OPINION

'Assisted dying would provide dignity in death'

12 January, 2012

Palliative care, no matter how good, isn’t always enough to allay the indignity and loss of control that people with terminal illness experience, says Baroness Young

Last week the Commission on Assisted Dying published its recommendations, highlighting that the current legal status of assisted dying is incoherent and inadequate. The current informal rules are at the discretion of the director of public prosecution, assistance to suicide is left in the hands of amateurs or paid strangers in a foreign country, and caring and compassionate friends and relatives are thrust into the role of suspects.

Several professional witnesses told us the current rules stifle open discussion about choices at the end of life between patients and their health professional.

We suggest that the law could be changed, if Parliament permits, to allow those with a terminal illness and less than 12 months to live the option of a more dignified death at a time they felt right. Health professionals are rightly cautious in their approach to this issue, as they are likely to be most affected by any change, and we recognise that it is into their expert hands that our framework would place the important responsibility for supporting patients through the process of requesting an assisted death.

“During the course of our research we found no evidence to suggest that changing the law on assisted dying would have a negative impact on end-of-life care”

Our system of strict safeguards would protect both patients and professionals. To be eligible, the person who requests assisted suicide would need to be diagnosed as having a terminal illness and have mental capacity (which could preclude those with clinical depression). Two independent doctors must also be able to agree that the person’s decision has not been subject to any external pressure, where possible gathering insights from nurses or social workers who know the patient and their personal circumstances. Also, to ensure that the safeguards are correctly adhered to in each case, we recommend that a national monitoring commission should be established to oversee the system. Professionals who wished to opt out on moral or religious grounds could do so as is the case with abortion law.

We have made these recommendations in the knowledge that, while there is clearly much room for improvement, palliative care in this country is among the best in the world. During the course of our research we found no evidence to suggest that changing the law on assisted dying would have a negative impact on end-of-life care. In fact, we found quite the opposite. We found that in countries where assisted dying is legal, for example in Belgium and the Netherlands, legal change has been accompanied by greater investment and improvements in the quality of palliative care. On top of this, we heard evidence from individuals for whom palliation, no matter how good, wasn’t enough to allay the indignity and loss of control of their situation.

We think there is a strong case for redress of this issue, which denies hundreds of people dignity in their death, and we hope the medical profession will support us on this. A duty of care should not exclude the terminally ill. Our safeguards would place nurses and doctors on the frontline in any new system and the responsibility would be great, but 80% of the public support assisted dying being an option for those with terminal illness and we believe, like them, that this is a problem too big to ignore any longer.

Baroness Young

Readers' comments (18)

cogito | 12-Jan-2012 2:40 pm
The debate about the legalisation of assisted suicide is deeply entrenched, and neither side will be persuaded by the other side's arguments.

Personally, I do not understand the answers from the 'anti' camp to this question:

'Why should I suffer as I die, to satisfy your beliefs ?'.

But I also see the need to have measures which would properly protect individuals who are less than normally-capable, of expressing their own wishes, or who are more easily influenced by others than most people are.

However, it is 'peculiar' that suicide is not illegal, while assisted suicide is - this probably means that 'distressing' suicides (and failed attempts), for example by paracetamol overdoses, are more common while assited suicide is illegal, than they would be if it were legalised.
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Steve Fouch | 13-Jan-2012 10:17 am
This does feel like the revisiting of familiar territory, with nothing new to add. In the last few years there has been a major House of Lords Commission on this issue, and two bills (one at Westminster and one at Holyrood) and an amendment to primary legislation to bring in legalised assited suicide. All these legal changes were thrown out by their respective parliaments after due examination. Similar stories are happening in many other countries.

The reasons? Firstly because that no adequate safeguards have ever been proposed to stop vulnerable people being pressurised into ending their lives in any of the bills, amendments and reports that have been produced. Secondly, to change the law to such an extent for a tiny number of requests would require clear evidence of need and that the safety of other patients could be maintained. To date this has not happened.

Here are just a few of the problems. Firstly, people may express a wish to die, but there is plenty of evidence that the vast majority change their mind when the key symptoms, fears and concerns are addressed. Secondly, making an accurate prognosis is just not possible. You can only give an estimate based on average survival rates, but the true survival time could be vastly different in practice. How many high profile cases have we seen in recent years of people being told they hae months to live who have been alive years later (Ronnie Biggs and Al Magrahi to name two infamous cases, but consider Stephen Hawking who at 22 was told he had a couple years to live and has just celebrated his 70th birthday!). It is very hard to say which patients would only have a year to live.

It is also true that many of the calls for assisted dying are coming from a tiny number of people with degenerative illnesses that are not necessarily terminal. If the law was changed for those with terminal prognosis, how long before calls would be made to extend it to those with non-terminal conditions? No wonder all the major disability organisations and the large majority disabled rights campaigners are opposed to any changes in the law (a much under reported fact).

