When it is appropriate to use sedation in palliative care?

Readers' comments (14)

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  michael stone | 18-Sep-2012 2:11 pm

  'The author of this article poses this question: “When terminally ill patients are given continuous deep sedation without hydration, should we call it a form of palliative care, or is it in fact slow euthanasia? What do you think?'
  
  Its ethical if the patient requested it - otherwise, it gets very tricky legally.

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• Anonymous | 18-Sep-2012 9:21 pm

  It is NOT slow euthanasia.
  Patients who have debilitating symptoms including uncontrollable pain, panic, confusion and anxiety may sometimes require deep sedation for comfort.
  As thirst & the need for fluid diminishes at the end of life naturally, artificially hydration would usually end up causing fluid retention in the vital organs & the myriad of other complications which accompany this.
  However, every patient's an individual!

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• Anonymous | 19-Sep-2012 10:31 am

  It probably isn't helpful to call 'it' anything.
  
  Legally, the reason for the sedation must be relief of pain, and not a motivation to cause the patient to die.
  
  If the patient has refused artificial hydration, then he has that right.
  
  So if a patient requests permanent sedation and also refuses artificial hydration, he will die if that happens - but if the motivation on the part of the clinicians is effective pain control when they agree to the sedation, that appears to be legal: providing artificial hydration against a refusal, appears to be illegal. That appears to be the situation.
  
  Legally, the situation becomes nightmarish, if the instructions do not come directly from the patient !

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• Anonymous | 19-Sep-2012 1:34 pm

  To Anonymous on 19th Sept 2012-
  
  Legally, presuming the patient has capacity, then he has the right to refuse treatment.
  
  He cannot however demand treatment, artificial hydration for example. That is a clinical decision.
  Therefore, it IS helpful to call 'it' Palliative Care.

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• Anonymous | 20-Sep-2012 10:16 am

  Anonymous | 19-Sep-2012 1:34 pm
  
  'He cannot however demand treatment, artificial hydration for example. That is a clinical decision.'
  
  It cannot be a valid 'clinical' decision to provide artificial hydration, if it is known the patient has refused artificial hydration - there is then no decision, therefore, about whether or not artificial hydration could be provided. Calling something that is non existent, 'a clinical decision', seems inappropriate !

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• Anonymous | 20-Sep-2012 10:53 am

  in a clinical setting a decision has to be made by patients whether they wish for or are in a position to accept a treatment of not or they can simply refuse it or not accept it because they are physically unable to do so because of their state of health.
  
  under certain circumstances decisions may need to be made on their behalf by the clinical team on whether to administer or withhold treatment - both are clinical decisions
  
  
  In the case of patients not all decisions may be conscious but the clinical team has to make conscious clinical decisions on whether to act in the best interests of the patient or on whether to withhold treatment or withdraw it indefinitely. Such decisions must be communicated verbally and in writing clearly firstly to the patient if possible and to all involved in the care of the patient and their immediate personal entourage.
  
  Where possible, and in the best interests of the patient, they must be involved in every stage of any decision making and their agreement must be sought and if this is not possible with those they have designated in their personal circle of family, friends or relatives or if they have not designated anybody, the person who is obviously most closely involved with them such as, if available, next of kin or partner. Considerable care also needs to be taken that their central concern is genuinely in the best interests of the patient as impostors do occasionally come forward and any suspicions must be immediately reported to security, social and legal services and the hospital authorities following local policy and procedures.

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• Anonymous | 20-Sep-2012 11:29 am

  When it is appropriate to use sedation in palliative care?
  
  
  depends on each individual patient whether it is appropriate or not. generalisation, assumptions, protocols and packages of care are inappropriate and dangerous.

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  michael stone | 20-Sep-2012 1:47 pm

  This problem abruptly ‘flips’ from reasonably simple, to almost impossibly complex. It hinges on 3 areas:
  
  1) Properly understanding the Mental Capacity Act (MCA)
  
  2) Correctly defining what decisions are to be made;
  
  3) Correctly understanding who can make what decisions.
  
  
  Starting with 1. The MCA is always a little tricky to ‘get’. If you read the Act itself, it is a bit like looking for a grey mouse in a badly-lit coal cellar. If you read the Code of Practice, or much worse the further guidance, it is like looking for a black mouse in an almost completely unlit coal cellar. So read the Act itself, first.
  
