Here is an explanation of common terms used during end-of-life discussions.
What is euthanasia?
What is assisted suicide?
What is withdrawal of nutrition or hydration?
What is natural death?
How is death determined?
What is the persistent vegetative state (PVS) or minimally conscious state (MCS)?
What is a ventilator-dependent patient?
What is a do-not-resuscitate order?
What is an advance directive?
What is palliative care?
(* terms with an asterisk in the text are defined below)
What is Euthanasia?
Euthanasia is the intentional causing or hastening of death in a person with a medical condition that is judged to be serious. The patient may either be (a) alert and (b) aware and (c) competent to make their own decisions and (d) able to communicate or the patient may have (a) decreased alertness (due to encephalopathy* or coma*), (b) diminished awareness (learning disability*, dementia*,vegetative state*) and (c) be incompetent to make their own decisions or (d) be unable to communicate due to aphasia*, or inability to speak. Euthanasia is voluntary, when an alert, aware, competent patient agrees to it being performed, and euthanasia is involuntary when it is performed on a patient without the patient's clear understanding and agreement. Euthanasia may be an obvious, clear-cut act acknowledged as such by both the medical staff and patient or may be an action or series of actions that are put forward as being "standard" medical treatment. An example of a clear act is when a patient is given a lethal intravenous dose of potassium or insulin or an oral fatal dose of sedatives. However, a patient may be given gradually escalating doses of morphine, benzodiazepines or other narcotics for sedation or analgesia, in the knowledge that the medication will hasten death. If morphine is being used primarily to treat severe pain not responsive to other analgesics, in a painful terminal condition, (such as advanced widespread cancer), it may be given in the knowledge that a side-effect of the treatment may be a hastening of death (so-called principle of double effect). This cannot be considered euthanasia. However, if excessive and repeated doses of morphine or sedatives are given to a sick patient who is not in pain, for the purpose of "comforting the patient" or to "relieve air hunger" or to relieve "laboured breathing" this may really be euthanasia under the guise of "standard" medical treatment.
The Liverpool Care Pathway (LCP) started in the United Kingdom in the 1990s with the stated aim of “driving up the quality of care for the dying”. The LCP had a central flaw that patients were put on it when they were determined to be “imminently dying” although it is not possible to make this “diagnosis”. Patients who were labelled as “dying” were given combinations of morphine, midazolam (a benzodiazepine tranquilliser) and glycopyrrolate (a medication that dries respiratory secretions) intravenously in increasing doses through a battery-powered syringe driver. Fluids were discontinued in most cases and patients died in a mean time of 33 hours. This uniform very short time to death shows that the LCP was effectively a form of euthanasia. The LCP was discontinued by the Neuberger Report in 2014. It was replaced by guidelines delineated in the National Institute for Clinical Excellence (NICE) in 2015 which still contain the central flaw of the “diagnosis” of imminent death and these new guidelines are if anything worse than the LCP. Despite this they are still in use throughout the NHS in the UK. It should be noted that the combination of dehydration and sedation, as used in the LCP, is particularly lethal. Dehydration in the elderly rapidly leads toencephalopathy* and renders the patient unable to take oral fluids and removes the patient’s capacity to be involved in their care decisions.
