The campaign for dignity in dying

A new home for our blog...

noreply@blogger.com (James Harris) — Wed, 03 Aug 2011 11:50:00 +0000

Over the last two years this blog has charted the twists and turns of the campaign for greater choice at the end-of-life. Themes have included:

As a society we need to re-evaluate the way we deal with death and dying
Difficult as it may be, this is an issue that we must face as it affects us all
The most important person in the dying process is the dying person themselves
That whenever reasonable, their choices should be respected
Respecting informed choice, rather than forcing decisions underground, does more to protect people than turning a blind eye to their wishes

We need to improve access to good quality end-of-life care sooner rather than later. We also need to change the law on assisted dying sooner rather than later.

To help bring this about, we have set up a new home for this blog at:

www.campaignfordignityindying.org

Campaignfordignityindying.org is an interactive campaign website, created to help those who support a change the law on assisted dying to campaign with us. It provides the necessary facts and figures to argue the case for assisted dying, as well as tools to assist members and supporters to write to their MP’s, write to their local papers, spread the word on assisted dying and contribute to the blog.

This blog will remain open to anyone who wishes to trail through its archives.

I hope you will join us at the new site, and thank you for reading...

Research update...

noreply@blogger.com (James Harris) — Fri, 22 Jul 2011 08:55:00 +0000

Philip Satherley, Research and Policy Officer for Dignity in Dying and Compassion in Dying, blogs:

To ensure our campaign is evidence-based, we always strive to keep up-to-date with the latest research publications. Two have come to my attention over the past few weeks, the first examines the desire for a hastened death in a UK palliative population, and the second the prevalence of depression in requests for voluntary euthanasia and assisted dying (in The Netherlands and Oregon). It’s exactly this type of evidence which we use to inform policy and strengthen our model for assisted dying in the UK, and to ensure that potentially vulnerable people are protected.

The first research paper examined requests for a hastened death in a UK palliative population. Patients were surveyed at two points (at referral to the palliative service and then four weeks later). 14.7% (44/300) of participants expressed a desire for hastened death (DHD) when first surveyed. When asked again four weeks later, 35% of these participants no longer reported DHD. Of those who reported no DHD when first asked, 8% reported it when asked four weeks later. Only one participant maintained a ‘strong desire’ for death across the study.

The authors state that “The argument for legalisation of assisted dying is based on provision for those with a persistent wish for death. People fulfilling this criterion are likely to be a small minority of those expressing a desire to die...”. We would agree with this, but add that it is a significant and important minority. Obviously, assisted dying for terminally ill adults with mental capacity is not legal practice in the UK, and requesting a hastened death in a system where it cannot be legally practiced is different than when a terminally ill patient knows that a request for specific assistance to die will be considered (subject to safeguards). Essentially, the figures from this study cannot be used to predict the numbers of terminally ill patients who might ask for assisted dying where it legalised in the UK. They are interesting nonetheless.

The authors draw on other research which suggests that palliative care provision may be an effective intervention for easing depression and anxiety, which is one of the causes of DHD. It’s interesting that despite being enrolled in palliative care, some people developed a desire to die as their symptoms progressed. This does not mean that palliative care is ‘failing’ them. In Oregon (where assisted dying has been practiced safely since 1997) in 2010, 92.6% of patients who had an assisted death were enrolled in hospice care at the time of death. This demonstrates that the presence of palliative and supportive care services does not negate the need for some terminally ill individuals to request and receive legal assistance to die (0.2% of deaths per year in Oregon are as a result of assisted dying). A study from Oregon found that 17% of respondents personally considered aid in dying and only 1-2% formally requested it, which demonstrates that the possibility of assisted dying is relevant, and brings comfort to, a far wider group than the minority who eventually use it.

The second of these papers was a systematic review (which involves bringing together evidence, using a pre-defined methodology, from similar studies). The authors examined already published research evidence from The Netherlands and Oregon on frequency of depression in patients who requested (and were granted or refused) voluntary euthanasia (in The Netherlands - where the physician directly ends the life of a requesting patient who has a terminal or chronic illness) and assisted dying (in Oregon – where terminally ill, mentally competent adults, after meeting strict criteria self-administer life-ending medication). Whilst The Netherlands practices voluntary euthanasia, which Dignity in Dying does not campaign for, it’s important we are up-to-date with their practices.

In the Netherlands, there is strong evidence to show that depression is a significant factor in physicians refusing voluntary euthanasia requests, i.e. the system is successful at screening out requests motivated by depression. Evidence does not demonstrate that depression is more common in patients making a request for voluntary euthanasia than in terminally ill patients who make no request.

One study (originally published in 2007) from Oregon was included in the systematic review and has been useful in informing how we would want assisted dying to be practiced in the UK. The authors report that 1 in 4 people who requested assistance had symptoms of depression and 1 in 6 who died had symptoms of depression. However, the authors point out that some of the indicators used to measure depression may have, in fact, been measuring the common side-effects of terminal illness (e.g. loss of appetite). Other research has found that a level of ‘appropriate sadness’, or depression, is considered normal in terminally ill patients approaching the end of their life. This 2007 article is the first research of its kind and there is more to learn about depression in those terminally ill patients who request assisted dying. Further, whilst more research is needed on how depression may affect the decision-making of terminally ill patients, the existence of depression does not mean that a person lacks capacity; it does not necessarily impact on a patient’s ability to make a rational decision about choosing assisted dying.

Under the Oregon legislation, if either doctor believes the patient may be suffering from a psychiatric or psychological disorder or depression causing impaired judgement, they refer the patient for psychiatric consultation. Dignity in Dying’s view is that, as in Oregon, where there is a concern that a patient may lack capacity, or that their capacity may be impaired (for example by depression) the patient must be referred to a psychiatrist for assessment. If the psychiatrist finds that the patient does have capacity, they would still be eligible for assisted dying. Dignity in Dying is considering whether referral to a psychiatrist should be an automatic safeguard in any new legislation.

So what do these papers tell us? Firstly that a small, but significant, minority of patients in palliative care request a hastened death and by extension that palliative care cannot ‘treat’ all patients and some will persistently request that their lives be shortened. This is not a failing - it is a fact of life. Secondly, that depression in patients who request assistance in Oregon and The Netherlands is taken seriously. It is a significant factor in refusing voluntary euthanasia requests in the Netherlands and, that when a patient has symptoms of depression in Oregon they will still only be allowed to pursue this choice if they have mental capacity. That is not to say we cannot come up with an even safer process in the UK – this research helps ensure that the debate on necessary safeguards is not just theoretical but also evidence-based.

The rising of a false dawn...

noreply@blogger.com (James Harris) — Tue, 19 Jul 2011 15:22:00 +0000

Patron of Living and Dying Well, Lord Alton of Liverpool gave a recent speech to Right to Life, and made the following comments:

I want to speak to you about a fight. But our fight isn’t about property, nationality, religion or any of the other common reasons for war; neither will it be waged with the traditional instruments of conflict. The fight facing us is about the very foundation of civilisation; the value without which organised society has no meaning and law no legitimacy: the protection of the dignity of human life... with demographic pressure increasing, the economic impetus to find some way of easing that pressure grows. It seems that the strategy that has been chosen here is to label those disabled or elderly people as living ‘undignified’ lives and then legislate to allow people to end such indignity... let me end by insisting that there is an absolute value to life. But it is not enough to simply say we are against abortion, embryo experimentation, cloning or euthanasia...We must fearlessly oppose a culture of death but also use our resources and energy to actively promote a humane alternative: a culture of life... there can be no neutrals; no quiet life; no going back; and believe me there will be sacrifices.

This is in contrast to the sentiments expressed by Living and Dying Well last August:

‘Assisted dying’ has become like trench warfare, with charge and counter-charge and with ‘spinning’ of argument and counter-argument. We are not in that business... We accept that those who disagree with us have honourable motives and that some of the arguments they advance provide food for serious thought. We are not here to attack them, but rather to try and ensure that Parliament and the public are given the full picture in an objective and evidence-based manner so that they can make up their minds on the basis of fact rather than spin.

Clearly someone at Living and Dying Well needs to tell their Patrons that hostilities have (apparently) ended.

Incidentally, Lord Alton states that the campaign for choice at the end of life continues:

...despite consistent parliamentary rejection in vote after vote, all of which have been decided in recent years

Ironically, he closes his speech by quoting William Wilberforce. It took Wilberforce twenty years to end the British trade in enslaved people and almost thirty more before slavery itself became illegal. Thankfully, he didn’t give up after parliament initially rejected his proposals.

Farewell and good luck...

noreply@blogger.com (James Harris) — Fri, 15 Jul 2011 14:58:00 +0000

Emily Halsall, Dignity in Dying’s Senior Campaigns Officer, blogs:

Today is a sad day for me as my three years working as Campaigns Officer for Dignity in Dying come to an end and I leave the campaign for a new life overseas.

I joined Dignity in Dying because I saw my Mum die of cancer seven years ago, and it really struck me then how little we actually talk or think about dying. We simply don’t think enough about what will happen when we get to the end of our lives, and we certainly don’t have enough choice when we do get there.

