'Scaremongering' on End-of-Life Care in UK Media, Says Doc

Zosia Chustecka

November 06, 2012

End-of-life care has been making headlines in the United Kingdom for some months now, with a volley of articles expressing concerns over the Liverpool Care Pathway (LCP) for the Dying Patient. This care tool is part of the government's End-of-Life Care Strategy, which aims to improve care for patients in their final days.

However, newspapers have been highlighting alleged abuses of the strategy and attacking the concept. The Daily Mail suggested that the LCP is "really a way of hastening the deaths of terminally ill patients," and the Daily Telegraph highlighted claims that life is being ended prematurely to free up hospital beds.

This is scaremongering, writes Margaret McCartney, MbChB, MRCGP, a general practitioner in Glasgow, United Kingdom, in an essay published online October 30 in BMJ. She warns that the "onslaught of scaremongering publicity may simply increase fears about the appropriate use of human analgesia — for patients, families, doctors, and nurses — and lead to more painful deaths because of this."

In another essay published online October 30 in BMJ, general practitioner Des Spence, MD, MRCGP, also from Glasgow, explains that the LCP has transformed end-of-life care. "Used properly with senior supervision, the pathway offers structure to a peaceful, pain-free, dignified death at home — a good death," he writes.

The media attacks appear to have prompted a consensus statement signed by 20 organizations, including professional medical bodies (such as the Royal Colleges of Physicians, General Practitioners, and Nursing), charities, and volunteer organizations (such as Age UK and Marie Curie Cancer Care). Although not referring directly to media reports, the statement notes that "published misconceptions and often inaccurate information about the Liverpool Care Pathway risk detracting from the substantial benefits it can bring to people who are dying and to their families."

Aims for Dignified and Peaceful Death

The LCP was developed during the late 1990s at the Royal Liverpool University Hospital, in conjunction with the Marie Curie Palliative Care Institute. It was intended to provide the best quality of care possible for dying patients in the last hours and days of life, whether they were in the hospital, at home, in a care home, or in a hospice, according to a news item about the recent media reports published on the official Web site of the UK National Health Service (NHS).

In it, the goal of the LCP is described as ensuring that a death is as dignified and as peaceful as possible. To that end, the LCP might involve reviewing whether any further medications or tests (e.g., taking the patient's temperature or blood pressure) would be helpful, reviewing how to keep the patient as comfortable as possible (e.g., adjusting the position in bed), reviewing whether artificial fluids should be given when a patient has stopped being able to eat or drink, and reviewing the patient's spiritual or religious needs.

The LCP is recommended as a model of best practice by the Department of Health, and has been adopted in many hospitals in the United Kingdom and other healthcare settings, the news item notes.

It is 1 of 3 tools for caring for terminally ill patients highlighted in the Department of Health's End-of-life Care Strategy, which was introduced in 2008. Since then, this strategy has allowed nearly 30,000 more people to die where they usually live — at home or in a care home.

Withholding Food and Drink

The consensus statement highlights a recent parliamentary response on the issue. "The LCP has sometimes been accused of being a way of withholding treatment, including hydration and nutrition. That is not the case. It is used to prevent dying patients from having the distress of receiving treatment or tests that are not beneficial and that may in fact cause harm rather than good," said Earl Howe, the parliamentary undersecretary of state for health, in answer to a question asked in the House of Lords on June 20.

In her piece, Dr. McCartney highlights this misconception. She quotes a column in the Daily Mail that says that withholding food and drink "is starving or dehydrating someone to death. And that is not helping them to die, but killing them."

Dr. McCartney points out that the LCP does not preclude artificial hydration. She adds that these comments seem to insist that doctors do something, even if the intervention is not "in the best interest of the patient or the ethics and duties of medical professionalism."

"Death has too often been regarded as medical failure rather than an inevitable consequence of life," Dr. McCartney notes.

Dr. Spence also makes this point. He recalls his time as a junior doctor with no training in end-of-life care and no experience in pain relief. "I wasn't able to recognize death," he writes. "Patients were enduring hopeless interventions and resuscitations because I was trained to 'do something'."

The LCP and committed district nursing teams are transforming care. "We talk about death in an open way and decide where patients die," Dr. Spence writes.

Family physicians were asked to establish a registry of patients with chronic conditions or cancer who might die in the next year so that end-of-life care could be discussed with them, Dr. Spence explains to Medscape Medical News. The newspapers refer to this as "death lists" for emotive effect, he notes.

"The 'death lists' exist to tackle a taboo: they facilitate discussion about death with patients and families," he explains.

"But the newspapers are right: this pathway must be used with full explanation and the consent of all involved," Dr. Spence writes. "If it has not been used in this way, then a review is welcome if only to reassure the public," he adds, referring to newspaper reports that an investigation has been launched into the use of the LCP.

On November 5, the Department of Health announced a public consultation on the NHS constitution. Among the changes that are being proposed is a point that would "make it clearer that...patients, their families, and carers should be fully involved in all discussions and decisions about their care and treatment, including their end-of-life care."

BMJ. 2012;345:e7308, e7316. Spence, McCartney