- Email: [email protected]
Ethical issues in resuscitation and intensive care medicine
ETHICS
Ethical issues in resuscitation and intensive care medicine
Learning objectives After reading this article, you should be able to: C understand the concepts of decision-making capacity, advanced directives and Lasting Power of Attorney, as they apply to intensive care patients C use four principles of biomedical ethics to guide your decisionmaking in intensive care medicine and understand the limitations of these principles C describe an approach to rationing intensive care resources C appreciate the ethical dilemmas posed by the referral of very elderly patients to the intensive care unit
Lucy Modra Andrew Hilton
Abstract Intensive care medicine is richly endowed with ethical dilemmas, including decision-making on behalf of incompetent patients, withdrawal of treatment decisions and rationing of limited resources. Intensive care physicians need to be attuned to these ethical aspects of their practice. Beauchamp and Childress’ four principles of medical ethics provide a useful approach to ethical problems. However, the principles provide a framework rather than an ‘answer’. The referral of elderly patients to the intensive care unit illustrates some common ethical dilemmas in intensive care medicine.
not offer a weighting to any of the principles. Autonomy has enjoyed a privileged position amongst the principles in recent decades. However, this is not beyond question, particularly in the intensive care setting where many patients have substantially diminished autonomy. Moreover, the principles must be considered within both the medical and social context of the decision.
Keywords Advanced directives; autonomy; capacity; end of life care; elderly; futility; lasting power of attorney; rationing
Decision-making in the ICU
Royal College of Anaesthetists CPD Matrix: 1F05, 1F01, 1E03, 2C06.
One of the unique ethical challenges of intensive care is that most ICU patients are unable to make decisions regarding their own care. Their autonomy, or ability to self-govern, is diminished by factors such as illness, sedation and communication impairments. Decisions made on behalf of an ICU patient are likely to impact significantly on the rest of their life. Thus, ICU patients are a vulnerable population, as defined by their inability to protect their own interests.
Ethical problems are prominent in intensive care medicine because the stakes are high and the gains uncertain. The intensive care unit (ICU) can provide potentially life-saving treatments to critically ill patients, some of whom will not survive. Intensive care treatments can be painful, undignified or distressing to patients and stressful for families. Crucially, most ICU patients are unable to participate in the decision-making regarding their own care. The intensive care physician therefore needs an approach to determining ethically acceptable treatments for individual patients, whilst fairly allocating expensive and limited critical care resources between all potential patients. Biomedical ethics and the law provide useful, but distinct, frameworks to guide the intensive care physician in these matters. In this article we outline important ethical issues in intensive care medicine, primarily using the principlist approach of Beauchamp and Childress (Box 1). Their framework of four ethical principles can be used to identify relevant ethical considerations within a scenario. In most ethically challenging clinical situations there is a tension between two or more of these principles. The principlist framework is not prescriptive: it does
Competence and capacity Diminished autonomy is described in terms of competence or capacity to make decisions. Strictly speaking, competence is a legal determination and decision-making capacity a medical determination. However, the two terms are often used interchangeably.1 Both terms refer to a person’s ability to understand information relevant to a particular decision, weigh options and communicate their choice. Competence is decision or task specific. For example, a person may not be competent to accept or refuse risky but potentially life-saving surgery, whilst still being competent to request an extra blanket. A competent adult may make autonomous choices that appear to go against their best interests, including the refusal of medical treatment. However, a patient’s level of decision-making capacity should be proportionate to the gravity of the decision at hand.2 A patient who refuses potentially life-saving surgery should be able to demonstrate that they understand the potential implications of this decision, including their own death. In contrast, one would require little evidence that a patient requesting an extra blanket understood the implications of their request. Competence is a dynamic state, just like critical illness. Patients who were not competent to make decisions early in their ICU admission may regain competence as their condition
Lucy Modra MBBS(Hons) BMedSciGradDipArts(Phil) is an Intensive Care Registrar at Austin Hospital, Australia. Conflicts of interest: none declared. Andrew Hilton MBBS FCICM FANZCA Senior Intensivist, Austin Hospital, Australia. Conflicts of interest: none declared.
ANAESTHESIA AND INTENSIVE CARE MEDICINE 14:1
8
Crown Copyright Ó 2013 Published by Elsevier Ltd. All rights reserved.
