. and Yildiz, A.N. 'Universite Son Sinif Ogrencilerinin Otanazi Konusundaki Gorusleri' (Views of Final Year University Students on Euthanasia). Proceedings of 3rd National Bioethics Symposium. Ankara, 1998:149-158. (In Turkish)
2) Akpir, K. 'Yogun bakim hastalarinda hasta destegi ve devami ile ilgili kararin verilmesi.' (Decision making on patient support and maintenance in ICU patients.), Medikal Etik, Vol.3 (2001):28-34. (in Turkish)
3) Aksoy, S. 'Saglik Kaynaklarinin Dagitiminda ve Tedavi Kararinin Verilmesinde Kullanilan Kriterlerin Etik Tartismasi' (Ethical Discussion of Criteria Used in the Distribution of Health Care Resources), (eds.) Pelin, S., Arda, B., Ozcelikay, G., Ozgur, A. ve Senler, F. 3. T?bbi Etik Sempozyumu Bildirileri, Ankara, 1998 :419-24. (in Turkish)
4) Aksoy, S. 'Can Euthanasia be Part of a 'Good-doctoring'?' Eubios Journal of Asian and International Bioethics, 10:5 (2000), pp.152-154.
5) Aksoy, S., Cevik, E. and Edisan, Z. 'The Attitudes of Turkish People on End of Life Decision Making'. 2002: Unpublished research prepared for publication. 6) Artuk, M.E. 'Hukukcu Gozuyle Otanazi' (Euthanasia from Lawyer's Perspective). In Ed. Hatemi, H. and Dogan, H. Medikal Etik. Yuce Publication, Istanbul, 2001:42-60
7) Bahcecik, N., Alpar, S.E., Yildirim, Y., Temiz, G., Ozen, C. and Keles, S. 'Hemsirelerin Otanazi Konusundaki Gorusleri'. (Nurses' View on Euthanasia) Proceedings of 3rd National Bioethics Symposium. Ankara, 1998:339-348. (In Turkish)
8) Creese, A. and Parker, D. Cost Analysis in Primary Health Care. World Health Organization, 1994.
9) Ersoy, N. and Altun, I. 'Hemsirelerin Yardimli Intihar Hakkinda Gorusleri ile Ilgili Bir Calisma' (A Study on Nurses' Views on Assisted Suicide). Turkiye Klinikleri Journal of Medical Ethics. 9:2001:49-55. (In Turkish)
10) Oguz, Y. 'Euthanasia In Turkey: Cultural and Religious perspectives' Eubios Journal of Asian and International Bioethics 6 (1996), 170-1.
11) Oguz, Y. 'Tip etigi acisindan yasamin son doneminde karar verme surecleri.' (End of life decision making processes from medical ethics perspective.) Medikal Etik, Vol.3 (2001):61-67. (in Turkish)
12) Randall, F. and Downie, R.S. Palliative Care Ethics. Oxford University Press, Oxford, 1996.
13) Republic of Turkey, Prime Ministry State Institute of Statistics. http://www.die.gov.tr/ENGLISH/index.html
14) Rispler-Chaim, V. Islamic Medical Ethics in the Twentieth Century. E.J. Brill, Leiden, 1993:94-99.
15) Samur, M., Senler, F.C., Akbulut, H., Pamir, A. and Arican, A. 'Kanser Tanisi Almis Hastalarin Bilgilendirilme Durumu.' (The Level of Information of the Patients Who were Diagnosed Cancer) in Arda, B., Akdur, R. and Aydin, E. 2nd National Medical Ethics Congress Proceedings. 18-20 October 2001 (Kapadokya):510-519. (in Turkish)
16) The Ministry of Health, Saglik Hizmetlerinin Yurutulmesi Hakkinda Yonerge (Guideline for Health Care Services). Ankara, 2001. (in Turkish)
17) The National Hospice Organization. 'Standards of a Hospice Program of Care'. 1982.
18) The World Bank HNP Human Development Network, 1997:44-45.
19) World Health Organization (WHO), Health 21, Copenhagen, 1999:37.