I still feel the same, but things have moved on significantly in just the small amount of time I have been working on this long-fought campaign. The campaign to legalise assisted dying is rarely not in the news; Debbie Purdy’s victory in the House of Lords led to the first legal recognition that in some circumstances, people should not be prosecuted for assisting someone to die; we have the first ever Government End-of-Life Care Strategy; our partner charity Compassion in Dying set up a free-phone End-of-Life Rights Information Line; and new bloggers and online supporters seem to pop up every day demanding a change in the way we manage death and dying.

There’s still a long way to go at Dignity in Dying, we haven’t legalised assisted dying, but I am proud of everything we’ve achieved so far and along the way I have met the most inspiring supporters and staff team I think I’ll ever work with. It’s because of them that I am confident that it won’t be long before we see the change we all want.

Assisted dying - the case for change

noreply@blogger.com (James Harris) — Thu, 07 Jul 2011 10:46:00 +0000

Victoria Holloway, Dignity in Dying’s Parliamentary Support Officer, blogs:

Any change in the law must receive careful consideration from parliamentarians and changing the law to allow terminally ill mentally competent adults the choice of an assisted death is no exception. As an “issue of conscience”, members in the House of Commons and Lords will have to decide for themselves whether the situation and current law is fit for purpose, but also if a change would harm the public or better protect them.

At the moment we believe that people are being exposed to considerable risks without a safeguarded law protecting against on-going practices:

0.21% of deaths attended by a medical practitioner in the UK were as a result of voluntary euthanasia and 0.30% deaths ended without an explicit request from the patient. These percentages may seem small but they equate to approximately 2,500 deaths per year.
Approximately 160 British citizens have been helped to end their lives in Switzerland and a further 800 are members of Dignitas.
Britons who are too ill to travel or who can’t afford to go to Switzerland attempt suicide alone, or ask a loved one to help them die.
The Director of Public Prosecutions’ (DPP) prosecuting policy on assisted suicide has given greater clarity on how prosecutorial discretion is exercised and has effectively decriminalised amateur assistance to die.

The problem is that a small but significant number are having an assisted death illegally and without safeguards. Those Britons who can make it to Dignitas are using a system with much less stringent safeguards than we propose and those who can’t are taking matters into their own hands in secret, again without safeguards often ending in botched attempts to die. In addition the DPP’s prosecuting policy checks take place after a person has died when it is too late to prevent potential abuse/coercion or to have a full consideration of someone’s illness when their diagnosis, prognosis and mental capacity can be checked and possible alternatives explored.

In short, Britons are ending their lives in circumstances which are preventable and these risky practices can be stopped with a safeguarded law. So what would this legislation look like?

The individual must be a terminally ill adult who is a resident of the UK. People with a chronic illness or disability (unless they also had a terminal illness) would not be eligible. There are several definitions of terminal illness which could be incorporated into the legislation.
The patient must have mental capacity to make the decision, and be referred to a psychiatrist for assessment if there is any doubt about this.
The process must be entirely voluntary and initiated by the patient – a doctor could not suggest assisted dying.
Two doctors, a consultant doctor and an independent doctor, must agree that the patient meets the eligibility criteria set down in the legislation (terminally ill, mentally competent, making a voluntary request and so on).
The doctors must inform the patient that they can revoke their request at any time.
There must be discussions to explore why the patient wants an assisted death, pain and symptom relief as well as other palliative and supportive options. All patients who request an assisted death should have been offered palliative care.
A ‘cooling off’ period between the request for assistance being formally accepted (i.e. after all the safeguards have been met) and receiving the life-ending prescription (e.g. 14 days) to ensure that patient has further time to consider their actions.
The patient must self-administer the life-ending medication, ensuring that they make the decision and are in control of the final act. The doctor does not end the patient’s life directly; rather the patient controls their own death.
Data would be recorded to ensure the process was effectively monitored and reported.

All of these safeguards would be a minimum that legislation would include and would offer protection to all individuals requesting assistance, not just potentially vulnerable adults.

These options are suggested because we can look at the US where a few progressive states have assisted dying legislation and learn from their examples in drafting the safest law that works for us here in the UK. We can see from the US state of Oregon since they introduced the Death with Dignity Act 1997 eligibility has not been extended beyond terminally ill mentally competent adults, potentially vulnerable groups are not being disproportionately assisted to die and people choose assisted death for ‘person-centred’ reasons such as ‘loss of autonomy’ and ‘being less able to engage in enjoyable activities’ and not due to external influences. We also know people choosing assisted dying do not do so due to a lack of other options. Palliative care in Oregon is delivered to a very high standard and finally, and quite importantly, numbers remain low as assisted dying figures have not risen above 0.2% of all deaths in Oregon since legalisation.

Parliamentarians have a heavy decision on their shoulders. It is unquestionably an emotive topic -however changing the law is not just about compassion towards the dying but also greater protection. We should not keep in place an out-of-date and dangerous law.

More evidence on the case for change is available via our new publication A matter of facts.

What do we want? Consensus.When do we want it? Now...

noreply@blogger.com (James Harris) — Tue, 05 Jul 2011 10:24:00 +0000

Dignity in Dying’s aim is to improve, as best we can, the quality of people’s last days. To that end we support informed patient choice (including the option of assisted dying within up-front safeguards) and improved access to end-of-life care. It also means that we have an interest in access to social care more broadly, which can impact enormously on people’s quality of life towards the end of life.

With an ageing demographic this is a problem that cannot be ignored. As a society, and via the National Health Service, we took a decision, which the vast majority of us still support, to provide healthcare free at the point of delivery. Social care however is not included and access to it is means tested. So those who need it and have assets over £23,250 are expected to pay for it.

Some argue fair enough. If someone lives in a million pound house why should the taxpayer pay for their social care? The problem is twofold. Firstly, there are a great many people who have over £23,250 in assets who don’t live in million pound houses, whose entire life’s savings will be eroded by their care costs. And secondly, illness, and the need for social care, is a lottery. Some may require little to no support, others with advanced dementia for example will require lots. Surely it is better to spread these costs out amongst us all than place the burden entirely on those affected?

The mistake is to think that this doesn’t affect us. Those who don’t have direct interaction with elderly or disabled people may have more immediate and pressing concerns. But it can and will affect us all, and those we love. In my mind, it’s worth paying for.

Yesterday, and as well advertised in the media, an independent review of social care funding, The Dilnot Report (Commission on Funding of Care and Support), concluded that social care costs in England should be capped at £35,000 over a lifetime for those with assets over £100,000. The sticking point is likely to be the extra cost to the taxpayer estimated at £1.7bn a year initially, rising by 50% as greater numbers retire and need care.

The proposal is not a magic bullet, and is no National Care Service free at the point of delivery. Those in the middle are proportionately likely to pay more for their care than the very rich or very poor. However, in seeking to share responsibility for the costs of social care between the state and the individual, it is clearly a marked improvement on the very limited financial help available at present.

This is an issue that cannot be ignored. Report after report has argued that something must be done. There is no doubt that we currently live in difficult economic times, but we can only hope that a consensus emerges among the main political parties to work together on this issue, and the political instinct to kick it into the long grass is avoided. It may cost us more now, but doing nothing will cost us all more in the long run.

The future of palliative care funding

noreply@blogger.com (James Harris) — Fri, 01 Jul 2011 13:51:00 +0000

Philip Satherley, Research and Policy Officer for Dignity in Dying and Compassion in Dying, blogs:

The Palliative Care Funding Review, which both draws attention to the current state of end-of-life care provision in England and suggests future ways of working to ensure that we all receive good quality care, has just been published.

One of the significant recommendations of the review is that the funding system for palliative care needs to change. This is in recognition of the drive for cost effective healthcare, the work of third sector service-provider organisations such as Macmillan and Marie Curie Cancer Care in providing excellent quality care, patient choice and the need for one system to be implemented across England. The report suggests a per-patient funding system (or ‘tariff’), whereby individual patients can decide where they receive care.

The delivery of care under this proposed system would be based on patient need, rather than age or disease. This is timely, as the need to recognise conditions other than cancers was highlighted by the National End of Life Care Intelligence Network, which reported that that 28% of deaths from lung cancer take place at home compared to around 10% of deaths involving pneumonia or acute respiratory infection. End-of-life conditions other than cancer need to be addressed.

Patient choice and a shift in the provision of care so that more home or hospice care can be delivered are also central to the funding review. Whilst we support the principle of this, we are concerned that the emphasis on home deaths might dominate the agenda. Additional measures should be taken to ensure that the provision of end-of-life care in hospitals is standardised and that patients who are hospitalised (through choice or unavoidable clinical need) can have a good death there.

Whilst place of care is important, quality of care is crucial. The National Institute for Clinical Excellence (NICE) quality standards for end-of-life care for adults (which are currently out for consultation) have been written to ensure that good quality care in the palliative/end-of-life field is delivered across all care settings, regardless of provider. These are referenced in the funding review and the principles of the quality standards should work across all care settings.

