In palliative care, death, which is a part of human nature, is considered as a normal process. This type of care is concerned with the quality of life rather than its duration. In this context, the basic aim is to perform practices to relieve the patient in a way that does not raise any ethical suspicion. Within this framework, it can be said that palliative care is a requirement of medicine’s duty to help. The aim of this chapter is to draw attention to the importance of ethical values in the configuration of palliative care services for patients who are in the last period of their life or the ones who have terminal illnesses. In palliative care, it is essential to arrange care services in a manner that does not raise any ethical doubt about the measures taken to increase beneficence both to the patients who are in the last days of their life and to their relatives. In this study, “The Directive for Implementing Procedures of Palliative Care Services” prepared by the Ministry of Health in Turkey in 2015 will be evaluated in terms of ethics.
- medical ethics
- clinical ethics
- palliative care ethics
Ethics is a branch of medicine that deals with the questions as to the values such as “What’s good” or “What’s good for people” . Medical ethics is a branch of general ethics which centers on moral issues encountered in the field of health. In this respect, medical ethics is a field where the emerging moral issues, particularly the ones stemming from the medical advances witnessed in the twenty-first century in diagnosis and treatment tools, are discussed.
In health ethics, studies on the evaluation of moral priorities in the field of health and in legal, political, or institutional aspects and the analysis of their possible outcomes have been carried out. Different from medical ethics, health ethics deal with issues that concern a larger majority of the society. Ethical evaluation of health decisions made on a societal level and in accordance with the regulated norms, policies at hand, and supported projects is one of the topics of interests in health ethics.
The right to a healthy life is a fundamental human right. Everyone has the right to receive healthcare, and this right is guaranteed by the constitutions of nations. The right to healthcare is a positive right. Therefore, healthcare providers are expected to create opportunities for the beneficiaries. Besides, configuration of different kinds of health services in healthcare is essential.
There is a close relation between health ethics and the legal regulations for maintaining healthcare services. The significant point in terms of health ethics is that the legal regulations are drawn in an ethically acceptable manner. In this respect, “The Directive for Implementing Procedures of Palliative Care Services” prepared by the Ministry of Health in Turkey in 2015 will be evaluated in terms of ethics in the subsequent sections of the study . With that directive, it was aimed to provide medical, psychological, social, and moral support to both patients and their relatives when life-threatening diseases are at stake. It can be said that the Directive, which comprises basic ethical principles and their extensions, satisfies the expectations of patients and their relatives from palliative care services to a large extent .
Given that the organization of palliative care services across the country is a recent trend, it can be envisaged that palliative care will be accepted by healthcare demanders as an accessible and claimable healthcare service in the forthcoming years.
2. Palliative care and “confidence” in medicine
In the literature of medical ethics and philosophy, the necessity to perform certain actions or deeming them as necessary is considered to be a “duty” . The duty of a healthcare professional or a physician is based on carrying out an action that she/he is authorized or allowed to do in an appropriate manner. In established philosophical thinking, at least from Kantian thinking to modern philosophy, the concept of duty in ethics means acting from intention without any compulsion and believing that it is the right thing. As a requirement of social contract, the sense of duty forms the basis of behaving ethically. In this respect, regardless of any legal and juridical imposition, healthcare professionals feel themselves responsible for the practices they perform and act accordingly and provide healthcare services to patients. It is imperative that healthcare professionals carry out their duties in accordance with the medicine’s raison d’être in order to maintain the confidence in medicine.
Healthcare professionals are expected to care for patients and be sensitive to their needs. The thing to consider here is paying regard to beneficence to the patient and helping the patient improve his/her current condition. A relationship based on trust between the healthcare professional and the patient or the patient’s relatives is a prerequisite to pursue the implementation of healthcare services at the optimum level. Providing healthcare services to anyone who requests it is one of the most fundamental duties of healthcare professionals.
Palliative care is not centered solely on patients; it also covers the practices such as fulfilling the needs of patients’ relatives as well. This includes helping the patient’s relatives in the mourning days, after the loss of the patient. Palliative care service is carried out by a team, and each step of the process is accompanied by healthcare professionals qualified in their field.
