Dignity in dying?

For several reasons, the issue of assisted dying has cropped up in my working life this week. And it's a subject that I am still chewing over, and finding remarkably difficult to digest.

I work for a Labour MP, who has received a number of requests to sign an Early Day Motion which calls for a debate on the law on assisted dying and assisted.

I think for both my boss, and me on a personal level outside of work, it's hard to make a snap judgement about what changes do need to be made to the law, if any. The Coroners and Justice Bill is currently going through Parliament, and with it comes the opportunity to MPs to: "Modernise the law on assisting suicide to help increase public understanding and reassure people that it applies as much on the internet as it does off-line."

The issue has been in the news this week because of British couple's decision to go to Switzerland to die. Peter and Penelope Duff, who both had terminal cancer, travelled to a Dignitas clinic Switzerland last week to die together.

Mr Duff, 80, a retired wine consultant, and his 70-year-old wife are believed to have been helped to end their lives last Friday with an overdose of barbiturates. They are the first Britons to die at the clinic since the Lord Chief Justice signalled that anyone helping a terminally ill person to organise an assisted suicide abroad would not be prosecuted.

Sarah Wootton, Chief Executive of the UK charity Dignity in Dying said this week:

"This is an extremely sad case of two more terminally ill UK citizens being forced to travel to an unfamiliar country to die. It demonstrates, yet again, that we are currently on a slippery slope which forces people to make difficult and often desperate decisions so that they can take control of the time and manner of their deaths.

"Dignity in Dying campaigns for terminally ill, mentally competent adults to have the choice of an assisted death, subject to strict legal safeguards. Mr and Mrs Duff were both terminally ill and therefore may have been eligible for an assisted death under this sort of legislation. Had they had the option of an assisted death in this country they may still be alive, as their physical ability to travel would not have been a factor.

"It is time for Parliament to fully debate this issue, and there is that opportunity now. The Coroners and Justice Bill is being debated in Parliament at the moment, and within this Bill is the opportunity to modernise the 1961 Suicide Act. Parliament currently has no plans to change the scope of the Suicide Act to allow assisted dying, but surely this case highlights the importance of addressing this issue with urgency to prevent any more people from having to take the decision to travel abroad to die."

Dignity in Dying say that 80% of the British public (ie voters) support a change in the law on assisted dying for terminally ill, mentally competent adults.

There are some complicated issues to consider with this. For example, in terms of modern medicine and healthcare systems, how do we define who is 'terminally ill' and who is not? People can, fortunately, live many years with illnesses such as cancer, AIDS, and various degenerative diseases. We have the technology to give them a far better quality of life than they would have had a decade or so ago.

There is also the issue of identifying the 'mental competence' deemed to be necessary to make the decision to be assisted in ending your life. By the time a person with a terminal illness has degenerated to a level where they would consider ending their life, in many cases their mental competence has degenerated along with their physical health, and again it is questionable of whether they can be left to make such a decision.

This issue poses a challenge for the current Government and future ones, as it is nigh on impossible to consider the issue without brining your own personal feelings and experiences along with you. But if the Government can't make decisions on this who can? It is too risky and area not to be regulated by legislation - it poses too much of a risk to the people and families involved to just leave it up to personal choice in each case. And I think it is too much to ask the family members to have to be put in the position of making such decisions. And so, the debate will rumble on...I hope that whatever changes are made to the law, they still convey what is really meant by having dignity at the end of your life.

Work and mental health

As the recession deepens in Britain, a huge rise in the number of people with mental health conditions has been predicted. Stigma and lack of support in the workplace means people are losing jobs or being refused work at the time when they need them most, and recent Government welfare reforms could complicate things further for those in mental distress. Gemma Pritchard reports.

“The mentally ill are an easy target. Despite the fact 1 in 4 people have a mental health condition, only sufferers and their families understand what it’s like, because you can’t see their symptoms or their distress.”

“The Great British public get whipped up into a frenzy about the idea of people unfairly claiming money from the state, which means people with mental health problems become a target – we are classed as workshy and useless. Our illnesses may not be visible at all or take socially unpleasant forms, so we end up being doubly ostracised. There is a huge amount of hostility.

