Liverpool Care Pathway - When The Lessons Are Not Learned

This comment left on anti-LCP Facebook page: 

"I disagree, and am saddened to see Fiona Bruce supporting the "it's the driver, not the vehicle that's at fault" argument. I am also somewhat surprised, with her own father being wrongly put on the LCP, that here she sits on the fence a little and dither-dathers, unsure of which stance to take. Also, she doesn't address the issue surrounding "diagnosis" of dying, even goes as far as stating those much-quoted words - "when death is inevitable and imminent" - this subtle statement is very naïve and ignorant and we have put this argument forward previously - it is a diagnosis that is not at all possible to make given we are all so very different, and indeed, many of our loved ones did not have a terminal illness, but were deemed as being close to death by people who do get to play God with our lives!"

This is The Telegraph -

Liverpool Care Pathway: finding the best way to face our final days

The implementation of the Liverpool Care Pathway must be handled with delicacy

By Fiona Bruce

8:29PM GMT 10 Jan 2013

If we believe that every life matters, then every death matters, and the manner of every death, too. I know this only too well from my mother’s passing – it took her several heart-rending weeks to die after being put on a “medical care pathway”, which I neither understood nor had the opportunity to discuss with doctors. In the years since, I have often asked myself: if those discussions had taken place, might I have helped to prevent her from suffering as she did?

I will never know the answer to that question, but what I learnt after entering Parliament and becoming involved in the all-party Dying Well Group of MPs (of which I am vice-chairman) is that there is an approach to caring for people at the end of their lives called the Liverpool Care Pathway – the LCP.

The heart of its intent is to give each person, in the last hours or days of their life in hospital, the same quality of care which we have so come to admire in hospices; indeed, our palliative care in the UK is admired as among the best in the world.

The LCP aims for what is increasingly being called a “good death” – when death is inevitable and imminent, to make a dying person as comfortable as possible; to minimise their physical suffering – for example by removing intrusive tubes; by giving time for that person and those closest to them to support each other, to say their goodbyes, to have what can be all-important last conversations, and to do all of this knowing that they are loved and are being cared for in the best way possible. Clearly, however, as recent reports show, the LCP’s laudable aims are not always being fulfilled in every case. Why should this be so?

One of the key reasons for this involves communication. Under the LCP guidelines, it should be explained to every patient (wherever possible) and their loved ones that they should all be involved in decisions taken to help make the dying person’s last few hours, or days, as comfortable as possible. But many families report experiences of poor communication.

Indeed, I understand a recent audit by the Marie Curie Palliative Care Institute and the Royal College of Physicians stated that almost half of those on the LCP – some 60,000 cases a year – are never told that they are on such a pathway.

This is borne out not only by my experience at the end of my mother’s life, but also with regard to my elderly father’s circumstances. After he was admitted to hospital for a few days, and although his illness was undiagnosed, I was informed by a nurse, somewhat peremptorily in a corridor, that he had not long to live and “we are putting him on the Liverpool Care Pathway”. No discussion followed.

I feared a replication of my mother’s distressing experience, and it was arranged the next day for my father to move to a nursing home, where he has said quite clearly: “I want to live.” More than six months later he is indeed doing so there, enjoying family visits, listening to music, following his football team on TV – losing more often than winning, but his support never wavers! – and dispensing wisdom to his grandchildren.

While implementation of the LCP should always involve senior clinicians with experience and appropriate training, and a multi-disciplinary approach that takes into account the whole of the dying person’s needs – psychological, social, medical and spiritual – my own experience and those of other families is that this is not always so. Constant expert review is also crucial, in case the patient unexpectedly rallies.

Perhaps it is just because the aims and aspirations of the LCP are so worthy that it has been rolled out so widely across the country since its development in the 1990s. However, with its increasingly widespread use, the appropriate training, education and expertise may not have followed sufficiently quickly.

The LCP is not and should never be a tick-box process – every individual deserves a personalised and sensitive approach to their care. But as Dr Bee Wee, the President of the Association of Palliative Medicine, has acknowledged recently, this has not always been the case.

I welcome the Government’s inquiry into the Liverpool Care Pathway, which the Health Minister, Norman Lamb, will announce shortly. I very much hope that it will address concerns such as those which I have expressed surrounding the implementation, communication, training and review of the use of the pathway, and where appropriate recommend improvements.

This should reassure us all that when our time comes, we will receive and be involved in planning the best available care for us, and that the memories our loved ones will have of our final times together will be as dignified, peaceful and positive as possible.

Fiona Bruce is Conservative MP for Congleton