Monday 14 January 2013

End of Life and the LCP again: “I was thirsty, and you gave Me no drink” -Updated


Our mum is now in her final days of life after a fall the week before Christmas; a fall which either preceded or was followed by a subarachnoid tear and haemorrhage. For nearly three weeks mum has been cared for in an NHS hospital, but the Lord has blest mum and us in that we have been able to have her admitted into a care home run by a Catholic religious order. There the love and support of both mum and the family is proving to be second to none. As can be imagined, mum's end-of-life situation brought up for the family -again- the use of the infamous Liverpool Care Pathway (LCP). We asked from the time had mum her fall and was lying in an NHS hospital that the LCP not be used. This request has been readily agreed in the Religious House, where the consultation of the family and cooperation with our needs has been excellent. (I wish I could name the Order but I have not sought their permission).

Some physicians and nurses do seem to find it difficult to understand this objection to the LCP since, as one nurse said, “It is only used in the last 72 hours of life” (but who knows when those 72 hours begin? “Only God knows the day or the hour”). I was reminded by another nurse that “There’s a principle of Double-Effect you know; it’s OK to give Morphine even though it shortens life because it’s not given to do that; only to relieve pain.” The Principle of Double-Effect is a concept from Moral Theology with which I am very well acquainted and use frequently in Confession, which is why the family and mum's religious care staff have supported and encouraged the use of Midazolam even though it too depresses respiration: we are using it to relieve mum’s intense anxiety, not to depress her respiration. At any rate, in that mum has no physical condition which causes pain (no cancer; no fracture, no obvious cerebral irritation indicating headache) opiates (morphine and its derivatives) are not clinically indicated. Still, I think we could be a headache for physicians and nurses by requiring that fluids be given! As it is, mum's religious care-givers and the family are giving fluids to mum by subcutaneous infusion at a rate of 500mls per 24 hours. The reason for this is simple...

The average adult body holds a great deal of water. Around 28 litres of water is held within the body’s cells (intracellular fluid), and around 14 litres in extracellular fluid (3 Litres in the blood plasma; 1 Litre collectively in the cerebrospinal fluid, eye, peritoneal and synovial fluid, and 10 litres in the lymph and the water surrounding the body cells.) We maintain these fluid levels by drinking (principally) and by eating.  We lose it overtly in urine, faeces and vomitus. However, we also lose fluid by insensible (unseen) means at around 400-800mls per day (authorities differ). This loss occurs in our breathing and perspiration, and why in the movies you often see a mirror held to someone’s mouth to see if it mists up: they are looking for water vapour via breathing to see if the person is still alive. So if we as a family are requesting that mum receive 500mls of fluid per day, we are only asking that her insensible loss be replaced in order that a state of hydration be maintained; it is not possible to put her into fluid overload by simply replacing insensible loss. One of the medics with whom I spoke about mum's condition and care described the administration of fluid to me as “a life-extending measure”; I had to correct this and say “life sustaining”, in that it prevents death from dehydration, thereby sustaining mum’s comfort until the point of natural death; it cannot extend her life beyond that point. The term “life-extending” is very deceptive; it suggests death is being prevented, which is simply not possible with replacement of insensible fluid loss.

Mum’s fluids were at first given at a rate of 1 Litre per 24 hours, but then she passed no urine for 36 hours. Since output was therefore severely down and the infusion rate quite high by comparison we could have overloaded mum, so the family and staff have agreed to stop the infusion for 24 hours, recommencing it at the 500mls per day needed to replace insensible loss and avoid dehydrating mum to death; in truth, a form of passive euthanasia (euthanasia by omission).

Thank God we found a Catholic institution where the physicians and nurses are willing to work with us rather than against us in end-of-life care for our mother, herself a devout Catholic. We could well have been left with an institution which forces or seeks to ‘persuade’ (pressure) us to dehydrate mum to death by removing all fluid simply because a Care Pathway indicates that this is the way forward...

Removal of fluids was expressed this way by Andrew who visited mum yesterday: “I was thirsty, and you gave Me no drink...”  -and who wants to be the one who refuses to give Our Lord fluid when He is on His Cross..?  

UPDATE; Mum died peacefully, fortified by the Rites of Holy Mother Church, at 13.55 on January 14; the birthday of her eldest son, my eldest brother, who himself died a few short years ago...prayers please. Her Requiem will be celebrated on Thursday 24th of January at 10am, in her local parish Church.

23 comments:

  1. May God bless your mother and keep her in His loving care. Prayers, too, for you and for all her family.

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    1. Thank you very much for your comment and prayers.

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  2. Father it is with a heavy heart for you and your family that I comment on this post. How blessed your mum is to have someone with medical knowledge to ensure her end of life care is given well.

    Thank you for opening my eyes in the post: both my parents are of an age where anything could happen to them and this has given me an insight into what I need to be aware of should they end up needing end of life care. I am praying for you all, especially your mum. God bless.

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    1. Thank you very much for your comment and prayers.

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  3. Prayers for your mum and for all her family at this sad time.

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    1. Again, thank you very much for your comment and prayers.

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  4. Dear Fr Gary
    Having met your Mum (Jean) on many occasions I will remember her as a very outgoing & jolly person.
    No doubt God will grant your Mum a merciful judgement in return for giving you to the priesthood. He will also, I'm sure, grant you & the family the strength to face your loss. God Bless

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    1. Again, thank you very much for your comment and prayers.

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    1. Thank you for reading the post and for commenting.

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  6. Prayer offered for you mum. May she rest in peace along with your brother.
    Thank you for the post on the Pathway.

