Palliative care, according to the World Health Organization, is the active total care of patients whose disease is not responsive to curative treatment. Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is the achievement of the best quality of life for patients and their families. Many aspects of palliative care are also applicable earlier in the course of the illness in conjunction with active treatment.1
Palliative care services need to be integrated and balanced with other care services to address the needs of patients and their families. Symptom control and supportive therapies are necessary throughout the illness of the patient, although the proportion of palliative care services varies with the trajectory of illness of the patients and the setting in which they receive care.2
THE CURRENT STATUS OF PALLIATIVE CARE IN TURKEY
Since the mid-1990s there has been a growing awareness for the need to develop a palliative care service in Turkey. However, a significant proportion of the Turkey population still does not have access to palliative care. The majority of patients with cancer are treated in university hospitals that have support units with pain specialists and medical oncologists. There are no specialist palliative care services in Turkey. Medical oncology units and departments of algology (pain) at major hospitals in the country provide pain control and symptom relief.3
Palliative care has not yet been incorporated in the National Health Policy. However, the Turkish Ministry of Health has started a “National cancer control program” with the World Health Organization. It organized a workshop to integrate palliative care into existing health-care systems in 2008. The Ministry of Health developed strategies to develop awareness about palliative care among medical professionals and the public, extend palliative care services throughout the country, and ensure that all patients with cancer requiring palliative care can get that service.4
SITUATIONS AND BARRIERS TO PALLIATIVE CARE NURSING IN TURKEY
Lack of palliative care education and training opportunities is the most frequently reported barrier to the development of palliative care in Turkey. Palliative care is not integrated into the obligatory syllabus for both undergraduate and postgraduate nursing curricula. There is little palliative care education for undergraduate and postgraduate nursing students in some nursing schools.
There is a continuous and growing trend among health-care professionals to learn about palliative care. Palliative care is still not part of the undergraduate nursing curriculum. Nurses acquire his/her palliative care knowledge and skills after graduation, from programs with different formats: workshops, seminars, and symposiums. This postgraduate learning relies mostly on reading material without clinical training.
Certification for Palliative Care Nursing
This multidisciplinary graduate certificate program in Palliative and End-of-Life Care is designed to prepare health-care professionals, from a broad range of disciplines, to assume leadership roles within a variety of agencies to incorporate and improve palliative and end-of-life care to patients and families.
What Can Be Done?
* Assess which nursing schools have curriculum on palliative care and what is being taught in this area.
* Review and recommend evidence-based curriculum to strengthen the teaching of palliative care concepts to nurses.
* Establish interdisciplinary education on palliative care concepts in nursing school.
* Expand palliative care continuing education for nurses who work in clinical area, home-care services, and primary care.
* Design to certification for palliative care nursing.5
There is very limited research about palliative care in general and about nursing in Turkey. Owing to the lack of data collection and analysis, there is limited country information about the number of patients who receive palliative care; how and where they die; practices; and clinical, organizational, and economic issues related to the caring process.
What Can Be Done?
* Establish interdisciplinary research on palliative care concepts.
* Increase funding for research.
* Increase the number of journal articles that have been published on palliative care and pain control.
* Encourage nurses to carry out research on palliative care.
AWARENESS AND RECOGNITION OF PALLIATIVE CARE
People are not very well informed about the palliative care in Turkey. The public awareness of palliative care services is not as good as it should be. The public does not know what the terms palliative care and healthy dying mean.
Cultural differences in attitudes toward illness or death between health-care providers and patients and families can be a barrier to proper end-of-life care.6 Death from cancer is still greatly feared in Turkish society. The relatives of patients may find it hard to discuss the incurable nature of a disease, and family members often do not want the patient to be fully informed. Telling the truth to relatives but not to the patient is a frequently encountered problem in Turkey.7 The qualitative study carried out by de Graaff et al8 (2001) showed that patients and their families with a Turkish or Moroccan background often have different ideas about “good care” than their Dutch care providers. Patients and their families do not just want curative care; good care implies maximum medical treatment and diagnosis. This often means that people want a “second opinion” and will ask for medical tests or (chemo) therapy at a very late stage. The interviews showed that, for the patients and their families, good care implied that care providers should use their knowledge and skills until the very end to try to cure the patient or, at least, to keep him alive as long as possible.
