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

The New England Journal of Medicine of 23rd May 2002 includes a special article¹ and an editorial² on the issue of voluntary euthanasia and amyotrophic lateral sclerosis (ALS) or motor neurone disease.

The editorial reminds us that patients with this disease play a prominent role in the debate on physician-assisted suicide and voluntary euthanasia. Patients with ALS are even more likely to request physician-assisted death than those with cancer. In Oregon during 1999 five percent of all deaths among patients with ALS were from assisted suicide, compared with 0.4 percent from those with cancer. Prior to enactment of assisted suicide legislation, 44 of 100 patients with ALS in Oregon and Washington revealed that they would seek a lethal prescription, whereas between 9 and 27 percent of surveyed cancer patients in the USA and Canada expressed an interest in assistance to die.

'Studies of patients in Oregon who made explicit requests for assisted death or who died by assisted suicide suggest that the loss of autonomy, control, independence, and the ability to pursue pleasurable activities - all hallmarks of ALS, often underlie requests for hastened death' the researchers stated.

The fear of worsening symptoms and the progressive loss of the ability to maintain close personal relationships are important issues. The researchers found no relation between depression and assisted suicide; instead they believed that the desire to die may be reinforced by feelings of hopelessness, which occur even in the absence of depression. This is because hopelessness projects present feelings into the future.

'The invariability of the progression of disease in ALS robs many patients of the hope that the most dreaded symptoms can be avoided. The belief that tomorrow is likely to be worse than today may be an important factor in these decisions.' 

Researchers in the Netherlands identified and contacted 241 physicians who had cared for 279 patients with ALS who died between 1994 and 1999. It was revealed that 17% of those patients died as a result of voluntary euthanasia or physician assisted suicide. This choice was not related to any specific characteristic of the disease or patient care, nor was there any correlation between education or income level. Patients to whom religion was important in life were less likely to have sought active intervention. However 24% of patients received palliative treatment which was likely to have shortened their lives.

The researchers in the Netherlands consider that

'.. it is important to undertake research to examine possible relations between palliative care, the role of the physician, the quality of life, the motives of the patient, and end-of-life medical decisions by patients with ALS.'

The researchers in the USA argue that research efforts may reduce, but are unlikely to eliminate, the choice for assisted death among terminally ill patients. Even optimal palliative care, with its holistic approach may not alter life and death choices. However their view is that with appropriate care, voluntary euthanasia and physician assisted suicide should only be an option of last resort for a small number of terminally ill patients. They make a plea for legislative reform to be tied to a financial commitment to universal and quality medical care at the end of life.
 
SAVES strongly supports the ongoing research into optimal palliative care to alleviate suffering at the end of life. It is anticipated that palliative care, voluntary euthanasia, and an unconditional patient-centred focus, in the place of  current paternalism, may eventually lead to the elimination of futile suffering.

Julia Anaf

References:
1 Veldink, JH, Wokke, JH, van der Wal, G et. al. (2002) 'Euthanasia and physician assisted suicide among patients with amyotrophic lateral schlerosis in the Netherlands', The New England Journal of Medicine, Vol 346, No 21, 23rd May. Pp1638 - 1644
2 Ganzini, L and Block, S, 'Physician assisted death - A last resort?' in above pp 1663-1665on.