Abstract
In clinical practice, modern medicine, especially intensive medicine, has made outstanding technological progress that has changed diagnostic and therapeutic paradigms. Nowadays, some patients for whom there were no treatments in the past not only survive but return to active life thanks to intensive medicine. However, in some cases intensive care will not help patients in a critical condition and merely prolong death. In such situations, the treatment is terminated or not extended, and the patient is allowed to die in dignity. In this specific situation all intensive procedures are terminated. Palliative care is the next stage. This is a sensitive issue that should be discussed with healthcare professionals and experts from other areas of life to ensure it is communicated appropriately to patients and their relatives.
“Modern technologies used in medicine bring unprecedented forms of dying or painful experience incompatible with life. This is a source of new dilemmas and a many unanswered questions.”
(Bioethics Committee of the Greek-Catholic Church, 2000)
Introduction
Death and dying, are the only certainties in the history of human existence. All human beings and all organisms have their beginnings and endings. For thousands of years, the terms death and dying were used to mean the permanent cessation of cardiac activity and respiration. The term death was redefined in the 20th century among rapid technological advancements in many fields, including medicine. The turning point came in 1952 when there was a poliomyelitis outbreak in Copenhagen that caused respiratory failure in some patients. The Danish anaesthesiologist Bjørn Aage Ibsen (1915–2007) designed a respirator which provided positive pressure ventilation (PPV) by means of endotracheal intubation, or tracheostomy. Two hundred medical students took turns to control the patients’ ventilation using an Ambu Bag. The mortality rate plummeted from 90% to 25% (Ibsen, 1954). In 1953, Ibsen founded the world’s first intensive care unit (ICU) in Copenhagen. He is considered the ‘founder’ of intensive medicine.
Since then, respiration and cardiac activity can be maintained even when the patient is in a deep coma. This revolution in intensive medicine has altered perceptions of dying and the definition of death has changed (Laureys & Fins, 2008, pp. 14–15). In 1959, French doctors Pierre Mollaret and Maurice Goulon described what is now called ‘brain death’ (mors cerebri) (Mollaret & Goulon, 1959). In 1968, new standards for declaring a patient to be brain dead were developed by a committee chaired by the anaesthesiologist and bioethicist Henry K. Beecher (1904–1976) and set out as the Harvard Criteria (Report, 1968).
Over the past fifty years there have been unprecedented scientific and technological advancements. The power of technological medicine (Zamperetti et al., 2006) can be observed in situations bordering on the end of life, and it is here that anaesthesiology and intensive medicine have made an immense leap forward. Intensive medicine ‘performs miracles’ in end-of-life (terminal) care. Terminally ill, or dying, patients are connected to machines that perform their vital functions (respiration, blood circulation, ingestion, and the elimination of metabolic products). Without these technologies, they would be dead. It is primarily in clinical practice in anaesthesiology and intensive care units that doctors fight for the lives of their patients and where difficult decisions are made regarding further treatment and life. The present paper draws on theoretical knowledge and intensive medicine experience. There is not enough space to consider all aspects in detail but the authors have tried to touch on the issue of end-of-life care and selected aspects of ethics and applied ethics.
Intensive care units (ICUs) and the purpose of treatment
Several years ago, a study (Rupert et al., 2012, pp. 1059–1065) was carried out involving 498 hospitals in 28 European countries. The study participants were 46,539 surgical patients. Of these, 1,855 (4%) died before being discharged from hospital. This percentage was higher than expected. In Slovakia, post-surgery mortality was 11.2%, which was above the average. It is noteworthy that the majority of the patients involved in the study who died (1,358, or 73%) had not been transferred to intensive care post-surgery. Of the patients who died after being transferred to intensive care, 43% had been placed in a standard ward directly after surgery (not in ICU). The study also found that the resources invested in ICUs were not targeted at patients with the highest risk of death. This merely highlights the continued failure to direct intensive care resources to those patients requiring them.
An ICU is a system in which critically ill patients receive intensive specialised nursing and medical care in an environment with enhanced monitoring opportunities and where organ function and survival can be supported in cases where life-threatening organ failure is a risk (Marshall et al., 2017, pp. 270–276).
Patients admitted to an ICU are often critically ill with a poor prognosis for survival or acceptable quality of life owing to the primary condition. In some cases, it is unrealistic to assume the risks, discomfort and suffering associated with further treatment will outweigh the benefits and lead to an improved prognosis. In such cases, it can be assumed that future quality of life will be so poor as to be unacceptable (Černý, 2009; Firment et al., 2014, pp. 34–36). Patients with the following diagnoses fall into the critically ill category described in the previous paragraph (Valentin et al., 2006):
Progressive multiple organ dysfunction syndrome (MODS), where there is little hope of successful treatment under maximum intensive care;
Terminal organ failure where transplantation or adequate long-term organ support are not possible;
Life-threatening illnesses or complications, or the loss of autonomous vital functions following irreversible brain damage;
Terminal stage of a chronic condition or cancer, impossible to affect by any treatement.
