Friday, 31 August 2012

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. 

12 comments:

  1. Father, what a courageous post. Thank you for that, but also for the detail it contains, which will be of enormous use to many.

    ReplyDelete
    Replies
    1. Thank you for your comment. I do hope that it will be of use to others, particularly in helping families look at these issues before the stress of a loved ones immanent death.

      Delete
  2. Father Gary, our hearts go out to you. As you know we both had to face losing a wife/husband in our lives, mine very quickly, Theresa's over a much longer period. Whilst I had no control whatever over Margaret's death (it happened so quickly) Theresa had to watch her husband deteriorate over a much longer period. In many ways your Mum doesn't really understand what is going on so it must be infinitely more difficult for you & your siblings to cope.
    Our prayers are with you & you will all be remembered in our Mass tomorrow at your Mum's parish church.

    ReplyDelete
    Replies
    1. Thank you for your comment. You have obviously had your own troubles to overcome; thank you for responding to ours.

      Delete
  3. Prayers promised for your mother and all the family

    ReplyDelete
    Replies
    1. Thank you for the comment and prayers.

      Delete
  4. Father this is a very moving post. It also gives me a lot to think about with my own parents as both my brothers are lapsed Catholics and my sister is a weekend catholic. I thank you for this post, keep up the good work with your blog it is truly educational and very inspirational. I will pray for you, your family and especially for your mam. God Bless

    ReplyDelete
    Replies
    1. Thank you for your comment on this post and on the Blog in general. We aim to inform by our sharing and hope to inspire.

      Delete
  5. This is very good indeed, and I am going to print it and keep it. My aged mother-in-law is perfectly compos mentis and remains in her own home, but is frail, and at her age one never knows what the future may bring, or when.

    As I understand it, the law in England allows patients or their representatives to refuse any particular treatment, but not to insist upon receiving it. The doctors have the final say in deciding whether to withhold a treatment. And in England (I don’t know about other places) nutrition and hydration are, I think, classed as treatment.

    I have been trying to think of a way of getting round this by expressing it in terms of refusing rather than insisting. The only thing I have come up with so far is “Not to administer any treatment which renders the patient incapable of indicating that he or she desires food or liquid”. This concern may not arise in the event, and it is very much a hypothetical thing for my husband and me, but it is sensible to be prepared. We all have the fear of a patient being “made comfortable” to an extent that sometimes seems rather over-zealous.

    It is all shifting sand, isn’t it, in the advanced stages of a loved one’s illness? You have made a really good contribution to the exchange of ideas. May God bless you and your mother, who is obviously in the best of hands with her loving family.

    ReplyDelete
    Replies
    1. Thank you for this reply. I too am looking for a way around this dilemma of fluid being 'treatment'. Since fluid is a basic human need for survival, I would consider any refusal to administer fluids a case of death by deliberate intent. Depriving someone of fluids goes beyond negligence to actively procuring death, which I feel sure is not how the medical profession desires to be seen in that its mandate is healing, and if Doctors heal by killing there is an implicit, perhaps even explicit declaration, that they are not only unable to fulfill their purpose but deliberately acting contrary to it.

      Delete
  6. I wept while reading your post. I lost my father to cancer 2 years ago, so I'm sure I can relate the pain your family is going through. Yeah, we have had those discussions too and made to sign papers for the doctors to follow when his time comes. It was 6:45am when I lost him with 5 nurses, 1 doctor, me, my mom and a helper accompany him. It was the first time I witnessed death and it's as painful as hell. I'm not my father's favorite and we argue with all sorts of things but it was me he hugged before he passed away.

    ReplyDelete
  7. Tim,

    Many thanks for your comment.

    End of life issues are always difficult; they can call-up not only the love shared but the difficulties encountered. I suspect that, while you say you were not your father's favorite, the reality was that you just disagreed on things; it seems clear from his hug that the love was always there. Love doesn't mean agreeing on things; it is deeper than that.

    God bless you and yours.

    ReplyDelete

Please comment using a pseudonym, not as 'anonymous'.
If you challenge the Magisterium, please do so respectfully.
We reserve the right to delete from comments any inflammatory remarks.
If we do not reply to your comment it is through lack of time rather than interest.