As Baroness Young rightly points out, the UK has the best end of life care in the world. An Economist Intelligence Unit survey in 2010 ranked the UK at number one on most indicators. The same report also pointed out that the main impact of calls for the legalisation of assisted suicide and euthanasia in most countries has been to pressurise governments to improve palliative care services instead. If that all this report achieves, then we can be thankful. Let’s hope we don’t instead start down the route of relaxing legal protections for vulnerable patients.
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tinkerbell | 13-Jan-2012 12:32 pm
Steve Fouch | 13-Jan-2012 10:17 am

Thank you. Well said. Because this is such a huge dilemma for me i am always oscillating between both sides of the debate. I do not usually sit on the fence. Previously i felt sure that assisted dying was wrong until i watched the documentary on Dignitas, then i felt that was wrong that a person should have to travel abroad to end their lifesooner and maybe should be able to do so here. I really don't know which side of the fence i will evetually land on, if ever, but am definite that that i would not want to be part of the administering team, so i guess in that respect i am against. Human nature being what it is the system will eventually be abused.
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DH Agent - as if ! | 13-Jan-2012 3:07 pm
Steve Fouch | 13-Jan-2012 10:17 am

Making an accurate prognosis may not be possible in all cases, but patients are supposedly autonomous and are usually regarded as making their own choices once provided with the best available clinical prognoses.

And it is often pretty clear that someone probably will die, even if exactly how soon is less clear: but suffering is something experienced by people, and a person knows how much pain and distress they are experiencing, because they are the judge of that.

So I cannot help thinking, if I were the person suffering enough to request assisted suicide, I would be in favour of assisted suicide ! I'm less sure what my position would be, if I were the person asked to do the assisting - although I don't actually like the idea of clinicians doing this, for psychological reasons.

This is complicated, but you cannot argue that being unable to design 'safeguards for the vulnerable' relieves the pain of people in intolerable distress !
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tinkerbell | 13-Jan-2012 4:48 pm
George Kuchanny | 7-Jan-2012 0:51 am

The pivotal thing here is that we should be adamant about one thing. The person who wants to end their own life must administer the fatal dose themselves.

No ifs buts or caveats. Then it is suicide. Otherwise we may get to the situation of pre 2nd world war Germany or the current situation in Holland where people are culled without concrete evidence thatthis is what they wanted. Sad but true.

Systems get lax and eventually abused over time. 'Clever' interpretations of law begin to proliferate. Another reason why medicine and Government should stand at arms length in my opinion.

Otherwise 'economically inactive' people may, in some horrible future be simply killed. Nasty thought eh? So let us not be swayed by arguments of helping by actually administering fatal doses (opiates I would imagine) to others. If they really want to go then they have to start the syringe driver themselves. No exceptions

michael stone | 13-Jan-2012 3:07 pm
This is complicated, but you cannot argue that being unable to design 'safeguards for the vulnerable' relieves the pain of people in intolerable distress !

But is must be discussed!
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tinkerbell | 13-Jan-2012 4:50 pm
I have re-posted Georges post as it was so good as a reminder of the road we may be going down.
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sally carson | 14-Jan-2012 0:26 am
Fair comments Tinkerbell but If you gave the medication, would you just walk away and leave them? There have been many cases of reactions to the high barbiturate medication, such as clonus, vomiting, induce permanant coma without death which has led to practitioner having to administer a lethal dose, thus changing the situation to Euthanasia. How would you feel then? The same hand that comforts will then adminster the lethal dose! Most nurses and nearly all Drs do NOT want to be involved.A few failed deaths have gone home and not saught assistance again!
As regards the commission, it was not a Government initiative! It was pannelled by several Pro-euthanasia persons. I watched vidoes of witnessess and there WAS evidence on the negative affect on care. An oncologist stated that if this became legal, it would have to be offered as an alternative, on diagnosis, thus adding to the burden of an, already stressed patient. They may think their relative would benefit from their early demise, even though prior to the option being given, they may not have considered it. The Dr. went on to say that even the VERY few that had mentioned it to staff, when the Team got involved to iron out the worries and explain treatments and outcomes, many were at peace to go through what ever lay before them. How we die has lasting effect on the loved ones left behind and most speak of it being a very rich experience. This would not be the case if Assisted Suicide happened, many family famileies would feel sad and even guilty that their tresured friend/loved one, did not want to go on living-that IS a negative effect.
It would have negative, demoralizing effect on carers, esp if they have been involved for many years, to find their charge had been approached to end it all.
It is very fulfilling for palliative care providers to meet all the hiolistic needs of the patients:- symptoms control, psychological, social and spirtiual needs.
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Anonymous | 14-Jan-2012 1:05 am
What is undignified about living until one dies, naturally? There is no better exit than to have a caring palliative care team take care of ALL worries, symptoms and side-effects, and lead patients to a symptom-free peaceful end with relatives around them? No relative Then staff will sit with them and offer comfort as needed. The Carer must not be turned killer. I have sat with many and find it a precious experience. I have never witnessed a 'bad death'
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DH Agent - as if ! | 14-Jan-2012 11:34 am
tinkerbell | 13-Jan-2012 4:48 pm

'The pivotal thing here is that we should be adamant about one thing. The person who wants to end their own life must administer the fatal dose themselves.'