ETHICS
wishes. The family can effectively advocate for their relative, and also represent the patient’s personal and cultural values even if they are not legally-appointed surrogates.4
Ethical principles C
C C C
Autonomy: self-governance; respecting and supporting autonomous decisions Beneficence: promoting benefit Non-maleficence: avoiding harm Justice: fairly distributing benefits, risks and costs
Withdrawal of care, futility and end of life care Patients and their families hope that ICU treatment will allow them to return to a level of physical, mental and social functioning that is at least minimally acceptable to them. When these goals cannot be met, it is appropriate to consider withdrawing treatment and allowing the patient to die. Withdrawing treatment is a difficult decision because prognostication is uncertain and the patient usually cannot be consulted. Legally, doctors are not obliged to provide or persist with futile treatment. However, ‘futile’ is an empty term unless used with reference to an explicit goal. For example, mechanical ventilation may not be futile with respect to a physiological goal of maintaining a normal carbon dioxide level. However, it may be futile in the face of a patient-oriented goal of recovering independent function. ‘Futile’ treatments are sometimes ‘futile’ with respect to immediately prolonging life; more often they are ‘futile’ with respect to returning the patient to a quality of life acceptable to them.5 Most ICU deaths now occur following withdrawal of treatment, rather than a catastrophic deterioration. Communicating with a patient’s family about withdrawal of treatment often requires repeated sensitive discussions over several days or longer. Intensive care physicians should be highly competent at providing end of life care, including symptom management and support for the patient’s family.
Box 1
improves. Appropriate use of sedation breaks and tools such as a tracheostomy speaking valve may be used to ascertain patient preferences in some situations.
Proxy decision-making and advanced directives When a patient cannot participate in decision-making, the intensive care physician can promote their autonomy by seeking evidence of what the patient would choose in their current situation. The Mental Capacity Act (2005 e England and Wales) allows competent adults to pre-emptively record their healthcare wishes by appointing a Lasting Power of Attorney (LPA) or recording an Advanced Directive.a This is an important development as many people lose decision-making capacity before their death, but have clear wishes about their future healthcare and resuscitation. There is a hierarchy of authority within the Mental Capacity Act: the wishes of a competent patient overrule the decisions of a Lasting Power of Attorney, which overrule advanced directives. A Lasting Power of Attorney is a legally recognized surrogate or proxy decision maker. Surrogate decision-makers are obliged to make decisions based upon their understanding of the patient’s values, rather than their own values. Under the Mental Capacity Act (2005), a legally valid advanced refusal of life-saving treatment must be made in writing, signed and witnessed, and must specifically state that the person understands that refusing such treatment will likely result in their death. Advanced directives are necessarily general in scope, and it may be unclear whether an advanced directive applies to the patient’s current situation. For this reason, advanced directives that specify acceptable goals of treatment may be more useful than advanced directives that refuse or request specific therapies.3 Organ donor registration is one important type of advanced directive.
Resource allocation Intensive care consumes a significant proportion of the healthcare budget. Rationing refers to the allocation of necessarily limited resources between potential patients. Intensive care physicians are frequently involved in bedside rationing decisions; for example fairly allocating ICU beds between potential patients, or even allocating their own time and attention between patients.6 There is a tension between promoting beneficence for individual patients and promoting justice, or the fair division of healthcare resources between patients. A utilitarian approach to rationing attempts to maximize the overall health benefits achieved from the point of view of all potential patients. Using a utilitarian approach, the decision to offer or refuse a patient admission to the ICU should be based on their need for, and potential to have an enduring benefit from, ICU care. These admission decisions are made with reference to the available resources e including beds and clinical staff. In situations of scarcity the clinician must estimate patients’ relative need for, and relative potential to benefit from ICU care. Such estimation is inexact and the clinician’s own biases or values may colour their decision-making. Some patients are inevitably excluded from the ICU because their needs are judged to be relatively less than other potential patients at the time. Communicating this decision to the patient and their family is extremely difficult. Luce and White emphasize that it is deceptive to claim that a patient has nothing to gain from ICU admission (‘not sick enough’ or ‘too sick’) when in fact they have been denied ICU admission due to a shortage of beds.7
Best wishes determinations In the absence of evidence of the patient’s likely wishes, the clinician determines treatment based on the patient’s best interests. This paternalistic model of decision-making prioritizes beneficence and non-maleficence ahead of patient autonomy. Despite its frequent pejorative use, paternalism is not a normative term. Paternalism can be an acceptable model of decisionmaking, especially in emergency situations. In determining the patients’ best interests, the clinician should consider the family’s
a
In Scotland, the Adults with Incapacity (Scotland) Act 2000 applies.
