The Liverpool care pathway is to be abolished following a government-commissioned review which heard that hospital staff wrongly interpreted its guidance for care of the dying, leading to stories of patients who were drugged and deprived of fluids in their last weeks of life.
The government-commissioned review, headed by Lady Neuberger, found it was not the pathway itself but poor training and sometimes a lack of compassion on the part of nursing staff that was to blame, while junior doctors were expected to make life-and-death decisions beyond their competence after hours and at weekends. The review says individualised end-of-life care plans must be drawn up for every patient nearing that stage.
"Caring for the dying must never again be practised as a tickbox exercise and each patient must be cared for according to their individual needs and preferences, with those of their relatives or carers being considered too," said Neuberger. "Ultimately it is the way the LCP has been misused and misunderstood that had led to such great problems."
She said it was too late to turn the clock back and salvage the LCP, which was devised to try to extend the positive experiences of dying hospice patients into the hospital setting. But in replacing it, the NHS must make care of the dying part of its core business, she said.
"What we have also exposed in this review is a range of far wider, fundamental problems with care for the dying – a lack of care and compassion, unavailability of suitably trained staff, no access to proper palliative care advice outside of 9-5, Monday to Friday."
The government confirmed it would phase out the LCP and said it would require all hospitals to review the care of dying patients. Every such patient should in future have a named senior doctor in charge of their care.
The care minister, Norman Lamb, said: "We hope the actions we have taken today will reassure patients and their families that everyone coming to the end of their life is getting the best possible care and that concerns are being dealt with swiftly.
"I have personally heard families describe staff slavishly following a process without care or compassion and leaving people suffering at the end of their lives. This is something we cannot allow to go on.
"People's final days should be as comfortable and dignified as possible. That is why there is a place for thoughtful and careful end-of-life care that involves patients and their families, but it is clear what we have now needs to be replaced so we can create a better way of doing this."
The review listened to harrowing stories from families who had not been told their loved one was expected to die and, in some cases, were shouted at by nurses for attempting to give them a drink of water. Nursing staff had wrongly thought, under the LCP guidance, that giving fluids was wrong. Some patients were put on the pathway and treatment was withdrawn, only for them to make a recovery, albeit temporarily. Communication was very poor and medical staff sometimes dodged painful discussions with patients and families, the review found.
The review strongly criticised the Nursing and Midwifery Council, which – unlike the General Medical Council, which regulates doctors – offered no guidance to nurses on the care of the dying. That must change "as a matter of urgency", said Neuberger.
The NMC said it was already looking at standards of conduct, performance and ethics of nurses, following the Francis report into Mid-Staffordshire hospital. "In light of the independent review into the Liverpool care pathway the NMC must make sure that it is issuing the right guidance for nurses and midwives," it said. "We will be working with relevant stakeholders and studying the recommendations laid out in this review."
Jane Cummings, chief nursing officer for England, said: "I would like to reassure everyone, particularly patients on the LCP and their families, that NHS England and the NHS is passionate about ensuring that every patient receives the best possible care at the end of their life. I have been a nurse for over 30 years and know how important care at the end of life is for our loved ones. I say this both on a professional and a personal level.
"The review and NHS England recognise the good principles of end of life care in the LCP, but there have been failings in the quality of care in some areas and this is never acceptable. Caring for someone when they are dying is difficult and emotional even for experienced healthcare professionals. But the NHS exists to provide personal and compassionate care to patients and their loved ones when they most need it. Most of the time we do get it right but we have to get it right for everybody. Issues such as poor communication with relatives have nothing to do with any particular care plan. That is just poor care and we don't want it in the NHS."
The review makes 44 recommendations, including the phasing out of the LCP over six to 12 months as individual care plans for the dying are brought in. It says that only senior clinicians must make the decision to give end-of-life care, along with the healthcare team, and that no decision must be taken out of hours unless there is a very good reason.
It says there must be no incentive payments to hospitals to put patients on end-of-life care, as occurred with the pathway. This was intended to offer encouragement to adopt best practice but has been interpreted as payments to speed up patients' demise.
In most parts of the world the proponents of palliative care and of assisted dying do not see eye to eye. Palliative care activists say the problems that lead to assisted dying requests can usually be dealt with in ways that do not hasten death. They promote quality of life and reject the idea of “dying on demand”. Supporters of assisted dying, on the other hand, argue that palliative care cannot be effective in every case. To them, the important thing is to respect autonomy and freedom of choice.