The World Health Organization (WHO) defines palliative care as follows:
“Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual” .
The emerging points in the definition of the WHO are:
Palliative care ethics focuses on moral problems related with the end of life.
Patient care shall not be defined just with medical procedures; social, cultural, economic, and belief systems are also the important components.
Human is a creature who must be respected; therefore, the quality of death should be equally esteemed as the quality of life.
In societies where the philosophy of palliative care is not fully comprehended, such care practices are frequently confused with other practices. It should be noted that palliative care is not:
Letting the patient to die
Assisting the patient to die
Speeding up the patient’s death
Sustaining the life in an artificial manner
The quality of palliative care is closely related to “confidence” in medicine. In order to provide palliative care to a patient in the last days of his/her life, it’s imperative that the patient demands this care at his/her own request and approves of it. The patient should be informed about the purpose of palliative care and the possible benefits of it. It is crucial that the patient has competence to give such a decision and approve of the procedure. Within the context of medical ethics, competence means an individual’s ability to make autonomous decisions concerning his/her own health . When a competent individual whose life is coming to an end loses his/her competence, he/she must have unconditional confidence in medicine as to what kind of healthcare he/she will receive. It is disputable how to act in conditions where competence is lost due to the cultural values in different societies. Therefore, the most ethically appropriate act would be taking into account the decision that the patient made when he/she was still competent and assuring the patient in this regard when she/he had competence.
3. Palliative care and the patient’s “compelling” medical condition
Recently, a number of opinions have been generated as to the fact that care services to be provided for life-threatening diseases shall not be limited to medical theories and practices and that the related culture, economy, society, and political environment must also be taken into account [5, 6]. In palliative care, life-threatening diseases are needed to be handled with a holistic approach, and for this reason, a care service performed by a multidisciplinary team is offered to patients and their relatives. In palliative care, ethical values specific to this “challenging” period are emphasized, and suggestions for resolving ethical problems are debated [7, 8].
Contemporary palliative care began at the end of the 1950s by means of observing dying patients and providing healthcare services to them. Dr. Cicely Saunders observed dying patients and stated that an interdisciplinary team could be able to alleviate the pain of dying patients and their relatives. Today, providing end-of-life care with a team of healthcare professionals constitutes the core of palliative care services. Dr. Elisabeth Kübler-Ross, who was a psychiatrist in the USA in the 1960s, emphasized in her book
Today, palliative care is given to patients from various age groups and for different illnesses. The difficult conditions in which the dying patients or patients with chronical diseases and their relatives go through might cause health professionals to feel themselves desperate in providing healthcare to them, just like a family mourning for their child would feel . It was reported that when the risk of losing a family member emerges, it influences all members negatively . A previous study emphasized the importance of giving the families reliable and comprehensible information during those challenging times. In that study, it was also pointed out that the technical information which medicine offers is not sufficient and must be reinforced with emotional care, which is also an important aspect . In addition, it was emphasized that communication skills and ethical professional values still constitute the essence of medical practices despite the increasing use of advanced technologies and increased information in the field of health . Paying regard to the humanistic side of medicine in the delivery of palliative care services to patients and their relatives is possible only when health professionals develop an ethical sensibility and have ethical conscience.
Hospices constitute an alternative to hospital-centered care. The purpose of hospice care is to provide an effective pain treatment in order to bring symptoms such as nausea, vomiting, diarrhea, and weight loss under control and to relieve the patient through nutritional and ventilatory support. It is different from conventional hospitals in that its priority is, within the bounds of resources available, to help dying patients and their relatives before their lives come to an end. These days, the interest in hospices is increasing due to the aging population, and this brings about ethical problems. The most notable ones among the problems encountered in hospices include upholding resident autonomy, managing family distress, lack of staff communication, and lack of time . It is clear that providing healthcare services in hospices with an approach that pays regard to the values of patients and their relatives will increase the confidence in these newly developed health centers.