Of particular importance to the Advance Decision and Lasting Power of Attorney work that Compassion in Dying does is the review’s recommendation that every Clinical Commission Group (which is essentially the new version of PCTs) maintains an end of life locality register. These allow key information about individuals’ preferences (such as treatment preferences documented in an Advance Decision) for care at the end of life to be recorded are designed to coordinate the person’s care. These were, in fact, recommended as good practice in the 2008 End of Life Care Strategy. Those patients who are registered will have all their needs met (but what about those who aren’t registered?). Locality registers are currently being piloted across England. It is vital that these locality registers, if proven to be effective, are implemented as soon as possible.

Appropriate systems need to be put in place to ensure that conversations between all parties delivering care (especially when out-of-hours, ambulance or respite care is involved – where communication of the patient’s needs and preferences can prove challenging) are effective. This would ensure the continuity of quality care.

So in conclusion, whilst we support the general principles and recommendations of the review – that care must be consistent, that third sector organisations could be providing more specialist palliative care outside of the hospital setting and that locality registers should be implemented - we have some concerns. These centre on the potential for palliative care in hospitals to disappear off the financial agenda and the need for coordination of care between NHS and third sector providers (whilst organisations such as Marie Curie Cancer Care provide an excellent service the system in which they fit might not operate as smoothly as is needed).

We know that Britain provides amongst the best, if not the best, end-of-life care in the world.
However, report after report shows there is some way to go to ensure we achieve universal access to good quality care. As we strive to drive up standards we must ensure that this occurs across all care settings.

Informed debate?

noreply@blogger.com (James Harris) — Mon, 27 Jun 2011 13:22:00 +0000

The debate on assisted dying tends to focus on the well-documented cases of Britons travelling abroad to die – with less attention given to what is happening domestically. However, in last week’s British Medical Journal, Dr Des Spence powerfully set out that many doctors are in denial about what is already going on within existing medical practice:

Currently UK patients are electing to travel abroad to die, often prematurely, because of fear that their illness will overtake them and leave them unable to travel. We are simply exporting this issue. We know this is happening, yet we do not stop them. But there is a more fundamental fact: assisted dying is happening every day throughout the NHS. The doctrine of double effect means that doctors give large doses of morphine near the end of life. We know that this will hasten death, but we square this moral circle by accepting that we are relieving suffering. Doctors also widely withhold and withdraw treatment knowing that this will hasten death. Isn’t the reality that we are already actively engaged in assisted dying?

Shouldn’t we be honest and accept the principle of assisted dying? Then we can actively engage in the debate about what assisted dying is and what it is not, because doctors are the only profession with the experience to ensure proper safeguards and oversight.

Shortly before they died, both my maternal grandmother and grandmother in-law were sedated and artificial hydration and nutrition was removed. There was no doubt that they were dying, and there was no doubt that this process hastened their death. It took my maternal grandmother days to die (heartbreakingly my grandfather never left her side). No one called it murder or manslaughter, and no-one questioned the motives of either the medical staff or the assembled families. Everyone was working together to ensure that in both cases these much-loved women died as peacefully and as comfortably as possible.

This is going on up and down the country as we speak. We have not descended into chaos, and there is no culling of the vulnerable – despite very few safeguards, if any, to regulate the process. So why would it be any different, when we introduce a law to allow the patient themselves at the end of life to control their death, if that is their wish, within safeguards. A law that would allow the full consideration of someone’s request to die when they are still alive and all of their care and treatment options can be fully explored, and a law that would build on other laws already enacted by other countries and states that have neither seen evidence of abuse nor the downgrading of end-of-life care.

So there is clearly a need for an informed public debate, from both those for and against change. Last year, Living and Dying Well, co-chaired by prominent opponent Baroness Finlay, stated:

Assisted dying’ has become like trench warfare, with charge and counter-charge and with ‘spinning’ of argument and counter-argument. We are not in that business. On the evidence presented to date, we are not convinced that it would be safe for the majority of seriously ill people if the law were to be changed to permit either physician-assisted suicide or physician-administered euthanasia. We do believe, however, that this is a serious issue for our time and that reasoned and informed debate is needed.

And their contribution to this ‘informed’ debate to date? Trying to censure the BBC for broadcasting a programme about assisted dying, telling conferences that our objective is to allow death on demand for everyone, and using ‘shock tactics’ in “evidence based” reports, that are all but devoid of evidence. Other opponents go further, personally attacking those with an open mind on the issue, and calling Dignity in Dying ‘a death-on-demand campaign’.

Perhaps what this shows is just how rattled anti-choice opponents are, as we move ever closer to a much needed change in the law. The only downside is we get a glimpse of the people pulling the levers behind the curtain: and it’s not a very nice sight.

Driving up standards of care at the end of life…

noreply@blogger.com (James Harris) — Fri, 24 Jun 2011 14:28:00 +0000

Anna Boehm, Dignity in Dying’s Policy Support Officer, blogs:

Today, the National Institute for Clinical Excellence (NICE) launched their consultation into Quality Standards on end-of-life care, which they are currently developing.

Quality Standards are “…a set of specific, concise statements that act as markers of high-quality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions”. They help to judge the performance of the NHS, guide those working within it, and enable patients to understand what service they can expect.

This consultation has important implications for end-of-life care which, as we know only too well, has faced a number of problems in the past, not least in terms of the variation in provision.

Not only has the quality of care people received varied greatly, but a serious “postcode lottery” exists. In 2008 the National Audit Office reported Primary Care Trusts' spending on end-of-life care varied between £154 and £1,684 per patient. Research carried out by the National Council for Palliative Care found that the number of places in care homes with nursing varied from 16 to 762 per 100,000 of the population at local authority level. This kind of variation is unacceptable – people should be able to access good quality care at the end of life regardless of their condition or where they live.

We hope that developing Quality Standards on end-of-life care will be a step towards rectifying the situation. And our policy team are looking forward to going through the document in detail and drafting our response!

Choosing to Die: a media round-up...

noreply@blogger.com (James Harris) — Tue, 21 Jun 2011 17:02:00 +0000

Jo Cartwright, Dignity in Dying’s Senior Press Officer blogs:

Media coverage of Choosing to Die began days before the programme even aired, incidentally so did the complaints to the BBC from opponents to a change in the law. While the debate before the broadcast was the usual ‘should they, shouldn’t they show the programme’, the debate afterwards was more interesting. There was far more coverage than one blog post can cover, but here’s a selection of the high, and low-lights.

Every broadsheet engaged with the issue and printed letters on the subject during the week following the programme. Dominic Lawson kicked off with a comment piece in the Independent. He trotted out his usual criticisms that assisted suicide (rather than assisted dying) legislation would encourage family members to pressurise their elderly relatives into choosing death for financial gain, and that the government would pressurise people to die in order that they didn’t become a financial burden on the health system.

Michael White wrote in the Guardian in support of Sir Terry Pratchett’s viewpoint that there is a need to ‘sort out the unsatisfactory state of the law’. He wrote that the documentary was well-balanced and called Terry’s Executive Assistant Rob ‘Everyman’s moral compass’. The comment sections of newspaper website’s raged, with contributions from people on both sides of the debate, but a clear majority came from those who would like to see assisted dying available in the UK.

In the midst of all this came the tragic story of Simon Bray, a young man who died on the day the documentary was broadcast following a long battle with cancer. His father spoke out in the media and demanded that people be given the right to end their life in Britain, asking opponents to try to understand what terminally ill people like his son endure against their wishes at the end of their lives. This is the reality of the suffering driving our campaign, and the reason we must keep fighting.

The Daily Mail reported ‘outrage’ against the BBC for airing Sir Terry’s documentary, with almost 900 people filing complaints; the Bishop of Exeter damning it ‘propaganda for assisted suicide’; and four senior peers writing to BBC Director-General to accuse the BBC of running an ‘orchestrated campaign’ to change the law on assisted death (more from them to come). It has since become apparent that the vast majority of complaints were filed before the programme was broadcast, and that Ofcom has only received a handful of complaints.

Most of the panel of BBC 1’s Question Time - Alex Salmond MSP, Michael Moore MP, Sir Tom Hunter, Lord Forsyth and Margaret Curran MP appeared to support assisted dying in theory, or were reluctant to admit it if they didn’t, but they argued that the balance of safeguards has prevented them voting in favour of legalising in the UK.

Author Tim Lott had his say in the Independent, stating that, though the documentary was not a polemic, it was clearly made to promote the cause of assisted suicide and he himself is concerned that legalising assisted dying will result in a slippery slope. The article instigated a debate on the letters page, with four letters criticising points made in his and Dominic Lawson’s articles. Readers raised the point that assisted dying is not an alternative to good palliative care, that Mr Lott who was at one stage considering his own suicide would not have qualified for an assisted death under Lord Joffe’s assisted dying bill as he was not terminally ill nor of sound mind, the demand for physician-assisted dying remains low in countries that have legalised assisted dying.

The letters page in the Times featured a letter signed by Baronesses Campbell & Finlay, and Lords Carlile, Brennan and Alton. Their complaint was that the BBC has violated World Health Organisation guidelines by showing the documentary. They also wrote that the BBC had shown five pro-assisted dying programmes since 2008, revealing its pro-assisted dying agenda.