ANAESTHESIA AND INTENSIVE CARE MEDICINE 14:1
9
Crown Copyright Ó 2013 Published by Elsevier Ltd. All rights reserved.
ETHICS
However, openly disclosing rationing decisions to patients and families may lead to significant anger or distress, particularly if the patient dies after being denied access to the ICU. Given the increasing demand for intensive care beds, it is important to ensure that people who do not want ICU admission have the opportunity to formally record their wishes prior to critical illness. Advanced care planning encompasses a facilitated discussion between a patient and their family about end of life care, with the opportunity to appoint a surrogate or make an advanced directive. This important intervention not only
improves patient and family satisfaction with end of life care, but also decreases the patient’s likelihood of dying in ICU.4 The increasing ethical complexity of intensive care medicine is well illustrated by considering the ethics of admitting elderly patients to the intensive care unit (Box 2). A
REFERENCES 1 British Medical Association. Advance decisions and proxy decisionmaking in medical treatment and research: guidance from the BMA’s Medical Ethics Department. London. Also available at: http://bma.org. uk/practical-support-at-work/ethics/mental-capacity; 2007 (accessed 12 Aug 2012). p.1. 2 Buchanan A. Mental capacity, legal competence and consent to treatment. J R Soc Med 2004; 97: 415. 3 Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised control trial. Br Med J 2010; 340: c1345. 4 Curtis JR, Vincent J-L. Ethics and end-of-life care for adults in the intensive care unit. Lancet 2010; 375: 1349. 5 Gavrin JR. Ethical considerations at the end of life in the intensive care unit. Crit Care Med 2007; 35(suppl 2): S87. 6 Truog RD, Brock DW, Cook DJ, et al. Rationing in the intensive care unit. Crit Care Med 2006; 34: 959. 7 Luce JM, White DB. A history of ethics and law in the intensive care unit. Crit Care Clin 2009; 25: 231. 8 Rosenthal G, Kaboli P, Barnett M, Sirio C. Age and the risk of inhospital death: insights from a multihospital study of intensive care patients. J Am Geriatr Soc 2002; 50: 1205. 9 Boumendil A, Somme D, Garrouste-Orgeas M, Guidet B. Should elderly patients be admitted to the intensive care unit? Intensive Care Med 2007; 33: 1252e62.
Admission of the very elderly to intensive care C
C
C
C
C
C
The increasing number of very elderly (age 85þ) admitted to the intensive care unit (ICU) highlights many of the common ethical dilemmas in intensive care medicine Very elderly patients may not have had decision-making capacity for some time prior to ICU referral. In the absence of a clear advanced directive it can be difficult to determine what the patient would want Prognostication is more difficult in the elderly:physiological scoring systems are less discriminatory than in younger adults8 Age itself is a relatively poor prognostic marker. Severe functional limitation and pre-existing fatal disease are more useful prognostic markers than age. Nonetheless, patients are excluded from the ICU due to age9 Perceived quality of life changes with age: younger adults may fail to appreciate an elderly person’s enjoyment in life9 Some argue that patients should be excluded from ICU based on age as they have less to gain from admission than younger patients. This is extremely controversial
FURTHER READING Beauchamp TL, Childress JF. Principles of biomedical ethics. 6th edn. Oxford: Oxford University Press, 2009.
Box 2
ANAESTHESIA AND INTENSIVE CARE MEDICINE 14:1
10
Crown Copyright Ó 2013 Published by Elsevier Ltd. All rights reserved.