The crucial factor is that it must be SUICIDE, assisted or otherwise. The term assisted dying is unsatisfactory because it does not make it plain that this is suicide, and as you say as soon as you stray away from the concept of suicide, you are moving towards Nazi-style murder of 'undesirable people': I am definitely against murder !

And when you said 'but it must be discussed !' in response to my point, I was asking 'how does society justify forcing a very distressed dying person, to remain in distress against that person's own wishes ?'. That is really a 'moral' question, for the anti brigade. If optimum palliative care has been provided, and a patient still considers his or her suffering to be unbearable, I don't see a discussion about whether or not the distress is real - it is real, if the person who is feeling it, considers it to be there.

sally carson | 14-Jan-2012 0:26 am

Out of interest, do you believe that suicide itself should be illegal ? Because anybody who beleives that suicide itself should be illegal, must of necessity consider that assisted suicide should also remain illegal.

I also think you adhere to the theory that there can be 'a good death', something I have just been discussing in an e-mail. That e-mail went thus:

'I made a comment, in the attachment, that I don't really like this 'a good death' term, even though I can see where it comes from. To elaborate.

If a clinician knows someone will die, then helping that person to die 'well' is an obvious objective - and if that objective is achieved, describing the death as 'a good death' might 'make sense' to a clinician.

But I'm not sure it can make much sense to those who loved the deceased, and are left behind.

If we think of the situation as comprising a 'life leading up to death' and a 'actively dying' stage, then I can't really see how a bereaved person, is likely to think of the combination of the two as 'good'.

A 'fit and active' 83 yr old, who suddenly suffers a heart attack while playing golf, collapses and dies on the spot, had a fairly painless 'actively dying' stage, preceded by a good 'life leading up to death' stage (because there was no illness, as such).

But the bereaved will still, I think, tend to have a feeling that 'the death was too soon' - that some 'potentially good life' was denied/wasted, so overall that isn't a 'good death'.

Someone who suffers a lot during the 'life leading up to death' stage, and is seen to be suffering by the people who loved him/her, leaves behind the memory of that suffering and distress, so that isn't a 'good' death either.

So I don't really see, that many bereaved people who lose a loved one, would think of almost any death as 'good'.

But it is easy to see the death as 'worse than it needed to be'. That chap on Dispatches, who was dying at home with inadequate pain relief because the Day DN team were supposed to set up a morphine driver, had not done so, and were not answering their phone from either the wife or the GP, and whose wife kept phoning paramedics who would keep giving him pain relief which only lasted for a few hours then wore off, didn't receive the level of pain relief he should have had. His wife was justifiably angry about that - and it is no use telling the bereaved that the GP, day DN team, Night DN Team and paramedics are not 'a system as a whole' because they should be, and the wife did not set up their protocols !

Similarly, the bereaved will not be happy if they know a loved one was forced or manoeuvred into dying in a location not of the pateint's choice, again because 'the system' made the death worse.

So, to my mind it is a case of 'clinicians can make deaths worse', something to be avoided, rather than it being correct to think that clinicians can 'facilitate a good death'.

As usual, the importance of this is 'mindset and 'understanding'' - it looks so different when viewed from the perspective of the relative, that it should be obvious as soon as that is pointed out,'
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maria gough | 16-Jan-2012 6:06 pm
Any move towards the legalisation of Assisted Suicide would need a holistic and practical approach.

During my Masters in Medical Law I wrote to the Association of Life Assurers and asked would they pay out on life assurance policies in the event of this sort of death - particularly to a relative who would gain financially from that patient's death who had supported that 'assisted' death in any way.

I got a letter back saying 'this is a very interesting question and one I will bring up at the next meeting blah blah blah' - they never got back to me with an answer.

It is important that financial pressure to die sooner rather than later is not an issue in any assisted suicide - those who do not have critical illness cover may be most at risk of wanting to die soon to ensure their family's financial wellbeing.

