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.)
FERENC ISZA/AFP/Getty
Show Hide image

This is a refugee crisis, and it has always been a refugee crisis

If your country is in flames and your life is at risk, boarding a rickety, dangerous boat is a rational decision. We need to provide safer choices and better routes.

Even those of us all too familiar with the human cost of the present refugee crisis were stopped in our tracks by the profoundly disturbing images of the dead toddler washed up on a Turkish beach. Whatever our personal view about the ethics of displaying the photographs, one thing is clear: the refugee crisis on our doorstep can no longer be denied or ignored.

For far too long the political conversation in the UK has avoided facing up to the obvious conclusion that the UK must provide protection to more refugees in this country. Ministers have responded to calls to do more by talking about the aid we are providing to help refugees in the region, by blaming other European Governments who are hosting more refugees than we are, and also accusing refugees themselves by claiming the desperate people forced into boarding unsafe boats in the Mediterranean were chancers and adventurers, out for an easier life.

These latest images have blown all that away and revealed the shaming truth. This is a refugee crisis and has always been a refugee crisis. When the Refugee Council wrote to the prime minister in 2013 to call for the UK to lead on resettling Syrian refugees displaced by a war that was already two years old, it was a refugee crisis in the making.

Many people struggle to comprehend why refugees would pay smugglers large sums of money to be piled into a rickety boat in the hope of reaching the shores in Europe. The simple answer is that for these individuals, there is no other choice. If your country is in flames and your life is at risk, boarding that boat is a rational decision. There has been much vitriol aimed at smugglers who are trading in human misery, but European governments could put them out of business if they created alternative, legal routes for refugees to reach our shores.

There are clear steps that European governments, including our own, can take to help prevent people having to risk their lives. We need to offer more resettlement places so that people can be brought directly to countries of safety. We also need to make it easier for refugees to reunite with their relatives already living in safety in the UK. Under current rules, refugees are only allowed to bring their husband or wife and dependant children under the age of 18. Those that do qualify for family reunion often face long delays living apart, with usually the women and children surviving in desperate conditions while they wait for a decision on their application. Sometimes they are refused because they cannot provide the right documentation. If you had bombs raining down on your house, would you think to pick up your marriage certificate?

The time to act is well overdue, but the tide of public opinion seems to be turning – especially since the release of the photographs. We urgently need David Cameron to show political leadership and help us live up to the proud tradition of protecting refugees that he often refers to. That tradition is meaningless if people cannot reach us, if they are dying in the attempt. It is a shame that it had to take such a tragic image to shake people into calling for action, but for many it means that the crisis is no longer out of sight and out of mind.

Maurice Wren is the chief executive of the Refugee Council