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Ethics of artificial nutrition
Nutrition and coexisting disease
Ethics of artificial nutrition
Application of these principles provides a systematic and relatively objective means of approaching ethical dilemmas. Advocates stress that they should be seen, not as precise guides to inform doctors in every circumstance, but as a framework of values that are relevant to ethical debate.
John MacFie
Clinical guidelines The decision-making process in the provision or withdrawal of artificial nutrition can be difficult. A clear understanding of the clinical aims of therapy and an appreciation of the ethical issues facilitates resolution of dilemmas. These have recently been given extensive media coverage with ‘high profile’ cases such as the need to feed or otherwise the late Pope John Paul II and the tragic case of Terri Schiavo in the US.1 Application of the principles of autonomy, beneficence, non-maleficence and justice is one approach and is recommended; Figure 1 illustrates how this may be used to assist clinicians in the decision whether to feed. The patient should be encouraged to state his preferences throughout the process; if this is not possible, the views of relatives, friends and medical or legal representatives should be sought to determine his likely wishes. Members of the healthcare team or relatives may disagree about the patient’s best interests. This may reflect conflicts in religious, ethnic or other value systems, and these must be discussed openly before instigation or withdrawal of therapy. Although the views of relatives are important in ‘building a picture’ of the patient for the clinician, relatives have no right to overrule the decisions of a doctor. The doctor has the final say as to what is deemed futile and what is in the patient’s best interests. Clinicians must be seen to be transparently honest in their discussions with all concerned. They must not arbitrarily impose their own value systems or preferred biases in feeding modality in the absence of evidence, and they should not make recommendations for treatment or its withdrawal on the basis of resource considerations. When doubt about the validity of treatment persists, the patient’s preferences when fully informed, or his presumed preferences based on discussions with others, take precedence over healthcare systems or individual doctors’ opinions, providing this serves the patient’s best interests. • Is the patient eating normally? If the answer is yes, he must be encouraged to maintain an adequate intake; ideally, this should be monitored by the healthcare team. Formal assessment of intake is appropriate in cases of uncertainty. In these situations, there are no ethical dilemmas. • If the patient is not eating adequately, the next step is to involve him. Is he competent (Table 1)? If yes, the ‘pros and cons’ of feeding must be discussed, with a clear explanation of possible outcomes and morbidity. Patients have a right to refuse therapy, and respect for their wishes is paramount. Appropriate palliative care must be offered, with offers of oral hydration or nutrients. The patient should be able to change his mind at any point. If treatment is futile, the doctor has a responsibility to outline this. Basic care (i.e. food and water), adequate hydration and nursing care should never be withdrawn. • If the patient is deemed incompetent, it should be established whether he has made an advance directive (‘living will’)
Abstract Recent decades have seen dramatic improvements in our ability as a profession to care for patients with critical illness and chronic disease. One consequence of this is that patients now more often survive to a point where nutrition becomes a limiting factor in their care. In addition, we now have the skills and technology to maintain a patients’ nutritional status indefinitely. Taken together, these factors have significantly raised the profession’s awareness of the ethical dilemmas involved in the provision of artificial nutrition. This short article suggests one approach to these vexed questions.
Keywords artificial nutrition; ethics; nutrition; terminal illness
In normal adults, total starvation leads to death from malnutrition within 60–70 days. However, functional metabolic deficits become evident after only 10 days of semi-starvation in previously healthy individuals (less in those already compromised by disease), and psychological and mood disturbances may emerge after as little as 1 day without food. Nutritional support should be considered in all patients in whom oral intake is anticipated to be inadequate for 7–10 days or more. Modern technology enables such support to be given for indefinite periods in almost all clinical situations, but this has resource and ethical consequences. Most doctors face the dilemmas ‘to treat or not to treat’ and ‘to withdraw or continue’ on a daily basis, but the ethical concerns are greatest when the treatment is provision of food. Ethical codes of caring professions include not only minimum standards of behaviour but also ideals, and have been described as the ‘collective conscience’ of the profession. Contemporary medical ethics can be considered as based on four important principles – autonomy, non-maleficence, beneficence and justice. • Autonomy is the principle of self-determination and involves recognition of patient rights; in most democratic states, it is now the pre-eminent theme in law. • Non-maleficence is deliberate avoidance of harm. • Beneficence is the concept that the patient is provided with some form of benefit. • Justice is the fair and equitable provision of available medical resources to all.