Assisted Suicide is not just a medical or social issue.
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paula hagan | 17-Jan-2012 9:10 am
No matter how much this debate concerning 'assisted suicide' is addressed are we not losing sight of the fact that nobody, health professional or otherwise is free of being complicit in the death of another if involved in this latest proposed option to 'empty beds'. Whether the patients take the fatal dose themselves or not they still had to be handed the drugs by another. If we take the time to talk through any fears and concerns a prospective 'assisted suicide' candidate has about his/her condition we would surely find less inclination to follow a path that very often is addressed through coercion rather than desire. If palliative care is administered thoughtfully and correctly there is no need for a terminally ill patient to suffer. Likewise I am also alarmed by the mis-use of 'end of life' pathways.
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Teresa Lynch | 19-Jan-2012 0:14 am
What do we really mean by ‘indignity and loss of control ‘?
Baroness Young will be aware that Lord Falconer’s Commission on Assisted Suicide was supported by advocates of assisted suicide. Those who accept uncritically its findings and recommendations overlook this fundamental flaw of bias.
To endorse such a Commission’s findings does a disservice to those patients in the Netherlands who, despite so called ‘safeguards’ within the law, have been killed without their wish. Such a process does not ‘provide dignity in death’ or more ‘control’ as Baroness Young suggests would be derived from a change in UK law. Furthermore, these patients did not have to be ‘assisted’ in their dying by ‘strangers in a foreign country’, but were killed by their own carers, in their own country and against their will.
Therefore, I find it incomprehensible that Baroness Young asserts, that the Commission ‘found no evidence to suggest that changing the law on assisted dying would have a negative impact on end-of-life care’.
In light of these points, proponents of assisted suicide do not encourage vulnerable groups to feel anything other than at great risk from a change in current UK law. It is now well–established that disabled people are extremely concerned about a possible change in the law. Despite it being a long-held expectation that carers are to be trusted, vulnerable groups fear that in the event of a change in the law on assisted suicide, safeguards, in no time, may be considered as barriers to be overcome, particularly in financially challenging times.

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Anonymous | 23-Jan-2012 7:35 am
are we failing our patients?

Online Telegraph

14% rise in British members of Dignitas

The number of British people joining Dignitas has risen sharply as they seek an “insurance policy” in case they ever need help to end their lives, campaigners say.

By Martin Beckford, Social Affairs Editor7:00AM GMT 23 Jan 2012
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DH Agent - as if ! | 23-Jan-2012 3:03 pm
Why should people die in agony, if they object to being in agony ?

Do the people above who are clearly against assisted suicide, believe that permanent sedation should be provided on request if other pain-relief measures fail (as decided by the patient who is actually undergoing the suffering) ? Or, is that 'assisted suicide' ?
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Teresa Lynch | 23-Jan-2012 10:29 pm
Sedating patients into unconsciousness and also deliberately depriving them of food and water will end life for that patient.

“The World Health Organization has demonstrated that access to pain-relieving drugs, along with a simple educational program, can achieve relief in the vast majority of patients. Specialists in various parts of the world estimate these basic approaches can control 85 to 98 percent of cases. The remaining cases require more careful attention and the use of multiple drugs and therapies to achieve complete relief.”[1]

These words were written in 1995. Professionals aim to move forward in the challenges of medicine and healthcare, including the problem of pain management. Many benefits for patients have been achieved over time by meeting such challenges which appeared insurmountable at the time.
[1] Dr. John Scott, “FEAR AND FALSE PROMISES: The Challenge of Pain in the Terminally Ill” in EUTHANASIA AND ASSISTED SUICIDE: The Current Debate , ed. Ian Gentles (Toronto: Stoddart Books, 1995), p. 96.
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DH Agent - as if ! | 24-Jan-2012 11:19 am
Teresa Lynch | 23-Jan-2012 10:29 pm

IF 'acceptable relief' were possible for EVERY patient, I would accept your position.

But I do not believe that currently EVERY DYING PERSON dies with pain relief which the PATIENT would judge as adequate.

And of course permanent sedation leads to death (unless artificial feeding is also provided)- which is why I could only support it where the patient has requested it !
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Anonymous | 24-Jan-2012 12:05 pm
michael stone | 13-Jan-2012 3:07 pm
Steve Fouch | 13-Jan-2012 10:17 am

michael stone | 14-Jan-2012 11:34 am
tinkerbell | 13-Jan-2012 4:48 pm

michael stone | 23-Jan-2012 3:03 pm

michael stone | 24-Jan-2012 11:19 am
Teresa Lynch | 23-Jan-2012 10:29 pm

???????????
!!!!!!!!!!!!!!!
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sally carson | 19-Apr-2012 9:41 pm
Sorry to be so late in answering i whether I believe suicide should be illegal, The answer is no! Suicide was de-criminalised because it is realised that any one seeking death rather than life, must be depressed, mentally unstable or just looking for an alternatvie from their present condintion. So it is with those seeking assisted suicide. It is because they are affraid to face pain or an undignified departure. They need to be convinced that advances (still needed) in palliative care will mean they will not suffer and will be treated with dignity by caring staff or relatives.
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