Another form of euthanasia that is frequently practised is to switch off a ventilator (mechanical respirator) that is assisting breathing in a patient who is unable to breathe on their own. Some patients are put on a ventilator because they have lung disease and need the extra oxygen- these patients may be alert and be able to communicate. Some patients cannot breathe on their own because of brain disease. This may be reversible as in encephalopathy*, or may be severe and irreversible such as in the persistent vegetative state*. It is frequently difficult to determine early in the course of an illness whether the condition is reversible or not and this usually only becomes clear with passage of time. Patients on ventilators are frequently in a deep coma and they may deteriorate and die. It is often difficult to know without a full neurological examination whether a patient is in deep coma or if they are dead. A series of tests has been drawn up to determine the presence of brain death (see section 5: How is death determined*) and these are usually administered by a neurologist or neurosurgeon. If these tests determine that brain death has occurred, it is legitimate to switch off a ventilator even though the heart may still be beating, because in this situation the ventilator is not keeping the patient alive. There is however, an increasing tendency in intensive care units to discontinue ventilator support in patients who have either severe irreversible brain damage who are not dead (see persistent vegetative state*), or in patients with potentially reversibleencephalopathy*. The stated reason for discontinuing ventilator support is often because the patient's prognosis for recovery to their previous state of functioning is judged to be poor. There is also an increasing tendency to discontinue ventilator support in patients with severe respiratory disease when it is judged that they have become ventilator-dependent* and might need to have ventilator support for the rest of their lives. Mechanical ventilation is clearly an artificial method of life support. Ventilation can be life-saving in an acute illness and patients are usually put on a ventilator as a temporary measure. Difficulty breathing is part of the terminal stages of several illnesses such as large strokes or severe long-standing lung disease. Mechanical ventilation is not part of the recommended treatment of such illnesses because there is little chance that it will help and a high chance the patient will die despite being put on a ventilator or that they will become ventilator-dependent*. When a poor outcome to ventilation is predicted, patients or relatives are usually advised to sign a do-not-resuscitate (DNR) order* This will ensure that a ventilator will not be used as part of the patient’s treatment and the difficult situation of ventilator-dependency will not arise. Clearly, there is a big difference between a person dying because a ventilator was not used for an inappropriate indication and a patient dying because a ventilator that was keeping a patient alive, was switched off. If a patient needs a ventilator to survive, death is a direct consequence of switching off the machine and this makes this a form of euthanasia.
What is Physician-Assisted Suicide?
Physician assisted suicide is when a physician assists a person to commit suicide by providing them with the means to kill themselves. This may be by prescribing a lethal dose of oral medications for a person which the patient then takes at some later time. Alternatively the physician may play a more active role by providing a person with a machine that once set in action, automatically delivers a large intravenous dose of a sedative, such as a barbiturate, followed by a drug such as a large dose of potassium, that stops the heart or a paralysing agent that stops breathing. The first drug puts the person to sleep, the second kills them. The physician is more directly involved in this type of assisted suicide because apart from prescribing lethal drugs, he/she provides the machine and presumably must also set up the intravenous infusion for the person. A physician may also assist suicide by withdrawing food and water from a patient at the patient's request. The law in many countries does not interfere if a person stops taking food and water of their own volition, but if this occurs in a hospital, the physician in charge, by acquiescing, assists in the suicide.
What is withdrawal of nutrition or hydration (food or water)?
Discontinuation of food and water is a form of euthanasia that is increasingly practised. The most frequent targets are patients who are unable to swallow, have encephalopathy* or are in coma*, or patients with advanced dementia*who cannot feed themselves. These patients have to be temporarily fed by a feeding tube through the nose or permanently fed by a tube inserted into the stomach through the skin. Most patients in whom withdrawal of food and water is considered are not competent to be involved in the immediate decision to discontinue food or water but may have made an advance directive* that they do not want life support measures taken if they become terminally ill. Many physicians who withdraw food and water in response to advance directives state that a feeding tube is a form of artificial life support that is similar to a ventilator. Withdrawal of hydration was a central feature of the LCP and continues to be practised in the sick elderly who are determined to be “imminently dying”.
Provision of food and water is however, the most fundamental of nursing duties. Food and water are necessary to maintain life and their withdrawal with the intent to hasten death is euthanasia. There is much misinformation about provision of hydration, especially in those patients determined to be “dying”.
It is said that when a person is near death the body “shuts down” and no longer needs nutrition and hydration. There are no reliable studies that support this claim and discontinuation of fluids and hydration are likely to hasten or cause death. Clinical signs of dehydration (especially the skin ridging sign) should be looked for daily in the elderly or sick. Inadequate oral intake should lead to giving of intravenous fluids. A person needs 1.5 to 2.5 litres of fluid a day or 1.5ml/kg/hr. Giving fluids subcutaneously is not a reliable means of delivering fluid as fluids tend to pool under the skin or leak. Leaving a patient without fluids for more than 24 hrs should be a reportable clinical incident.
It is also said that intravenous fluids are potentially dangerous so the risk has to be balanced against the benefit. This has been very overstated however since the risk of giving fluid is small but the withholding of fluid is rapidly fatal. Too much intravenous fluid in the elderly can lead to fluid overload, but this is easily diagnosed and treated by slowing the infusion or by giving diuretics. The risk of not giving fluids is that the patient is thirsty, (and severe thirst is extremely distressing) that the patient develops encephalopathy* or that death is hastened or caused.
