The Human Right Court in Europe has alleged that although the Human Rights Convention in Europe protects the right to life, there is no human right to die (Haynes and Thompson 2017). This essay will go into depth about what the clinicians comprehend as a “good death” for the patients, and how under certain extreme circumstances, the law interferes with healthcare professionals’ moral believes also known as ethics. John Donne (1572-1631), who was an English poet, used to say: “The death of any individual diminishes you, because you are part of the humanity; so never wonder for whom the bells tolls: they chime for you too.” I will be using Gibbs reflective cycle (Gibbs 1988) to promote a better understanding of the events for the reader, and to discuss what we did as clinicians during the event, and what else we could have done (Oxford Brookes University 2019). For confidentiality reasons, and in order to comply with “The Caldicott Principle” (Oxford University Hospitals (OUH) 2018), the patient’s name has been changed for protection of this individual’s privacy.
It was a chaotic night like any other in the Emergency Department (ED). There was a constant flow of patients’ admissions whose medical circumstances were quite serious. Emergency Assessment Unit (EAU) was designed as a site for the patients’ transit. Patients on EAU are waiting for a bed on a specific ward, or the discharge home (National Health Executive (NHE) 2017). In some of the cases, their arrival to EAU is more related to their end of life and how their care will be approached from there.
Miss Novak arrived to EAU in the afternoon with an infection related to a bone marrow implant that she had put in just two months before; for more than a year, she has been fighting leukaemia, which is quite devastating type of cancer with only 46% of female survivors (Cancer Research UK 2013). The forecast after the transplant was encouraging; Miss Novak, who was only 19 years old at that time, was hopeful. It seemed that she would finally win the battle against her cancer. Leukaemia patient’s immune system is undermined, and minor infections can develop and become life threatening just within hours (NHS 2019a). During that afternoon Miss Novak was getting worse and around midnight, the infection had completely taken over her body. At that point, the infection was winning the battle against all the doctors’ attempts of increasing and modifying Miss Novak’s medication; the infection was not subsiding. Miss Novak was in complete agony; the nurse looking after her that night and myself, as her healthcare assistant, were going to her room every 15 or 20 minutes to reposition her in bed, comfort her and massage her aching body. Her parents who were always there, pleaded us to stop their daughter’s suffering. “She had enough” they said, – “please, I beg you, let her sleep with no more suffering.” When performing Miss Novak’s vital observations, we could clearly see that the medication was only prolonging Miss Novak’s suffering and pain.
At that moment, we both understood how Miss Novak felt and asked her the dreaded question – “How do you feel?” to which she replied – “I know that tonight is my last night. I do not want to suffer anymore; the pain is unbearable, I just want to say good bye to my parents and fall sleep.“ We did not know what to say, we left her room reassuring Miss Novak a her parents that if they needed anything we would be there all night. Immediately, the nurse called the doctor looking after Miss Novak and updated him on her medical situation, the medication was not effective and Miss Novak was in agony; likewise, the nurse told the doctor about the conversation we just had with the family and Miss Novak, and her wish to stop the treatment and have some sedation to alleviate the pain. The result of that conversation was not what we expected, the doctor wanted to carry on with the treatment and wait for an improvement.
Understanding the doctor’s decision was difficult for me and the nurse; on the other hand, doctors, as well as the rest of the healthcare professionals, must follow guidance of established ethical principles, which include certain obligations, such as showing respect for human life, protect the client’s health and treat them with respect and dignity (General Medical Council (GMC) 2019). This guidance follows the current law in the UK, including the law prohibiting killing, more known as euthanasia and assisted suicide, and the Human Rights Act 1998. However, there were other things to consider, such as Miss Novak’s capacity of making decisions – she was fully aware of the situation and her wishes were clear. Referring to National Health Service (NHS) Assessing Capacity (2019), all adults are presumed to have mental capacity to decide their own medical treatment, unless there is significant evidence to suggest otherwise (NHS 2019b). For instance, a client making a decision, which the clinicians would consider as irrational, does not necessarily lack mental capacity; however, the individual must understand the reality of the situation (NHS 2019b). My moral conflict and dilemma arose at that time, I could not understand why we could not respond to the requests of Miss Novak and her parents, and instead had to follow a fierceness treatment that would not stop Miss Novak’s suffering or her death.