The Sun printed an article about Chris Larner’s experience in accompanying his ex-wife Allyson to Dignitas last year. In this exclusive interview, Chris praised Sir Terry for his sensitive handling of the issue in the documentary and urged law-makers to legalise assisted dying in the UK.

Over the weekend we saw more coverage. Suzanne Moore discussed her support for individual choice in death in the Guardian. Karen Royle spoke in the Daily Mail about accompanying her mother Rona, who had MND, to Dignitas. Karen argued that the documentary failed to address the ‘distressing reality of assisted suicide, especially for those left behind’. Peter Hitchens, also in the Mail argued that human beings are immensely, uniquely valuable and should only be legally allowed to die under exceptional circumstances like ‘self-defence’ or ‘deterrent justice’.

As the dust settles following the documentary, it is clear that both supporters and opponents of a change in the law have had ample opportunity to make their points. From my perspective, ours was quite simple: terminally ill Britons should not have to travel abroad to have an assisted death, and providing that choice here, at home within up-front safeguards, would do more to protect them than the current law. Opponents seem more muddled, some concentrated on attacking the BBC whilst others argued against the legalisation of assisted suicide for elderly or disabled people. Their inability to mount constructive arguments against allowing dying people greater choice and control over their death, in the last days and weeks of life, is perhaps a sign that they are losing the argument.

Pratchett documentary - what next?

noreply@blogger.com (James Harris) — Thu, 16 Jun 2011 14:09:00 +0000

We've had the documentary and we've had the so-called backlash of complaints (although over 700 of the 900 complaints were actually cast before the documentary even aired on national TV). So what next?

Supporters have been tweeting, facebooking, emailing and phoning asking what they should do now. Many have written blogs expressing how moved they were by the grim reality that without assisted dying in the UK, Britons are travelling hundreds of miles to die on an industrial estate in Switzerland to avoid a death they don't want. Peter Smedley, who had Motor Neurone Disease and was assisted to die during the documentary, stated unequivically that he was choosing this option before he was ready, for fear that he would not be able to act independently and travel further down the line as his illness took hold.

So what can we do, now that those of us who watched the programme have witnessed this reality? We can make Parliament act. It is time to write to our MPs and urge them to do something, to put this right. It is time we stopped relying on another country to offer the choice (albeit an expensive one) that the majority of the general public support, and that dying adults like Peter deserve.

If you are a member of a political party, please write to your party leader to ask what they will do to rectify this problem.

If not, write to your MP and ask them to support a change in the law on assisted dying. You can find out who your MP is and email them through www.writetothem.com or you can write to them at House of Commons, London, SW1A 0AA.

A few points you might like to make:
- Everyone should have access to the best possible end-of-life care, and those who want the choice should have the option of safeguarded assisted dying.
- No one should suffer against their wishes at the end of life.
- Dying Britons who want choice and control over their death should not have to travel hundreds of miles to die in a foreign country.
- Without legislation, people will continue to take matters in to their own hands without the safeguards an assisted dying law would bring.

Please do forward any responses you recieve on to the team. Many thanks for all your efforts.

Emily Halsall, Senior Campaigns Officer

Compassionate law on assisted dying is a must…

noreply@blogger.com (James Harris) — Wed, 15 Jun 2011 15:57:00 +0000

In a comment for politics.co.uk, and further to Jo's thoughts I set out my views on Choosing to Die and the issues raised by it:

Working for Dignity in Dying does not make you emotionally numb to the issues raised by our campaign. Many of us, including myself, are motivated having witnessed the bad death of a loved one. We strive to ensure that people do not have to suffer against their wishes at the end of life and believe that one day, hopefully sooner rather than later, we will look back in shock at the way we currently approach death and dying. In time, everybody approaching the end of life will be able to access good quality care and treatment, and have the choice of an assisted death, should they consider their suffering unbearable in the last days and weeks of life. But it will be a struggle, although not an insurmountable one, to make that a reality.

As with any job you can find yourself immersed in the detail of what you are doing, only to be confronted by the bigger picture. At Dignity in Dying this happens almost on a daily basis, with constant conversations with supporters and spokespeople whose testimonies about death and dying are heartbreaking. Last night’s BBC2’s documentary Choosing to Die, authored by Sir Terry Prachett, again reinforced the realities of the debate on assisted dying.

I found it deeply moving, but much like everyone else at times difficult to watch. It followed the journey of Peter Smedley, terminally ill with Motor Neurone Disease, as he travelled abroad to die at Dignitas in Switzerland. It also featured interviews with Andrew Colgan, who struggled with MS and who had also chosen to die at Dignitas and Mick, a former London cabbie with Motor Neurone Disease, who whilst supportive of ‘assisted suicide’ had chosen to die ‘naturally’ at a hospice at home in Britain. Although not keen to replicate Dignitas in Britain, Sir Terry Pratchett concluded that he respected all three men’s choices.

My own view was a mixture of sadness and anger at a law which forced Peter and Andrew to travel abroad to have the death they wanted. Deaths which struck me as coming too early in the dying process – MS, is not a terminal illness although it can have a terminal phase, and the prognosis for Motor Neurone Disease is years. However, these two men felt they had to travel abroad when still physically able to or face a death they didn’t want at home. Surely it would be much better to allow people the choice of an assisted death at home in Britain when they approach the final days of life or weeks of life, and if they are competent to make that decision.

The common argument against providing dying people with this choice, is that their autonomous decision impacts on others, and could place potentially vulnerable people in harm’s way. The law should be framed for vulnerable people, not the articulate and assured they argue. However, I believe this is a false argument and that a new law with up-front safeguards would better ensure patient safety in end-of-life decision making. The law as it stands threatens anyone who assists someone to die with up to 14 years in prison. However, in reality and subject to two key factors, that someone helps solely on compassionate grounds and that such assistance is amateur rather than professional, prosecutions are not brought. Regardless of the law, people are still taking matters into their own hands. As last night’s programme showed people are travelling abroad to die, and in addition people are ending their lives domestically sometimes with the illegal assistance of loved ones or healthcare professionals, or in other cases are using the internet as an information and counselling service. The only safeguard against possible coercion is a retrospective investigation after someone has died, when the police and the Crown Prosecutions Service have to establish the intentions of someone who has already died, and when it is too late to protect them if they didn’t want an assisted death.

Dignity in Dying believes it would be much better to allow a full consideration of someone’s request to die when they are still alive and all of their options can be discussed with healthcare professionals. Many, as evidenced by the assisted dying laws in the US states of Oregon and Washington, will choose not to have an assisted death but are reassured by having the choice. Others, subject to confirmation of their terminal condition and mental competence, will choose to control the time and manner of their death. You may disagree with their decision or not want it for yourself, but most of us appreciate that it is a more compassionate approach than forcing people to travel to a foreign country to die, or attempt to end their lives alone and behind closed doors.

Some time ago Parliament did not shy away from dealing with issues that were deemed contentious (they are only ever deemed contentious by those who disagree): they had the courage to legalise homosexuality and ban the death penalty amongst other landmark laws. I hope, and I am confident, that Parliament will find the courage to deal with this issue in the months and years to come. In doing so they will find that a clear majority of the public support them, and will pay fitting tribute to many Britons who courageously face the end of life at present confined by the decisions of others who oppose a compassionate law.

Choosing to die...

noreply@blogger.com (James Harris) — Mon, 13 Jun 2011 08:46:00 +0000

Jo Cartwright, Dignity in Dying’s Senior Press Officer, blogs:

On Friday morning I sat in a meeting room at the BBC and watched Choosing to Die alongside representatives from other patient organisations. I had expected Care Not Killing, who oppose a change in the law to be there as well, but I understand they were watching it elsewhere at the press screening.

The film sees Terry Pratchett and his assistant, Rob, go on an emotional journey through the subject of assisted dying with people who have been, or are about to be, personally affected by the issue. The people involved included Andrew Colgan, who had been diagnosed with MS in 2003; Hugo Claus’ widow and Peter and Christine Smedley. Peter was suffering from Motor Neurone Disease, and his wife was supporting him in his end-of-life decisions. I don’t think I’m giving away anything that the Daily Mail hasn’t already by saying that Terry and Rob witness the death of Peter Smedley at Dignitas. Terry called the day Peter died a ‘happy day’, and said that Peter was the bravest man he knew.

For me the overwhelming feeling throughout was the injustice that Andrew and Peter had to travel abroad to die: both before they really wanted to, in order that they were physically able to do so and to reduce the likelihood that their loved ones would be prosecuted. There are many arguments for assisted dying, but this one seems particularly important having watched the documentary. If assisted dying were legal in the UK maybe both of them would still be around today, knowing that if tomorrow’s suffering was too much to bear there was the option to ask for an assisted death at home, rather than in a Swiss industrial estate, with no risk of prosecution for their loved ones.

Dignity in Dying only advocates assisted dying for terminally ill, mentally competent adults, but in Switzerland assistance to die is available to a wider group. Sir Terry explores the issue of capacity in the programme – an issue of particular importance for him as he has Alzheimer’s disease. At the stage Andrew was at in the documentary he probably wouldn’t be considered as terminally ill, but perhaps the promise of the choice of an assisted death when he reached the terminal phase of MS would have been enough to make the rest of his life bearable.

