End of Life Issues - A Personal Dilemma

My siblings and I have recently had a most challenging conversation, given that our mum has severe Alzheimer’s disease, moderate emphysema, and is blind. With constant breathing difficulties, repeated respiratory infections and the limitations imposed by blindness on a demented lady of 82, we are aware that mum’s life is coming to an end.

My siblings are not Catholic and so are very much influenced by the secular belief in judging by the ‘quality of life’, which I am not since ‘quality of life’ is entirely subjective (an incapacity one person will accept or tolerate another will not accept or tolerate), and our family desire an objective criteria for care. Our discussion was not divided however, because the culture of life approach –which is eminently reasonable- we could all agree upon: to neither shorten nor lengthen mum’s natural span of life by medical or nursing omissions/interventions. Since I am not the legal next of kin, I was more than pleased to have this underlying goal agreed upon. Working it out was not so easy, and may still leave some difficulty if other illnesses develop, such as Congestive Cardiac Failure, which often comes with long-term emphysema.

There was common ground on the expectation that if mum becomes unable to take fluids by mouth, she will have fluids given intravenously or subcutaneously at a rate over each 24 hour period of 1.5L (equates to c.7 drinks per day) to 2L (equates to c.10 drinks per day) until the moment of death. if we are told giving fluids is a treatment that cannot be demanded, we might need to point out that this is a deliberate act to procure death, which is inconsistent with medical practice as commonly understood. We also agreed that we expect mum to be given oxygen support, but not mechanical ventilation, and that unless there is severe pain from cancer or such as fractures we do not expect opiates to be given. We agreed too that in the situation of a massive cerebral event such as CVA (stroke) we can allow sedation to relieve cerebral irritation or psychological agitation, but only at a level that does not go beyond that which is necessary to resolve such irritation/agitation. Finally, we do not expect antibiotics to be continued in the case of an unresponsive infection, nor do we look for Cardio-pulmonary resuscitation should Cardiac Arrest occur. We expect too that all basic nursing care (hygiene, oral care, pressure area care, incontinence care, emotional support etc) which is commonly called TLC (Tender Loving Care) be given at all times. Let us hope the medical and nursing staff can support us in this so that mum’s life span comes to a natural and dignified end which is neither shortened nor extended beyond that willed by God. All this is written down to give to whichever physicians are attending mum in her final days.

It was not easy coming to this kind of agreement, nor easy to discuss mum’s death while she is still with us, especially since she has been so supportive and wise a mum. She has kept us fed and clothed when money was short, and on the right track when we veered from the straight and narrow –which we didn’t always appreciate at the time. It was because she fought for our rights all of her life that we intend to fight for her at the end of her life, and by our discussion, hopefully minimise any disagreements at mum’s bedside when her entrance into eternity is in fact immanent.