ICUs are frequently full and anaesthesiologists/intensivists on other wards may not be well placed to make appropriate decisions regarding patients in an acute state. Often there is a risk the patient may be harmed if examined at a later critical stage.
Patients in ICUs may be referred for palliative care. However, it is difficult to apply evidence-based medicine (EBM; algorithmic) approaches when deciding whether to transfer patients to palliative care, which is why there are no standard practices, merely ‘practices’.
Treatment in an ICU should always be aimed at preserving the life and health of the patient (Levy & Curtis, 2006). It is an accepted means of mitigating the consequences of the illness, while dealing with the patient’s critical state, and, if possible, eliminating, or at least, alleviating suffering. The key principle is that the treatment should prolong life rather than slow down the dying process.
Doctors are therefore recommended to focus on what is feasible and not stray beyond that. There is no point in keeping patients in a vegetative state if the prognosis is not acceptable. Doctors should, therefore, pursue options aimed at promoting life and healing, rather than impeding the process of dying.
In no case can the physician end the patient’s life in an active way, such as euthanasia (Firment et al., 2014, p. 34). The term euthanasia occurs in Appendix No. 4 of Law No. 578/2004 Coll., Point (5): “In the terminally ill and dying, a health-care worker eases the pain, respects the patient’s human dignity and wishes in accordance with the law and alleviates suffering. Euthanasia and assisted suicide are indefensible.” According to the Slovak Criminal Code (Law No. 300/2005 § 144-154), killing a person intentionally or through negligence (murder, homicide, participation in suicide) is a criminal offense against life.
Alternatives in clinical practice: Palliative care
If the above principles of caring for a critically ill patient cannot be adhered to and the physician cannot actively end the patient’s life (euthanasia), palliative care is given, in which the patient is made comfortable (Firment et al., 2009). In practice, it means the following:
Providing conditions that alleviate the patient’s physical or emotional suffering;
Pain management (analgesia);
Alleviating feelings of thirst, hunger, cold and other discomfort;
If necessary, ensuring a dignified death both in the social and spiritual sense (and, if required, in the presence of close family).
The key ethical norm in the transition to palliative care, wherever it is provided (e.g. in a long-term care unit, geriatric ward, hospice, palliative care unit, or any other place available at that point), is to respect and maintain the patient’s human dignity, including personal integrity and privacy.
This ethical norm is one of the recommendations for clinical practice. What follows is a brief summary of the recommendations for the clinical practice of palliative care (Byock, 2006; Mularski, 2006; Valentin et al., 2006):
The request for palliative care to commence should come from any member of the patient’s health-care team, family or a relative;
Whenever possible, the patient’s wishes and the opinions of the family/relatives should be included in the decision to start palliative care;
It is best to engage the family, or relatives, in a structured dialogue so they can be involved in the decision making ;
Responsibility for the decision to start palliative care should not be delegated to family or relatives;
All members of the care team should be included in the decision making;
The chief physician of the department or another physician who has been delegated overall responsibility should be responsible for the final decision on palliative care;
Decisions on the commencement of palliative care, or non-commencement or discontinuation of futile treatment should be duly documented;
The objectives and benefits of palliative care, and the risks of planned practices should be regularly reassessed;
The priority should be to alleviate pain and discomfort;
Unless the patient disapproves, the family and relatives should always be present.
Recommendations for clinical practice regarding a dying patient (Valentin et al., 2006):
When limiting treatment, the patient’s dignity and integrity should always be respected, and pain and dyspnoea alleviated;
In most cases the use of opioids is inevitable;
Terminal disconnection of the patient from the ventilatory support and extubation are only to be performed if medical staff are confident the patient will not suffer dyspnoea or will not be aware of it;
In an intensive care setting, as soon as it is clear that a critically ill patient cannot be saved, the highest priority should be a dignified death;
It is crucial to maintain the patient’s human dignity, and that the dying process is optimum;
The dying patient must be provided with adequate nursing care;
The dying patient should be in a private room, or at least separated off from other patients; monitor alarms should be turned off;
If the assumption is that the dying process will be lengthy, the patient could be moved to a standard ward (such as in a long-term care unit, geriatric ward, hospice, etc.);
Communicate carefully with close family and relatives;
Caring (medical, emotional, spiritual) for the patient’s relatives is part of the care provided in relation to the death.
Those providing palliative care will face dilemmas and problems, and the attending physician (or team) will have to deal with numerous medical and ethical issues. The following are typical (Firment, Bednár, & Capková, 2014, pp. 72–73):
Nutrition – if so, what and how much?
Liquids – if so, how much and how should they be administered?
