SAVES is not affiliated with Exit International / Dr Philip Nitschke and opposes the public availability of a 'peaceful pill'.

The seventh annual report on palliative care in SA, tabled in state parliament in July 2000, stated that 'South Australia is recognised as a lead state in palliative care, especially in education and the law in this area'. There is no doubt that this is indicative of great strides in the availability and efficacy of palliative care, and is a credit to the dedication and commitment of palliative care staff and volunteers. SAVES supports crucial ongoing development but also understands, as do many palliative care experts, that even with 'state of the art' palliative care, some patients will experience substantial suffering.

Over 90% of people with terminal illness will endure their situation, but approximately five percent find it intolerable and request euthanasia. The ideal of a pain free, comfortable death with dignity is not always obtainable and should neither be assumed nor promised. Not all suffering associated with the advances of diseases such as cancer, AIDS and motor-neurone disease can be alleviated. This is why SAVES supports voluntary euthanasia as an option of last resort in medical practice, as part of the continuum of palliative care.

Prior to drafting the NT Rights of the Terminally Ill Act, the then Chief Minister, Marshall Perron, had information compiled by palliative care specialists and other doctors concerning difficult or impossible to control pain situations and non-pain syndromes which cause extreme suffering. This material has been updated and is current at June 2001. (1) The information is provided below to

highlight the suffering faced by some hopelessly and terminally ill people, and why SAVES is committed to social change through law reform.

Pain, particularly that due to infiltration by cancer of extremely sensitive nerve rich areas such as the head and neck, pelvis and spine, is commonly episodic, excruciating, and aggravated by movement. Some pain can only be palliated by producing a prolonged unconsciousness, coma, or 'pharmacological oblivion', sometimes referred to as 'slow euthanasia'. This may last for days until death occurs by dehydration and circulatory collapse.

There are several pain conditions that are particularly problematic. For instance some inoperable brain tumours cause severe head pain from pressure on sensitive nerve structures. This may be accompanied by loss of function including blindness, paralysis and incontinence. Infiltrating head and neck cancers, with or without ulceration, may cause tumours which fungate, distorting the face and producing foul odours. Lung cancer may infiltrate the root of the neck or chest wall, damaging sensitive nerves. Mesothelioma associated with asbestos inhalation is incurable, producing severe chest pain with each breath. It is made far worse on coughing which may be chronic and persistent. There is also the associated difficulty in breathing, with feelings of suffocation. Recurrent bowel obstruction due to widespread abdominal cancer causes pain, nausea, vomiting, and abdominal distension. Surgery may be advised, but can be either futile or of only very short-term benefit,

Pelvic, bowel, bladder, prostate, uterus or ovarian cancers may infiltrate major nerve areas affecting the legs or genitalia, causing severe pain, with or without paralysis of the sphincter and legs. Inoperable bladder cancer with very frequent and painful urination, often with bleeding, blockage to flow and incontinence inspired the saying 'please God, do not take me through my bladder.' Spinal cancer with nerve root pain, vertebral collapse, with or without paraplegia, is one of the worst situations possible, with the patient being confined to bed with episodic excruciating pain accompanying simple movement.

There are also non-pain syndromes causing extreme suffering. Cachexia (chronic debility of body or mind), commonly associated with advanced cancer, involves severe loss of appetite and weight, loss of energy and severe psychological pain or distress due to gross debilitation and loss of independence. Some patients experience loss of appetite with intractable nausea and vomiting due to either the cancer itself, or drug or other therapy including chemotherapy and radiotherapy. Some syndromes cause progressive difficulty in breathing, possibly with a severe cough, with or without severe pain. There is also the fear of suffocation, which causes enormous anxiety. Other chronic progressive neuropathic syndromes such as multiple sclerosis and motor-neurone disease lead to paralysis of all limbs, loss of speech, blindness, loss of control of bowel and bladder, and perhaps inability to breathe or swallow. The person's bodily functions disintegrate yet trapped within is a perfectly lucid mind. AIDS too is a potentially fatal disease, often of young people, with a dying process involving immobility, incontinence and progressive loss of mental faculties. Total dependence syndrome involves the lack of dignity due to loss of independence and control in the terminal phase, particularly in hospital. This is a major reason for euthanasia requests. These are only some of the challenges to be faced by even optimal palliative care regimes.

This information is provided as an insight into the suffering experienced by some hopelessly and terminally ill people. It is neither meant to sensationalise any condition, nor to understate the very real benefits which modern palliative care provides for the majority of patients; a fact which should allay many fears. It serves to stress the need for continued support and refinement of this admirable form of care, while at the same time conveying to readers the cruel reality of certain forms of suffering which will remain unrelieved for a minority of patients while there is no recourse to voluntary euthanasia.

The debate on voluntary euthanasia highlights a whole range of issues around death and dying, leading to widespread public concern over end-of-life options, and growing demands that they be provided. That improved funding for palliative care often results from this debate is to be applauded. Yet SAVES disagrees with the view that palliative care is the answer to all demands for voluntary euthanasia. The Palliative Care Council of SA acknowledges that 'while pain and other symptoms can be helped, complete relief of suffering is not always possible, even with optimal palliative care.' However the council's position is that palliative care practice 'does not include deliberate ending of life, even if this is requested by the patient'. Nevertheless it recognises and respects that 'some people rationally and consistently request deliberate ending of life'. (2) Patients' voices will not truly be heard until they can legally resolve the resultant dilemma.

What SAVES opposes is the view that even if there is a small minority of people who cannot be assisted, their suffering must be endured 'for the common good'. Such a position results in unnecessary cruelty and a denial of human dignity and self -determination. The reality of intractable symptoms is why SAVES also seeks to address the needs of the hopelessly ill, as well as the terminally ill, when drafting law reform. This respects the need for compassion in the face of futile and long term suffering.

References:

(1) Perron M. (2001), 'A synopsis of disease and symptoms which are at best difficult, at worst impossible to control with modern palliative care'.

(2) Palliative Care Council of SA (1999), Position Statement on Euthanasia.

Julia Anaf