Category Archives: Medical Ethics

NICE guidelines on end of life care

THE MEDICAL ETHICS ALLIANCE

Response to the NICE draft guidelines on end of life care for adults

Introduction:
The Medical Ethics Alliance (MEA) is a coalition of six faith and non faith based medical and nursing bodies. Our objective is to initiate discussion on ethics within healthcare professions and participate in public debate.

The MEA welcomes the opportunity to take part in this consultation on what is to replace the Liverpool Care Pathway. We do so in the understanding that the final guidelines will in all probability, influence the end of life care for most people . Following our conference in 2013 at the R S M entitled, “Natural Death is a Pathway Needed?”, we were contacted by many families who had had very distressing experiences of the L C P.

In “More Care less Pathway”,  the Baroness Neuberger  report,  she says that good standard care is better than poor palliative care. We therefore recommend that good standard care be recognised more  in the draft guidelines. A wider and ongoing consultation with authorities like the Royal Colleges should be encouraged. One of the problems with the

L C P  was that it had developed mainly from the experience of deaths from cancer. The manner of death from say, renal failure, stroke disease. C O P B etc… varies  so much that it is not possible to draw too heavily on the clinical experience of mainly cancer deaths.

At para 1.1   Anticipating the end of life;

This was one of the major problems with the L C P with some patients being deemed imminently dying when they were not. Most doctors have had experience of this error ( myself included ) but if it leads to a drug regime which is incompatible with survival, it will lead to the same problems as the L C P.  Nothing but constant review and a willingness to recognise improvement will suffice. This is another reason why there needs to be a doctor in daily change who has an intimate knowledge of the patient.

Family members and people with Enduring Powers of Attorney may well wish to ask certain questions such as;

“Are you sure that death is imminent?”

“Can you be sure that the person will not experience thirst?”

“Will the drugs you give take away consciousness?”

How will drugs interact?”

“Will life be shortened?”

“If the persons condition changes for the better, what changes will you make?

At 1.2          The importance of consciousness;

Nowhere in the guidelines is there an adequate mention of the supreme importance of consciousness.  It has been said “The last week of life may be the most important week of life”, and this is true not only for emotional support and family communication, but also spiritual support. To rob a person of their consciousness is a grave matter which is not mentioned in the draft guidelines.

There is a welcome mention about communication with the patient and family as one of the main problems with the L C P was that patients were being put on it secretly. Relatives began to suspect this and sometimes would not leave the loved one for fear that a syringe driver would be set up, and they would lose consciousness. If this happens again with the new guidelines they will be discredited.

There is a problem with advance directives  however, as they only become applicable if the foreseen condition actually arises. Thus they can only have a limited usefulness though as a measure of communication they are important. This may include a preference to die at home but the person  may still need admission to relieve distressing symptoms.

At para 1.3,  Who is responsible for the day to day management?

Central to our view is that care of the dying is at least as important as care of the acutely ill and that there must be a senior doctor, be it consultant or general practitioner, with clear  responsibility. This is also called for in “More Care less Pathway”.  That doctor should also be responsible for the individual care plan as stated in the Nueberger report.

We are not sure this is clear in the draft guidelines. There is a place for multi discipline teams but these cannot take the place of the doctor with overall responsibility and an individual care plan. This doctor should also make the day to day decisions including symptom relief and prescription in the same way as  they would if managing acutely ill patients. We return to our view that terminal care is as important as acute care. This may be implicit in the draft guidelines but should be clearly stated.

 
At para 1.4   Nutrition and hydration;

Many of the  most distressing cases in the evidence to Baroness Neuberger were of horrifying situations that can only be described  as patients dying of thirst. This is totally unacceptable!  If the draft guidelines do not eliminate this danger, then they will also be discredited. As a doctor who has seen death from thirst twice, I can say it is something not easily forgotten . Dr Gillian Craig of the M E A is submitting her own evidence on this.  Moistening the mouth does not relieve thirst. There is evidence for this in animal experimentation (Dogs with an oesophageal fistula were not relieved of thirst by drinking)

We recognise that there has been progress in the draft guidelines on  hydration and this is welcome but adequate hydration, howsoever given, is a necessity for all. We do not accept that dehydration  can be diagnosed from the signs in the draft guidelines. That is far too late. Fluids should be routinely given by mouth, tube or stoma if possible, or by the intravenous or subcutaneous route if necessary. We simply do not accept the view that the dying do not experience thirst. Nor do we accept that mouth hygiene relieves thirst.  The draft guidelines says nothing about nutrition. Why is this? We have learnt of deaths that are caused by both dehydration and patients who have been starved over weeks.If such deaths are to be avoided , and they are all to obvious to relatives, the guidelines needs to be much more robust. Nutrition and oral hydration should  be patient driven  but there is a basic need for fluids.