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    1. Again, thank you very much for your comment and prayers.

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  7. My prayers to you and all your family.

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    1. Thank you very much for your comment and prayers.

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  8. Father, I am very sorry for your loss. I have said the De Profundis for your Mother. You did a beautiful work of love for her in her last days.

    God bless and comfort you and all your family.

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    1. Again, thank you very much for your comment and prayers.

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  9. Our prayers are with you and your family, father and we offer prayers for your mother.

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    1. Again, thank you very much for your comment and prayers.

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  10. It is profoundly gratifying that your mother could spend her final days in a setting which provided excellent care, sensitive both to the patient and her family and could die peacefully and beautifully, surrounded by those she loved. May God be praised for that.
    As a (Catholic) nurse in a (non-Catholic) hospice, I aim to ensure that all our patients and their loved-ones have the same experience. I am, therefore, sorry that you have such reservations with regard to the LCP. All the LCP is, is a list of all the care that is being provided anyway, but presented in such a way that no basic comfort is forgotten and no nurse has an excuse for forgetting things such as personal hygiene, oral hygiene, bowel care etc.
    There is no question of withholding anything. I have known patients on the LCP eat full cooked breakfasts. We had one patient with a particular liking for ice cream who had tubs of ice cream whenever he wanted. The basic rule is: what a patient wants, the patient gets, as far as he or she is able. Of course, in the final hours of life a dying person is unable- and, indeed does not need to- to eat or drink. That is perfectly natural and nothing to be worried about.
    Subcutaneous fluids may or may not be helpful. There is really no evidence either way. I am glad that you had a good experience with this. I have rarely seen good results from fluids: they either end up on the lungs and cause great distress or they form a balloon of fluid at the infusion site, which goes nowhere. Do not forget also that the body shuts down all unnecessary functions as it approaches death, so there is no great need for fluids.
    Things that are stopped on the LCP are unnecessary, painful, uncomfortable procedures such as scans, routine blood tests and the like. But we would not stop important things like steroids, which shrink tumours, reduce pain and reduce the risk of fitting or intravenous anti-biotics if there is a chest infection which is causing discomfort. These continue up to the point of death.
    Morphine causes great anxiety to families of dying patients, but it is only a risk when large amounts are given to someone who has never had any before. In a hospital or hospice setting, however, a patient starts on a very low dose - say, 2.5mg of diamorphine - and builds up gradually, depending on the amount of extra ( or "break-through") doses they need. The body gets used to morphine and it is not harmful if increased gradually. People can eventually be on very large doses with no ill-effects. I myself have seen patients on 5000mg of diamorphine in 24 hours, with no discernible effects on their consciousness levels. In addition to this, there are very strict rules on the frequency of additional doses.
    As regards sedation, Midazolam is usually given in doses of 5mg and wears off in an hour. It is very necessary, though, especially in cases of terminal agitation - a physical condition - which is distressing to both patient and family and needs to be controlled. But if a patient is unconscious, that is usually the result of the disease, not the effect of Midazolam or Morphine.
    Having said all that, though, LCP or no LCP, what matters is good, sensitive, loving and compassionate care. I am so glad that your mother and yourself experienced that. It sounds a wonderful place. So good that Catholic institutions are providing care of that quality.

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    1. Thank you for your comment, Andrew.
      You deserve a more considered reply than I can rattle off here in our present situation, but here goes anyway...
      I have to say it seems a poor reflection upon today’s nurses that they need a pathway to ensure they don’t forget basic comfort and hygiene etc for those in and end of life care situation. IMHO, we have to be careful that pathways of any description are not promoted and used in clinical practice that nurses become robotic about them, and this surely is an attendant danger when outcomes are measured against pathway protocols.
      I am aware that patients do not need to eat in their final hours and that fluids can pool in the lungs or subcutaneous tissue, but this is more an issue of regulating the rate of the infusion against fluid loss in overt output (urine, vomitus) and via insensible loss. It is never an easy balance to achieve and requires concentrated observations and care taking into account the disease process that is ending the life of the patient, but that concentrated observation ought to be the case anyway.
      I agree that unnecessary procedures and investigations can be discontinued in the final days –I am thinking of venepuncture, CT scans, repeated Blood Pressure recordings etc, but these would be suspended through common sense when they can provide no clinical markers by which a therapeutic response can be reasonably made.
      That a practitioner could speak of using the LCP only in the last 72 hours is to me quite shocking, since no one can know when those 72 hours begin. The assumption that these hours have begun, in conjunction with the removal of fluids, is what has caused a number of senior doctors to describe the LCP as a self-fulfilling prophecy.
      On the opiate issue, I too have seen people receive 5000mg given in a period of 24hrs, and I have no problem with this: a pain-free patient is part of the ideal situation. But if we are honest we have all seen it go fom 2.5mg to 5mg to 10mg and to 20mg without seeking to establish whether or not an intermediate dose would be sufficient or if there are any adjunct medications that could help reduce discomfort without having to resort to increased opiate dosage. Often, good nursing is enough to alleviate some of the pain and discomfort.
      I must affirm your penultimate paragraph that “LCP or no LCP, what matters is good, sensitive, loving and compassionate care”.

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  11. Prayers for you and your family, Fr Gary. The care you arranged for her in her last days is very moving to read about.

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    1. Thank you very much for your comment, and for your prayers.

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  12. Father,
    Thank you for a most uplifting and spiritual Requiem Mass yeaterday. No doubt your Mam is now at rest, and at peace.
    My prayers are with her, and you and the family.
    God Bless

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