Mechanical ventilation – if so, how should the machine be set up?
Will organ function support (renal replacement therapy – RRT, administration of catecholamines) be continued? If not, how should it be discontinued?
(Analgo)sedation in patients in an organic coma (e.g. following a serious traumatic brain injury – TBI, or cardio-pulmonary resuscitation – CPR)?
Surgery or other invasive treatments?
Blood transfusion?
Diagnostics, laboratory tests?
Selected ethical issues in clinical practice
Anaesthesiologists and intensivists in Slovakia often have to face complex medical and ethical issues (dilemmas) relating to end-of-life (care) and possible transition to palliative care.
Many of these ethical issues (brain death, CPR, DNI, DNR, decision making, directives, withholding or withdrawing treatment etc.) have been discussed for decades in the United States and Western Europe, but this is not the case in Slovakia.
In ICUs, the following ethical (bioethical) principles (Purtilo 1995; Ainslie 2004) have to be followed:
Autonomy – the patient’s autonomy (free will) and human dignity must be respected in full (Miller 1995);
Beneficence – all interventions are for the patient’s well-being (benefit) (Churchill 1995);
Non-maleficence – not harming the patient, or not running the risk of harming the patient by intervening (Purtilo 1995, pp. 2152);
Distributive justice – the fair and proper use and distribution of the available resources (not only financial ones) (Sterba 1995).
Let us briefly outline selected aspects of end-of-life care that all ICU medical staff have to face in clinical practice and that involve ethical and other issues:
Death and futile treatment
A death that occurs naturally and because the patient’s condition cannot be treated cannot be considered an unfavourable medical outcome. Therefore, futile treatment should not be given. A specialist should decide what treatment should or should not be provided. A medical doctor with the relevant theoretical knowledge and practical experience should make the final decision. Relatives opinions should also be taken into account, but neither they nor the courts should have the last and final say in such matters (Azoulay et al., 2009).
There is a general consensus that intensive medicine must not prolong suffering or death. Continuing treatment that will not bring about an improvement in the patient’s condition at the terminal stage is ethically and legally indefensible. Mechanical ventilation should be discontinued if it is merely prolonging death. In that case it is not considered as an active life-shortening measure (euthanasia), but rather discontinuation (termination) of a treatment which would prolong suffering and dying. From this viewpoint, all arguments that justify not extending treatment also justify its discontinuation (Valentin et al., 2006; Azoulay et al., 2009). What is the procedure for disconnecting a patient from a mechanical ventilator? Six hours prior to extubation, enteral nutrition should be stopped, the drip rate should be slowed to 25 ml of fluids per hour, diuretics should be administered and analgosedation (e.g. midazolam or propofol, as well as morphine) should be maintained, FiO2 should be reduced to 0.21 and PEEP to zero, and pressure support ventilation (PSV) mode should be provided. Thirty minutes prior to extubation, butylscopolamine and metylprednisolone should be administered (Kompanje et al., 2008). Once these procedures have been completed, the patient’s respiratory activity will decrease and apnoea will occur.
This seems a good point to explain some of the terms used in intensive medicine (Valentin et al., 2006). Withholding (non-escalating) primary treatment means that, where the prognosis is unfavourable, the patient is not admitted to an intensive care unit. Withholding secondary treatment (patient was already admitted to an ICU ) means that, organ support is not increased and no further treatments are given (e.g. catecholamine dosage is not increased, no intubation or mechanical ventilation). The following English abbreviations are used: DNE (do not escalate), DNAR (do not attempt resuscitation), and DNR (do not resuscitate). Any such decisions must be clearly set out and documented. Withdrawing treatment stands for reducing already started treatment (such as reducing catecholamines, or antibiotics). Treatment termination refers to the cessation of all intensive medicine treatments. This happens in cases where the treatment is non-beneficial or futile (and refers to treatments such as mechanical ventilation, catecholamines, vasopressors, RRT).
Interestingly, Payne (2000) states that either we think that it is in our power to save the patient’s life or it is not. In the first case, our obligation is to make every attempt to do so and use as many effective means as possible. In the second case, where it is futile to proceed, continuing treatment in one way or another, for example, by providing basal care, is merely symbolic.
Decision making
Decision making is a key attribute of human reason and thinking. In theory, it might seem simple: people think, consider the alternatives, select, and decide what to say ‘yes’ and ‘no’ to. In practice, however, it is not so simple. Decision making is often time-consuming and financially, physically, and mentally demanding. The decision taken is not always the right one or a good one. Sometimes it is wrong and has consequences and places a ‘burden’ on us. For these (and many other) reasons, people often do not like making decisions, are unable to make decisions, do not want to make decisions and are not willing to take responsibility for their wrong decisions. Moral and medical decision making is an even more delicate and sensitive issue (Bernat & Peterson, 2006).