Ethical issues in resuscitation and intensive care medicine
Learning objectives After reading this article, you should be able to: C understand the concepts of decision-making capacity, advanced directives and Lasting Power of Attorney, as they apply to intensive care patients C use four principles of biomedical ethics to guide your decisionmaking in intensive care medicine and understand the limitations of these principles C describe an approach to rationing intensive care resources C appreciate the ethical dilemmas posed by the referral of very elderly patients to the intensive care unit
Lucy Modra Andrew Hilton
Abstract Intensive care medicine is richly endowed with ethical dilemmas, including decision-making on behalf of incompetent patients, withdrawal of treatment decisions and rationing of limited resources. Intensive care physicians need to be attuned to these ethical aspects of their practice. Beauchamp and Childress’ four principles of medical ethics provide a useful approach to ethical problems. However, the principles provide a framework rather than an ‘answer’. The referral of elderly patients to the intensive care unit illustrates some common ethical dilemmas in intensive care medicine.
not offer a weighting to any of the principles. Autonomy has enjoyed a privileged position amongst the principles in recent decades. However, this is not beyond question, particularly in the intensive care setting where many patients have substantially diminished autonomy. Moreover, the principles must be considered within both the medical and social context of the decision.
Keywords Advanced directives; autonomy; capacity; end of life care; elderly; futility; lasting power of attorney; rationing
Decision-making in the ICU
Royal College of Anaesthetists CPD Matrix: 1F05, 1F01, 1E03, 2C06.
One of the unique ethical challenges of intensive care is that most ICU patients are unable to make decisions regarding their own care. Their autonomy, or ability to self-govern, is diminished by factors such as illness, sedation and communication impairments. Decisions made on behalf of an ICU patient are likely to impact significantly on the rest of their life. Thus, ICU patients are a vulnerable population, as defined by their inability to protect their own interests.
Ethical problems are prominent in intensive care medicine because the stakes are high and the gains uncertain. The intensive care unit (ICU) can provide potentially life-saving treatments to critically ill patients, some of whom will not survive. Intensive care treatments can be painful, undignified or distressing to patients and stressful for families. Crucially, most ICU patients are unable to participate in the decision-making regarding their own care. The intensive care physician therefore needs an approach to determining ethically acceptable treatments for individual patients, whilst fairly allocating expensive and limited critical care resources between all potential patients. Biomedical ethics and the law provide useful, but distinct, frameworks to guide the intensive care physician in these matters. In this article we outline important ethical issues in intensive care medicine, primarily using the principlist approach of Beauchamp and Childress (Box 1). Their framework of four ethical principles can be used to identify relevant ethical considerations within a scenario. In most ethically challenging clinical situations there is a tension between two or more of these principles. The principlist framework is not prescriptive: it does
Competence and capacity Diminished autonomy is described in terms of competence or capacity to make decisions. Strictly speaking, competence is a legal determination and decision-making capacity a medical determination. However, the two terms are often used interchangeably.1 Both terms refer to a person’s ability to understand information relevant to a particular decision, weigh options and communicate their choice. Competence is decision or task specific. For example, a person may not be competent to accept or refuse risky but potentially life-saving surgery, whilst still being competent to request an extra blanket. A competent adult may make autonomous choices that appear to go against their best interests, including the refusal of medical treatment. However, a patient’s level of decision-making capacity should be proportionate to the gravity of the decision at hand.2 A patient who refuses potentially life-saving surgery should be able to demonstrate that they understand the potential implications of this decision, including their own death. In contrast, one would require little evidence that a patient requesting an extra blanket understood the implications of their request. Competence is a dynamic state, just like critical illness. Patients who were not competent to make decisions early in their ICU admission may regain competence as their condition
Lucy Modra MBBS(Hons) BMedSciGradDipArts(Phil) is an Intensive Care Registrar at Austin Hospital, Australia. Conflicts of interest: none declared. Andrew Hilton MBBS FCICM FANZCA Senior Intensivist, Austin Hospital, Australia. Conflicts of interest: none declared.
ANAESTHESIA AND INTENSIVE CARE MEDICINE 14:1
8
Crown Copyright Ó 2013 Published by Elsevier Ltd. All rights reserved.