It’s unclear whether these two approaches can be reconciled.
Relations between supporters of palliative care and of assisted dying have a history of tension, even antagonism. Dame Cicely Saunders, founder of the modern hospice movement, was fond of going head-to-head in debates with members of the Voluntary Euthanasia Society in the 1960s, for example. More recently, the society’s change of name to Dignity in Dying in 2006 antagonised the hospice and palliative care world by implying that its practitioners did not have the monopoly on a dignified end.
Just last year, a group of experts representing the European Association for Palliative Care again declared that the provision of euthanasia and assisted dying should not be included in the practice of palliative care – a position that has remained unchanged for the last two decades.
The British Medical Association likewise remains opposed to the legalisation of assisted dying in any form, though in a series of recent reports it said it now seeks “to move debate beyond oversimplistic for/against positioning to consider some of the complex issues surrounding physician-assisted dying, its potential complexities and changing legislative and practical frameworks”.
Over the years, however, palliative care has struggled to gain traction. Indeed, my own research has shown that just 20 countries in the world have achieved “advanced integration” of their palliative care services with the wider health and social care system.
The UK is ranked the best place to die when it comes to palliative care, according to an index constructed by the Economist Intelligence Unit (EIU). But there have been obvious failings and shortcomings in the delivery of palliative care at scale. We see these in the furore over the Liverpool Care Pathway and in poor reports on end of life care from the ombusdman and the Care Quality Commission.
Would legalised assisted dying have any bearing on these problems? We only have a few examples to go on.
Legalising assisted death
Euthanasia and/or physician assisted dying are currently legal in just four countries: the Netherlands (2001), Belgium (2002) and Luxembourg (2009) have all legalised euthanasia. This means it is legal in these countries, provided certain procedures and protocols are followed, for a doctor to kill a patient at their informed and competent request.
In the US, individual states have focused their efforts on the legalisation of physician assisted suicide, though the broader term “aid in dying” is now being adopted by some. This involves a doctor in a process to prescribe lethal drugs to a person who, following defined procedures, has resolved to end their own life by taking the drugs, and then does so. It was legalised in Oregon in 1997 and more recently was taken up by Washington State, Montana, and Vermont. California will soon follow when its End of Life Option Act comes into effect on June 9.
By long standing arrangement, Switzerland does not prosecute those who assist a suicide, provided they do not benefit from the outcome.
In locations where either physician assisted suicide or euthanasia are legalised, there is no evidence this inhibits the development of palliative care. In Oregon, most of the very small numbers of people who avail themselves of the Death with Dignity Act are actually on hospice programmes. In the Netherlands, palliative care services, research and education appear to have thrived in the period since euthanasia was fully legalised, though they were underdeveloped before that.
Belgium provides the most interesting example: it has almost 200 palliative care services, is in the list of 20 countries with “advanced integration” of palliative care and was ranked fifth worldwide in the EIU’s “quality of death” index. It is also home to academic research groups studying end of life issues as well as leading professors in the field – yet in Belgium about one death in 20 results from euthanasia.
The Flanders model
Something unique has happened in the Flanders region of Belgium: the practice of euthanasia and the delivery of palliative care have been brought together in a single “integral” model. Here no contradiction is seen delivering the best pain and symptom management and the holistic psycho-social support that palliative care has to offer, while also enabling a person’s life to be ended at their request, by a physician.
The Flanders model offends some and inspires others. But, as the authors of one of the few studies on the matter conclude:
Most values of palliative care workers and advocates of euthanasia are shared. If Belgium’s experience applies elsewhere, advocates of the legalisation of euthanasia have every reason to promote palliative care, and activists for palliative care need not oppose the legalisation of euthanasia.
Should assisted dying and the delivery of palliative care exist side by side? Their shared aim would be to provide relief from suffering, support dignity and also allow the freedom to determine the manner and timing of one’s own death. Flanders and Oregon hint that this approach can work, and we intend to look at this further in our Wellcome Trust-funded study on Global Interventions at the End of Life.
It is perhaps time to bring down the ethical and ideological wire fence which has for so long separated the two approaches to the end of life: palliative care and assisted dying. Once this barrier has been removed we might more fully explore how best to deliver dignity and choice to the growing number of people who will die in the world every year.