Where did the hysteria over the Liverpool Care Pathway originate?

We need to talk openly about dying.

As a staunch and outspoken supporter and defender of the Liverpool Care Pathway I have recently been contemplating a great deal why the whole furore started. We have been using the pathway for years so why now? I seem to recollect that a few years ago the approach was criticised by some eminent doctors in the national press but after a couple of articles and a little disquiet the debate simmered down and we as practising clinicians continued to use what is considered the framework for best practice when delivering end of life care. The issue certainly was not debated in every mainstream current affairs media outlet and politicised with numerous relatives stepping out into the arena to tell their own horror stories.

So what has happened in those few years? The LCP itself has not really changed. Perhaps the document has been developed a little but the fundamental principles of care remain the same. Maybe it is society’s expectations that have changed. There remains a huge taboo surrounding discussing death and dying openly despite the work of fantastic organisations such as Dying Matters and Good Life Good Death Good Grief. Because of this taboo, acceptance that all illness cannot be cured is sometimes limited and this can lead to huge friction between health professionals and devastated relatives when we reach the end of the line in terms of active treatment of a condition.

Perhaps it is because the press love to indulge in a little of what I glibly call "doctor bashing" and feel that we as doctors must have some sinister, ulterior motives underlying our work in end of life care. By sowing these seeds of doubt that we as a profession should not be trusted and preying on society’s deep seated fears about dying news stories that sell papers are created. There is also perhaps a perception more and more that everything done in the NHS is underpinned by monetary factors, bed pressures and lack of resources and that these issues motivate us as doctors rather than our patient’s best interests, is which something I find very sad as I go to work primarily to look after people.

Perhaps the pressure on the NHS in recent years has led to such a time-deprived environment in some hospitals that communication has suffered as a result and that is why families have not perhaps felt as cared for and as informed as they should have. This may have led to misunderstandings about the intentions of using an LCP approach as communicating in this area especially about the uncertainties surrounding dying is complex and takes time.

So for whatever reason the sparks of the story did ignite and the irresponsible handling by some of the media has left us as clinicians in a hugely difficult and worrying place. As a doctor I would hope that the relationship I have with my patients and their families is based on a solid foundation of trust; a trust that I am there solely to act in their best interests and to care for them. As a patient myself I trust my own GP and oncologist implicitly. But when the press and sometimes the politicians start to undermine this trust then we are left in an extremely worrying and dark situation.

How do we fix it? I do not believe the problem itself has anything to do with the actual LCP. I think the solution is really very simple and yet difficult to achieve. When someone is diagnosed with a condition that is going to limit their lifespan such as heart failure, dementia, metastatic cancer or MND for example I believe early, open and honest discussion about prognosis is a necessity. This allows the patient choice and some degree of control over what will happen in their life. Investment in Palliative Care services so that these highly skilled professionals can be involved early on in life limiting illnesses would undoubtedly help in these discussions. This would replace the current scenario which often arises and is best illustrated by using cancer care as an example. A patient is diagnosed with a metastatic cancer. The Oncologists treat them. Eventually the Oncologist’s treatments become futile and their care is then handed over to the Palliative Care team at this point, who are then only involved for relatively little time in that patient’s journey. In my model the Palliative Care practitioner would be in the clinic when the patient is first diagnosed and work in partnership all the way with that patient. I am reminded of a quote from Dame Cicely Saunders, the founder of the hospice movement, "you matter because you are you, and you matter until the last moment of your life. We will do all we can, not only to help you die peacefully, but also to live until you die."

Therefore when we reach the point where the LCP becomes appropriate we would have patients and families who are well informed and hopefully accepting of their situation enabling the partnership work to continue seamlessly into the final hours and days. Because of the openness agenda the wishes of the patient would be known and could have been planned for enabling us to achieve that Holy Grail "a good death".

So it is not fancy technologies or complicated research that is going to fix the problem. It is quite simply some good quality talking and a culture and environment that allows this to happen. One of the reasons I have been so open about my own dying both in public and in private with those I love is that I believe openness is inextricably linked to achieving "a good death" and perhaps more importantly "good grief" for those left behind.

Dr Kate Granger blogs at http://drkategranger.wordpress.com/

A porter at Lewisham hospital, London, in 1981. (Getty.)
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Why Britain’s Bangladeshis are so successful

In an age of fear about immigration, the success of the Bangladeshi population in Britain has a deeper resonance.