If a patient is unable to swallow they should be given feeds by nasogastric tube. Nasogastric tubes tend to annoy patients if kept in for long and are often become displaced but they can be “bridled” with a thin tape to hold the tube into the back of the nose. If it seems likely that oral feeding will not be resumed within a week or so, Percutaneous Endoscopic Gastrostomy (PEG) tube feeding should be considered. PEG tubes are very well tolerated by patients and in stroke patients who cannot swallow it has been shown that they recover better if PEG tube is instituted early. A PEG tube can always be removed when it is no longer needed.
There has been a major tendency to delay nasogastric or PEG feeding in UK hospitals nowadays but patients feel better and recover better if fed adequately and starvation can hasten or cause death. Relatives should insist on adequate fluids and nutrition being given at all times.
What is unassisted death?
To die naturally a patient should die from the consequences of old age or disease. The patient's death may be at least partly due to surgery, to a treatment or to a medication (or to their complications), that is given in an appropriate dose and for an appropriate indication, with the intent of treating a disease or relieving pain. When giving a potentially lethal medication, there must be no intent to hasten death. Treatment may be withdrawn from a patient and this may indirectly result in their death. Patients do not have any obligation to use medical treatments and may opt to allow a disease condition to take its natural course. This becomes morally questionable when the patient is young and the treatment is easy and life-saving, such as a blood transfusion for a sudden severe loss of blood. A physician is under an obligation to use available treatments to attempt to prolong life or relieve suffering. If treatments to prolong life are likely to result in suffering a physician may, in consultation with patients or relatives, decide to withhold treatment. Treatment that has already been instituted may also be withdrawn if the prolongation of life they result in causes suffering, in a patient who is terminally ill. If withdrawal of a treatment has a high likelihood of directly resulting in the death of a patient, the doctor has a moral obligation not to withdraw it, even if the patient or relatives request it, because this constitutes an intent to cause or hasten death. (For example switching off a ventilator in a patient unable to breathe will result in immediate death).
How is death determined?
Death is normally determined by the cessation of the pulse and breathing. Determination of death in a patient who is connected to a ventilator is more difficult, because the heart often continues to beat after death of the brain. The main problem in the determination of death is that the ventilator continues to breathe for the patient, and it is not possible to test whether the patient is able to breathe without the machine unless it is switched off. Switching off the ventilator however, may result in brain injury if the patient is not dead. It is generally accepted (including by Pope John Paul II) that if there is irreversible complete loss of function of the brainstem (the part of the brain in charge of consciousness, breathing and regulation of the heart) this means death of the whole brain and that this is equivalent to death of the person even though some organs may continue to function for a period of time. A series of tests has been drawn up to determine the presence of brainstem death and these are usually administered by a neurologist or neurosurgeon. The tests performed are: a) looking for eye movements in response to turning the patient's head, or in response to putting cold water in the ears, b) looking for an eyeblink in response to touching the eye, c) looking for any movement in response to a mechanical stimulus to the head or limbs, d) looking for a constriction of the pupils in response to a light e) checking to see if the patients gags with stimulation of the throat. f) to ascertain the absence of all brain activity two electroencephalograms (brain wave tests) at least six hours apart can be performed. If all these tests are negative and certain baseline conditions such as adequate body temperature and lack of recent sedative drug ingestion, the physician will perform a breathing test. This is the final crucial test and it is done under carefully controlled conditions. The patient may have to remain off the ventilator for several minutes to allow carbon-dioxide to accumulate in the blood, because this is a strong stimulus for breathing. There is a risk that the high levels of carbon-dioxide may affect the heart and the heart may stop beating during this test. If the patient is not seen to breathe over a period of observation of about three minutes without the breathing machine but with 100% oxygen, then the patient is determined to be brain dead. The patient is usually temporarily put back on the machine and it may be necessary to repeat all the tests again after a few hours. When brain death has been ascertained the breathing machine can be switched off. It is well known that the heart may continue to beat after brain death, even for several months. There have been cases where a pregnant brain dead patient has been kept on a ventilator and this has allowed a healthy infant to be born.
What are "persistent vegetative state (PVS)" and “minimally conscious state (MCS)”?