4. Proliferation of palliative care practices in Turkey
According to Tanrıverdi and Kömürcü, studies on structuring palliative care services in Turkey started with the initiatives of the Society of Algology, which was founded by Dr. Serdar Erdine, an anesthesiologist and reanimation specialist, in 1998, and the early studies carried out on pain palliation . In the same period, medical oncologist Dr. Şeref Kömürcü studied the concept of palliative care in oncology. Following these initiatives, “Supportive Treatments Study Group” was established in 1999 within the body of the Turkish Society of Oncology Group. The Cancer Dispensary, which was established in Turkey by Turkish Oncology Foundation and actively served between the years 1993 and 1997, is considered to be the first institution that is close to the concept of hospice where palliative care services are offered [16, 17]. This was followed by the establishment of Ankara House in 2006 by Hacettepe University Cancer Institute. The Ankara House, also referred to as “Hacettepe House of Hope” is a hospice that offers palliative care services and treatment and accommodation to cancer patients for a certain period of time. However, the House could not actively serve for a long time.
One of the reasons why proliferation of hospices in Turkey is a more recent process than in Western counties is believed to be the prevailing negative perceptions of the society on the concept of retirement home for old people, which has become a privatized healthcare service for the last decades . In today’s world, proliferation and improving the quality of healthcare institutions such as home care services, retirement homes, and nursing and rehabilitation centers for old persons reinforce the confidence in social aid and social service works.
Palliative care services have become more widespread through the project “Palya-Turk” conducted by the Cancer Control Department of the Ministry of Health. Nevertheless, when the existing need for palliative care in Turkey is considered, it can be said that the current palliative care services fail to fully meet this need . Besides, it has been pointed out that the palliative care provided in Turkey for patients with chronical diseases or the ones close to the end of life is perceived as a care service offered only to cancer patients . However, it is acknowledged that the primary issues to be dealt with are building a trust relationship between health professionals and patients and their relatives, enabling active participation of patients and their families to decision-making processes and improving the patients’ quality of life by means of avoiding futile treatments . Today, palliative care services are provided, though on a limited level, either at home or at health institutions depending on the type of illness.
4.1 The palliative care directive in Turkey and the emerging ethical values
“The Directive for Implementing Procedures of Palliative Care Services,” which regulates the minimum standards of palliative care centers founded within the body of inpatient health institutions, was put into effect with the regulatory dated June 07, 2015 and numbered 253 .
In these centers, patients can receive various healthcare services including physical examination, medical work-up, analysis, treatment, medical care and rehabilitation services, psychosocial support, psychosocial evaluation (distress, anxiety, depression, hope, loss, mourning, grief, and self-care), pain management (opioid use), nutritional support, and so on. In addition, the centers can also issue medical reports as to a patient’s need for medication, medical devices, and medical equipment.
The abovementioned Directive constitutes the framework for delivery of palliative care in Turkey. The backbone of the Directive is to improve patients’ and their relatives’ quality of life in order to alleviate or prevent their pain and suffering .
Objective, Scope, Basis and Definitions
A person’s life is important not only to himself but also to his family members, friends, acquaintances, and other people with whom he/she has an emotional relationship. Therefore, in palliative care, the cordial relationship that the patient establishes with his/her relatives and the well-being of the individuals apart from the patient are also taken into consideration. In this respect, one of the most important constituents of the Directive is that it enables patients to spend time with their relatives in an appropriate environment.
Besides, the Directive also aims to standardize the centers that provide palliative care in order to improve the life quality of the patients struggling with life-threatening diseases. This has stemmed from the intention to help structuring healthcare services in a sense that they are accessible and claimable and to bring a common perspective to the palliative care philosophy.
Establishment of centers, physical conditions and minimum standards for equipment, provision of transportation vehicles
In addition, receiving consultancy service from ethical committees for accepting patients to the centers with limited patient admission capacity should be fostered since this will save the responsible physicians from making the decision alone.