  If you correctly decipher the Act (which, unfortunately, will put you in a minority) then you will realise that although the Act appears to imply that unless there is a written Advance Decision, a patient’s verbal refusal of life-sustaining treatment ceases to be valid if he becomes mentally incapable, that isn’t true. What matters, is that you have been satisfied that the patient has issued a relevant refusal – it doesn’t matter how he did that. Without detailing the proof, I will simply state the necessary conclusion:
  
  ‘If a patient has previously refused a treatment which is being considered during incapacity, and his refusal made it clear that he had adequately considered the circumstances which pertain during the incapacity, then his incapacity itself does not affect the validity of the refusal’
  
  To put that simply, if I am ill, you are my clinician, we discuss my prognoses and I say to you ‘If I arrest, don’t attempt CPR’, then if I subsequently arrest, the fact that I become mentally incapable when I arrest does NOT somehow invalidate my decision. And I am not required to write my refusal down, to ‘somehow make it binding’.
  
  The easiest way to think of this apparent paradox (you won’t find this, in current guidance) is like this:
  
  ‘Whoever is making a section 4 best interests decision, it is only a section 4 best interests decision if some degree of uncertainty exists about its correctness’
  
  Effectively, section 4 starts by asking ‘Can I be reasonably certain, of what this patient would have said to me, if somehow I were able to ask him ?’
  
  If the patient had clearly provided his answer, then you are as certain of his answer as it is possible to be: if that level of certainty exists, then you are simply following the NORMAL rule that you cannot treat a patient against a refusal.
  
  2) There are two decisions here. Is permanent sedation to be offered ? Is artificial hydration to be considered ?
  
  The one about sedation, and here I’m assuming it is sedation because no other method of pain/distress relief has proved adequate, equates to ‘Is it ethical to not offer pain relief to a suffering patient ?’.
  
  The second one, hinges on the nature of artificial hydration – and unless you can provide it without touching the patient, it can be refused by a patient on the usual grounds of ‘touching without consent is assault’.
  
  The complication, is that:
  
  Permanent sedation and no artificial hydration will almost inevitably cause the patient to die more rapidly than permanent sedation with artificial hydration and nutrition: and section 4(5) of the MCA looks very ‘awkward’.
  
  3) Now, this is crucial for separating the ‘simple situation’ from the ‘horribly complicated situation’.
  
  If a decision applies during mental incapacity, and anyone other than the patient is making that decision, then the decision-maker has to follow the requirements of section 4 of the MCA (when I say that, it must be understood that following an ADRT does not involve making a section 4 decision). So, anyone other than the patient, has got to negotiate not only the various other problems of section 4 (and there are many), but also section 4(5):
  
  4(5) Where the determination relates to life-sustaining treatment he must not, in considering whether the treatment is in the best interests of the person concerned, be motivated by a desire to bring about his death.
  
  If sedation without artificial nutrition and hydration would definitely lead to death, but sedation with artificial nutrition and hydration might not lead to death (and how do you know your terminal diagnosis is 100% correct ?), then 4(5) is very awkward IF YOU MAKE A SECTION 4 DECISION.
  
  So, go back to what I explained above:
  
  
  The easiest way to think of this apparent paradox (you won’t find this, in current guidance) is like this:
  
  ‘Whoever is making a section 4 best interests decision, it is only a section 4 best interests decision if some degree of uncertainty exists about its correctness’
  
  Effectively, section 4 starts by asking ‘Can I be reasonably certain, of what this patient would have said to me, if somehow I were able to ask him ?’
  
  If the patient had clearly provided his answer, then you are as certain of his answer as it is possible to be: if that level of certainty exists, then you are simply following the NORMAL rule that you cannot treat a patient against a refusal.
  
  
  So, if the answer to ‘Is it unethical to not offer sedation, when other forms of pain relief will not work ?’ is ‘yes’, then you should offer permanent sedation. You should also ask the patient if he wishes to accept or refuse artificial hydration and nutrition.
  
  If the patient then says ‘I want the sedation, and I forbid the hydration/nutrition’, you can do that and avoid any MCA complexity by simply stating ‘we were following the patient’s own decisions’.
  
  If you were never in a position to get the instructions directly from the patient, then it is horribly complicated. Even if there is a Welfare Attorney empowered to make decisions, it is still horribly complicated to apply section 4, if the WA had not previously discussed the situation with the patient.
  
  If you (clinician) could have asked the patient, and you deliberately neglected to, this is something I can only describe as ‘idiocy to the point of clinical negligence’ – and you would deserve any litigation that came your way !
  
  
  
  
  

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• nursemorph | 21-Sep-2012 11:48 am

  This is a very delicate issue. On the one hand, you can argue that with-holding fluids is unethical as it could be seen as hastening that patients death. On the other hand, you can argue that, by introducing fluids, you could in fact make symptoms worse....a patient who has end stage renal failure cannot excrete the fluids so, by continuing to introduce fluids, you could, effectively, be drowning them to death. It has to be considered on a patient by patient basis, all the while the relatives are kept informed as to the decisions and the reasons why.
  