John MacFie MD FRCS is a Consultant Surgeon at Scarborough Hospital, Scarborough, UK. Competing interests: none declared.
MEDICINE 34:12
548
© 2006 Published by Elsevier Ltd.
Nutrition and coexisting disease
Decision-making in artificial nutritional support Yes
Monitor
Uncertain
Involve dietitian/nutrition team
Is the patient eating normally? No No Is patient competent?
No Is there an advance directive?
Is there uncertainty over futility of treatment?
Yes
Yes
Yes
No
No Discuss benefits and burdens of treatment
Patient defers
No treatment
Is life-prolonging therapy indicated?
Patient agrees
Time-limited trial
No treatment
Yes
Artificial nutritional support a possibility
Figure 1
indicating his preference for treatment or non-treatment should he ever become incompetent to make that decision. This does not have to be a formal, witnessed, written document; contemporaneous records in, for example, his general practitioner’s notes may suffice. If an advance directive specifically refers to prolonging therapy, the patient’s wishes must be observed. Not to do so renders the attending doctor liable to a charge of assault. • In the absence of an advance directive, the decision must be made by a surrogate; in the UK and most of continental Europe, this is usually the patient’s medical attendant. The doctor must decide whether treatment is futile or confers benefit, and this requires a clear view of the aims of therapy. Does the patient fulfil any of the conditions for non-treatment (Table 2)? Would treatment not be in his best interests? Doctors are not obliged to instigate therapies that they believe will do no good. • Genuine uncertainty about the futility of treatment necessitates discussion with other members of the health-care team, possible second opinions and involvement of the relatives. Every
e ndeavour must be made to establish what the patient might have wanted, were he able to express a view. The overriding factor must be to do what is in his best interests. This entails providing care that provides a positive advantage to him, preferably agreed by him and not simply with the aim of achieving physiological goals. It is technically possible to maintain ‘life’ in patients in a persistent vegetative state, but this may not be in the best interests of the individual. Continuing uncertainty is a good reason for commencement of a time-limited trial of therapy. The aims and duration of such trials must be clearly recorded, and frank and open discussion with relatives and other carers is essential. It is well established in law and ethics that competent adults have the right to refuse any medical treatment, even if that refusal will result in their death. In the UK, most of continental Europe and the USA, there is no acceptance of the principle of ‘retro-active consent’, whereby a patient gives consent after
Conditions for non-treatment of incompetent patients • Irreversible closeness to death • Extensive neurological damage leading to permanent destruction of both self-awareness and intentional action • Little self-awareness accompanied by such severe motor disability that sustained independent and intentional action is impossible • Destruction of both long-term and short-term memory to such a degree that the individual no longer exists and no ‘other’ individual can evolve in his or her place • Patient has severely limited understanding of distressing and marginally effective life-saving treatment that will lead to a demonstrably awful life
Competence Competent patients should be able to • Understand a simple explanation of their condition, its prognosis and proposed treatment or non-treatment • Reason consistently about specific aims linked to their personal beliefs • Choose to act on the basis of such reasoning • Communicate the substance of and their reasons for that choice • Understand the practical consequences of their choice Table 1
MEDICINE 34:12
Table 2
549
© 2006 Published by Elsevier Ltd.