“The paradox is that people with mental health conditions do want to work, but often people won’t employ them, which says a great deal about the insecurity of employers,” says Chris Danes, 47, from Essex.

Chris has Bipolar Disorder (Manic Depression). His condition has meant that 11 years ago he was forced to leave a successful career in teaching as a Deputy Head of a public school, after a serious episode of the illness. Chris is one of millions of people in the UK who have found that a mental health condition has become a massive barrier to their employability and career. Chris has been able to continue to earn a living by writing books from home and doing some media work about his experiences. But Government research shows others are less fortunate, and many people in the UK with psychological problems fall into a benefit trap which is then very difficult for them to get out of.

At the end of last year, the Government announced a package of welfare reforms intended to get people on benefits back in to work. This includes the introduction of the Work Capability Assessment which will push people on benefits onto Jobseeker’s Allowance, placing emphasis on the responsibility of the individual to find work. But a growing body of evidence suggests that employers are not willing to take on people who have experience of a mental health condition, and they are failing to provide staff with adequate mental health support.

As the recession deepens, this problem can only get worse, with unemployment currently around the 2 million mark, and increased anxiety amongst employees about their future. The Conservative party predicted in November that we will see a massive 26 per cent increase in the number of people experiencing mental health problems by 2010 as a direct result of the economic crisis in Britain. And for people already struggling with mental distress, debt will only make their problems worse.

A poll by mental health charity Mind found that 58% of people had to leave a job because of lack mental health support, 31% had been sacked or forced out of a job after disclosing a mental health problem and 26% had been demoted after disclosing a mental health problem. Even more worryingly, 1 in 4 had job offers withdrawn after disclosing a mental health problem, which is illegal under the Disability Discrimination Act. Yet they found themselves powerless to do anything about it.

Over 200,000 people with mental illnesses move from work onto benefits each year. Although one review has found 9 out of 10 people with mental distress still want to work, Government research has shown that less than 4 in 10 employers would be willing to take them on.

Chris has experienced first-hand the gung-ho attitude of employers who are unwilling to accept a mental health condition as a legitimate reason for sick leave.

“When I was ill and off work for six months,” he says, “no-one from the school visited or came for a meeting with me. My ex-wife, herself a doctor, was bombarded with phone calls from my fellow deputy saying ‘he’s just got to get back’. As in many boys’ schools of its time, it was ‘sink or swim’ for the boys and the staff. Thus medical evidence and doctors’ opinions were overridden. I was made to feel that it was a moral failure.”

The major mental health charities in the UK, which include MIND, Rethink and the Sainsbury Centre, have battled workplace discrimination for many years. Julia Lamb, spokesperson for MIND says: “There remains a long-term stigma and discrimination around people with mental health issues.

“In the workplace, this can translate as anything from problems applying for jobs in the first place, being turned away from jobs, and even cases where people who have been made a job offer disclose a diagnosis and then have the offer withdrawn. There are off course long-term problems too, such as if they get the right support when they are in a job. It can be a massive barrier.

“Of course, there are people who are lucky enough to have employers who are willing to make adjustments to help them and take their needs in to account, for example if someone is taking medication which makes them slow in the morning, an employer could say they can start work a bit later.

“Generally though, there is a lack of awareness in the workplace about mental distress and people don’t get the support they need. This can put a lot of stress on people, and they may have to take time off sick from work. The problem is the longer they are away from work, the harder it is for them to return and get back into it, because they lose their confidence. There are also incidents where people have been off sick for so long that they get sacked.”

MIND are supportive of the Government’s ‘fit note’ scheme, but remain cautious of how it should be implemented. The idea is that instead of ‘sick notes’ people will be assessed for ‘fit notes’, where their doctor will liase with their employer to tell them what they are capable of doing at work. This should raise retentions rates, with people working at a reduced capacity until they are well enough. The idea has caused a lot of noise and even outrage, but MIND say they are for anything that supports people who want to remain in employment.