No day is complete without fears about immigrants failing to integrate in Britain. Romanians, Bulgarians and Syrians are among the ethnic groups now seen to be a burden on society, poorly educated and with few in good jobs, if in work at all.

A generation ago, much the same was said of the Bangladeshi community. Tower Hamlets, where the concentration of Bangladeshis is greatest, was the worst performing local authority in England until 1998. Until 2009, British Bangladeshis in England performed worse than the national average.

Today the Bangladeshi population is thriving: 62 per cent got five good GCSEs, including English and Maths, in 2015, five per cent above the average. The improvement among the poorest Bangladeshis has been particular spectacular: the results of Bangladeshis on Free School Meals (FSM) improved more than any other ethnic group on FSMs in the last decade, according to analysis of Department for Education figures.

Partly this is a story about London. If London’s schools have benefited from motivated Bangladeshi students, Bangladeshi pupils have also benefited from the attention given to the capital, and especially Tower Hamlets; 70 per cent of Bangladeshis in Britain live in the capital. But even outside the capital, Bangladeshi students “are doing very well”, and outperform Pakistani students, something that was not true in the recent past, says Simon Burgess from the University of Bristol.

The success of Bangladeshi girls, who outperformed boys by eight per cent in 2015, is particularly striking. Increased gender equality in Bangladesh – the gender pay gap fell 31 per cent from 1999-2009 – has led to Bangladeshi parents in England taking female education more seriously, says Abdul Hannan, the Bangladesh High Commissioner in the UK. He traces the development back to 1991, when Khaleda Zia became the first female prime minister in Bangladesh’s history; the country has had a female prime minister for 22 of the last 25 years.

The roots of the Bangladeshi population in Britain might be another factor in their success. The majority of Bangladeshis in the country hail from the city of Sylhet, which is central to Bangladesh’s economy and politics, and renowned for its food. “Our forefathers were the pioneers of the curry industry and we have followed in their footsteps,” says Pasha Khandaker, owner of a small chain of curry houses in Kent, who was born in Sylhet. Brick Lane alone has 57 Bangladeshi-owned curry houses; throughout England, around 90 per cent of all curry houses are owned by British Bangladeshis, according to the Bangladesh High Commission.

Other ethnic groups are less lucky. The skills and social and cultural capital of the British Pakistanis who originate from Mirpur, less integral to Pakistan than Sylhet is to Bangladesh, leave them less able to succeed in Britain, says Dr Parveen Akhtar, from the University of Bradford. The Bangladeshi population is also less constrained by kinship ties, Akhtar believes. In some British Pakistani communities, “individuals can live their lives with little or no contact with other communities”.

Younger British Bangladeshis have benefited from how their parents have become integrated into British life. “The second generation of Bangladeshi children had better financial support, better moral support and better access to education,” Hannan says.

As Bangladeshis have become more successful, so younger generations have become more aspirational. “Before you were an outlier going to university. As more people did it started to open the doors,” says Rushanara Ali, who became the first MP born in Bangladesh in 2010. She has detected an “attitude change about university for boys and girls.” Nasim Ali, a Bangladeshi councillor in Camden believes that, “the focus was on young people getting jobs when they turned 16” a generation ago, but now parents are more willing to spend extra money on tuition. 

Huge challenges remain. While the employment rate of Bangladeshis has improved – the proportion of women in work has risen by one-third in the last five years, according to research by Yaojun Li, from the University of Manchester – it still lags behind educational performance. Nine per cent of working age Bangladeshis are unemployed, almost twice the national average, Li has found. It does not help that the 12,000 Bangladeshi curry houses in Britain are closing at a rate of at least five a week. This does not reflect a lack of demand, says Khandaker, who is also President of the Bangladesh Caterers Association, but the government’s immigration restrictions, making it harder to find high-skilled chefs, and the increased ambition of young Bangladeshis today, who aspire to do more than work in the family business.

But, for all these concerns, as the soaring Bangladeshi children of today progress to adulthood, they will be well poised to gain leading jobs. David Cameron has said that he wants to see a British Asian prime minister in his lifetime. Hannan tells me that he is “positive that one day we will see someone from Bangladesh in the leadership”.

Nothing would better embody the sterling rise of the 600,000 British Bangladeshis. In an age of fear about immigration, the success of the Bangladeshi population in Britain has a deeper resonance. It shows that, with the right support, migrant communities can overcome early struggles to thrive. 

Tim Wigmore is a contributing writer to the New Statesman and the author of Second XI: Cricket In Its Outposts.