The government has responded to Baroness Neuberger’s report into the Liverpool Care Pathway (LCP) by announcing its termination. The report, More Care – Less Pathway, claimed that 130,000 patients were subjected to the LCP annually. Financial inducements were offered to encourage take-up. Introduced to improve patients’ end-of-life experience the LCP can involve heavy sedation (such that patients can no longer communicate with nursing staff and loved-ones) and the withdrawal of food and water. Popular with medical staff the LCP became feared and reviled by those forced to watch family members die a frightening and undignified death. Instead of easing pain and suffering in too many cases the pathway amplified it. Some of those who gave dying relatives water were admonished by nurses. Campaigns by papers like the Daily Mail hastened the LCP’s death. Too often the Pathway had more to do with euthanasia than care. A frightening new development you might think? Not so. The National Health Service has been here before.
Case 1: On 16 May 1966 the Physician Superintendent at London’s Neasden Hospital issued the following Memorandum: “Respiratory Failure and Cardiac Arrest Resuscitation …. The following patients are NOT [sic] to be resuscitated:- Very elderly, over 65 years; Malignant disease; Chronic chest disease; Chronic renal disease; Top of yellow Treatment Card to be marked – N.T.B.R. (i.e. Not to be resuscitated)”. The instruction was followed for sixteen months … until on 20 September 1967 the BBC made it public. (I cannot think of a better justification for ensuring the British Press remains immune from political meddling). The Minister for Health ordered that the instruction be withdrawn. Some doctors regretted only that the instruction had been committed to paper. They would have continued using Neasden’s NTBR protocol.
Case 2: On 19 February 2012 British newspaper The Independent on Sunday published an article by retired London midwife Joyce Prince. Ms Prince reflected on the time she spent caring for the inhabitants of Shepherds Bush, sixty years ago a tough and impoverished neighbourhood. In the 1940s and 1950s British women lacked many of the freedoms they enjoy today. Lacking education and subject to a paternalistic and sexist culture many had little influence over child-bearing. They had as many children as the man of the house (usually the sole breadwinner) desired. According to Ms Prince working-class women, aware of the psychological and financial stresses of large families, developed a pragmatic (but illegal) method of family planning: they engaged in infanticide. Mysterious deaths were attributed to ‘overlaying’, the women claiming they had suffocated the baby when they rolled on to it while asleep. Ms Prince’s midwife tutor (now deceased) came to terms with the problem of overlaying by locating it in the wider context of poverty, ignorance, patriarchy and exploitation: “Mrs James played an important role in supporting women who had to explain themselves in the courts. She listened carefully and non-judgmentally to their story …. Mrs James never discussed what I can only think now was collusion in infanticide”.
No doubt the NHS staff involved in the practices outlined above believed they were doing the right thing. Nevertheless the fact remains that in each case the NHS failed to live up to the highest ideals of the service. Specifically Primum non nocere (first, do no harm).
The problem with models
The problem with a care model like the LCP is that it subsumes variability within a singular, overarching characterisation. Models average or flatten-out the features of those things with which they are concerned. Financial models flatten-out the complexities of economic life. Care models flatten-out the complexities of human existence. They deny human variability.
Care models like the LCP induce formulaic responses. A patient who is the subject of a care model is treated not as an individual but as an average specimen. The nuances of her/his case are subsumed within an overarching vision of what health professionals assume it is like to be nearing the end of one’s life. Care models depersonalise the treatment process. In extremis they dehumanise it. Care models are authoritarian in nature, their authoritarianism acting on both the patient and the carer. This is why nurses saw nothing wrong with shouting at visitors who gave dying relatives water.
Here is some advice for anyone who comes into contact with the health profession. Never defer to authority. Never take what is said at face value. Ask questions. Get a second opinion. Doctors and nurses are fallible, especially when they are fatigued and have targets to meet. Remember this fact: hospitals can be dangerous places. The World Health Organisation notes: “Roughly one in ten patients admitted to hospital in developed countries suffers some form of medical error”. If that doesn’t persuade you to treat medical advice and ‘care’ plans with a degree of scepticism, nothing will. Usually the NHS does a great job. Occasionally, however, as demonstrated by Neasden Hospital’s 1966 NTBR policy and the LCP, it spawns something sinister.