Guidelines for the termination of life-prolonging treatment Aker University Hospital, Oslo, Norway Developments of Bioethics in Europe and Lithuania September 23 Vilnius University Knut W. Ruyter, Ph.D. Professor of Ethics, University of Oslo, Director, The National Committee for Medical Research Ethics, and Member of The Clinical Ethics Committee, Aker University Hospital

Problems Indefinite life prolonging of people in permanent vegetative state, Norwegian ”record” 22 years (terminated 2003) Overtreatment when curative measures no longer help Termination only when total consensus (among health professionals and relatives) When termination is decided, treatment is withdrawn gradually and successive Palliative care offered too late and without sufficient attention

Context: ideology The fight for the ”correct” terminology: right to life vs right to choose, death with dignity, active and passive euthanasia (help in dying), extraordinary means New ways of framing the discussion: - Assistance for living (Norwegian ”livshjelp”), strong emphasis on palliative care - Food and water are not medical means, but part of ”normal care”

Context: professions Termination of (curative) treatment widely practiced and condoned: - Futility, condition unchanged for past 6 months - Age - Degree of suffering and difficulty of alleviating - Food and water part of medical technology (BMA 2001, NMA 2003) Postponement caused by - Awaiting consensus - Psychological difficulties: removal feels active, gradual and controlled termination

Process at hospital Clinical Ethics Committee (1999) Task from Director to draft a set of guidelines for the hospital Draft made by the committee Open hearing at the hospital Invited comments to draft Invitation of critics to a meeting with the committee Final version drafted and sent to Director Approved in August 2004 Implemented in steering documents at the hospital

Concerns Open to silent/soft/hidden euthanasia Reflects acceptance of administring drugs to end life Even when treatment seems futile, there is hope – and anecdotal examples Consensus for termination among all involved parties, including relatives: from absolutely necessary to the tyranny of consensus Withdrawing more difficult than withholding treatment, at least psychologically: withdrawing feels ”active” Differences of acceptability among professionals and, it seems, greater acceptability among lay than professionals Acceptability depens especially on futility, age, degree of suffering

Concern Regarding suffering: noted difference between what is said (all suffering can be alleviated with proper medical means), what is actually done (much less than optimal) and what can be done (admission: not all suffering can be alleviated, not even with optimal palliative care).

Content Distinction of purpose: treatment: either curative or palliative Criteria for terminating purpose for cure: - futility, - harm to patient, - respect for opinion of competent patient, - consensus to be aimed for, but not as a goal in itself - openness and discussions with relatives - final decision rests with physician - withdrawal decision presupposes a plan for palliative care - preparation of relatives

Content Purpose: palliative care Criteria for palliative care: - Only measures that have palliation as purpose should be employed - Continuity and presence of staff (avoid feeling of being abandoned) - Removal of life supporting measures, including fluid and nourishment, unless this is deemed necessary to achieve well- being for the patient - No diagnostic procedures - Pain alleviation, proportionate to purpose, even if one may risk life being shortened