Medicine (or the physician) oscillates between two antagonistic approaches to decision making—paternalism and autonomy (Fassier et al., 2005). An extremely paternalistic physician exercises superiority over the patient, assuming that only the physician knows what is best for the patient, regardless of what the patient may desire. This type of doctor is authoritative, issues commands and sets rules and prohibits any ‘inappropriate’ action on the part of the patient. The opposite kind of physician is one who gives the patient too much autonomy. Only the patient can be right and the doctor will do whatever the patient decides. Extreme paternalism is now rare. These days patients are given guidance and direction, partly because they are unlikely to have studied medicine and have no medical experience. In the same way, complete autonomy is also unsatisfactory, as it is emotionally (morally) demanding for the patient, and many patients are unable to make such decisions.
The patient should reach an opinions once all the treatment options have been explained clearly and in full, depending on the situation. While this can be difficult with conscious patients, it is often more complicated (or, possibly, simpler?) in intensive medicine, where the patient is unconscious and unable to express his or her opinion (Schweickert & Hall, 2005). In such cases, the assumed wishes of the patient can be expressed by, for instance, relatives, who can say what they think the patient would want. Relying on this information is, however, fraught with difficulties and such information has little legal or moral significance (Valentin et al., 2006).
The decision making process must include all members of the health care team. It is also important to consider the views of other doctors—consultants—experts from other medical facilities, or other intensive medicine units. The information the nurses can provide is invaluable, as they tend to have the closest relationship with the patient and knowledge of the patient’s suffering. This causes the nurses experience many situations which evoke moral distress. They are very sensitive participants in the whole process, awaiting the physician’s decision on the treatment strategy (Langley, Kisorio, & Schmollgruber, 2015). The attending physician, or the head of department, is responsible for the final decision. The input of those outside the health care team, such as clergy who look after the spiritual life of patients, or their relatives, should also be considered. The views and opinions of the patient’s family and relatives are also a factor.
A consensual decision on palliative care is the most desirable outcome. If there are different opinions, they should be carefully considered. Regular re-evaluation (on a daily basis at least), is recommended but this may vary. All the aspects of the decision-making process should be noted in the medical records.
Family and relatives
Patients who are admitted to an ICU are removed from their natural home environment and the people around them. For family members, this can cause stress, discomfort and depression. They are confronted with the reality of suffering and dying. While the family should help the patient come to terms with the situation, they are also forced to accept and cope with the situation. The family have a vital role to play in the dying process, as well as the decision making (Fridh et al., 2007). The physician should therefore keep the family updated on the patient’s condition and clinical prognosis. The information should be conveyed in a clear simple manner so family members do not feel excluded. The situation will need to be explained to them on multiple occasions so they can cope with it. The emotional toll can often impede understanding and make it difficult for the family to grasp the facts. What may be obvious to the doctor based on the test results may be opaque to those with little knowledge of medicine and unreal expectations. For that reason, clear communication between the doctor (the health care team) and the patient’s family is of the utmost importance.
The patient’s family and relatives should be encouraged to ask questions and should be included in the decision making where possible. Their views of the situation must be taken into consideration. It is, however, unacceptable to place any decision-making responsibility on the shoulders of the family or relatives. They are unlikely to be medically qualified or sufficiently emotionally or mentally composed, given the difficult, critical situation of their relative—the patient. To avoid potential conflict, if consensus is not achieved between the family and the attending health care team, the treatment should temporarily proceed to give the relatives time to understand and accept the situation. An independent physician, a medical advisory group or an ethics committee should be involved.
Conclusion
As the article has shown end-of-life care in anaesthesiology and intensive medicine units is complex and broad-spectrum (interdisciplinary). In Slovakia, therefore, a real, rather than an imaginary, interdisciplinary discourse is required between academics in medicine, social science and the humanities. The present paper does not in any way provide an exhaustive or detailed theoretical presentation of the issues, but outlines some of the ethical issues that anaesthesiologists and intensivists encounter in clinical practice. These days technological medicine, and anaesthesiology and intensive medicine, can often result in the successful treatment of patients, or at least alleviate pain/suffering. In spite of these successes and advances people still die. We know that death cannot be defeated, no matter how great the human desire for life and immortality, or the scientific and technological efforts to postpone or conquer death. The pandemic and a single invisible microorganism has shown us the limits of technological medicine. When faced with death and dying, there is only one thing we can do – accept the process and situation as something that has always been part of humankind’s existence and focus on understanding it and coming to terms with it. If we want to progress, we have to abandon mechanistic and materialistic thinking in technological medicine (a human is a machine), and instead begin to focus on the patient as a human being (a person) needing quality care in all spheres. Following ethical principles and the means of achieving them (e.g. ethical consultations or audits) in clinical practice will help us in this endeavour.
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