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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Unlikely sisters in the Gaza Strip

A former Jewish settler in Gaza recalls her childhood friendship with a young Palestinian.

It was well after midnight, one summer night in 1995, when Inbar Rozy, a 13-year-old living in the former Israeli settlement of Alei Sinai in the northern Gaza Strip, heard her parents answer the phone. Sitting up in bed, surrounded by potted plants, candles and fairy dolls lit by shafts of light from a nearby security outpost, Inbar listened closely.

“I could hear everyone talking around me, making calls,” Inbar said when we met recently in Nitzan, southern Israel. When she got up to find out what was happening, her parents told her to make up a second mattress. As dawn broke, they led into the room a young woman carrying a small bag and wearing a black shirt and jeans. “She had shoulder-length dark hair dyed with red henna and beautiful eyes – big, black with thick eyelashes,” Inbar told me, smiling. “[She was] quiet. She looked scared.”

The woman was Rina (her surname cannot be given for security reasons), a talented artist in her early twenties studying at a local art college, where she had fallen in love with a Christian boy. For Rina, coming from a traditional family, marrying a non-Muslim would be strictly forbidden.

When her parents found out, they were furious and forbade her from seeing her boyfriend. But her male cousins felt this wasn’t enough. Earlier on the day the girls first met, Rina’s cousins had attempted to kill her in retribution for her perceived “honour crime”. Seeing that another attempt on her life was likely, Rina’s father called a relative, who in turn called Inbar’s father, Yossef, a friend of many years. There was no doubt she had to leave. Ironically, a Jewish settlement protected by the Israel Defence Forces was the safest place in Gaza for her to be.

In 1967, Israel seized the Gaza Strip from Egypt during the Six Day War. In time, it settled 21 communities on a third of the land, with a population of 8,000 by 2005. Soldiers guarded the settlements from 1.5 million displaced Palestinians, tens of thousands of whom were displaced in 1967 and moved to live in nearby refugee camps. In Gaza, before Israel’s ultimate withdrawal from the Strip in 2005, relationships between Israeli settlers and Palestinians were fraught. True, many Palestinians worked in Israeli settlements, earning wages higher than elsewhere in the Strip, but the two communities lived largely separate lives.

In the mid-1990s, even after the Oslo Accords, violence was simmering. Israeli military incursions increased with the outbreak of the Second Intifada in 2000. Thousands of home-made Qassam rockets were launched by Palestinian militants at settlers and those living in southern Israel. Security measures hardened. The veteran Israeli journalist Amira Hass, who spent several years living in Gaza, describes neighbourhoods that were “turned into jails behind barbed-wire fences, closed gates, IDF surveillance, tanks and entry-permit red tape”.

And yet, in spite of the forced segregation, Inbar’s family enjoyed close links with their Palestinian neighbours. Inbar’s father worked as an ambulance driver, and on several occasions he helped transport those who lived nearby for emergency medical treatment in Israel. “Every Tuesday, my father’s Jewish and Arab friends would come to our house and we’d eat lunch together,” Inbar remembered.

Given the gravity of Rina’s situation, she couldn’t leave the house. Secrecy was paramount. The girls spent weeks together indoors, Inbar said, chatting, watching TV and drawing. “I’m not sure that as a child I actually understood it for real,” she said. “She taught me how to paint and sketch a face from sight.”

Almost as soon as Rina arrived, Inbar’s family began receiving anonymous phone calls asking about her. “My dad told me, ‘Don’t mention anything about Rina. Say you don’t know what they’re talking about – because otherwise they’ll come and kill us,’” Inbar said.

While the girls got to know each other, Inbar’s mother, Brigitte, found a women’s shelter in East Jerusalem for Rina. Whereas today Gaza is closed off by a military border under heavy surveillance, at that time it was porous. Brigitte drove Rina in to the capital, where she was given a new name and identity that would enable her to begin a new life, on condition that she contact no one in Gaza.

Today Inbar, who is 33, works at the Gush Katif centre in Nitzan – a museum dedicated to the memory of the Israeli settlements in Gaza. Despite her parents’ objections, the family was evacuated in 2005. Unlike most settlers in Gaza, some residents of Alei Sinai were determined to stay on, even if that meant forfeiting their Israeli citizenship. “I have no problem with living as a minority in a Palestinian state,” one of Alei Sinai’s inhabitants, Avi Farhan, told the Israeli daily Haaretz at the time.

Inbar now lives in Ashkelon, a city of 140,000 in southern Israel, and finds the big city alienating, especially when she recalls the warm relationships that once existed in Gaza. “I’ve never felt less secure,” she told me.

Years later, she learned that Rina had developed cancer and died. “The day before Rina left . . . she drew a portrait of me,” she said, describing how her friend had outlined, in charcoal strokes, the features of the teenager. Her parents packed the portrait with all their belongings in a shipping container the day they left Gaza. Soon after, the container was destroyed in a fire.

“I think if people had given it a chance . . . they would have had these kinds of friendships,” Inbar said, looking back. “We’d get along fairly well if we didn’t look at others as the monsters over the wall.” 

This article first appeared in the 27 August 2015 issue of the New Statesman, Isis and the new barbarism