“It is more complex than that though,” says Julia. “In some cases, it might have been their job which caused the problem in the first place. There are also concerns over whether GPs will have the ability to say what people are capable of- mental health problems aren’t as tangible as physical health conditions – someone may be physically capable of working a 40 hour week, but psychologically can’t cope with the stress. GPs aren’t psychologists or occupational health experts, and for this to work they will need a lot of training and a great deal of sensitivity when making their assessments.”

Dr Jed Boardman, from the Royal College of Psychiatrists adds: “The Welfare Reform Bill is seemingly designed to combat the workshy, currently in the unreformed benefits system.

But it encompasses a large number of people with a range of mental health problems, many of whom want to work and with the right kind of support could be helped in to work.

“It is crucial that the systems to support people in to work are fair, adequately resourced, and based on evidence of what works for people with mental health problems. As psychiatrists, a key role of ours is to help in the recovery of people with mental health problems and help break down the barriers to social discrimination.”

The Government at present remain optimistic about the benefits of the new welfare reforms and argue that we are in a good position to provide people with the support they need, both in and out of the workplace. Public Health Minister, Phil Hope MP, says: “We are building stronger links between the NHS and employment services, to give people integrated support if their depression is linked to unemployment.

“Our programme for expanding psychological therapies has set up 35 new services in 35 PCTs this year and training more than 1,100 people to deliver cognitive behavioural therapy. More services will come on stream over the next two years.

“We are also piloting Employment Advisors in 12 of the 35 new talking therapy services. This will test whether integrated services like this can help prevent people losing their jobs and help people return to work as soon as possible.”

Despite this, there is no question amongst mental health professionals that these new reforms will provide significant challenges for them and their medical colleagues.

Professor Sally Hardy, Head of Mental Health & Learning Disabilities at City University says: “Mental health care professionals, working from a recovery approach, aim to support and enable survivors to regain their sense of self worth and their place in the world, but at a level that feels right for each individual. Using such a person-centred approach can work well alongside the ‘Fit Note’ scheme, as long as it is focusing on what people can achieve rather than on what they cannot offer.

“However, training GP’s to work with people to identify their strengths is a new technique for the consulting rooms that will take more time than many GP’s are able to offer. Many people experience their GP as hardly someone they can collaborate with and share knowledge, but rather as a one-sided diagnostic procedure. The new fitness scheme will certainly take some getting used to, but if implemented with adequate resources could prove beneficial to mental health care sufferers and survivors seeking employment opportunities, as they offer some valuable insights into what it means to be vulnerable and human in a tough world.”

Grief brings the political world to a halt

I want to join the rest of the country in expressing my condolences and heartfelt sympathy for Conservative leader David Cameron and his wife Samantha, whose six-year-old son Ivan died yesterday. Ivan had a severe, progressive neurological condition, and his
parents knew from the day he was born that he could die in childhood. But, I imagine, this doesn't make it any easier to deal with.

I was completely shocked when I woke to the news yesterday. I was very moved by Brown's decision to cancel Prime Minister's Questions; and by the tributes in the Commons. It was a strong reminder that whatever our political beliefs, and however fiercely one side may oppose the other, we are united in our humanity, and grief. Brown too, after all, knows what it is like to lose a child.

“I know that in an all too brief life, he brought joy to all those around him and I know also that for all the days of his life, he was surrounded by his family’s love,” said Brown.

"Politics can sometimes divide us. But there's a common human bond that unites us in sympathy and compassion at times of trial, and in support for each other at times of grief.

William Hague, speaking in place of his leader said: “His parents lived with the knowledge for a long time that he could die young, but this has made their loss no less heartbreaking."

There is an article here here in the Times by writer Andrew Brereton whose son also dies from cerebral palsy.

Interestingly, the political comment that has come out of this tragic event is of how much Ivan has shaped Cameron and his Conservative party - namely his strong appreciation of the NHS given how much his family had come to rely on it.

In his first speech as party leader he said: “I believe that the creation of the NHS is one of the greatest achievements of the 20th century. When your family relies on the NHS all the time – day after day, night after night – you really know just how precious it is.”