The Medical Ethics Association, the Telegraph, and the LCP

The Daily Telegraph recently carried an emotive, distressing story. Six doctors had written to the paper suggesting that the Liverpool Care Pathway (LCP), a structured system of care ensuring that people in their final days or hours of life are in as little distress as possible, was being applied inappropriately to reduce strain on hospital resources.

The aim of the LCP is to unite members of the multi-professional team concerning continuing medical treatment, discontinuing treatment, and comfort measures in the last days and hours of life. All non-essential treatments and medications are stopped. Treatments may be started for symptoms such as pain, nausea, or breathing problems.

In some cases, for instance if pain can't be controlled, terminal sedation may be used. As patients receiving this type of deep sedation are typically in their last few hours of life, artificial hydration and nutrition are not given: the patient wouldn't be eating or drinking significant amounts anyway, and fluids may make distressing symptoms like respiratory secretions and pulmonary congestion worse. Palliative sedation therapy doesn't hasten death: it just makes it less uncomfortable.

There were several things in this article I...took issue with, shall we say. I'll list them below.

• It describes the LCP as a "controversial scheme". Quite the contrary: reviews have shown it to be effective and viewed positively by patients' relatives.One study found it reduced the extent to which doctors used medications which could shorten the patient's life. It is national policy in the UK, and now being introduced in other parts of the world.
• Predictably, the article makes an issue of the withdrawal of artificial hydration and feeding. As I said above though, someone in their last few hours of life wouldn't be eating or drinking anyway, and hydration could actually make symptoms worse.
• The six doctors concerned are "experts in elderly care". That doesn't make them experts in palliative care, a quite separate speciality.
• The doctors claim there is no “scientific way of diagnosing imminent death.” Well no. Not to the second. But doctors and (particularly) nurses generally have a pretty good idea of who's on the way out. If a patient's condition improves, they're taken off the Pathway and start the appropriate treatments again.
• The six doctors wrote their letter in conjunction with the Medical Ethics Alliance, a Christian organisation founded to promote pro-life policies. I don't know if they're all members, but presumably they're sympathetic to its views. The MEA believes that terminal sedation and the withholding of artificial hydration and nutrition is euthanasia. I think I've shown above why this is not the case.

If, as the doctors suggest, informed consent is not always being sought for going onto the LCP, then that's wrong and needs to be sorted out. But it's no excuse for scaremongering like this from the Medical Ethics Alliance and the Daily Telegraph. The LCP is good, compassionate, and evidence-based. It'll be a damn shame if people are too frightened to use it.

Tony Nicklinson, informed consent, and the community

Seven years ago, Tony Nicklinson was an active, busy, family man. His hobbies were rugby and skydiving. Then he had a massive stroke, and was left paralysed from the neck down and unable to speak. Intellectually, he's unaffected. His condition is called locked-in syndrome.

Tony describes his life as "increasingly miserable". With his family's backing, he's gone to the High Court to ask permission for a doctor to be able to kill him. It's important to note that this wouldn't be assisted suicide, but something quite different.

• Assisted suicide: others may help (eg provide drugs, help with transport) but the individual must perform the action themselves. Illegal. Seen by some as a disability rights issue: it's not illegal for an able-bodied person to kill themselves, but if someone's too disabled to do the deed themself and therefore needs help, the person who helps them commits a crrime.
• Voluntary euthanasia: The individual is not able to kill themself, even with assistance. The only way they can die at will is if another person will actively kill them.

When you listen to Tony's pleas, dictated laboriously by eye movements, it's difficult not to be moved. But emotion isn't a good basis for making law.

And many people are as disabled as him, and lead happy lives. If the courts decide that Tony's life is so miserable that it's OK for him to be killed, what does that say about the value of a disabled life? It's already common to hear able-bodied people saying things like "If I had to use a wheelchair, I'd kill myself." How would a decision that it's OK for a severely disabled person to be killed affect these attitudes?


While making a decision about anything involving healthcare, we must be in a position to give informed consent. That means we must be aware of all the pros and cons of the situation. I don't know enough about the facts of Tony's case to comment on that: but I've heard of previous cases where people requesting death had had no opportunity to live in the community (obviously with appropriate support). Could these people really be giving informed consent?

If assisted suicide and voluntary euthanasia are ever legalised, there will need to be very firm safeguards to make sure people are not being pressurised into requesting them. But research in the places where legalisation has already taken place suggests that this is not impossible.

The key factors for me are community living and social attitudes. We must be free to live as part of the community, and society must accommodate our needs and accept us as equal members of that society. Only then can we make truly informed decisions about whether or not to end our lives.

Suicide tourism: it's no holiday

An important vote took place recently in Zurich. The electorate were asked whether assisted suicide clinics like Dignitas should be allowed to continue offering their services to people from outside the area.

Switzerland has allowed assisted suicide since 1941, as long as it is not performed by a doctor, and the person helping has no vested interest in the death. Because assisted suicide remains illegal in much of the rest of the world, clinics like Dignitas have grown up to help visitors to the area to die.This is suicide tourism - people wanting help in dying travelling around the world to areas where assisted suicide is legal.

The founder of Dignitas, Ludwig Minnelli, claims that of those accepted as patients by Dignitas, over 70% never actually use their services. They do not plan to die, but are seeking insurance in case their illness becomes intolerable.