Nutrition and coexisting disease
being given a treatment that was initially refused. In Israel, however, patients’ rights law permits treatment of competent patients against their will, on the basis that there is reason to believe that they would change their mind after treatment. The rationale is that, at the time the patient refuses treatment, he is not of ‘sound mind’ as a consequence of starvation or other factors; following treatment, however, he becomes ‘rational’ and can provide retroactive consent. In most countries, force-feeding of a competent individual would constitute assault. There is an ethical dilemma in the management of confused, semiconscious or demented patients who remove or dislodge feeding tubes or lines. Use of restraint may be considered a violation of patient freedom, and thereby their autonomy. Clinicians must exercise judgement, compassion and common sense in such situations. In the UK, the Mental Health Act permits compulsory detention of patients with recognized mental disorders, including eating disorders such as anorexia nervosa. Under certain circumstances, the law permits use of artificial nutritional support against the will of these patients, on the basis that feeding is an integral part of their treatment. This might apply to other patients who are deemed incompetent. ◆
MEDICINE 34:12
Reference 1 Casarett D, Kapo J, Caplan A. Appropriate use of artificial nutrition and hydration–fundamental principles and recommendations. N Eng J Med 2005; 353: 2607–12. Further reading Lennard-Jones L E. Ethical and Legal Aspects of Clinical Hydration and Nutritional Support. A Report for the British Association of Parenteral and Enteral Nutrition. Maidenhead: BAPEN, 1999. MacFie J. Ethical and Legal Considerations in the Provision of Nutritional Support to the Perioperative Patient. Curr Opin Clin Nutr Metab Care 2000; 3: 23–9. Rosenthal E T. Artificial butrition and hydration: how to make decisions in a complicated and emotive area. Oncology Times 2006; March: 4–5. MacFie J. Ethics and Nutrition. In: Gibney M, Elia M, Ljungqvist O, Dowsett J, eds. Clinical nutrition (Nutrition Society Textbook series). Oxford: Blackwell Science, 2005. (These publications provide a full discussion and explanation of the terms ‘best interests’, ‘basic care’, ‘futility’, ‘autonomy’, ‘beneficence’, ‘maleficence’, ‘justice, and ‘time- limited trial’.)
550
© 2006 Published by Elsevier Ltd.
Ethics of artificial nutrition
Application of these principles provides a systematic and relatively objective means of approaching ethical dilemmas. Advocates stress that they should be seen, not as precise guides to inform doctors in every circumstance, but as a framework of values that are relevant to ethical debate.
John MacFie
Clinical guidelines The decision-making process in the provision or withdrawal of artificial nutrition can be difficult. A clear understanding of the clinical aims of therapy and an appreciation of the ethical issues facilitates resolution of dilemmas. These have recently been given extensive media coverage with ‘high profile’ cases such as the need to feed or otherwise the late Pope John Paul II and the tragic case of Terri Schiavo in the US.1 Application of the principles of autonomy, beneficence, non-maleficence and justice is one approach and is recommended; Figure 1 illustrates how this may be used to assist clinicians in the decision whether to feed. The patient should be encouraged to state his preferences throughout the process; if this is not possible, the views of relatives, friends and medical or legal representatives should be sought to determine his likely wishes. Members of the healthcare team or relatives may disagree about the patient’s best interests. This may reflect conflicts in religious, ethnic or other value systems, and these must be discussed openly before instigation or withdrawal of therapy. Although the views of relatives are important in ‘building a picture’ of the patient for the clinician, relatives have no right to overrule the decisions of a doctor. The doctor has the final say as to what is deemed futile and what is in the patient’s best interests. Clinicians must be seen to be transparently honest in their discussions with all concerned. They must not arbitrarily impose their own value systems or preferred biases in feeding modality in the absence of evidence, and they should not make recommendations for treatment or its withdrawal on the basis of resource considerations. When doubt about the validity of treatment persists, the patient’s preferences when fully informed, or his presumed preferences based on discussions with others, take precedence over healthcare systems or individual doctors’ opinions, providing this serves the patient’s best interests. • Is the patient eating normally? If the answer is yes, he must be encouraged to maintain an adequate intake; ideally, this should be monitored by the healthcare team. Formal assessment of intake is appropriate in cases of uncertainty. In these situations, there are no ethical dilemmas. • If the patient is not eating adequately, the next step is to involve him. Is he competent (Table 1)? If yes, the ‘pros and cons’ of feeding must be discussed, with a clear explanation of possible outcomes and morbidity. Patients have a right to refuse therapy, and respect for their wishes is paramount. Appropriate palliative care must be offered, with offers of oral hydration or nutrients. The patient should be able to change his mind at any point. If treatment is futile, the doctor has a responsibility to outline this. Basic care (i.e. food and water), adequate hydration and nursing care should never be withdrawn. • If the patient is deemed incompetent, it should be established whether he has made an advance directive (‘living will’)
Abstract Recent decades have seen dramatic improvements in our ability as a profession to care for patients with critical illness and chronic disease. One consequence of this is that patients now more often survive to a point where nutrition becomes a limiting factor in their care. In addition, we now have the skills and technology to maintain a patients’ nutritional status indefinitely. Taken together, these factors have significantly raised the profession’s awareness of the ethical dilemmas involved in the provision of artificial nutrition. This short article suggests one approach to these vexed questions.
