Abstract
Despite guidance from the General Medical Council (GMC) and the British Medical Association (BMA), Britain's senior medical organization, the Royal College of Physicians of London (RCP), became increasingly aware of the need for practical guidance for those concerned with issues at the bedside around artificial nutrition and hydration (ANF). The result is a recent report produced jointly by the RCP and the British Society of Gastroenterology, 1 endorsed by a variety of professional bodies including the Royal College of Speech and Language Therapists, the Royal College of Nursing and the British Dietetic Association. The context is, however, different from the previous GMC or BMA advice. The report concerns patients who may be able to swallow, but with risk or difficulty, and/or who are dying. It provides guidance on when oral feeding should be withdrawn and tube feeding initiated and/or withdrawn.
The RCP felt the need to provide new guidance despite a great deal of attention having been given to end-of-life issues by a number of organizations. In 2002, the UK's GMC published its first standalone guidance on ‘Withholding and withdrawing life-prolonging treatments’.
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This was designed to build upon advice in its earlier ‘Good Medical Practice’. It offered six paragraphs on the often difficult problems of ANH. By the time the document was revised under its new title of ‘Treatment and care towards the end of life’
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the relevant section, renamed ‘Clinically assisted nutrition and hydration’, had been expanded to 16 paragraphs. The guidance was long overdue. The 1999 case of Tony Bland
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had indicated the need for guidance in decision-making. To its credit, this was initially provided by the BMA.
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That report commented: ‘The Courts have not specified that declarations should be sought before withholding. … from patients not in PVS. Although a body of medical opinion has developed that such action would be appropriate in some cases (such as … serious stroke or … severe dementia), UK courts have not considered such a case. This arguably leaves doctors in an area of legal uncertainty and therefore open to challenge…the BMA believes additional safeguards should be followed.’
For many of us involved in the drafting of the new RCP guidelines, one of the most controversial items in that quotation was the use of the word ‘arguably’. Consultation on the report drew over 2000 responses, an extraordinarily large number compared with feedback on most medical reports. Clearly, this was an area of huge concern to doctors, other health-care professionals and the general public.
Since then, there have been significant developments which influenced the RCP's guidance. In law there has been the Human Rights Act 1998 (in force from 2000), the Mental Capacity Act 2005 (in force from 2007), the Mental Health Act 2007 and numerous judgements in case law. In medicine, tube-feeding techniques have developed or been refined with wider use of feeding by fine bore nasogastric tube, endoscopic gastrostomy, radiologically placed gastrostomy, percutaneous endoscopic jejunostomy and surgically placed jejunostomy. From a regulatory perspective, the Care Quality Commission was set up in England to regulate health and adult social care, whether provided by the NHS, local authorities, private companies or voluntary organizations. Ethical debate has flourished on the appropriate use of these techniques, on the probable interpretation of legislation and on the regulatory requirements.
The RCP working group was aware that debates around nutrition and hydration are controversial. Particular words carry particular resonances. Even the phrase ‘artificial nutrition and hydration’ as opposed to the GMC's preference for ‘clinically assisted nutrition and hydration’ is controversial. The use of a word in one context that is customarily used in another may be chosen to emphasize a viewpoint or shock a reader. For example, to starve can mean either to cause to perish of hunger or to die of hunger. Hunger, in turn, may indicate the painful sensation caused by want of food, a scarcity of food or famine or metaphorically to suggest a vehement desire for or after something. In our wards, a patient may die of nutritional deficiency, without experiencing the painful sensation caused by want of food. The report is careful to use the words ‘hunger’ and ‘thirst’ to refer to the sensation of the lack of food and drink, rather than merely the state of being without either. As R S Thomas says, 6 ‘we have all been victims of vocabulary too long’. The report is careful to use the words ‘hunger’ and ‘thirst’ to refer to the sensation of the lack of food and drink, rather than merely the state of being without either.
Problems with artificial feeding and nutrition are significant: data from North America suggest a prevalence of swallowing difficulties of up to 60% in nursing home residents and 12–13% of patients in hospital. 7 In the 2008 annual survey of the British Artificial Nutrition Survey, 8 39,000 people in the UK were reported to be artificially fed outside hospital during the preceding year, 66.5% for swallowing difficulties. A third of those artificially fed live in nursing homes, of which 582 people were recorded with dementia. In hospital, six out of 10 older people are at risk of malnutrition, or their situation getting worse in hospital. 9 The lack of appropriate food and the absence of help with eating and drinking for those unable to manage independently is a frequent issue raised by relatives. Nobody can doubt that the concerns addressed by the working group are genuine, frequent and perplexing. They affect a variety of specialties: physicians involved in the acute medical intake, general practitioners, gastroenterologists, neurologists, specialists in palliative care, geriatricians and psychiatrists. They also involve other disciplines: nurses, speech and language therapists especially. In hospital the formation of a multidisciplinary nutrition support team is therefore essential if the best standards of care are to be achieved. Other health professionals will also be involved but, critically, so must patients themselves and their families and carers.