There’s a particular dilemma for people with progressive conditions who feel they may want to take their lives at some time in the future. Do they kill themselves now, when they don’t want to die but are still physically able to do so? Or do they wait until they feel the “right” time has come, by which time they’re no longer able to do the deed? I believe that this is why some people with progressive, non-terminal conditions seek out clinics like Dignitas.

In some cases, people want to die precisely because their condition is not terminal. They cannot bear the thought of their situation continuing indefinitely.

Jack Kevorkian, an American pathologist, claims to have helped at least 130 people to end their lives. After a videotape he had made showing him helping someone to die was shown on television, he was convicted of second degree murder. He was released from prison on parole in 2007.

Kevorkian claims to be an advocate for the terminally ill, but critics have discovered that at least 60% of those he helped to die were in fact not terminally ill. Counselling was apparently perfunctory, with no psychiatric examination, and at least 19 patients died within 24 hours of meeting Kevorkian for the first time. In at least 17 of the cases, with people complaining of chronic pain, Kevorkian did not refer them to a pain specialist. In three cases, autopsies showed no anatomical evidence of disease at all.

The data on those helped by Kevorkian also show some concerning anomalies. A substantial majority of his "clients" were female, and most had a disabling, long-term, non-fatal illness. Many listed MS as their reason for seeking death. Why were women with MS so much more likely to seek Kevorkian's services than others?

Reasons for seeking Kevorkian's help included having a disability, pain, and "being a burden". This last is particularly concerning. It would be all too easy, for instance, for interested parties to make a disabled person, already oppressed by society's attitude to disability, feel that they were a "burden" and should seek to die.

By his extreme and possibly biased actions Kevorkian has done the assisted suicide movement no favours. Any legalised assisted suicide scheme needs robust safeguards to make sure that those seeking its help have received counselling, have had the chance to receive good quality palliative care, and as far as possible have the chance to lead a full and fulfilling life.

The result of Zurich's vote? Suicide tourism can continue in the city. Over the Atlantic in the USA, it  has been reported that Kevorkian, now 82, is in hospital with pneumonia and kidney problems. I wonder whether, and if so how, his views have changed as a result of his own ill health?

Locked in to happiness?

Imagine you were completely paralysed.

Completely.

Only able to communicate by moving your eyes, or maybe blinking.

Could you possibly be happy that way? Or would you want to die?

That's the situation for people with locked-in syndrome, a condition where someone is awake and aware but unable to move or communicate verbally due to paralysis of nearly all voluntary muscles in the body (the exceptions are the eye muscles). In total locked-in syndrome, the eyes are paralysed as well.

Possible causes of locked-in syndrome include:

• Traumatic brain injury
• Diseases of the circulatory system
• Medication overdose
• Damage to nerve cells, particularly destruction of the myelin sheath, caused by disease (e.g.. central pontine myelinolysis secondary to rapid correction of hyponatremia)
• A stroke or brain haemorrhage, usually of the basilar artery

Public awareness of the condition owes a lot to the book and film The Diving Bell and the Butterfly, the autobiographical story of French magazine editor Jean-Dominique Bauby, who has locked-in syndrome after a massive stroke. He dictated the book letter by letter, using a letter chart and the one eyelid he could control. It's a wonderful book (and film). Read/watch if you haven't already.

 

So, why have I been moved to blog about locked-in syndrome? Well, a recent (and admittedly small) survey suggests, perhaps against our expectations, that the majority of people in LIS are happy. The longer they have been in LIS, the more likely happiness is. Things associated with unhappiness included dissatisfaction with immobility in the community, anxiety, lack of recreational activities, and loss of speech. The authors of the study suggest that recreational and mobility-focused activities should be increased, and anti-anxiety medications used when necessary.

The response rate to the survey was quite good (56%), but nearly a quarter of the responses had to be excluded from the analysis because some of the quality of life data was missing. These respondents may have been different from the others in some important way that has not been considered.

When I was researching disabled people's attitudes to end of life issues, one message that came over very strongly was that although patterns could be discerned, every individual was different. Able-bodied people are sometimes heard to say things like "If I had to use a wheelchair, I'd kill myself". Those of us who've become disabled and now use wheelchairs have learnt that really, it's not that bad at all - but we set our new limit a bit further along. Perhaps with permanent catherisation, perhaps with needing hoisting. People adjust, and this is shown in the study's finding that the longer someone has been in LIS, the more likely they are to be happy.

Respondents in the study were dependent on a caregiver to complete the survey: therefore only those with a good level of trust and communication would have been able to participate. Responses may also have been affected by "self-presentation", where an individual gives the responses they think they're "meant" to give to maintain their relationships.

Even more so, the happiness of someone with that level of physical dependency is going to be hugely dependent on the quality of care they receive. This is illustrated dramatically in the film of The Diving Bell and the Butterfly when the nurses keep leaving Baudry's TV on a channel he hates, without asking him his preference.

So, what conclusions can be drawn? A majority of people in LIS are happy, but it's far from an overwhelming majority. Even among those professing themselves happy, many did not wish to be resuscitated if they had a cardiac arrest. Not conclusive evidence of happiness.

I think a huge amount of "happiness" for anyone, disabled or not, and whatever the degree of that disability, is going to come down to the amount of control the individual has over their surroundings. Even if it's as apparently little as being asked what channel the TV should go on, that's control. Choosing to go out into the community (obviously with support as needed), that's control too.

So it all comes down to the quality of the person who's watching that blinking eyelid....