According to the NMC code of conduct for nurses, midwives and nursing associates (2015), healthcare professionals have the responsibility of encouraging and empowering clients to participate actively in the decision making about their treatment and care (Nursing and Midwifery Council (NMC) 2015). This code of conduct focuses on the individual’s right to accept or refuse the treatment given and Miss Novak was very straight forward in refusing the treatment and asking for sedation. Personally, I believe in Principlism; for me, life is an exclusive right of every individual, starting from the moment they exist without having asked to be born (Rölli 2004). The capacity for self-determination is total and absolute, and the individual’s dignity is extremely significant. The absolute truth does not exist, everything is relative, and the individual decides freely the value of life (Rölli 2004). In the health field, being rational is what clinicians are expected to be; however, no one can escape philosophy, which is inherent to the human being (Stanford Encyclopaedia of Philosophy (SEP) 2003). As clinicians, we must have a congruent philosophical approach to the medical decisions that are conflicting for us; for example, in the end of life care. The lack of moral values, when exercising medical practice, will lead clinicians to a moral dilemma (SEP 2003). Principlism is a theory that postulates the existence of 4 principles that serve as a framework for the moral dilemmas that healthcare professionals face daily (Flach and Jennings-Dozier 2000). This bioethics model is based on the principles of autonomy, non-maleficence, beneficence and justice (Azétsop and Rennie 2010). Autonomy is considered as the human being’s free will to decide, beneficence is the clinician’s promise to do good for their patient, non-maleficence is the promise of not harming the patient voluntary and lastly justice, which is the engagement with the society in providing benefits (Azétsop and Rennie 2010).
The principle of patient’s autonomy has the predominant role; it focuses on the client’s self-determination. There are two kinds of freedom that will determine the outcome: the external freedom, which is the outside pressure and the internal freedom, which represents the individual’s limitations (Flach and Jennings-Dozier 2000). For clinicians, respecting the client’s autonomy requires the recognition of all moral aspects that are relevant to the individual. Respecting this ethical principle, clinicians must support and favor the patient’s autonomous decisions regarding their health. These decisions cannot be made by an external control that will limit them (Flach and Jennings-Dozier 2000).
When clinician’s morality is threatened by the law’s imposition, the loss of faith left us seeing just the ferocity we inflict to the patients.
Therapeutic fierceness is defined as a belligerent treatment for palliative patients when the end of their life is imminent (Clínica Universidad de Navarra 2019). Furthermore, it is a prolongation of the patient’s life under adverse medical circumstances and a disproportionate treatment in the last stage of patient’s life. Likewise, it is a controversial topic because the data collected by other healthcare professionals demonstrate that such therapies do not improve the individual’s medical condition (Bernat 2005); and besides, the outcomes may lead to public´s erroneous perception of how medicine contribute to the last moments of an individuals’ life (Clínica Universidad de Navarra 2019).
In the UK, the term used for this kind of extreme medical treatment is known as futile care. Futile care can be defined based on chances of patient survival or the quality of life afterwards (Asayesh 2018). However, for patients whose life expectancy or chance of recovery is very low, futile care can be viewed as aggressive treatment administered against the patient’s best interest (Asayesh 2018). According to this, when therapeutic goals are no longer achievable, and the probability of successful treatment is very low, curative care imposed on the patient by the medical team tends to be ineffective and unnecessarily costs the NHS.
Correspondingly, the moral distress among the clinicians, who must look after patients suffering from pain and discomfort, can be unbearable (Asayesh 2018). A healthcare professional facing an ethical dilemma of not being allowed to respect patient’s wishes, may experience specific discomfort, known as moral distress (Dodek et al 2016). Most studies have found a significant relationship between moral distress and futile care perception from the clinicians (Gutierrez 2005). The studies have also shown that the healthcare professional’s level of moral distress is intrinsically linked to their work environment and to what looking after patients such as Miss Novak can feel like (Dodek et al 2016). Moral values influence how an individual understands the world and correspondingly, how they create meaning of life and the personal experiences as a result with the intercourse with other human beings (Gutierrez 2005). A human being possesses an inherent consistency between personal values and the decision making and the actions taken (Dodek et al 2016). Clinicians’ moral judgements are strongly linked to moral values to decrease suffering such nonmaleficence, respect individual wishes and promote patients’ autonomy, maintain honesty and veracity, and use healthcare resources appropriately with a sensible meaning of justice (Dodek et al 2016). The moral conflict conveys in the clinicians’ empathetic caring along with the inability of resolving the conflict in accordance with their moral judgement. Victor Frankl who was a survivor of a Nazi concentration camp used to say, “It is through identifying personal meaning related to moral values that one can make sense of that which appears senseless” (Martí and Fernández 2013). Healthcare professionals going through these experiences are not able to identify a meaning or advocate for their patients (Gutierrez 2005).