At para 1.5   Anticipatory prescribing;

Anticipatory prescribing versus reactive prescribing was one of the major problems with the L C P. There is an urgent need to address this.  The elderly may be particularly vulnerable. The draft guidelines actually mentions “4 or 5” drugs without mentioning what they are. This is unclear and potentially dangerous and likely to lead to over sedation and drug interaction. There is also the likely hood that the drug regimes would become  protocols, one of the main problems with the L C P. If necessary the doctor with overall responsibility can be contacted , in the same way they would have been with a patient with acute illness .Drug regimes must be based on patient need not prognosis. A lethal regime must not be allowed to build up as happened in some cases with the

L CP.

Evidence base of drug regimes;

The draft guidelines with commendable truthfulness states in a number of places that the evidence base is “low“ or “very low“. Interestingly, although in the section on recommended research there is a welcome recommendation for random controlled trials, but  there  are no recommendations on research to close these gaps. Why not? It is well know that Diazepams and Opiates poteniate each other but their metabolism will also depend on hydration and liver or renal function and the elderly are  very susceptible to sedatives.

                   Conclusions;

(i) The imminence of death cannot be certain, and no management should take place which could cause or hasten death.

(ii) The risk of thirst must be avoided and patient driven nutrition should be included.

(iii) A named senior doctor must be overall charge with responsibility for the individual care plan.

(iv) Consciousness should be preserved wherever possible.

(v) There should be daily  reactive prescribing.

(vi) There needs to be much more research to build up a proper evidence base, especially of medication at the end of life.

(vii) We welcome greater openness in discussion with the patient and relatives. There needs to be a two way dialogue. Advance directives have a  limited application.

(viii)  There should be daily re assessment of the person by the responsible senior doctor so that medication or the course of management can be changed.

28/8/15

Dr Anthony Cole JP,  F R C P E,  F R C P C H

Chairman

 

SEX-SELECTIVE ABORTION

 MPs VOTE FOR ACTION ON SEX-SELECTIVE ABORTION

On Tuesday 4th November 2014 MPs voted overwhelmingly in favour of a Bill seeking to clarify the law on sex-selective abortion.

The Abortion (Sex-Selection) Ten Minute Rule Bill, was approved by 181 votes to 1.

The Bill, promoted by MPs Fiona Bruce, Fiona MacTaggart, Kate Hoey, Caroline Noakes, Mary Glindon, Angela Watkinson, Tessa Munt, Sarah Teather, Sheryll Murray, Naomi Long, Pauline Latham and Rosie Cooper, was motivated by a desire to clear up an ambiguity in the law.

While the sex of the unborn child is not a ground for an abortion under the 1967 Act the British Medical Association and the British Pregnancy Advisory Service have argued that the law permits sex-selective termination in certain circumstances.

The Government has always disagreed, making clear that “abortion on the grounds of gender alone is illegal”.

The Abortion (Sex-Selection) Bill was designed to clear up the confusion, confirming the Government’s line and requiring the Secretary of State for Health to consider ways in which help can be offered to women who are under pressure to have sex-selective abortions.

Deciding that they wanted a vote on this issue, MPs ensured that a division was called.

The Bill’s Second Reading is set for 23rd January, though it is unlikely to be given time for debate in this Parliamentary session.

A growing body of case studies have put beyond doubt that women have obtained sex-selective abortions in the UK. However, some still argue that there is no evidence for the practice.

In response to these critics, Rani Bilkhu, director of Jeena International and spokeswoman of www.stopgendercide.org said:

Saying that there is no evidence is tantamount to saying that the women we work with are lying and that my organisation is making things up”

In the House of Commons, Fiona Bruce outlined the need for clarification and cited some case studies that have recently come to light.