Choosing to Die sets out the problem we are facing in the UK; some people want the choice of an assisted death. Some people are so unwilling to suffer against their wishes at the end of their lives that they travel abroad to die, or they attempt suicide at home or ask a loved one or doctor to help. What I hope this documentary will do is remind people that this is not a theoretical problem, and not one which will go away. I also hope it will move the debate forward onto how we best resolve this problem. There are no easy answers, but Dignity in Dying is very willing to work with patients, doctors, lawyers, politicians and the general public to ensure that when we do change the law to allow the choice of assisted dying to terminally ill, mentally competent adults, that we have the safest and best law possible.

Having watched the documentary I am even more delighted that we have Sir Terry on our side of this debate, and I was very pleased to hear him say as he concluded, that he’s planning on sticking around for as long as possible to see ‘assisted dying done properly in the UK’.

Farewell to friends...

noreply@blogger.com (James Harris) — Tue, 07 Jun 2011 10:05:00 +0000

Dignity in Dying’s Chief Executive, Sarah Wootton blogs:

Last week was a difficult one for the organisation - in the space of six days two of our Patrons died. On Saturday 28 May, Dr Ann McPherson CBE died of cancer aged 65, and on Friday 3 June, Miriam Karlin OBE died, also of cancer, aged 85. Both were passionate advocates of greater patient choice at the end of life, and both will be missed.

I approached Ann to be a Patron of Dignity in Dying in August 2009, when she wrote an article called ‘An interesting time to die’ in the BMJ. Ann’s career, as a greatly respected GP, as an author and as founder of Healthtalkonline, showed that she was on the side of her patients. She went on to launch Healthcare Professionals for Assisted Dying (HPAD) in October last year – a growing group of nearly 500 health professionals who want to challenge the perceived wisdom that all doctors and nurses are opposed to a change in the law to permit dying adults who are competent to make the decision, the choice of an assisted death. I think she founded Healthcare Professionals for Assisted Dying because she herself was terminally ill and wanted others in her position to have a choice that she would have liked. During the short time HPAD has existed, Ann helped eloquently demonstrate that assisted dying is an issue that doctors and other healthcare professionals need to engage with.

Miriam also became a Patron of Dignity in Dying two years ago. She was an established and well regarded actress who had roles in A Clockwork Orange, The Entertainer and Room at the Top as well as staring in the sitcom The Rag Trade. She was a member of Dignity in Dying for over thirty years and an advocate of many causes. She told us “the option of an assisted death at the end of their lives would provide the choice and control we all deserve”.

Both lived to see important developments in our campaign, most notably the Law Lords victory in 2009. But despite the subsequent and welcome clarification in the law by the Director of Public Prosecutions, at the moment Switzerland is effectively regulating which British citizens are assisted to die. That can’t be right. We need a new law that clarifies what is lawful and what isn’t so people can ask for an assisted death openly.

The best tribute that Dignity in Dying can pay Ann and Miriam is to go on to greater success, to promote the campaign, and ultimately to change the law so people do not have to suffer against their wishes at the end of life. We will do so in their memory, and the memory of many others who have died without the safeguarded choice of an assisted death.

Promoting independence, dignity and personal control at the end of life

noreply@blogger.com (James Harris) — Fri, 03 Jun 2011 15:31:00 +0000

Philip Satherley, Research and Policy Officer for Dignity in Dying and Compassion in Dying, blogs:

On Tuesday the Royal College of General Practitioners (RCGP) and the Royal College of Nursing (RCN) launched the Charter for End of Life Care. This is a short document, which will be sent out to around 8,500 family surgeries across England and addresses the issue of promoting and supporting patient choice at the end of life to ensure that independence, dignity and sense of personal control can be maintained. This is to be applauded, especially as it is a joint document between two key end of life healthcare professions.

Whilst Dignity in Dying and its charity partner Compassion in Dying support the principles (of which there are seven) contained in this Charter, there is of course much work that needs to be done to ensure that they are met in practice. I will focus on how the Charter relates to Compassion in Dying and how current end of life rights need to be better embedded in the delivery of end-of-life care. I will then touch on how the principles of the Charter relate to the assisted dying debate.

Two of the key principles in the Charter concern the recording of a patient’s end of life decisions.

“Help you think ahead so as to identify the choices that you may face, assist you to record your decisions and do our best to ensure that your wishes are fulfilled, wherever possible, by all those who offer you care and support”

“Endeavour to ensure clear written communication of your needs and wishes to those who offer care and support both within and outside of our surgery hours”

These reflects one of the core activities of Compassion in Dying, namely the promotion of Advance Decisions (which we provide free of charge) and Lasting Power of Attorneys (LPA). These allow an individual to document, in writing or with a named person, their medical treatment preferences should they lose mental capacity at the end of life. However, neither is widely used by the general public and there is no formal system (such as a central registry) for recording Advance Decisions. This means that when the information about patient’s treatment preferences are needed it is often not available; with the result that patient’s wishes are not known in order to be acted upon.

The Charter provides an opportunity to develop such a system and empower patients further.

Ongoing training and support for healthcare professionals is crucial in order for the principles of the Charter to be realises. Similarly, spending on palliative and end of life care should be sufficient to support the Charter.

Whilst assisted dying for terminally ill adults with mental capacity is not directly mentioned in the Charter the language focuses on independence, dignity and personal control which are central to Dignity in Dying’s assisted dying campaign. Dignity in Dying believes that it should be an option available for these terminally ill adults who want to control the timing and manner of their death. A safeguarded system would allow for up-front and honest conversations between GPs and patients which would allow patients to raise, voluntarily, the option of assisted dying. This does not mean they would necessarily fit the criteria for assistance, but as a by-product of this honesty, patients their families and healthcare workers could discuss this subject openly. On a final note, this Charter is not a green light to help people die as suggested by one report, nor does it allow GPs to circumnavigate current laws. It simply reflects the importance of respecting patient’s wishes at the end of life.

Why we can’t assume the status quo is safer…

noreply@blogger.com (James Harris) — Thu, 26 May 2011 13:13:00 +0000

Anna Boehm, Dignity in Dying's Policy Support Officer, blogs:

Any contribution to the debate on how we can ensure a safe and effective assisted dying law is to be welcomed so I was very interested to read the report, launched last month by the research organisation Living and Dying Well, on safeguards in assisted dying legislation. The report authors, the group’s co-Chairs Baroness Finlay and Lord Carlile, have both been fundamentally opposed to assisted dying to date, so I was curious as to how they would tackle the issue.

Although I disagree with its conclusions, the report as a whole does offer food for thought on how best to ensure any assisted dying law protects vulnerable people. For instance, the discussion on doctors and assisted dying will be useful in feeding into Dignity in Dying’s work on whether a legal or a medical assisted dying model would be most suitable for the UK.

It is always intriguing to see how people with differing views interpret objective evidence. This is no exception. For instance, the report’s interpretation of Clive Seale’s 2009 research on euthanasia in the UK is summed up as: “euthanasia, physician-assisted suicide and the ending of life without an explicit patient’s request are rare or non-existent”. My understanding is that this research found that 0.33% of deaths was as a result of non-voluntary euthanasia (when a doctor ends the life of a patient without their request or consent). Living and Dying Well are right that this isn’t particularly high, but given that the death rate in England and Wales is approximately 500,000, I’d argue that it’s not insignificant when it equates to around 1,500 cases of non-voluntary euthanasia a year.

This brings me onto a wider point. In general, I think discussion of studies’ finding would have been helpful, as would the inclusion of a few more papers (only three academic studies were used), and full referencing (some of the ‘facts’ weren’t referenced at all, for instance, the purported increase in “doctor shopping” in Oregon). This was disappointing given the blurb on front of the report asserted, rightly, that “debate needs to focus on rigorous analysis of the evidence rather than campaigning spin”.

A more fundamental problem I have with the report is its assumption that the status quo is safe – that people are protected by the law as it stands and the only danger comes from it changing. I don’t agree. At the moment people travel to Switzerland to die, take their own lives, or are assisted to die by doctors (with or without their consent, as Seale’s research shows) with no regulation. This is not mentioned in the report but, I would argue, leads to the conclusion that legalization and regulation would provide more protection than the present law.

Just as I don’t agree with the author’s assessment of the status quo, I don’t agree with their analysis that: “the purpose of the law is to protect society as a whole rather than to give choices to individuals”.

Of course, the primary duty of government is to protect its citizens and society and the law is a key means for it to do so. But that is not its sole purpose. In free, democratic societies the law protects and enshrines the freedom of its citizens as well.

As we know only too well, sometimes public safety encroaches on individual liberty, and vice versa. To say, as the Living and Dying Well report does, that either individual liberty or public safety must come first misses the point. The two must be balanced.

The campaign for assisted dying is not premised on the notion that individual choice is more important than public safety. We believe freedom to choose an assisted death should only be provided if it can be done safely, without endangering others. We are not rampant individualists reluctantly nodding towards safeguards in an attempt to placate those who care about society. We believe that an assisted dying law with strict legal safeguards would be the best way for the law to do its job – to strike the correct balance between individual liberty and public safety. This is not least because the current legal position simply does not ensure the public are protected, as I have argued above.

