End-of-Life Directives and Advance Care Planning

In a developing and changing world, advances in science and technology have brought great progress in healthcare. Alongside this, developments in the social sciences have enabled the recipient of healthcare services—the patient—to take the role of the "primary decision-maker". In other words, individuals have gained the right to decide on possible treatment options when they become ill. Patients now give, or withhold, signed approval for interventions to be performed on them through informed consent forms. However, there are also situations in which patients cannot make decisions about themselves, and the structured process that allows patients to have a say in the healthcare services (treatments and/or medical care) they will receive if they become unable to make their own decisions is called an ADVANCE CARE PLAN (advance care plan).

What Is Advance Care Planning?

Known in the international medical literature as an "advance care plan (ACP)", this approach has not yet found its place in the theory or practice of medicine in developing countries such as our own. Consequently, there is not yet a fully agreed Turkish equivalent in national medical terminology. However, considering the content of the concept and its translation from English into Turkish, "a medical care plan structured beforehand or in advance" could be a phrase that captures the terminology. A small number of Turkish publications use this or a similar expression. In a progressive disease that is expected to result in death, important and serious decisions about an individual's health may, of course, arise at the end of life. Through this process, in which information about the possible options is essential, an individual can exercise the right to make their own decisions on a matter of great importance to their life. In other words, they can leave their decisions about the end-of-life period in the form of a directive, referred to as directives for future care (advance directives). The Turkish equivalent can be expressed as directives for future care or end-of-life directives. During the advance care planning process, individuals engage in reflection and communication in line with their own values, beliefs and wishes. Otherwise, when they cannot express their wishes, healthcare workers (the treating physician and other healthcare workers) and/or those close to the patient (relatives and friends) are forced to make decisions during such a crisis that may differ from the patient's wishes.

How Did the Practice of Advance Care Planning Emerge?

It may be necessary to look more closely at the changing realities of the world that have played a role in the introduction of this approach into healthcare practice. One factor is that some medical treatments may be clearly futile for some patients. In other words, the concepts of futile treatment or medical futility have played an important role in the development of this approach. Administering a treatment that will not benefit a patient, or whose benefit will be less than its harm, can have undesirable consequences for the individual. This means facing a situation in which death is delayed or made more distressing in an incurable illness. - Related topic: Let us all avoid overtreatment that could cause loss of life in cancer! Would the individual accept these ineffective treatments if they were conscious at that moment? Is a further line of treatment appropriate for every patient? Or should a natural and dignified death be allowed? Another factor in the emergence of this approach is that futile treatment may involve the inappropriate use of healthcare funding. Although discussing the appropriate use of funding and how to measure it may sound unpleasant when human health is at stake, resources in healthcare also have limits. In this context, considering a limited resource from a financial perspective and using it appropriately in that respect are important. Redirecting the funding allocated to advanced life support and days of intensive care for a patient with an incurable disease to newborns or pediatric patients may also be a humane reality of the system. Another important factor is the expansion of the circumstances in which individuals can be decision-makers about their treatment. With the development and expansion of human rights and patient rights, the right to make decisions in advance for an individual whose state of consciousness is not suitable for decision-making has emerged. Two articles of the declaration consisting of 6 articles, issued following the meeting of the World Medical Association in Lisbon in 1981, are directly related to this subject: "After receiving adequate information, the patient has the right to accept or refuse treatment." "The patient has the right to die with dignity." To summarize, we can say that this approach emerged as a result of extensive legal, ethical and medical debate and research.

How Is Advance Care Planning Implemented?

Advance care planning is practiced primarily in the United States and some European countries. Community-based observational studies in the West show that medical decisions about the end-of-life period are discussed in 40-80% of cancer patients. This practice is not present in Far Eastern and Asian countries. The ways in which this system is implemented vary from country to country according to legal arrangements. In general, however, practices include "living wills", the designation of a "health care power of attorney", and a "Do Not Resuscitate = DNR" directive. A living will specifies how much life-sustaining treatment an individual wishes to receive when they are too seriously ill to express their wishes about treatment. Life-sustaining treatments are medical procedures that support or replace a basic bodily function, such as mechanical ventilation (breathing carried out by a machine), artificial nutrition and dialysis. By communicating these wishes to family members and/or the physician responsible for treatment, a living will enables individuals to exercise their right to receive the treatment they want and not to receive treatment they do not want. Such a request takes effect in the final stage of an illness and/or in a coma considered irreversible. Individuals can state in advance whether, or under what circumstances, they would wish to be connected to a ventilator for respiratory failure at the end of life from an incurable illness. The main purpose of a living will is to retain control over the prolongation of life through life-support methods when a terminal or incurable illness is diagnosed. Essentially, it expresses a wish for a natural death. A health care power of attorney is a dated, signed and witnessed legal document showing that a patient has delegated the authority to make healthcare decisions to a specified person if the patient becomes unable to make those decisions. Instructions about which treatments are permitted and which are not may also be added to this document. A Do Not Resuscitate directive (DNR=Do Not Resuscitate) is an instruction not to perform cardiopulmonary resuscitation to revive a person if their breathing or heartbeat stops. Giving a DNR directive does not affect the provision of treatments and medical procedures other than cardiopulmonary resuscitation. The patient continues to receive treatments such as dialysis, chemotherapy and antibiotics. Under the relevant law in the United States healthcare system, healthcare facilities are required to inform people about Advance Care Planning, but preparing a plan is entirely the patient's own choice. In countries where the practice exists, Advance Care Planning is implemented through different legal arrangements. While these legal forms are much more detailed in some countries, in other places, for example, a document containing only a sentence expressing the person's DNR decision and their signature may be sufficient. Advocates of the freedom to make decisions in this area may have statements about the subject tattooed on their bodies.

Conclusion

As stated at the beginning of the article, there is no such practice in Turkey. One important reason is that even a cancer diagnosis is still not discussed openly in our country. In our survey of Turkish oncologists at the National Cancer Congress in 2003, 9% of oncologists stated that they never disclosed a cancer diagnosis to their patients, while 39% stated that they rarely did not disclose it... The implementation of practices such as end-of-life directives and advance care planning largely parallels a country's level of development. It requires highly developed legal, ethical and health systems. The availability and use of medical advances in our country may meet the standards of developed countries and sometimes even exceed them. However, it must be said that we still have a long way to go in the legal and ethical dimensions, which play a more important role in this subject. Even though such an approach does not exist in our country, we have compiled this article to provide an understanding and information.