Keywords artificial nutrition; ethics; nutrition; terminal illness
In normal adults, total starvation leads to death from malnutrition within 60–70 days. However, functional metabolic deficits become evident after only 10 days of semi-starvation in previously healthy individuals (less in those already compromised by disease), and psychological and mood disturbances may emerge after as little as 1 day without food. Nutritional support should be considered in all patients in whom oral intake is anticipated to be inadequate for 7–10 days or more. Modern technology enables such support to be given for indefinite periods in almost all clinical situations, but this has resource and ethical consequences. Most doctors face the dilemmas ‘to treat or not to treat’ and ‘to withdraw or continue’ on a daily basis, but the ethical concerns are greatest when the treatment is provision of food. Ethical codes of caring professions include not only minimum standards of behaviour but also ideals, and have been described as the ‘collective conscience’ of the profession. Contemporary medical ethics can be considered as based on four important principles – autonomy, non-maleficence, beneficence and justice. • Autonomy is the principle of self-determination and involves recognition of patient rights; in most democratic states, it is now the pre-eminent theme in law. • Non-maleficence is deliberate avoidance of harm. • Beneficence is the concept that the patient is provided with some form of benefit. • Justice is the fair and equitable provision of available medical resources to all.
John MacFie MD FRCS is a Consultant Surgeon at Scarborough Hospital, Scarborough, UK. Competing interests: none declared.
MEDICINE 34:12
548
© 2006 Published by Elsevier Ltd.
Nutrition and coexisting disease
Decision-making in artificial nutritional support Yes
Monitor
Uncertain
Involve dietitian/nutrition team
Is the patient eating normally? No No Is patient competent?
No Is there an advance directive?
Is there uncertainty over futility of treatment?
Yes
Yes
Yes
No
No Discuss benefits and burdens of treatment
Patient defers
No treatment
Is life-prolonging therapy indicated?