For many years, the debate from where to draw the “no trespassing line” in futile medical care has raged without any satisfying conclusion for all the healthcare professionals involved (Rossoff 2013). Notwithstanding of clients’ considerations when labelling futile care, and healthcare professionals obeying providing the treatments that they believe are unnecessary (Rossoff 2013).
The current dispute relays on the outline of public health policies among the procedures that the clinicians must perform against their moral believes (Gutierrez 2005).
Notwithstanding, it is difficult to determine when the course of an action may fall under the definition of futile care, mostly, is the problematic of defining the point at which there is no further benefit for the patients in every individual case and circumstances (Heltz et al 2000). For instance, Miss Novak was a cancer patient in the last hours of life willing to be sedated and no suffer any longer, but the medical team considered the fact on the age (she was just 19 years old) and the possibilities of killing the infection with an aggressive treatment. How to avoid certain procedures that will ignore the wishes of the patient when the clinicians believe it may be a chance of surviving? And what the healthcare professionals understand about “good death”?
Defining what makes a good death (euthanasia) we will use qualifiers such as natural, at an old age and expected (Shneidman 2007), and at the contrary (dysthanasia) is consider as bad death. Euthanasia is one of the most intriguing ethical, medical and law issues that marked XX century, sharply dividing the population (Banovic and Turanjanin 2014). The criminal justice systems in the world deal with the issue of compassionate deprivation of life in different ways; there are countries where euthanasia is murder like any other killing according to their criminal codes, for example UK; which means that if any individual will be found assisting suicide or in an attempt of doing it, will break the law and be convicted (Battersby 2017). In between 2003 and 2004, Lord Joffe (1932-2007), who was an English lawyer that helped Nelson Mandela to escape from the death penalty, likewise, made four attempts to introduce bills that would have legalised voluntary euthanasia, all of them were rejected by the UK Parliament. However, Dr Nigel Cox is the only British doctor convicted of an attempted euthanasia (Marks 2002). There are other contemplations when judging euthanasia, as the principle of double effect, which is an ethical criterion first known from Thomas Aquinas (C. XIII) who defended the legitimacy of an individual for a treatment of homicidal self-defence. In general, this principle advocate for example relieving pain for terminally ill patients by the administration of fatal drugs (Schlabach 2019); according to this principle, this is not considered murder even if death is a potential outcome after a sedation which will shorten the individual’s life slightly. Thomas Aquinas named it “self-defence” in the work of his life Summa Theologica (Schlabach 2019).
In some of the countries in Western Europe, Canada and Colombia among others, euthanasia is a legal medical procedure, always under requirements prescribed by law. For example, Colombia’s Constitutional Court in 1997 established that “no individual can be apprehended criminally for taking the life of a terminally ill patient who has given clear authorisation to do so” (Kovaleski 1997). The Colombian court defined terminally ill as a patient under certain medical circumstances such as cancer, AIDS, and kidney or liver failure if they are terminal and the cause of extreme suffering (Kovaleski 1997). This law in in order to guarantee the right of the individuals to have a dignified death, perhaps, this standing law refused to authorise euthanasia for patients with degenerative diseases as MS (multiple sclerosis), Alzheimer’s or Parkinson’s disease.
When the law judges what is morally correct or not, the diving line can appear abrupt and meaningless. If the human being is free to choose how to die in terminal illnesses, no difference should be made between one and another.
Following the actions that occurred that night, even I firmly believe in principlism, the outcomes were all oriented to consequentialism. The medical team were thinking in the consequences of letting die a 19 years old girl, who is just starting to live. Consequentialism constitutes an ethical theory considering every action must be determine by the amount of goodness that the consequences of that action will have (BBC 2014). The moral obligation is ultimately derived from the principle of utility which states, that all actions or behaviours are right as they promote happiness or pleasure and wrong if the outcome is unhappiness or pain (BBC 2014). In this way, we could say that this theory as well as priciplism supports the principle of not letting anyone suffer in the last moments leading a fierceness treatment with zero hope. Perhaps, we referred to death in its highest essence, stopping the treatment that night meant to let Miss Novak die; therefore, the consequence was fatal, that is why the doctors decided to fight until the end. From my point of view, the biggest mistake was ruling the moral circumstances on the consequences of the final death. Looking after a patient demands a series of commitments and promises. However, consequentialism seems to go against moral intuitions, consequentialism is blind to promises acquired in the past.
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