Dysthanasia or medical futility

Etymologically, the word dysthanasia comes from the Greek dýs, "evil" + thanasía, "death", which can be translated as slow death, with great suffering (Houaiss Dictionary 2001). In pragmatic terms, we may consider dysthanasia as the practice in health care that aims at "... prolonging the process of death by means of treatments that have the sole purpose of prolonging the patient's biological life." (Abel, 2001:314). This term, used with propriety by the world of ethics, is more foreign to health professionals, who more often adopt the colloquial nomenclature of different countries. In other words, it is more usual in the European world to speak of therapeutic obstinacy and in the Anglo-American world of medical futility (Pessini, 2009) [9].

Our concern is very much centered on the possibility of finding professionals who do not have a well-founded ethical training and who replace acts of care with invasive and disproportionate acts, in a vain attempt to do everything to save the person, bringing more pain and suffering. As Pessini states so well

This is the crux of the problem of "therapeutic obstinacy," or futile and useless medicine, or simply "dysthanasia," which can transform the end of our existence, making us mere prisoners of a technical apparatus that, rather than prolonging life at the end of a human being's life, transforms these moments into a veritable torture of pain and suffering (Pessini, 2016, p.55) [6].

This idea is also perceived by health professionals. According to Duarte et al (2017) [7], referring to oncologists from the clinical and university hospital of Santiago de Compostela:

From the experience of several decades of some members of the Oncology Service of our institution, the perception of the existence of therapeutic aggressiveness in cancer patients at the end of life in our environment has been generated. There are patients who die "badly", die in the hospital environment with little dignity, receive aggressive treatments in the advanced stages of their disease, without or with little information on the treatment plan and, in some cases, die alone". (Duarte et al, 2017, p.73) [7]. [translation ours]

What is the root and cause(s) of certain attitudes of prolonging human lives that are inexorably at an end? Why do health professionals, in certain circumstances, not suspend or initiate certain procedures to the person at the end of life as a sign of respect for dignity and not as synonymous with failure? Why do some families demand from health professionals every (un)possible effort to increase the precarious survival of their loved one?

Death, dying, and education

How do we die in our so-called digital society? Although we talk more about human death nowadays, it can be said with relative certainty that it is still a taboo subject (Barros de Oliveira,1998; Macedo,2020).

All taboos have fallen, like that of sex, but death is today, more than ever, forbidden to be shown, almost as something obscene or pornographic" (Barros de Oliveira,1998, p.16) [10].

This denial of death is inherent in the very actions of today's society because "technically it is admitted that we can die and take steps in life to preserve our own from misery. Truly, however, deep down inside ourselves, we do not feel mortal" (Ariès, 1989 p.16) [11].

The very place of death has changed over time. The process of dying as a life event has moved over time from the family and home environment to health professionals and the hospital. There were generations in which the dying person would die at home, say goodbye to the family, resolve the last commitments in life, and everyone would naturally attend this event. Currently, and since the 1960s, the advances in resuscitation and medical intensivism have led to the hospitalization of death (Macedo, 2019) [12]. In Portugal, not escaping this trend, 60% of deaths occur in hospital units (Machado et al, 2011; Gomes et al,2013) [13,14].

This social transformation of the place of death has led to a progressive forgetting of it in the community context and even, to its denial. If we add to this fact the technological advances especially directed to life support (ventilators and therapy), the development of adult intensive care units and, later, neonatal intensive care units, among other technological achievements, we have the necessary ingredients to lead the imaginary of health professionals to the possible triumph over death and the implementation of the practice of dysthanasia or medical futility. But, despite this, and to achieve a practice consistent with the ethical principles of safeguarding human dignity, it is important to understand in detail the justification(s) that health professionals allege to continue to act and/or participate in these acts.

Jox et al. (2014) [5] in a qualitative study, in which they interviewed doctors and nurses from intensive care and palliative care units of a hospital in Germany about the futility of care, highlighted the following causal factors:

- Personal justifications:

- Ignorance about palliative options;

- Hope for a miracle;

- Fear and worries about death, litigation, patient and family reaction if nothing was done;

- Other emotions: hope, grief, guilt, compassion, and pride struck;

- Institutional barriers:

- Delays in establishing diagnosis;

- Delay in establishing consensus;

- Delay in identifying the needs/wants of the patient or family;

- Considering professional ethics mandatory of this practice;

- Model of the hospital's automated care practice;

- Request of the patient and/or family in the maintenance of therapies.

From the data presented in this study, we found that health professionals deal poorly emotionally with the issue of death, present difficulties in the area of communication with the patient and/or family and in some cases, there are training deficits in the values and principles that support good clinical practice.

Despite this finding, we are of the opinion that there is an upstream measure that can help prevent this practice of unduly prolonging human life. As already mentioned, the concealment of death and dying in contemporary society contributes greatly to the difficulties that professionals face in caring for the person at the end of life. Society needs to (re)place the issues of the end of human life in the daily discussion, that is, integrate this experience in the curricula of compulsory education (Dickinson,2002; Clark, 2004; Macedo et al, 2010; Herrero et al,2020) [15-18], in the curricula of higher education, especially in health courses (Oliveira-Cardoso and Santos, 2017; Macedo 2020) [19,20] and, in the training of the population in general. Educating for the end of life, that is, creating conditions so that the issue of death and dying can be socially discussed in all its facets, with a strong focus on bioethical issues (Macedo, 2020) [20]. For health professionals, this continuous training will surely contribute to the fact that fear, anxiety, depression, and communication difficulties may be less present in the clinical relationship of certain borderline situations (Lester et al, 2016; Dafdar and Lester, 2019) [21,22].