Patient agrees
Time-limited trial
No treatment
Yes
Artificial nutritional support a possibility
Figure 1
indicating his preference for treatment or non-treatment should he ever become incompetent to make that decision. This does not have to be a formal, witnessed, written document; contemporaneous records in, for example, his general practitioner’s notes may suffice. If an advance directive specifically refers to prolonging therapy, the patient’s wishes must be observed. Not to do so renders the attending doctor liable to a charge of assault. • In the absence of an advance directive, the decision must be made by a surrogate; in the UK and most of continental Europe, this is usually the patient’s medical attendant. The doctor must decide whether treatment is futile or confers benefit, and this requires a clear view of the aims of therapy. Does the patient fulfil any of the conditions for non-treatment (Table 2)? Would treatment not be in his best interests? Doctors are not obliged to instigate therapies that they believe will do no good. • Genuine uncertainty about the futility of treatment necessitates discussion with other members of the health-care team, possible second opinions and involvement of the relatives. Every
e ndeavour must be made to establish what the patient might have wanted, were he able to express a view. The overriding factor must be to do what is in his best interests. This entails providing care that provides a positive advantage to him, preferably agreed by him and not simply with the aim of achieving physiological goals. It is technically possible to maintain ‘life’ in patients in a persistent vegetative state, but this may not be in the best interests of the individual. Continuing uncertainty is a good reason for commencement of a time-limited trial of therapy. The aims and duration of such trials must be clearly recorded, and frank and open discussion with relatives and other carers is essential. It is well established in law and ethics that competent adults have the right to refuse any medical treatment, even if that refusal will result in their death. In the UK, most of continental Europe and the USA, there is no acceptance of the principle of ‘retro-active consent’, whereby a patient gives consent after
Conditions for non-treatment of incompetent patients • Irreversible closeness to death • Extensive neurological damage leading to permanent destruction of both self-awareness and intentional action • Little self-awareness accompanied by such severe motor disability that sustained independent and intentional action is impossible • Destruction of both long-term and short-term memory to such a degree that the individual no longer exists and no ‘other’ individual can evolve in his or her place • Patient has severely limited understanding of distressing and marginally effective life-saving treatment that will lead to a demonstrably awful life
Competence Competent patients should be able to • Understand a simple explanation of their condition, its prognosis and proposed treatment or non-treatment • Reason consistently about specific aims linked to their personal beliefs • Choose to act on the basis of such reasoning • Communicate the substance of and their reasons for that choice • Understand the practical consequences of their choice Table 1
MEDICINE 34:12
Table 2
549
© 2006 Published by Elsevier Ltd.
Nutrition and coexisting disease
being given a treatment that was initially refused. In Israel, however, patients’ rights law permits treatment of competent patients against their will, on the basis that there is reason to believe that they would change their mind after treatment. The rationale is that, at the time the patient refuses treatment, he is not of ‘sound mind’ as a consequence of starvation or other factors; following treatment, however, he becomes ‘rational’ and can provide retroactive consent. In most countries, force-feeding of a competent individual would constitute assault. There is an ethical dilemma in the management of confused, semiconscious or demented patients who remove or dislodge feeding tubes or lines. Use of restraint may be considered a violation of patient freedom, and thereby their autonomy. Clinicians must exercise judgement, compassion and common sense in such situations. In the UK, the Mental Health Act permits compulsory detention of patients with recognized mental disorders, including eating disorders such as anorexia nervosa. Under certain circumstances, the law permits use of artificial nutritional support against the will of these patients, on the basis that feeding is an integral part of their treatment. This might apply to other patients who are deemed incompetent. ◆
MEDICINE 34:12
Reference 1 Casarett D, Kapo J, Caplan A. Appropriate use of artificial nutrition and hydration–fundamental principles and recommendations. N Eng J Med 2005; 353: 2607–12. Further reading Lennard-Jones L E. Ethical and Legal Aspects of Clinical Hydration and Nutritional Support. A Report for the British Association of Parenteral and Enteral Nutrition. Maidenhead: BAPEN, 1999. MacFie J. Ethical and Legal Considerations in the Provision of Nutritional Support to the Perioperative Patient. Curr Opin Clin Nutr Metab Care 2000; 3: 23–9. Rosenthal E T. Artificial butrition and hydration: how to make decisions in a complicated and emotive area. Oncology Times 2006; March: 4–5. MacFie J. Ethics and Nutrition. In: Gibney M, Elia M, Ljungqvist O, Dowsett J, eds. Clinical nutrition (Nutrition Society Textbook series). Oxford: Blackwell Science, 2005. (These publications provide a full discussion and explanation of the terms ‘best interests’, ‘basic care’, ‘futility’, ‘autonomy’, ‘beneficence’, ‘maleficence’, ‘justice, and ‘time- limited trial’.)
550
© 2006 Published by Elsevier Ltd.