All kinds of information that the physician get in patient-physician relationship is dealt within the scope of professional confidentiality . In this respect, the Directive could also entail that physicians shall not reveal patients’ secrets or confidential information that they obtain from the encounters with patients. It is acknowledged that this liability of the physician should continue after the patient’s death or termination of the patient-physician relationship.
The Directive can be given as an example to the practices that reduce the patient load of the intensive care units where life-supporting treatments are performed and to the places where procedure and examination rooms are prepared for patients requesting palliative care when needed. Such practices can facilitate the access to treatment needs of other patients in the hospitals. In the literature, it was argued that when the patients requiring palliative care occupy beds in hospitals for a long time, it reduces the efficiency of the facilities offered in those hospitals .
Personnel assignment and minimum personnel standards, duty, authority and responsibilities
The trainings given to healthcare professionals in order to improve the quality of service should also cover the issue of identifying the ethical problems faced in palliative care. Therefore, training of the staff that is in charge of providing palliative care for patients with chronical diseases or the ones close to the end of life could eliminate the mistakes to be made out of ignorance. However, it is crucial to reinforce ethical knowledge education since it puts healthcare professionals who has benefited from this training in a situation where they confront their own values. It is obvious that provision of ethical education for those who provide palliative care services will contribute to building the ethical standards in palliative care.
Working Principles and the Scope of Service
Application for Palliative Care Services, Patient Admission,
Transfer and Transportation Principles
Seeing the patient and the patient’s relatives by the responsible physician both in the palliative care center and in the patient’s house has several advantages. Encouraging the patient to make an autonomous decision and listening to the patients and their relatives without governing them are ethically appropriate attitudes and behaviors.
Patient Rights, Termination of Service, Training, Supervision and Responsibility
As well as the principles that it recognizes, medicine is also renowned for the practices that it deems unacceptable on ethical grounds. Practices such as overlooking the health needs of patients with chronical diseases or terminal patients and disregarding their healthcare needs, for instance, are ethically unacceptable.
The conditions that patients or their relatives face might sometimes hinder them from pursuing a quality life. If they prefer, they can receive palliative care, which can give them a chance to have a fairly quality life. Palliative care is crucial for maintaining the confidence in medicine and cannot be considered separately from the medicine’s duty to help.
In Turkey, how and by whom palliative care should be given to a patient approaching to the end of his/her life is determined by the relevant directive. Providing the service in line with the legislation and regarding patient rights, professional ethics, and medical deontology is essential. In palliative care centers, under the coordination of Provincial Directorate of Health, health services are provided in collaboration with local authorities, other health institutions in the region, universities, and with other related institutions. Besides, the centers also take the responsibility to contribute to the training of the society by means of planning trainings that go beyond the institution.
The fact that the Directive involves the doctrine of informed consent, which is the reflection of the principle of respect for autonomy on medical practices, illustrates the importance attached to patient rights in palliative care services. Nevertheless, there are still issues to be dealt with such as identifying the ethical dilemmas, which may emerge due to telling the patients and their relatives the truth, giving them the bad news, and decision-making for the end-of-life decisions, and taking measures in order to solve them. Ethical mistakes that healthcare professional make out of ignorance might be eliminated if their knowledge on the issues not covered in the Directive is reinforced through in-service trainings.
Early identification and assessment of life-limiting diseases match up with the raison d’être of palliative care services. In this context, palliative care aims to support both the patients and their family members who encounter such problems when it comes to life-threatening diseases. In order to identify the ethical problems seen in palliative care services in Turkey, qualitative and quantitative studies are needed to be carried out. As palliative care services become a more common practice in Turkey and more sophisticated solutions are offered as to the ethical problems encountered in practice, the structure of the palliative care service delivery will also go through transformation.
Conflict of interest
The author declares that there is no conflict of interest regarding the publication of this article.
This chapter is an expanded version of the article published in the Supplement Issue of Journal of Anesthesia (JARSS) with the title “Palliative Care Services Directive and Ethical Values” (see Şükrü Keleş, “Palliative Care Services Directive and Ethical Values”. Journal of Anesthesia (JARSS). Supplement. 2017, 25(3):15–19).