PVS and MCS are conditions in which severe brain damage causes the patient to have reduced awareness and ability to respond meaningfully to the environment. The patient with PVS is typically one who suffers a severe head injury, a prolonged cardiac arrest or multiple strokes. The patient with PVS is able to open their eyes and may have normal sleep/wake cycles. With PVS they may look like they are awake, but seem to be totally unresponsive to their surroundings. The patient may be able to breathe on their own or need a ventilator. The patient is usually unable to swallow and needs a feeding tube. It has been found that patients with PVS may have cognitive activity without showing it and specialised centres recommend functional magnetic resonance imaging (MRI) while calling their name, as one way of determining this. (see reference Di et al below). Over weeks or months the PVS patient may start to focus on faces or even track movements. They may respond to sounds or turn to them or show other meaningful responses indicating they are now in the MCS. Treatment with galvanic vestibular stimulation is showing early promise of improving level of awareness in the MCS. (see Vanzan et al below) The diagnosis of PVS becomes more definite if there is no improvement over time, and recovery is said to be unlikely 12 months after a traumatic injury and 3 months after non-traumatic injury. Occasional patients who have appeared to have persistent vegetative state* have started to communicate in a limited, but conscious and meaningful manner after a period of years. (see Childs et al below).
What is a "ventilator-dependent" patient?
Patients are not normally put on a ventilator unless there is a strong chance that they will get better and be able to breathe again without the machine. Patients with acute reversible respiratory or brain or neuromuscular conditions (e.g. myasthaenia gravis) are most likely to benefit from a ventilator. Often a ventilator is the only treatment that will save a patient’s life and there is pressure from relatives to use this treatment. Patients with long standing or with severe irreversible brain or lung disease are however unlikely to benefit from a ventilator. The severe brain or lung disease is not cured by the machine but the patient may be kept alive by being on the machine but not be able to breathe sufficiently by themselves to be taken off the ventilator. This is called being ventilator-dependent. A patient can breathe using a ventilator for an unlimited period of time, and there are many portable types of ventilator and many people live at home with the aid of a ventilator. The cost of being maintained on a ventilator in an intensive care unit is high and this is one reason that there is increasing pressure to switch off the ventilator if a patient is unable to breathe without it after a trial of several days. This is clearly a form of euthanasia since the action of switching off the ventilator directly results in the death of the patient. Not all cases are clear-cut however, some patients are able to breathe on their own for a period of a few hours, when the ventilator is first disconnected but then they get tired and breathing deteriorates and the patient dies if not put back on the ventilator. Is it ever morally justifiable to permanently discontinue ventilator support in this situation? If there is a reasonable chance that the patient may be able to breathe on their own, and they are in fact able to so for at least a couple of hours, it is probably reasonable to discontinue the ventilator if the patient or surrogate* know and accept the risk of death. If the patient subsequently dies, death can reasonably be ascribed to the underlying disease rather than to the discontinuation of the ventilator. This is an area fraught with dangers because a surrogate may not always act in the patient's interest. The patient must be given every chance for their lung function to return to baseline before an attempt is made to discontinue the ventilator. Premature withdrawal of ventilation is likely to fail. If, on discontinuing the ventilator, it is immediately clear that the patient is unable to breathe sufficiently, the ventilator should be re-instituted. Once the patient is removed from a ventilator, narcotics should only be given, if after a period of time the patient starts to be unduly distressed and it becomes obvious that they are not going to survive. Excessive haste in removing ventilator support or in giving narcotics with the intent to hasten death is euthanasia. Despite this, in some intensive care units the most frequent mode of dying is by switching off of the ventilator. Patient who are perceived to be recovering from coma too slowly or to have irreversible brain injury are often switched off. This is despite the fact that judging prognosis of cognitive outcome is extremely difficult even for experts.
This area has been compounded in recent years for the need for transplantation organs. Patients whose ventilators are switched off “become potential donors”. Current “dead-donor rules” state that the heart must stop beating before organs can be taken, but the time interval has gradually been reduced from 10 minutes to even 75 seconds by some recommendations. The National Academy of Medicine in the USA requires a five minute cessation of heart beat but does not require brain death criteria to be fulfilled before switching off. The moral issue is however that unless brain stem death has been tested for and established, then switching off of the ventilator is a form of euthanasia. If the brain death test is not performed it is not possible to be sure that the person’s brain is irreversibly damaged. The strong push for organs for transplantation starts to become a justification for switching off ventilators without establishing brain death criteria - which is not acceptable.
What is a do-not-resuscitate order?
