Advance thinking about Advance Directives

Advance thinking about Advance Directives It is sometimes said that when the USA sneezes the U K catches a cold; and perhaps Canada catches it a bit earlier. Advance Directives (ADs), in which people express their wishes regarding decisions on their future medical treatment and care should they become severely ill, have been around in the U S A for a long time (Kutner 1969). The finding in a survey o f 327 nurses at a national Canadian Association o f Critical Care Nurses Conference that 80% o f respondents had cared for at least one patient with an AD is an indication o f the relevance o f the topic for critical care nurses, despite the 24% response rate (Leith 1998). 'Living wills' which are a type o f AD have been around for some time in the U K to a lesser extent, but are likely to increase. The topic merits attention from critical care nurses here too. In N o r t h America there is legislation about ADs (Leith 1997, Crego & Lipp 1998). In the UK, where perhaps there is more recognition o f the disadvantages o f tying everything up too tightly in law, with its inevitably cumbersome and rigid processes, the view of the House o f Lords Select C o m m i t t e e (1994) was against legislation. The R e p o r t included statements ' W e c o m m e n d the developments o f ADs. But we conclude that legislation for advance directives is generally unnecessary. Doctors are increasingly recognizing their ethical obligation to comply with them.' (Select Committee on Medical Ethics 1994). Instead it was recommended that the colleges and faculties o f all the health care professions should develop a code o f good practice together, based on the informing premise that advance directives must be respected as an authoritative statement o f the patient's wishes in respect o f treatment. A code has been formulated and issued by the British Medical Association in collaboration with the Royal College o f Nursing ( R C N ) , and other R o y a l Colleges. Discussion has continued. O n e o f the points which has emerged from studies in the U S A (e.g. Danis et al 1994) is that living wills need to be reviewed regularly if they are to be a true representation o f a person's Intensive and Critical Care Nursing (1998) 14,57-5B

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wishes regarding treatment, since people's wishes may change, not least in relation to their experience o f illness or accident and treatment. The statements above indicate an important point, that good communication between the people involved in health care lies at the heart o f good treatment and care, particularly when there are difficult decisions to be made. These people include doctors, nurses and others in health care professions, patients and their family members, who may k n o w a patient's wishes even when these are not expressed on paper, or that he or she has written an AD. O n e recommendation o f the report mentioned previously is that 'the training o f health care professionals should do more to prepare them for the weighty ethical responsibilities which they carry, by giving greater priority to health-care ethics and counselling and communication skills' (Select Committee 1994). Nurse education in the U K began to show recognition o f the importance and skills o f communication around the beginning o f the 1980s, and the teaching o f ethics, rather than professional etiquette, has increased considerably from the late 1980s. Both still sometimes suffer from the usual theory-practice gap, and this is made worse where staff shortages or other factors impede learning from good role-models and discussion in critical care units (though perhaps clinical supervision may help, where it is in action effectively). To play an appropriate part in communication and caring for patients with ADs nurses must have thought about the issues in advance, based on adequate knowledge including, for example, the different types o f ADs (Leith 1997). This involves understanding and thinking about the differences between appropriate use and limitations o f treatment, and euthanasia in the sense o f deliberate killing (rather than 'a good death' which is the more literal meaning o f the w o r d euthanasia). It was rather disconcerting to pick up, at the 1998 P,.CN Congress, 'A guide to Advance Directives' and find that the response slip which formed part o f it was addressed to the Voluntary Euthanasia Society. O f course this Society has as much right as others to promote use o f ADs within the bounds o f law and, to be fair, there are statements in the leaflet indicating that refusing treatment under an A D is not synonymous with voluntary euthanasia. But it would be a pity if nurses opposed to euthanasia were dissuaded by such leaflets from learning more about and respecting ADs indicating treatment limitations. Experienced critical care nurses k n o w better than most people the wonders o f modern medicine and nursing treatment and care, and the many lives that are saved. But such experience also brings recognition o f the limitations

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o f treatment, and acute frustration w h e n treatments are c o n t i n u e d b r i n g i n g no benefit to the patient and possibly distress to both patient and family. N o w that people in general have access to m u c h more medical knowledge through television, the internet and other media it is both right and to be expected that m a n y wish to take a more active part in decisions about their health care. W h i l e it is normally a doctor's j o b to tell people the diagnosis, nurses play an important part in ensuring that people have adequate, accurate health-related information and understand it, and in supporting t h e m as they make decisions and deal with the consequences. T h a t requires nurses w h o keep u p - t o date with relevant information, including information o n h o w people make and express health-related decisions, and recognize the implications for practice. G i v e n the experience, research and practice in N o r t h America it w o u l d be interesting to k n o w , for example, the level o f critical care nurses' k n o w l e d g e about ADs in the U K , and what p r o p o r t i o n o f critical care units have any policy about ADs. For example, w h e n a patient is admitted is a n y o n e asked if the patient has one; where should it be kept i r a patient has one; h o w are staffinformed about it, and do staff receive guidance about any legal implications related to writing, witnessing and respecting o f an AD? In the 50 years of the National Health Service, the situation has changed from one where patients generally had comparatively little information about their health state, progress and treatment options, understood even less, and played little or no part in decisions about their health care. T o quote from a British Medical Association Conference (1995) ' U n t i l recently, consent was little more than a legal nicety; a doctor w o u l d tell his patient what he i n t e n d e d to do and the patient w o u l d give h i m permission to do it.' Nurses often followed a similar pattern, t h o u g h perhaps in nursing a general change towards giving patients more a u t o n o m y began earlier than in medicine. N o w

it is expected that patients (and their next-ofkin) will receive adequate, accurate and welltimed information as far as possible, that c o m p e tent patients have a right to choice in treatment decisions w i t h i n the resources available and appropriate options, and that m a n y choose to exercise their prerogative in decision-making. O f course, patients' critical health states and the time-related effectiveness o f life-preserving measures complicate the situation in critical care units, w h i c h is w h y critical care staff have to be well-prepared for all likely situations. People and situations have changed over the years. Nurses and health care organizations have changed vastly too. B u t have all changed e n o u g h to provide o p t i m u m care for people w h o are, to the extent possible, active rather than passive participants in their health care, including decision-making? Pat Ashworth Editor

REFERENCES

British Medical Association 1995 Statements, directives and dialogue. Meeting Reports. Bulletin of Medical Ethics Number 108, May, 1995 p 23 Crego P J, Lipp E J 1998 Nurses' knowledge of Advance Directives. AmericanJournal of Critical Care 7 (3): 218-223 Danis Met al 1994 Stability of choices about lifesustaining treatments. Annals of Internal Medicine 120:567-573 as cited in Bulletin of Medical Ethics Number 108, May 1995 p 18 Kutner L 1969 Due process of euthanasia: the living will a proposal. Indiana Law Journal 44:539-554 as cited in Leith B 1997 Leith B 1997 Advanced Directives in critical care. Official Journal of the Canadian Association of Critical Care Nurses 8 (4): 21-15 Leith B 1998 Canadian critical care nurses and advance directives. OfficialJournal of the Canadian Association of Critical Care Nurses 9 (1): 6-11 Report of the Select Committee on Medical Ethics (HL Paper 21) - Vol I: Report: Vol II: Oral Evidence; Col III: Written Evidence. HMSO, London 1994 as cited in Bulletin of Medical Ethics Number 95, February 1994 p 16