If the law is to fulfil this role of striking a safe balance between individual liberty and public safety, it is imperative that we get the safeguards right. That’s why the Living and Dying Well report is to be welcomed as a contribution to the debate. However, it’s a shame that they didn’t feel able to present their ideas to the Commission on Assisted Dying whose aim, after all, is to look at what system, if any, should exist to allow people assistance to die. I hope that the Commission takes the report into account as it works towards a conclusion about whether, and if so how, assisted dying can be legalised without endangering potentially vulnerable adults.

Dignity in Dying has recently published ‘A Matter of Facts’ – a free publication which looks at evidence from the UK and jurisdictions that have legalised some form of assistance to die.

Our members, the bedrock of our campaign...

noreply@blogger.com (James Harris) — Fri, 20 May 2011 11:37:00 +0000

Patrick Callaghan, Campaigns and Social Media Trainee, reports back on Dignity in Dying’s Annual General Meeting (AGM), held on Wednesday:

Staff, board members, a host of guest speakers, and nearly two hundred members gathered at the International Coffee Organisation in London for the Dignity in Dying AGM, on Wednesday. Each year, the AGM offers an opportunity to reflect on major events that have happened over the last year, and provides an afternoon of moving speeches by influential speakers. But more than that the AGM is a unique chance for our members to air their views, share opinions and inspire the campaign for change.

Before the speakers, we started with the formal business in the morning session; three new Directors were elected to the Board of Dignity in Dying by national ballot. Dame Jill Macleod Clark, Professor of Nursing at Southampton University; Dr Philip Hartropp a former Commissioning General Practitioner and Paul Rossi Chief Executive of the National Benevolent institute. We are delighted to have such influential and highly esteemed joining our Board. Dame Jill Macleod Clark has published over twenty books on nursing, health and the care of older people and in 2001 was made a Dame Commander of the British Empire. Dr Philip Hartropp recently retired as a GP, and spent much of his career working in end-of-life care, and Paul Rossi is former chief executive of Help the Hospices, who went on to be deputy chief executive of Macmillan Cancer Support, before moving to the National Benevolent Institute.

Following reports from staff members which looked back on past achievements and forward to future work, we were delighted to welcome three guest speakers. Some of the country’s most influential speakers on choice at the end of life took to the podium, each one a patron of Dignity in Dying, to share different perspectives on the campaign for assisted dying. The Rev. Dr. Paul Badham was first up, offering a compelling argument that religious belief need not be seen as incompatible with the extension of rights at the end of life to include the option of assisted dying for terminally ill adults. Next was eminent heart surgeon Sir Terence English addressing the issue of working with medical professionals to bring about a change in the law. Last but not least was Falkland’s War veteran and campaigner Simon Weston, who spoke passionately about the case for change and the 'hysteria' used by some opponents to scaremonger against assisted dying. He also spoke of his experience of pain and depression and how this had convinced him of the need to strictly regulate and safeguard assisted dying for terminally ill adults. Collectively the speakers covered a broad spectrum of stakeholders who contribute to the debate on assisted dying, and painted a motivating picture of how best to influence the debate.

With all the scheduled events from the day’s itinerary done, it was our members that left the lasting impression. Throughout the day I overheard members sharing ways to increase support and membership, offering each other encouragement to approach those close to them and invite them to join the campaign. Without this level of genuine enthusiasm the campaign for change might never see the end that the majority of the public wish.

More striking than anything at my first Dignity in Dying AGM was the demand to be evidence-based and common sensical in our approach to changing the law. Statistics were scribbled down by members for use in debates and lobbying MPs and stacks of our new assisted dying evidence publication, A Matter of Facts, were taken away for use in persuading others. Interestingly, A Matter of Facts was actually an idea proposed by a member at last year's AGM and we're already looking forward to taking forward new ideas brought to this year's meeting.

Time for Britain to take a brave decision…

noreply@blogger.com (James Harris) — Tue, 17 May 2011 17:27:00 +0000

On Sunday the people of Zurich voted overwhelmingly (78%) to reject a proposal which would have outlawed assisted suicide for foreigners in their Canton (state). Britons travelling to Switzerland have long been the subject of public debate and, thanks to this referendum result, this look set to continue. But what should we make of this vote, and its results?

Firstly, the very fact that the referendum was being held highlights the striking differences between the laws in the jurisdictions that have legalised medical assistance to die: whilst the US States of Oregon and Washington have legalised assisted dying for terminally ill, mentally competent adults only, the Benelux countries have legalised euthanasia for people with incurable conditions. But all of these jurisdictions only offer medical assistance to die to their own residents, whereas Switzerland allows foreigners to be assisted to die. So, while in Oregon, for example, you have to provide proof of residency (such as a being registered to vote) to access an assisted death, in Switzerland foreigners can and do travel to the country with the sole purpose of dying there. And as is well documented, to date over 150 Britons have done just that.

In part, the Swiss anomaly is due to the way their assisted dying law came into being. Unlike other jurisdictions, Switzerland has never passed statutory legislation to legalise and regulate medical assistance to die. Instead, the situation there evolved from historic laws, which has resulted in the decriminalisation of compassionate assistance to die, so long as it is not motivated by self-interest. Arguably, it is this legal evolution and lack of statutory legislation which has resulted in there being few up-front safeguards to regulate access to assisted suicide – which is not limited to those with terminal illnesses but can, for instance, be obtained because a person is “tired of life”.

This lack of safeguards causes disquiet for some, including Dignity in Dying. Whilst we know access to an assisted death in Switzerland is enormously important for a number of Britons, the change in the law we would like to see here in the UK is more restrictive. The assisted dying law we would introduce would have numerous up-front safeguards and be limited to terminally-ill, mentally competent adults. We therefore welcome talk of the Swiss Federal Government seeking to restrict assisted suicide to assisted dying for the terminally ill, perhaps as early as next year.

However, our opinions are largely irrelevant. Swiss law is a matter for the Swiss. What we can control is our own law, if we choose to do so.

With or without new regulations, Britons will continue to travel to Switzerland to die. It is unlikely that a loved one who helps them to do so out of compassion will be prosecuted for assisted suicide.

As such, the UK accepts the need for compassionate assistance to die, but rely on Switzerland to provide the means to do so. In hiding behind this legal and ethical fudge, refusing to tackle the issue head-on, decision-makers have inadvertently permitted a much more lax system than exists in jurisdictions such as Oregon where assisted dying is legal but restricted to terminally ill, mentally competent adults and surrounded by up-front legal safeguards.

Last weekend Zurich voters took a brave decision. So should we. We should allow Britons to die at home surrounded by their loved ones, protected by safeguards enacted by their own parliament.

Breaking a taboo...

noreply@blogger.com (James Harris) — Fri, 13 May 2011 17:02:00 +0000

Last night, on Inside the Human Body, the BBC broadcast the death of Gerald, an 84 year old man with liver and lung cancer. He died peacefully in a hospice surrounded by his loved ones.

The decision to broadcast someone’s death must never be taken lightly. Any programme choosing to do so should deal with the issue sensitively; should aim to inform rather than entertain; be shown with the full approval of those involved; and viewers must be made aware of the programme’s contents in advance of its screening. Last night’s programme in our opinion fulfilled those criteria, and as such it should be welcomed.

Discussing death and dying can be many things, including uncomfortable and difficult. But such discussions, if dealt with sensitively, should not be swept under the carpet, or censored. It is by discussing our fears and wishes at the end of life that that people can help achieve what they consider to be a ‘good death’, by ensuring (as far as it is possible) that their choices are respected. Such discussions also underline the importance of universal access to good-quality end-of-life-care.

But we Brits aren’t too good at talking about death. This was highlighted by the 2008 End of Life Care Strategy. The Strategy identified death as “the last great taboo in our society” and outlined the adverse consequences of this, including people failing to discuss their wishes. As a result of the Strategy, the Dying Matters Coalition was established which aims to “support changing knowledge, attitudes and behaviours towards death, dying and bereavement.”

It seems to be in a similar vein that organizations such as Help the Hospices, and the National Council for Palliative Care, welcomed the BBC’s decision to broadcast Gerald’s death. Help the Hospices said:

"We welcome the BBC’s decision to broadcast a death, which was with the consent of the gentleman involved and his family… a good death cannot be achieved when people continue to shy away from talking about death and dying.”

But their support was by no means universal. For instance, Dr Peter Saunders, Campaign Director of Care not Killing and CEO of the Christian Medical Fellowship, told the Daily Mirror:

“some aspects of life are so personal that even if individuals give their consent to be broadcast, we are wiser to keep them private without crossing this rubicon.”

Perhaps reactions such as this show how much more work there is to be done, even amongst those people who deal with end-of-life issues (Care not Killing “seeks to promote more and better care”). But ultimately, if their resistance leads to a public debate of this important subject, that can only be a good thing. As a result, one day, hopefully soon, death and dying will no longer be taboo.