A do-not-resuscitate (DNR) order is an order placed in a patient's hospital chart telling the doctor not to attempt to resuscitate a patient if the patient is in imminent danger of death. When signing a DNR order a patient is usually concerned about being connected to a ventilator. The decision to sign a DNR order usually means that the patient or surrogate* has decided that resuscitation would cause the patient unnecessary suffering and would not alleviate the underlying illness. DNR orders are important for protecting a patient against excessive medical interventions which often cause needless suffering in the terminally sick and elderly. Institution of a DNR order should not be a pretext for reducing the level of nursing and medical care a patient gets.
What is an advance directive?
An advance directive is a legal document drawn up by a person stipulating their preferences with regard to end-of-life care should they become sick and unable to express these preferences themselves. The advance directive usually states that if the person has a terminal illness that they do not wish extraordinary resuscitative measures to be taken. The problem is that it is difficult for an advance directive to cover all the possible situations that may occur and there is a wide range of interpretation left up to the surrogate*. Individuals may take "resuscitative measures" to mean either mechanical ventilation or even just placing a feeding tube or intravenous infusion. Also a severe disabling stroke may be interpreted as "fatal" illness. An advance directive may in this way be used by a surrogate* as a reason for not giving food and water to a patient with a severe but non-fatal medical condition.
What is palliative care?
Palliative care refers to the treatment of patient with a terminal condition such as cancer with a therapy that will not cure the patient but will make what remains of their life easier. Palliative care is very important in the management of any incurable illness, particularly if the patient is distressed or in pain. Physicians have realized that they have to be very aggressive in treating pain and suffering in these patients. Relief from psychological and financial stresses are also important but often harder to achieve. The commitment of physicians to palliative care is undergoing renewed scrutiny in the light of the rise of assisted suicide and euthanasia, and some feel that current interest in euthanasia and assisted suicide is the result of inadequate palliative care. Unfortunately, since the goal of palliative care is primarily to "reduce suffering" many people now consider palliative care to include the hastening of death in order to reduce suffering. Withdrawal of nutrition and hydration are considered by some to be part of palliative care. In addition, the use of strong narcotics which was once restricted to pain management, is becoming accepted for a range of indications such as anxiety, shortness of breath and to suppress feelings of hunger when feeding is withdrawn. In this way palliative care is quickly becoming a euphemism for euthanasia.
Aphasia. This is loss of the ability to speak due to inability to formulate language in the brain.
Coma.This is the name for a severe degree of loss of alertness and the patient looks like someone in a deep sleep that cannot be aroused. Coma may be due to severe encephalopathy (in which case the patient may recover) or due to brain injury (in which case recovery may be limited). Any brain injury may cause coma but the most frequent are traumatic injuries and injury due loss of blood supply (strokes) or cardiac arrest.
Dementia. A permanent deficit in multiple areas of brain cognitive function that arises during life. The most frequent cause is Alzheimer's disease. Patients with advanced Alzheimer's disease may be incontinent and need total nursing care and tube feeding. Dementia is increasingly wrongly used for any loss of brain function in the elderly such as poor memory, confusion or personality change whether reversible or not. Worsening of memory is very common with increasing age and should not be classed as dementia. Unfortunately patients with a label of dementia are at greater risk of poor care or even euthanasia.
Encephalopathy.This is a disorder of brain function affecting the whole brain diffusely. An example is the confused drowsy state caused by severe alcohol overdose. The patient is drowsy, unable to focus on what is said and cannot make sensible conversation. If severe the patient goes into a coma. There are many causes including drug overdose, epileptic seizures and severe heart, lung, liver or kidney disease. Dehydration in an elderly person can cause encephalopathy. Encephalopathy implies absence of permanent brain injury and is often reversible.
Learning disability.A permanent deficit in brain cognitive function present from birth. May be caused by cerebral palsy.
Persistent Vegetative State.This is a condition in which severe brain damage causes the patient to have reduced awareness and an inability to respond meaningfully to the environment.
Surrogate.A person legally empowered to take end-of-life decisions for a patient if the patient is unable to do so. Usually the next of kin (wife, oldest child) or a person legally specified by the patient.
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Patrick Pullicino, MD, PhD. "Death: Natural or assisted?: A patient's guide to medical end-of-life issues." Unpublished paper.
Published with permission of the author, Patrick Pullicino MD, PhD.
Patrick Pullicino, MD, PhD is a US board certified neurologist and former Chair of the Department of Neurology at the University of Medicine and Dentistry Newark, New Jersey. Originally from the island of Malta he now lives in the United Kingdom. He has an interest in end of life care.Copyright © 2018 Patrick Pullicino, MD, PhD
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