Good ethical judgement rests upon sound science. A basic understanding of the clinical issues relevant to oral feeding therefore makes an appropriate starting point. Some difficulties in feeding may originate in the preoral phase, some may be intraoral, some result from respiratory disease and others from a variety of medical, surgical or psychiatric disease. Neoplastic disease of the upper gastrointestinal tract will produce different challenges than motor neurone disease. Three questions are therefore essential at the outset: what is the underlying diagnosis; what is the mechanism of the oral feeding problem; and can the person eat or drink and, if so, at what risk? Before questions of withholding or withdrawing nutrition or hydration arise, the more basic question must be answered of whether ANH is necessary in the first place. Indeed, if there is one message coming from the RCP's deliberations, it is that ‘nil by mouth’ should be a last resort rather than a first option.
There has been a growing belief that percutaneous endoscopic gastrostomy (PEG) feeding is a low-risk practice. Mortality figures are confused by the degree to which death results from the underlying disease rather than the procedure. Nevertheless, it is clear that PEG feeding is not a risk-free procedure and is probably overused. One audit of 719 PEG procedures reported that 19% were futile and, of those dying, 43% did so within one week. 10
The multidisciplinary working group that produced the report heard evidence of poor practice involving the withdrawal of feeding as well as its inappropriate continuation. There were also reports of disagreements between health professionals and family members when patients were unable to articulate their wishes. And there were concerns about care homes demanding tube feeding as a condition of entry. International evidence suggests that some patients who could be fed adequately by mouth are being referred for tube feeding to relieve the burdens on both carers and professionals. 11 Feeding some patients takes longer and places additional demands on staff at mealtimes, both to assist feeding and ensure that food remains hot. A variety of responses to these problems are listed. Gastrostomy feeding may be the easiest response, but that does not make it the right one. It is stated that it is both bad practice and unethical for patient to have a gastrostomy tube inserted as a condition of entry, because sufficient trained staff are not available.
Patients with advanced dementia frequently develop oral feeding problems, eating difficulties or an indifference to food, leading to a reduction in nutritional intake, weight loss and an increased risk of aspiration. This is often a late event, associated with the final phase of the illness when it is no longer possible to understand the patient's wishes. Some doctors and relatives of people with dementia believe that tube feeding is beneficial. However, there are substantial amounts of data that suggest the reverse. With few caveats it would seem that tube feeding fails to prevent aspiration pneumonia, fails to improve survival, fails to improve or prevent pressure sores, fails to improve functional status and fails to improve patient comfort. A reasonable conclusion might be that it should never be used in this sort of patient. However, the working party was reluctant to recommend a blanket ban, emphasizing the desirability of individual risk assessment.
The emphasis in the report on the practicalities of understanding the pathophysiology and the techniques to address it resulted in sections on both ethics and law being separate, rather than fully integral. The importance of ethics in case law and in parliamentary debate on proposed statute law means that sound ethical practice is a powerful protection against legal liability. The outline of ethical concerns covers familiar ground: sanctity of life, ordinary and extraordinary means, intended and forseeable, double effect, best interests, conscientious objection, trust and transparency and ethics of process. This part of the report is a concise reminder of the ethical standards that may need to be applied. Similarly the section on law outlines capacity, competence, the duty of basic care, intolerability, advance decisions and when to go to court. Perhaps the one novel discussion for many practitioners will be the status of the concept of intolerability and the possible use of this as ‘a valuable guide’. A hard-pressed clinician is far more likely to be able to answer the question ‘Is his life intolerable?’ than the question ‘Is it in his best interests to continue to exist?’
In its final section the report exemplifies the preceding advice with case descriptions and how these might be addressed. Teams may have their own disagreements and this re-emphasizes the importance of addressing the question ‘What are we trying to achieve?’ In practice what are the circumstances in which a trial of tube feeding might be considered?
Summarizing, the first priority is an expert medical assessment with good communication using unambiguous language. Time, a medically led nutrition support group and skilled nursing are other prerequisites for best practice. Of course, discussion does not always relieve dissent but the practical advice offered here should enable better standards of care. Informal early feedback since publication suggests that aim is already being achieved.