Disabled people are concerned about legalising assisted suicide, so are Dignity in Dying...

noreply@blogger.com (James Harris) — Mon, 09 May 2011 10:35:00 +0000

A poll commissioned by Scope, a national charity that supports disabled people and their families, shows that a majority of disabled people have concerns about a change in the law on assisted suicide. Today’s Daily Telegraph states:

Celebrities including the author Sir Terry Pratchett and the actor Sir Patrick Stewart have backed a campaign to allow terminally ill patients to receive help to die.

But a new poll found 70 per cent of disabled people were concerned that such a reform would create pressure on vulnerable patients to “end their lives prematurely”.

The poll didn’t ask whether disabled people have concerns about a change in the law on assisted dying for terminally ill, mentally competent adults. Instead it asked them:

Helping another person to commit suicide is currently against the law. How concerned or otherwise would you be about a change in the law to legalise assisted suicide?

As an advocate of greater choice at the end of life, I would have answered “very” to that question.

As has been repeatedly set out by Dignity in Dying:

Dignity in Dying wants to help create a society that does not allow people to suffer at the end-of-life against their wishes, not one which assists people to die on the basis of their age and/or disability.

As a result Dignity in Dying clearly distinguishes between assisted suicide, where people who are not terminally ill can be helped to end their lives (which we don’t believe should be legalised) and assisted dying, where assistance is available to terminally ill, mentally competent adults only (which we think should be legalised with up-front safeguards). This distinction is supported by a majority of people, whether they are disabled or not – the 2007 British Social Attitudes Survey found that 75% of people with a disability believed that a person with a terminal and painful illness from which they will die should be allowed an assisted death.

And of course, all supporters of assisted dying want the law to be as safe as possible. We too are concerned by the idea that vulnerable, terminally-ill people could be pressurized into an assisted death if the law does not adequately protect them. This is why we continue to examine the safeguards to be included in any future Bill, and why we await the Commission on Assisted Dying’s findings later this year. But the fact that we are concerned means we look for solutions, not that we oppose a change in the law. This is another reason the poll doesn’t necessarily distinguish between supporters and opponents of assisted dying.

We are engaged in an important debate about choice to end unnecessary suffering, on which everybody’s voice should be heard. Therefore, we welcome Scope’s significant and continued contribution – but can we make sure that we are debating the same thing?

Our current (fundamentally flawed) law offers neither choice nor adequate safeguards against abuse...

noreply@blogger.com (James Harris) — Thu, 05 May 2011 08:56:00 +0000

Dignity in Dying believes people should not have to suffer against their wishes at the end of life. We support improved access to good quality end-of-life care and, for those whose suffering cannot be alleviated by such care, the choice of an assisted death within up-front safeguards. Up-front safeguards are not an afterthought aimed at disguising an unfettered belief in the right to die, but rather they are an integral component of a new law to ensure that potentially vulnerable people are better protected than they are at present.

We do not share the belief held by a small but vocal minority that some people have to suffer at the end of life in order to protect others from potential abuse. We are confident that people can have both greater choice and greater protection by enabling informed decision-making with healthcare professionals. At present if a terminally ill adult wishes to die there is a limit to the advice they can receive from healthcare professionals. They are left to travel abroad to die or to use the internet as a counselling service. The only protection against coercion or an ill-informed decision is a retrospective investigation after someone as died, at a point when nothing can be done to protect them or make them aware of all of their options.

Surely, it is better for Parliament to set out who can be assisted to die and in what circumstances. This would enable people to fully discuss their wishes at the end of life with healthcare professionals and be made aware of all of their options. If people, for example, are worried that a person who requests help to die may change their mind, like us they can insist on built in delays and the instance that assisted dying for terminally ill people is legalised, rather than euthanasia.

Importantly our support for up-front safeguards has a practical implication on our day-to-day work. Dying people are suffering right now, and are taking action to end that suffering, right now. Despite being fully conscious of this ongoing suffering, and contrary to the defamatory statements of some of our opponents, we do not, and will not, help people to die. We will provide information on people’s rights under existing laws, but we work within the law to change the law. Why? Because we ultimately believe it is for Parliament to set out who should be able to have help to die and in what circumstances. When Parliament has done this, as we are confident it will, it is then for healthcare professionals to determine whether someone meets the criteria set down in legislation (e.g. if the person is terminally ill and mentally competent) not a campaign organisation such as ourselves. The provision of information on how to end life, no matter how understandable in light of someone’s suffering, should only come from healthcare professionals guided by the law.

At the end of the day we can all agree on one thing, this debate is about patient safety. But defending the status quo neither provides choice nor adequate safeguards against abuse. We take concerns about safeguards very seriously, but they should never be used to justify an immutable objection to a change in the law.

Remembering inspiring personal stories

noreply@blogger.com (James Harris) — Wed, 27 Apr 2011 13:49:00 +0000

Mylinh Cao, Press Trainee, writes today's blog piece:

We receive countless letters of support for our campaign from people across the UK. Many of them are frustrated and disappointed by the current law, which forces people to suffer against their wishes at the end of their lives, or to take desperate decisions in order to be in control of their own death. Some of the people who write to us go on to become spokespeople for Dignity in Dying.

In the last few months I’ve been delighted to meet with some of Dignity in Dying’s spokespeople to thank them for their campaigning efforts in support of choice at the end of life.

Brian Pretty (pictured) is a household name and someone who instantly comes to mind when you think about the campaign to legalise assisted dying. I met with him and his second wife Carol in their home in Luton, nine years after the death of his late wife Diane who campaigned tirelessly for her ‘right to die’.

Through meeting Brian, I learned more about Diane’s personality and how she and Brian coped during the legal battle. Brian told me of how stubborn and determined she was to see her case through and to have her voice heard, despite often being too weak to travel and physically unable to speak for most of her campaign. Diane was a fighter: she was sharp and insisted that Brian express her view accurately; and, as Brian confessed, she was quick to scold him if he didn’t. When I asked Brian what Diane might think about the campaign today, he said she’d be pleased, given Debbie Purdy’s legal victory in 2009, but disappointed about how long progress takes on this issue. We all agreed that Diane left an immense legacy for our campaign, and Brian said how proud he is to still be a part of what Diane started.

Steve Barksby from Manchester is another long-standing and inspiring spokesperson I met with. He has lived with HIV for almost 25 years and has been a spokesperson for Dignity in Dying since 1995. Steve speaks about his views on assisted dying at schools, society meetings and other events, usually in debates. He’s extremely well-informed on the issue of assisted dying and I was amazed at his commitment to spreading the message on to others, in his usual discursive and inviting style. He’s a fierce campaigner and engages in a variety of welfare rights issues, such as the scrapping of the Disability Living Allowance.

And last week I met John Kapp - his story is a beautiful and inspiring one. John arranged the last 10 days of his late wife’s life to give her a dignified comfortable death at home with her family present: he considered it his last act of love for her. Janet was terminally ill with cancer. When John asked her what she wanted for her death, Janet simply said that she wanted to die at home with John and their three daughters present. John spoke of how difficult it was to get information on how to support someone in the dying process: in the end he went to ask an undertaker, who advised him to unplug the telephone, put on her favourite music, and hold her hand until she stopped breathing. John said he is most thankful to that undertaker, for she not only gave him information but also the confidence and permission to accept his wife’s death, and to move on to value their last days together.

People often ask me whether it is difficult working on the issue of assisted dying; whether I ever get sad hearing people’s experiences of death and dying every day. In truth, I rarely do. What I do get is the chance to meet inspiring individuals and to hear about their views on a personal and sensitive issue. Our spokespeople are invaluable and admirable individuals: by sharing their stories, they actively campaign to change the law to allow others the choice in death that they, or their loved ones, never had.

If you are interested in sharing your story with Dignity in Dying, please email Jo at jo.cartwright@dignityindying.org.uk

Time for change...

noreply@blogger.com (James Harris) — Wed, 20 Apr 2011 11:55:00 +0000

Emily Halsall, Senior Campaigns Officer, writes today's blog post...

There’s been a real buzz around the Dignity in Dying office over the last few days. The news over the weekend that Sir Terry Pratchett will present a BBC documentary on assisted dying in the summer, Sir Patrick Stewart has joined Dignity in Dying as a Patron, and Chris Broad will today give evidence to the Commission on Assisted Dying, was all positive enough. But more significant is the energy we’ve seen from our supporters on Facebook, Twitter, on the telephone and in the post.

Hundreds of supporters, new and old, asking what they can do to help and how long it will be until we succeed in introducing assisted dying legislation. How long it will take is a tricky one - we all want to bring about change as quickly as possible but we want to ensure that unlike in 2005, when we last supported a Bill in Parliament, this time we are successful. We now await the results of the Commission on Assisted Dying (due to publish its final report in December this year) which will advise if the law can be changed safely (so as to better protect potential vulnerable people from abuse), and if so how. In the meantime we all need to keep the momentum going by telling friends and family about Dignity in Dying and asking them to join us.

Those with a little more time should write to their MP, explain your support for Dignity in Dying and ask for their view. And please remember to forward any replies to us so we can keep track of opinion in Westminster. It’s time for the 80% of the general public who support a change in the law to demand that our lawmakers do something.

