End of Life and Palliative Care

Contributed by Robin Gibson and current at 16 December 2021.

Introduction

The whole question of how individual patients, carers, care organisations and governments deal with the way life ends is a sensitive subject. Voluntarily ending life on request from a suffering patient is a highly emotional topic and is often deeply linked up with personal religious and philosophical feelings. Suicide prevention is a widely publicised topic so allowing a patient the right to choose time and means of death runs up against policies and attitudes aimed at preventing people from taking their own lives. The first place in the world to pass a law to allow euthanasia and physician-assisted suicide was the Northern Territory when its Rights of the Terminally Ill Act 1995 (NT) was passed. Four people used its provisions before the Commonwealth government passed the Euthanasia Laws Act 1997 (Cth). This legislation not only made the Northern Territory legislation legally invalid, but provided that none of the Australian Capital Territory, the Northern Territory or Norfolk Island could pass laws to legalise euthanasia or physician-assisted suicide. Over recent years, many attempts to pass legislation permitting euthanasia and physician-assisted suicide have been made in Australian State parliaments, none of which succeeded until Victoria passed its Voluntary Assisted Dying Act 2017 (Vic).

State law-making is not subject to the restrictions of the Euthanasia Laws Act 1997 (Cth). As of 31 December 2021, voluntary assisted dying legislation has been passed in every Australian state except New South Wales which at that date has draft legislation under consideration. Attempts to have the Commonwealth Parliament repeal the Euthanasia Laws Act 1997 (Cth) which prevents Australian Capital Territory, Northern Territory and Norfolk Island from legislating for voluntary assisted dying, have to date, not been successful.

Euthanasia

Euthanasia is the ending of a person’s life by another person with the intention to relieve suffering. Euthanasia is a word made up from two Greek words, eu meaning good, and thanatos meaning death.

Voluntary euthanasia is where a mentally competent person, whose suffering has become unbearable, requests euthanasia to end that person’s life. Some literature refers to other forms of euthanasia including involuntary and non-voluntary euthanasia. These forms of euthanasia can occur separate from the wishes of the person concerned, or in circumstances where the person is unable to make a decision. Voluntary euthanasia is now also legally permitted in many countries in the world including The Netherlands, Belgium, New Zealand, Spain, Canada and Luxembourg.

However, except for deaths occurring under euthanasia legislation now passed in most Australian notes, the intentional ending of another person’s life, even upon request, is illegal in Australia, being regarded by the law as either murder or manslaughter. In the ACT, murder is forbidden by Section 12 of the Crimes Act 1900 (NSW). New South Wales law was adopted into ACT law in 1911 upon creation of the Australian Capital Territory. The Crimes Act 1900 (NSW) has been widely amended in the ACT over the years since 1911 but the definition of murder has not changed. The maximum penalty for murder is life in prison. Unlawful killing of another which is not murder under section 12 of the Crimes Act 1900 is taken to be manslaughter under Section 15 of the Crimes Act 1900 (NSW) which is punishable by being kept in prison for up to 20 years, or if the manslaughter is found to be aggravated (made worse), for up to 28 years.

Assisted Suicide

While committing or attempting to commit suicide is no longer a criminal act in Australia (in ACT, Section 16 of the Crimes Act 1900), a person who aids or abets or counsels(helps or encourages or advises) suicide or an attempt to commit suicide, is guilty of an offence which is punishable by up to 10 years in prison (Section 17 of the Crimes Act 1900 (NSW) in its application in the ACT). Assisting a person to die if carried out under voluntary assisted dying legislation such as has been passed in most Australian states, is not considered to be aiding and abetting a suicide.

Physician-assisted suicide is where the person assisting the suicide is a medical practitioner and involves the provision of deadly medication by prescription to swallow by the patient with the intention to commit suicide.

Physician-assisted suicide is legal in several states in the United States of America (eg Oregon, Washing, California and others). It is also now legal in Canada and several other countries in the world. In all these places, the patient must be able to perform the final act, such as swallowing the lethal medication. In Switzerland, there is no bar on assisting a suicide provided the person assisting obtains no benefit. Consequently, there are several clinics where terminally-ill patients may attend and be assisted to obtain and self-administer lethal medication with the intention of relieving personal suffering.

Palliative Care

Palliative care is now widely available, both in health care institutions and in the home. In the ACT it is delivered by Clare Holland House, situated on the banks of Lake Burley Griffen, but is also delivered at home. Palliative care is intended to provide relief from pain and suffering and combines drug therapy with counselling and other procedures intended to permit death to occur in the gentlest and least painful manner and with the greatest dignity to the patient. Palliative care is commenced when medical practitioners consider that any treatment is unable to return the patient to any meaningful quality of life as determined by the patient. However, Section 6(2) of the Medical Treatment (Health Directions) Act 2006 (ACT) states a patient’s right to refuse medical treatment does not apply to palliative care. Despite that, even palliative care specialists will admit that they are unable to relieve the suffering of between 5% and 10% of patients. This failure to relieve suffering may mean many hundreds of patients whose severe symptoms cannot be relieved.

‘Good Medical Practice’

While suffering patients in Australia were formerly denied access to either euthanasia or physician-assisted suicide, there have been some medical behaviours, all of which have been determined by medical authorities to be good or normal medical practice. These practices may be applied in the clinical judgement of a medical practitioner to permit a patient to die at a time of personal choice. The effect of these methods, which are detailed below, may be to shorten the patient’s life whether or not that outcome is the intention of the medical practitioner. The boundary between what the law will and will not permit can, on occasion, be vague and subject to interpretation by both courts and medical practitioners. As ACT is still not permitted to legislate in favour of voluntary assisted dying, it is thrown back onto these “good medical practices”.