Responding to the vote, Mrs Bruce said

That we are having this discussion is testament to how liberally the Abortion Act has been interpreted. Today Parliament agreed that more legislation is needed to silence those claiming that sex-selective abortion can be legal. Never would Parliamentarians in 1967 have imagined that 47 years on, there would be dispute about whether their Act permitted abortion where the baby was the a boy or a girl. If the social clause of the Act permits sex-selective abortion, the time to revisit it is long overdue. Until then, today’s vote has given a clear signal that MPs are united in working towards a time when the words “it’s a girl” are met with celebration rather than despair.”

 

The Abortion of Baby Girls, the Public Interest and an Upside Down World Worthy of Alice In Wonderland

 

By Lord Alton, Vice-President, September 2013

The Crown Prosecution Service (CPS) says it will not prosecute the two doctors who told a mother that they were willing to abort her unborn child because of its gender. The mother (in reality, a journalist) had told the abortionists that she did not want a little girl. The doctors then agreed to carry out these illegal abortions. The exchanges were recorded.

The CPS says it won’t prosecute because the issue is “sensitive”, “political” and “not in the public interest.” The former Director of Public Prosecutions, Lord Macdonald, has rightly challenged this decision as “very dubious” saying that it is wrong to protect professionals from prosecution, “undermining the principle that everyone is equal under the law.”

The CPS also made the extraordinary claim that it “is up to doctors “to interpret the law” and that they have “wide discretion.” This is clearly not the case where gender abortions are concerned. This is not a legal (let alone ethical) ground for carrying out an abortion. Since when did we give doctors the right to interpret something which Parliament has expressly forbidden?

It is equally extraordinary that without recourse to Parliament an unelected official has, by fiat, effectively legalised gender abortions. If that isn’t a “political” decision it is hard to imagine what is. Rightly, the Labour Shadow Attorney General, Emily Thornberry, and the Health Secretary, Jeremy Hunt, have challenged this.

The side-stepping of Parliament can only be rectified by Dominic Grieve QC, the Attorney General and he should do so as a matter of urgency.

As for the issue being “sensitive” – what this really means is that the routine ending of 600 British lives each and every single working day is an issue which we have put beyond the pale. We’re not prepared to think about it let alone discuss in a rational way. That is because of the scale of what we have permitted. Since abortion was made legal in 1967 we have aborted close on 7 million babies – around 200,000 each year – with one in five pregnancies now ending that way. Some have had as many as eight legal abortions. Most people assume (although not the law) that to do so is merely a matter of choice.
Of course, if you accept the proposition that “it is my right to choose” there is no logical reason why you shouldn’t end the life of a little girl merely because she is a girl. Gendercide is perfectly acceptable if choice trumps the very right to life itself. That the three celebratory words “it’s a girl” have become a death sentence, and the three most lethal and dangerous words in the world, is neither here nor there.

If it’s just down to choice and, in time, a test is discovered which reveals our likely sexual orientation, why not abort for that too? Is it just a matter of choice to take the life of a baby because it is mixed race or will be a colour which you don’t care for? It is, after all legal, to abort for “social grounds” (under which 98% of all abortions are done) and on grounds of “imperfection” – we end the lives of 90% of all babies with Down’s Syndrome and have aborted for things like cleft palate.

In considering all this not a lot of “sensitivity” is shown to the interests of the unborn child, some of whom will be in great pain (we allow abortion up to birth in some cases). Perhaps the CPS would consider whether that constitutes torture – but that would be “political” too and probably not in “the public interest” to have to confront something so awful.

It is also worthy of Alice in Wonderland that, on one hand, the CPS will prosecute a pensioner who shows a graphic image depicting the heart-breaking reality of what occurs in an abortion whilst, on the other hand, declines to take action against a doctor who is willing to flout the law by undertaking illegal gender abortions with the justification and sole objective of taking the life of a little girl. This is an incoherent and upside-down world which also violates a basic maxim of legal jurisprudence, that all parties should stand equal before the law. Holding different people accountable to different standards should not be the basis on which the CPS operates.

The only way that we will ever successfully contest the assertion that taking action is “not in the public interest” will be when the public – and through them, MPs – show rather more interest in a law which has taken the lives of seven million Britons – and in the end whether they are boys or girls is neither here nor there. Some of those who share these concerns have put up a Facebook page where you can register your view: https://www.facebook.com/genderselectionuk