On the Liverpool Care Pathway
By Sam Goddard
"Establishing that a person is incontestably nearing death is in no way an exact science."
Sam Goddard’s grandmother was a resident at the infamous home described by some to dish out "death sentences" to its patients. He shares his first-hand experience of an NHS-institution accused of misdiagnosing and mistreating patients.
In October 2008 my grandma, Pamela Goddard, died painfully in hospital. Her death was unnecessary. She had been wrongly placed on the Liverpool Care Pathway, the controversial Department of Health approved scheme for end of life care. Once on the Pathway, fluid and drugs are withdrawn and the patient is sedated continuously until death. The scheme is accused of forcing some terminally ill patients to die prematurely, whilst masking any potential signs of improvement in their condition.
After contracting breast cancer in the 1960s, my grandma overcame several recurrences of the disease, but was diagnosed with cancer once again in June 2008 while being treated in hospital for a broken leg. Cancer treatment appeared to be working, and she was fully expected to survive. However during the course of her treatment she developed a painful bedsore which, as a result of inadequate treatment, became infected. Her care was then switched to palliative without consulting the family; what resulted was four weeks of torture before she finally died, pumped full of painkillers and deprived of water and medication.
Developed by Marie Curie in the organisation’s Liverpool hospice in the late 90s, the Pathway was originally established as a mechanism for ensuring that cancer patients nearing the end of their lives receive the same level of nursing expertise in hospital as they would in a hospice. The initial idea has now been expanded to include other terminal conditions and, with a recommendation from the National Institute for Health and Clinical Excellence in 2004, has been gradually adopted nationwide. As of 2009, more than 300 hospitals, 560 care homes and 130 hospices in England were using this system.
Establishing that a person is incontestably nearing death is in no way an exact science. Diagnosis is based on a number of factors, which can be symptoms of other illnesses or conditions. The result is what Dr Peter Hargreaves, Consultant in Palliative Medicine, describes as a ‘self fulfilling prophecy’: patients who are allowed to become dehydrated and confused are then wrongly placed on the pathway, thus assuring, rather than just facilitating, their death. Worryingly, as many as 4 percent of patients initially placed on the Liverpool Care Pathway actually get better and fully recover.
Continuous deep sedation until death, advocated as part of the Pathway, is another cause for concern. According to research conducted in 2009 by Clive Seale, professor of medical sociology at Bart's and the London School of Medicine and Dentistry, 16.5 percent of all deaths in the UK occurred under continuous deep sedation – twice the number as in Belgium or the Netherlands. Sedation of this kind can often make it much more difficult to assess whether or not a patient is getting better.
Such concerns were dismissed by a number of palliative care professionals. Professor John Ellershaw, Director of the Marie Curie Palliative Care Institute, said: ‘The Liverpool Care Pathway does not endorse continuous deep sedation nor, as has been misreported in some places, the removal from dying patients of beneficial medication.’ Peter Saunders, Director of Care not Killing, gave a more qualified defence of the scheme: ‘There is a need for continuing education of health care professionals, at all levels and in all aspects of modern palliative care,’ he said. ‘This includes diagnosing correctly that patients are imminently dying, and detecting reversible causes of deterioration in patients in advanced illness.’
My grandma’s case was far from an unfortunate one off; in recent years there have been several high profile instances of patients in NHS hospitals being wrongly placed on the pathway. In October 2009, 76 year-old Jack Jones, after beating cancer, was told, without any tests, that the disease had returned and, so his family claims, was denied food and medication. After his death two weeks later, tests revealed that he had been suffering from pneumonia and could have recovered had the correct treatment been administered.
Elevating the quality of end of life care in hospitals by bringing in hospice practices is a laudable aim. According to National Mortality Statistics 2004, only 16 percent of cancer deaths occur in a hospice; for non-cancer related deaths, only 5 percent of patients die in hospice care. There is clearly a need to redress the balance, but the Liverpool Care Pathway is not a convincing answer. On the lack of palliative care expertise among hospital staff, Dr Saunders said that ‘Any tool is only as good as the workman who uses it’, and this is unconscionable. The overall attempt to develop a one size fits all approach has resulted in a system that lets patients and their families down all too often.