New Draft Guidelines for Care of Dying Place Patient at Center

Liam Davenport

August 06, 2015

New draft guidelines for the care of the dying published in the United Kingdom urge clinicians to consider sharing decision-making with patients, and to assess whether treatments of questionable value should be continued.

The draft guidelines, published July 29 by the National Institute for Health and Care Excellence (NICE), replace the now-abandoned Liverpool Care Pathway (LCP), developed by the Royal Liverpool Hospital, alongside the Marie Curie Palliative Care Institute.

The LCP was designed to offer hospice-style care in the hospital and to prevent unnecessary invasive tests and treatment that could cause pain and needlessly prolong life. However, it attracted controversy as soon as it was introduced (in the late 1990s), with claims that assessments to determine that a patient was dying were not always made by an experienced clinician, that poor prescribing could cause unnecessary sedation, and that hydration and essential medicines could be withheld.

A randomized controlled trial comparing LCP with standard healthcare practice showed that it offered little clinical benefit, as reported by Medscape Medical News. Study coauthor Irene Higginson, PhD, OBE, director of the Cicely Saunders Institute at King's College London, United Kingdom, noted that "any initiative that replaces the LCP [must] be grounded in scientific evidence and tested in controlled trials before being rolled out."

However, the NICE draft guidelines on the care of the dying, which have been endorsed by a number of leading independent clinical bodies — including the Royal College of Physicians, the Royal College of General Practitioners (RCGP), and the Royal College of Nursing — have already attracted strong criticism, with accusations that they continue all the mistakes of the LCP.

Signs and Symptoms

The draft guidelines specify a number of signs and symptoms that a person might display or experience in the last days of their lives and the information that should be gathered, emphasizing that the assessment should be made on a team basis.

It also sets out a series of recommendations for establishing the degree to which patients wish to know their prognosis and how much they would like to be involved in decision-making over their care plan.

There are also provisions to review the medications that a patient is taking in terms of possible benefits and harms, including a recommendation to stop them if they are not offering any symptomatic benefit.

In addition, the draft guidelines discuss weighing hydration support against any potential risks, such as swallowing problems. They explain that clinically assisted hydration should be discussed, and note that it is, in itself, unlikely to prolong life.

"Recognizing when we are close to death and helping us to remain comfortable is difficult for everyone involved," Sir Andrew Dillon, chief executive of NICE, said in a press release.

"The Liverpool Care Pathway was originally devised to help doctors and nurses provide quality end-of-life care. While it helped many to pass away with dignity, it became clear over time that it wasn't always used in the way it was intended," he added. "Earlier this year, the Parliamentary and Health Service Ombudsman said that end-of-life care could be improved for up to 335,000 people every year in England. The guideline we are developing will ensure that people who are nearing the end of their lives are treated with respect and receive excellent care."

Not a Pathway

"The clear difference between [the draft guidelines] and the Liverpool Care Pathway is that this is not a 'pathway' or process to be followed," Dr Catherine Millington-Sanders, RCGP clinical lead for end of life, was quoted as saying recently in GP Online.

"This provides guidance on what good practice looks like and gives practical advice on issues that need to be considered when caring for a person in their last days of life, " she said.

"It also aims to support patient choice at this important time in their life, and to enable, wherever possible, patients to be cared for and to die in their preferred place, as well as supporting their families and their carers through the experience," she added.

The focus the guidelines place on personalized care is welcome, said Claire Henry, chief executive of the National Council of Palliative Care. "It is not a tick-box exercise that someone just has to follow. It focuses on individual needs," she told BBC News.

Patient Concern, a patient advocacy group, also backed the draft guidelines. "This is about the most sensible advice that NICE has put out for a long time," Roger Goss, NICE spokesperson, told The Telegraph.

"It is shocking that this has to be spelled out to doctors and nurses, but its not surprising in the wake of what we saw with the Liverpool Care Pathway," he explained.

However, Patrick Pullicino, MD, professor of clinical neuroscience at the University of Kent, United Kingdom, who raised concerns about the LCP, argues that far from improving care for the dying, the draft guidelines "perpetuate the features that made the [LCP] so dangerous," according to The Telegraph.

Specifically, the recommendations for diagnosing that a person is dying are "no better" in the NICE document than in the LCP. "It includes a cookbook list of features that may suggest someone is dying but is totally inadequate to make a diagnosis and is not evidence-based," Dr Pullicino explained. "So we are back at the LCP in terms of the risk of putting patients who are not dying onto inappropriate and potentially lethal treatment."

Echoing Dr Higginson's calls for more research, he added that "the section on hydration in the NICE document is a disaster of misinformation, distortion, and ambiguity, with at least one major error."

"It says that 'death is unlikely to be hastened by not having clinically assisted hydration.' This is completely untrue," Dr Pullicino said. "Not giving hydration is certain to kill someone if they can't take hydration by mouth. There is no mention of nutrition in the NICE document."

"Evidence-based medicine is the gold standard for 21st-century healthcare. The LCP abandoned this and was disastrous, not only for the patients but for all medicine," he concluded. "NICE should ensure all pathways meet this standard."

"Its current proposal certainly does not," Dr Pullicino said.

The draft guidelines were funded by the National Institute for Health and Care Excellence.


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