So thank you all for being part of this. We are confident that the law will change. But with your help we will bring about much needed change sooner rather than later. People who are suffering in the last days or weeks of life, should not be denied the choice of an assisted death because of a vocal minority. We respect their right not to choose an assisted death, but they should not stand in the way of that choice for others.

Points of view...

noreply@blogger.com (James Harris) — Tue, 19 Apr 2011 14:13:00 +0000

There has been a flurry of media activity following news that the BBC will broadcast a documentary this summer in which Sir Terry Pratchett reviews ‘right to die’ laws in Europe. Contrary to some opponents who believe that the 'mainstream media' is universally supportive of a change in the law, some of the commentary has been very negative.

Dignity in Dying welcomes a debate on assisted dying, and encourage all to take part regardless of their views – even when we disagree with them strongly:

Cristina Odone, Telegraph Blogs (Friday 15 April)

“I would like to drag Sir Terry to a place closer to home. To the rambling farm of an elderly couple in Somerset, where the wife suffers from Alzheimer’s, but lives still at home, cherished and cared for by her husband. To those who argue that she is no longer herself, he fiercely replies “she is still my wife”. I’d like to take Sir Terry (and his camera crew, too) to a hospice in Wales which I visited, run by the Marie Curie nurses, where elderly cancer patients live out their last days with dignity and with as little pain as possible, visited by family and friends.”

• Dignity in Dying strongly supports palliative care and agrees that in most cases, it can control people’s symptoms and suffering. However, it is almost universally recognised that not all terminally ill patients’ suffering can be relieved by palliative care.

• The National Council for Palliative Care(1), British Medical Association(2) and Macmillan Cancer Support(3) have all acknowledged that palliative care does not dissuade some people from wanting to choose an assisted death – it is not a blanket panacea.

“But Sir Terry is not just wrong about life. He is wrong about death. Like so many assisted suicide lobbyists he peddles a scary myth: dying is always painful and humiliating. The truth is, it doesn’t have to be either. Hospices, telecare ... and loving families can support those in their final days..”

• For many people the fear of dying is worse than the death they will experience – not because anyone is ‘peddling a scary myth’ but because it is an unknown ‘event’, all too often out of our control. Legalising assisted dying is as important for these people as it is for the people who actually make use of the law. To know that the choice of assisted dying is available provides ‘emotional insurance’ to all dying people who are fearful that their suffering may become unbearable for them. A third of people in Oregon who receive life ending medication under the Death with Dignity Act never go on to use it, but it gives them comfort knowing it is available should they need it.

Barbara Ellen, The Observer (Sunday 17 April)

“’They wouldn't have wanted to end up like this.’ Of course not – who would? – but that might not be the end of the story. How individuals feel when they are fit may change considerably when their health fails. Like those with locked-in syndrome, they may adjust to a life that is very different, often difficult, but just as precious. Who are we to judge?”

• Dignity in Dying campaigns for assisted dying only for terminally ill adults with mental capacity. We do not campaign for assisted suicide. Assisted suicide refers to providing assistance to die to someone who is not dying, whereas assisted dying refers to helping an individual with a terminal illness control the time and manner of their death.

• Assisted dying would allow dying adults, suffering at the end of their life the option to substitute what might be a bad death with a good death. If someone is not dying but wants assistance to die because they are disabled, chronically ill or simply tired of life, it is possible that measures could be taken to improve their quality of life. In effect they would be substituting a life with a death.

• Two British Social Attitudes surveys (published in 2007 and 2010) demonstrate that the general public support assisted dying but are less supportive of assisted suicide. At least 80% of the general public are supportive of assisted dying when the person is terminally ill, but this drops to 45% when the person has an incurable illness from which they will not die (4) (5).

“Who could guarantee that mistakes wouldn't be made with euthanasia? Not all seriously ill people can communicate their current wishes (not necessarily the same as when they first became ill). And no one else should be deciding for them, in worst-case scenarios "putting them down" against their will.”

• Dignity in Dying campaigns for assisted dying only for terminally ill adults with mental capacity. Adults would have to be able to make the voluntary decision and could not make it in advance of losing mental capacity.

• Assisted dying is about enabling informed decision making. The current law examines cases of assisted death retrospectively. Dignity in Dying believes patient safety would be better protected if there was a full consideration of someone’s request to die when they are still alive and alternative options can be explored with healthcare professionals.

Melanie Phillips, Daily Mail (Monday 18 April)

“It opens up the route to intolerable abuse of deeply vulnerable people, who may be put under pressure by greedy or uncaring relatives to end their lives. Or the person in question may simply not wish to ‘be a burden’ on their loved ones.”

• In Oregon assisted dying for terminally ill adults with mental capacity is permitted, with all patients voluntarily requesting assistance to die within a safeguarded system. Research evidence demonstrates that groups of potentially vulnerable patients in Oregon(including older adults (aged 85+), disabled people and those suffering from psychiatric illness) are not adversely affected, and are in fact under-represented in the numbers of people who choose an assisted death (6).

• Loss of autonomy, being less able to engage in enjoyable activities and loss of dignity are the main reason for patient’s choosing an assisted death. Inadequate pain control and burden have always ranked as less frequent reasons and both have fallen significantly over the years (7).

“It sends society down a slippery slope, where assisted suicide starts off for those suffering unbearable pain or distress through illness and rapidly extends to people wanting to die even though they are not ill at all.”

• Assisted dying for terminally ill adults is permitted in Oregon (1997), voluntary euthanasia and assisted dying for patients who have an incurable condition is legal in the Netherlands (2002) and voluntary euthanasia for terminally ill people and those who are in a medically-futile state and suffering unbearably is permitted in Belgium (2002). In none of these jurisdictions has legislation widened since it was passed.

“Even more horrifying, those whose minds are affected by illness will be making a choice to be killed which may not be rational at all. Indeed, their wish to die may be the result of feelings which may change — if given the chance.”

• Assisted dying is for terminally ill adults with mental capacity only. Any model for assistance in the UK which we advocate would include a safeguard that patients could change their mind at any time. In Oregon, patients take the life ending medication themselves so that they are in control. In approximately 40% of cases the patient receives the prescription but does not take the medication, rather they have it as ‘emotional insurance’ (8).

In conclusion:

There will be individuals who will never want this choice for themselves, but there are also individuals, members of Dignity in Dying, who are dying and desperately want this choice now. They’re not asking Ms Odone, Ms Ellen or Ms Phillips to choose an assisted death when their time comes, and we ask those campaigning against choice to permit these dying adults the same freedom, and allow them choice and control over their death. The irony of Barbara Ellen’s article is that she states that people shouldn’t be able to “dictate the fates of the ill and weak”. I couldn’t agree more, but doesn’t that apply equally to those who oppose terminally ill, mentally competent adults having the choice of an assisted death?

1 http://www.hospicecare.com/Ethics/statements.htm
2 BMA (2004) Medical Ethics Today: The BMA handbook of ethics and law (2nd ed.) Chapter 11, pg 403 BMA publishing group
3 Macmillan Cancer Relief, End of life issues position statement, Approved 23rd July 2003
4 McAndrew S (2010) Religious faith and contemporary attitudes, in Park A, Curtice J, Thomson K, Phillips A, Clery E, Butt S (eds) British Social Attitudes: 2009-2010. The 26th Report London, Sage: 87-113
5 Clery E, McLean S, Phillips M (2007) Quickening death: the euthanasia debate, in Parks A, Curtice J, Thomson K, Phillips M and Johnson M (eds.) British Social Attitudes: the 23rd report – perspectives on a changing society London, Sage: 35-54
6 Battin MP, van der Heide A, Ganzini L, van der Wal G and Onwuteaka-Philipsen BD (2007) Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in ‘vulnerable’ groups Journal of Medical Ethics 33: 591-97
7 Summary of Oregon’s Death with Dignity Act (1998-2010)
8 Ganzini L, Beer Tm Brouns M et al (2006) Interest in physician-assisted suicide among Oregon cancer patients Journal of Clinical Ethics 17: 27-38

Bias is in the eye the beholder...

noreply@blogger.com (James Harris) — Fri, 15 Apr 2011 10:38:00 +0000

This summer the BBC will broadcast a documentary on assisted dying by Sir Terry Pratchett, a patron of Dignity in Dying. This programme will probe assisted dying laws in Europe, and will feature the last moments of a terminally ill Briton who dies at Dignitas in Switzerland. Cue predictable outrage, even before they see the programme, from opponents of a change in the law courtesy of today’s Daily Mail. Notably Dr Peter Saunders, Campaign Director of Care not Killing and CEO of the Christian Medical Fellowship, accuses the BBC of “acting like a cheerleader for legalising assisted suicide”.

Dr Saunders, and other opponents, obviously have no problems with the Daily Mail article itself which features three quotes from opponents of assisted dying but none from supporters of a change in the law. I also presume they have no problem with the BBC broadcasting on Radio 4 this morning one person’s unchallenged views against assisted dying?

Dignity in Dying do not jump up and down with ‘outrage’ when counter views to ours are expressed in the media - we welcome a debate where all sides are heard. The fact is opponents do not want us to talk about assisted dying because regardless of what they say they always lose the argument - as evidenced by a clear majority of comments by Daily Mail readers themselves on the article.