  I suspect that a lot of relatives don't understand because no-one has taken the time to sit and both explain and discuss it with them. While some relatives won't accept the decision regardless of the reasons, others will agree if the reasons are just explained to them. Every single time (except in exceptional circumstances), the family should preferably be consulted before starting the palliation so you can make them aware of what is going to happen and the rationale for certain decisions

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• Anonymous | 21-Sep-2012 1:42 pm

  nursemorph | 21-Sep-2012 11:48 am
  
  I totally agree and the relatives need to be informed and involved in every stage also bearing in mind that they need a considerable amount of staffing time, patience, understanding and empathy for this as when in distress people do not always manage to think as clearly, objectively and rationally as they otherwise might and will see things from a very different perspective than the professional staff.

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  michael stone | 21-Sep-2012 3:31 pm

  nursemorph | 21-Sep-2012 11:48 am
  
  'On the other hand, you can argue that, by introducing fluids, you could in fact make symptoms worse'
  
  Symptoms are not signs - symptoms are things felt by the patient: so if deep sedation is deep enough, and clearly the idea here is that the patient will not be able to feel pain or discomfort, there won't be any symptoms (there might be the physical changes you describe, but the whole point of the sedation, is to prevent the patient from experiencing the suffering of dying).
  
  Re
  
  'While some relatives won't accept the decision'
  
  you have not explained whose decision, you believe it is to make - or, explained how whoever makes such a decision, can legally defend him/herself.
  
  By coincidence, page 1 of yesterday's Guardian carried a piece about a chap with locked-in syndrome ('Martin') who can only move his eyes, describes his life as 'garbage' and when asked what he wants replies 'death'. He was in the same court case as TN, but Martin wants protection from prosecution for any professionals who help him to go to Dignitas.
  
  We were told that:
  
  'there was one positive element in the judgement {in the one he is now appealing}. The court ruled that if Martin were to refuse food and drink, he could legally be given pain releif and sedatives by doctors'.
  
  Note that Martin is not, as I understand, terminal - he just objects to his 'state of life'. But note the judgement, even for a patient who COULD be kept alive - he can refuse nutrition and hydration, and if he did that then he could be provided with pain relief and sedation.
  
  Anonymous | 21-Sep-2012 1:42 pm
  
  Martin's wife, 'Felicity', says:
  
  'I don't want Martin to die, but I have to respect his wishes'.
  
  As I stated above, this isn't hugely difficult, if you get your instructions from the patient - otherwise, legally it becomes nightmarish !

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  michael stone | 22-Sep-2012 9:37 am

  Just to ask about something, in case I’m assuming something which isn’t true for a ‘jargonistic’ reason.
  
  ‘Permanent deep sedation’ – can someone clinical, tell me if deep sedation includes the condition that I, as a layman, would describe as ‘unconscious’ ? A friend of mine died ‘badly’ from cancer, and I hope the answer is yes.
  
  The answer doesn’t technically affect the law or ethics of this problem (all that matters, is that sedation ‘affects the patient’s mind, such that the patient is no longer capable of making his own decisions’ {ie that the sedation induces mental incapacity}).
  

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• Anonymous | 23-Sep-2012 11:51 pm

  To DH Agent,
  
  Generally speaking if someone is under 'deep sedation' their consciousness level would be measured using the GCS (Glasgow Coma Scale).
  That would determine whether or not they would be deemed as 'unconscious'.
  In my experience the answer to your question would be YES, as conscious level is what it is, be it medically induced by use of sedatives or not.
  
  Please note this is only my opinion & not intended as advice.
  

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  michael stone | 24-Sep-2012 2:44 pm

  Anonymous | 23-Sep-2012 11:51 pm
  
  Thank you. As it happens I know what the GCS is, but I don't know its specifics.
  
  But the measurement of the GCS score isn't the issue, for this one - however, the 'coma' part of GCS is relevant.
  
  My mum died 'after being peacefully comatose for about 4 days ' (my description, no medication involved, and she was at home) and my friend with cancer, was 'mentally somewhere 'not here', but clearly in intolerable agony' for at least a week when he died (he was in a nursing home). Nobody seems to have offered the option of allowing my friend to die in a medically-induced coma, despite his being temporarily removed to a specialist pain-relief centre.
  
  The issue, is will it ALWAYS be the case that terminal patients who are in so much pain that they request 'put me into a coma if I find no other pain relief works', will have their wishes met ? I don't think this will invariably happen, and I don't think this should be 'a lottery that depends on your clinicians', and I also think (know might be more accurate) that (many but not all) clinicians are very unsure of the law around this issue (it is a very tricky one - but many clinicians are wrong about easier areas of the MCA ),
  
  Thank you, Mike

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