Guiding documents for best practice in end-of-life care                                       

In this regard, we find that there are different approaches to establishing guidance standards to help healthcare professionals with decision making in the event of conflict.

In the United States of America, a report entitled Medical futility in end-of-life care by the American Medical Association (AMA) appeared in 1999 with the illustration of a procedural methodology with three phases and several steps until the decision of which treatments to suspend or not to initiate in the person at the end of life (AMA, 1999) [23].

In the United Kingdom, later in 2007, a manual entitled Withholding and withdrawing life-prolonging medical treatment, by the British Medical Association (BMA), was also released, which also provides guidance to professionals on ethical decision-making in a more analytical and descriptive way (BMA, 2007) [24].

In Portugal, the establishment of ethical criteria for good clinical practice emerged with the debate promoted by the Department of Bioethics and Medical Ethics of the Faculty of Medicine of the University of Porto (FMUP), which submitted to public consultation, in January 2008, at the National Consensus Conference on Withholding and Abstaining Treatment in Terminally Ill Patients, a set of ethics guidelines as a tool to assist in these complex decision-making processes (Nunes, 2009) [8].

Later, in 2014, the Council of Europe (CoE), through its Bioethics Committee, released a guide entitled Guide on the decision-making process regarding medical treatment in end-of-life situations, which presents, in a summarized and informative way, the principles that may be applied to decision-making regarding treatments to the person at the end of life (CoE, 2014) [25].

All these documents refer to the need to respect the dignity of the person at the end of life, and seek on this basis, in a more procedural or more analytical way, to find a consensus of principles that determine the best praxis.

Bioethical Principles

For a better deepening and theoretical foundation, we briefly analyze dysthanasia/medical futility under the four principles of Beauchamp and Childress' Principialist Model: autonomy, beneficence, non-maleficence, and justice. This model is one of the most disseminated in the Bioethics world and has a wide expression in clinical practice (Ferrer and Álvarez,2003) [26-28].

Autonomy

Beauchamp and Childress (1999) point to personal autonomy as the regulation of one's own, free, without external interference and personal limitations. It is important to recognize the capacity and legitimacy of the individual to take responsibility for personal choices. To observe good professional practice, the requirement of adequate information and freedom in the decision (without constraints or coercion) must be present. However, in the case of dysthanasia, when practiced, we are facing a clear disrespect for the person's autonomy and the adoption of a paternalistic posture. Autonomy does not imply the right to receive any and all treatment, especially when this is considered disproportionate.  Respect for this principle means that health care decisions, especially with regard to withholding and abstaining from treatment in end-of-life patients, require a compromise between the will of the person, with their values and beliefs, and the assessment of the health care professional observing professional duties (Council of Europe, 2014) [25]. In observation of this principle, there is an ethical and legal instrument in many countries, including Portugal, the Advance Directives of Will, or in a more reductive way, the Living Will, which allows the person to write a document in advance, which is binding for health professionals, stating what care they want or do not want to receive when they are in an end-of-life situation and are unable to express their will. This exercise of prospective autonomy leads, on the one hand, to the person's accountability and awareness of end-of-life care and, on the other hand, prevents possible dysthanasic practices or medical futility (Nunes and Melo, 2011) [2].

Non-maleficence

The principle of non-maleficence obliges health professionals to refrain from intentionally performing actions that may cause harm (Beauchamp and Childress,1999).  This principle does not oblige to prolong biological life, or to initiate or maintain a treatment, without taking into account the pain, suffering and discomfort it causes to the person. In this line, we note that attitudes towards prolonging human life, especially at the end of life, are clearly in collision with the maxim of professional ethics primo no nocere. In other words, the appropriate ethical guideline will be to refrain from treatments that are futile or disproportionate to the risks and constraints that may result (Council of Europe, 2014) [25].

Beneficence

Proper ethical conduct tells us that we should refrain from causing harm to others, but also contribute to their well-being. This is the core of the principle of beneficence, which is broader than the previous principle, since, in the case of health professionals, they must take positive action to achieve the well-being of others, and not only refrain from causing harm (Beauchamp and Childress, 1999). The prolongation of life at the cost of invasive and painful therapies is an action that is not guided by the positive promotion of good.

Justice

Briefly, when we speak of the principle of justice, and more specifically of distributive justice, we refer to equal, equitable, and appropriate distribution in society, determined by norms that build social cooperation (Beauchamp and Childress, 1999). In this line of thought, we think it is clear that the practice of dysthanasia or medical futility leads to the waste of human and material resources that could be useful and highly beneficial in people with the possibility of recovery. It has, in many circumstances, a high economic cost, wasting resources that could serve to increase the quality of community life and not to prolong biological life per se, combining pain and suffering.