THE DISTANT VOICES
Working to improve End of Life Care
A WORLD LEARNING TO DIE
Reflection on the International LCP Conference and their take on the success of the LCP
On the 1st of December 2011 the Palliative Care Institute hosted the International LCP Conference: "Care of the Dying: Everyone's Business". The conference centred on the explicit theme of boosting international support for the Liverpool Care Pathway (LCP), and any other official documents that shared the ethos: Death is natural so why delay the inevitable? Or to keep more closely to their words: "supporting" the dying to die.
You see, with international support comes international usage—a movement towards a global scheme of assisted dying. For some, this idea may seem horrific. The LCP is a target of constant criticism as stories continue to popup of people being left to die without their, or the families, consent. Stories like that of 75-year-old grandfather Jack Jones who was wrongly told his cancer had returned and was left to die in hospital after they withheld his food and water. But for the supporters of the LCP, the idea of global usage is a prayer answered: the prayer to finally be rid of the indignity of death.
The conference opened with Professor Susan Block speaking out against death fearing. We need not make the mistakes of an over optimistic USA that fears death and at the cost of ‘dignity’, she preached. This was then followed with Professor Gustavo De Simone's video of happy families talking about how glad they are that their terminal relatives were assisted to die with, again, 'dignity'. "No one likes it, but deaths isn't something you can fight, it's a part of life," said one family member.
After an hour and a half of listening to medical professionals praise death, which is admittedly not exactly what you want to hear from a room full of doctor, the important question was finally raised, does the LCP actually work? Whatever one's view of death is, all right minded people can surely agree that human life should not be taken lightly, and this is why the criticisms of the LCP are so worrying. Stories like that given by Felicity Smart's 98-year-old friend. It might sound old but she was independent, happy, and home cooking for herself when she got an infection. But she was left to die in hospital of dehydration because under the LCP, a doctor can make that decision. But problems like that were not mentioned. Their verdict, perhaps not surprisingly, was that: yes, the LCP worked marvellously and they had the proof.
Their proof was a recent audit, The National Care for the Dying Audit --Hospitals Round 3. A total of 7058 patient data was collected, and for the rest of the conference we were encouraged to know that the results were very positive to the LCP. The very next day, however, front page of the Telegraph, a very different story was reported. The article wrote that according to the audit families were still complaining they were being kept in the dark under the LCP. So which was it? Had the audit been a huge success, or were things under the LCP as bad as ever?
One explanation for the conference's optimistic interpretation of the audit over that of the Telegraph was that the two focused on different criteria for successful implementation. The Telegraph focused on complaints from families while the conference focused on how widespread the use of the LCP is.
According to the Audit as many as 2,500 families were not told that their loved ones had been put on the LCP. In a quarter of hospital trusts, discussions were not held with one in three families. In one hospital trust, doctors had conversations with fewer than half of families about the care of their loved one. Why not bring any of these alarming statistics up at the conference?
Kevin Fitzpatrick, spokesman for the campaign group Not Dead Yet, said: “It is very worrying that in any situation less than 100 per cent of families are being consulted before patients are being put on the Liverpool Care Pathway. It is a shock for families to find that out. In some situations doctors are prepared to do it without consulting families because they think they know what is best and questions arise as to why they think it is OK to do that. Families have the right to know why a loved one is being put on the LCP.”
Maybe this is exactly why family satisfaction was not considered "doctors...think they know better." The clue really perhaps should have been in the conference name: Care of the Dying: Everyone's Business. Forget what the patient wants, what the family wants, what do hospitals and policy makers want to do with the terminally ill? Is the idea that what a global, impersonal document says about your mother's, your father's, you’re children’s death and so on, is far more important than what they themselves have to say about it? Should we read between the lines: your death is a matter for everyone, but not a matter for you?
For the people at the conference the only kind of success the LCP could have was that it's being used, and that hospitals and policy makers support it. This was the only data from the Audit they cared to hear about, none of those pesky criticisms from people who still think death is a private matter and they deserve a say.
A self-contradictory air roamed the conference as they gave the only stats that mattered there. Within participating trusts, the Audit showed that the LCP is well spread, with 90% of wards having the LCP up from 47% 5 years ago. Since Round 2 the amount of patients whose care was supported by the LCP has increased from 21% to 31%. The amount of medical staff trained in the LCP increased to90% from 74%. Pats on the back for all.
If these are the only stats the conference cared about, though, why even start with persuading us that death is good? Why alarm us with statistic from America about the trouble of keeping people alive who are ready to die. Why comfort us with videos of families accepting death. It seems the answer could be found in the old Leonardo De Vinci quote, "while I thought I've been learning to live, I've been learning to die." Maybe now we're all being asked to learn not how to live but to how to die, to surrender our rights when others decide it’s our time. For us all to accept the cost when we are burdens so we must we take the flames. Or how about for the gas chamber? Because surely if we can take any lesson from history, it’s to ask: where does it end it when who dies is a decision for the good of society, and not for the individual?