Palliative care means that there is nothing to do for the patients and the relatives of the patients. Therefore, palliative care education needs to be made available at the family, community, and national levels. Patients, families, and caregivers need good information regarding the illness, symptom control, options for care, and how care can be provided.
Public palliative care education must be delivered in a culturally sensitive manner that is accessible to every segment of the population. Media campaigns can be effective in promoting awareness of palliative care issues, as can resource centers and overall community participation in care.
What Can Be Done?
* Find ways to overcome cultural barriers to adopt honest disclosure in daily practice.
* Increase public awareness of palliative care.
* Assess nursing curriculum on end-of-life issues.
* Integrate with the concept of healthy dying in the nursing curriculum.
* Establish partnership with community-based organizations that work with the specific populations.
* Develop and disseminate through community-based organizations by educational materials tailored to those populations.
* Evaluate current media coverage of palliative care issues using a clipping service.
* Assess existing public awareness channels such as websites and hotlines.
THE NUMBER OF PALLIATIVE CARE NURSES
Turkey is currently facing shortage of nursing staff and this is affecting palliative care nursing. Palliative care is not recognized as a nursing specialty in Turkey.9 There is no certification of palliative care nursing.
What Can Be Done?
* Create a plan to promote certification of palliative care nurses.
* Disseminate information on certification of palliative care nurses to agencies such as hospitals, clinics, and health-care facilities.
* Offer more palliative care certification courses and work to increase attendance in underserved areas.
AVAILABILITY OF/KNOWLEDGE ABOUT OPIOID ANALGESICS
A frequently reported barrier to the development of palliative care nursing is the limited availability of/knowledge about opioid analgesics. In Turkey, the lack of availability and choice of opioids are identified as problems. Lack of professional knowledge about the prescription of strong opioids among physicians and other health professionals is reported to be a problem in Turkey. This often results in reluctance and fearon the part of doctors to prescribe necessarydoses of opioids to patients.
A lack of palliative care nursing education and training programs may also result in limited knowledge about opioid analgesics among nurses.
PALLIATIVE CARE TEAMS AND COORDINATION AMONG SERVICES
There is no special palliative care teams in Turkey.3 There are some doctors who received special education about palliative care in other countries. There are some nurses and doctors who received palliative education by seminars, congress, and so on.
The lack of a coordinated referral system to access palliative care services is a potential barrier to the development of the discipline. The lack of coordination among palliative care providers may make it difficult to deliver an integrated health-care service.5
Lack of government awareness and recognition of palliative care often means that political sources necessary to generate funding are absent or that palliative care does not feature in government financial targets.
NATIONAL PALLIATIVE CARE ASSOCIATION
National associations are important to promote national standards in palliative care education and practice, and to protect the interests of their members. There is a National association about palliative care in Turkey. It is a multidisciplinary association. Turkish Oncology Nursing Association was established in 1989.9 There is no Turkish hospice palliative care association yet, but it is set up as a subgroup for working palliative care nurses, as a brunch of Turkish Oncology Nursing Association. This group will try to organize a certification program for palliative care nursing.
Establishment of a national policy for palliative care is the best way to ensure quality standards, funding, and accessibility of adequate care for the greatest number of patients and families. A national policy serves as the official recognition of a commitment of financial support; it can play a major role in facilitating the availability of essential drugs and in the necessary educational initiatives for health-care professionals.
Nurses have a unique and primary responsibility for advocating for the right of patients to maintain their quality of life for as long as possible and to experience a dignified and peaceful death. The palliative care nurse should advocate that all patients and families with advanced illness have access to available resources.10