Principle of Double Effect

A major palliative care practice is to provide larger and larger doses of morphine-type painkillers as, over time, the pain relieving effects can become less and less effective. The point may come where the quantity of drug given may kill the patient. This is allowed provided that the intention of the medical practitioner is to relieve the pain not to kill the patient. The existence of the good effect, the pain relief, together with the bad one, the possible death of the patient, is double effect. The principle dates back to the time of Thomas Aquinas and has received the approval of the Roman Catholic Church. It was also supported as lawful in the English case of Dr John Bodkin Adams who was acquitted of murder after having prescribed increasing doses of sedatives to his dying patient.

However, one of the problems of this principle is that frequently, patients are denied adequate pain relief. The health practitioner may be concerned because the law may say that too much has been prescribed or administered which might suggest an intention to relieve symptoms by killing the patient. As the dosage of painkiller is gradually increased, there comes a point where the last dose which does not kill and the next one which does are almost impossible to tell apart. It is extremely difficult to find out what in fact the intentions of the health practitioner are in any given situation. The denial of adequate pain relief to suffering patients is an ongoing problem, pitting the interests of the health practitioner against those of the patient.

ACT has attempted to overcome this reluctance of health professionals to provide adequate pain relief. Even if a person has given a direction to withhold or withdraw medical treatment , that person must be given relief from pain and suffering to the maximum extent that is reasonable in the circumstances. (section 17(2), Medical Treatment (Health Directions) Act 2006 (ACT)).

Withholding or Withdrawing Life-Sustaining Medical Treatment

The right of a patient to accept or refuse any medical treatment is a consequence of the requirement for consent to medical treatment. As detailed above, (see Requirement for Consent, this chapter) the requirement for consent is not waived for medical practitioners. If a patient were not able to refuse treatment, that patient would be at the mercy of every technological advance. This might mean that a patient would prefer to not start treatment in case, if it became burdensome, the treatment could not be discontinued.

Refusal of life-sustaining medical treatment may mean requesting the ceasing of mechanical ventilation, the denial of antibiotic treatment for an infection or the withdrawal of artificial hydration and nutrition. However, withdrawal of medical treatment is not necessarily a humane way of avoiding the prolonging of unwanted life. Withdrawing ventilation means suffocation, withdrawal of artificial feeding means starvation or dehydration. The English case of Airedale NHS Trust v Bland [1992] UKHL 5; [1993] AC 789 confirmed that refusal of life-sustaining treatment is not suicide. This case permitted the withdrawal of a feeding tube from Bland who would never recover from injuries sustained in a football stadium crush though some of the judges expressed unease that the law would allow him to die by starvation but would not permit the staff to give a lethal injection.

The fact that a terminally ill patient can request stopping treatment to avoid the drawing out of the dying process is unfair when it comes to patients with some chronic illnesses like severe arthritis, or those patients with wasting illnesses like motor neurone disease. For example, patients with motor neurone disease know that the end will be suffocation because of the shut down of bodily processes. However, these patients cannot request to cease life-sustaining treatment in order to hasten death as there is no life-sustaining treatment to cease.

Medical Futility

Sometimes the decision to withhold or withdraw treatment is made by the medical practitioner without the consent of the patient. It is accepted as good medical practice in situations where, in the clinical judgement of the medical practitioner, no benefit to the patient would be gained either by starting the treatment or, having started treatment, by carrying it on. If the medical practitioner considers that a treatment would be futile, the medical practitioner need not commence or continue it. Even if the patient’s family disagrees, Courts will not force a medical practitioner to provide treatment which the medical practitioner thinks will be futile in the circumstances of that particular patient.

Do Not Resuscitate Orders

‘No CPR’ orders may be written in consultation with a terminally ill patient and the patient’s family, in accordance with hospital guidelines, to avoid the indignity of life ending in the pressure of an emergency attempt at cardio-pulmonary resuscitation (CPR). CPR might possibly involve deep chest compressions, cardiac ‘shocks’ with a defibrillator, the insertion of intravenous tubes and the giving of drugs such as adrenaline.

What is perhaps less well known is that CPR does not always have a certain outcome. It has been estimated that CPR performed within a hospital provides only a 15 to 20% chance that the patient will subsequently walk out of the hospital. When performed out of a hospital setting, survival rates vary between 5 and 10%. Brain damage from loss of oxygen is a real possibility as are crushing injuries to sternum or ribs, splitting of liver or spleen and other injuries requiring extensive treatment in intensive care. Medical practitioners who perform CPR in face of a ‘Do Not Resuscitate’ order are risking leaving the patient in a damaged condition, even if the patient survives. The choice of a patient for no resuscitation must be honoured by medical practitioners.

Palliative or Terminal Sedation

Palliative Sedation is a technique developed in the early 1990s. This procedure was developed to deal with uncontrollable pain and has been widely adopted world wide. It can sometimes be viewed as a combination of the Principle of Double Effect and the withdrawal of life-sustaining hydration and nutrition. The main reason for withdrawal of artificial hydration and nutrition is either because the patient has refused them in advance, or because it is ‘medically futile’ to provide them because it would prolong the dying process. The sedation is designed to put the patient into a deep sleep but not to cause the patient’s death. It is intended that the patient should remain in this deep sleep until the patient dies of the underlying severe medical condition.