ETHICS
wishes. The family can effectively advocate for their relative, and also represent the patient’s personal and cultural values even if they are not legally-appointed surrogates.4
Ethical principles C
C C C
Autonomy: self-governance; respecting and supporting autonomous decisions Beneficence: promoting benefit Non-maleficence: avoiding harm Justice: fairly distributing benefits, risks and costs
Withdrawal of care, futility and end of life care Patients and their families hope that ICU treatment will allow them to return to a level of physical, mental and social functioning that is at least minimally acceptable to them. When these goals cannot be met, it is appropriate to consider withdrawing treatment and allowing the patient to die. Withdrawing treatment is a difficult decision because prognostication is uncertain and the patient usually cannot be consulted. Legally, doctors are not obliged to provide or persist with futile treatment. However, ‘futile’ is an empty term unless used with reference to an explicit goal. For example, mechanical ventilation may not be futile with respect to a physiological goal of maintaining a normal carbon dioxide level. However, it may be futile in the face of a patient-oriented goal of recovering independent function. ‘Futile’ treatments are sometimes ‘futile’ with respect to immediately prolonging life; more often they are ‘futile’ with respect to returning the patient to a quality of life acceptable to them.5 Most ICU deaths now occur following withdrawal of treatment, rather than a catastrophic deterioration. Communicating with a patient’s family about withdrawal of treatment often requires repeated sensitive discussions over several days or longer. Intensive care physicians should be highly competent at providing end of life care, including symptom management and support for the patient’s family.
Box 1
improves. Appropriate use of sedation breaks and tools such as a tracheostomy speaking valve may be used to ascertain patient preferences in some situations.
Proxy decision-making and advanced directives When a patient cannot participate in decision-making, the intensive care physician can promote their autonomy by seeking evidence of what the patient would choose in their current situation. The Mental Capacity Act (2005 e England and Wales) allows competent adults to pre-emptively record their healthcare wishes by appointing a Lasting Power of Attorney (LPA) or recording an Advanced Directive.a This is an important development as many people lose decision-making capacity before their death, but have clear wishes about their future healthcare and resuscitation. There is a hierarchy of authority within the Mental Capacity Act: the wishes of a competent patient overrule the decisions of a Lasting Power of Attorney, which overrule advanced directives. A Lasting Power of Attorney is a legally recognized surrogate or proxy decision maker. Surrogate decision-makers are obliged to make decisions based upon their understanding of the patient’s values, rather than their own values. Under the Mental Capacity Act (2005), a legally valid advanced refusal of life-saving treatment must be made in writing, signed and witnessed, and must specifically state that the person understands that refusing such treatment will likely result in their death. Advanced directives are necessarily general in scope, and it may be unclear whether an advanced directive applies to the patient’s current situation. For this reason, advanced directives that specify acceptable goals of treatment may be more useful than advanced directives that refuse or request specific therapies.3 Organ donor registration is one important type of advanced directive.
Resource allocation Intensive care consumes a significant proportion of the healthcare budget. Rationing refers to the allocation of necessarily limited resources between potential patients. Intensive care physicians are frequently involved in bedside rationing decisions; for example fairly allocating ICU beds between potential patients, or even allocating their own time and attention between patients.6 There is a tension between promoting beneficence for individual patients and promoting justice, or the fair division of healthcare resources between patients. A utilitarian approach to rationing attempts to maximize the overall health benefits achieved from the point of view of all potential patients. Using a utilitarian approach, the decision to offer or refuse a patient admission to the ICU should be based on their need for, and potential to have an enduring benefit from, ICU care. These admission decisions are made with reference to the available resources e including beds and clinical staff. In situations of scarcity the clinician must estimate patients’ relative need for, and relative potential to benefit from ICU care. Such estimation is inexact and the clinician’s own biases or values may colour their decision-making. Some patients are inevitably excluded from the ICU because their needs are judged to be relatively less than other potential patients at the time. Communicating this decision to the patient and their family is extremely difficult. Luce and White emphasize that it is deceptive to claim that a patient has nothing to gain from ICU admission (‘not sick enough’ or ‘too sick’) when in fact they have been denied ICU admission due to a shortage of beds.7
Best wishes determinations In the absence of evidence of the patient’s likely wishes, the clinician determines treatment based on the patient’s best interests. This paternalistic model of decision-making prioritizes beneficence and non-maleficence ahead of patient autonomy. Despite its frequent pejorative use, paternalism is not a normative term. Paternalism can be an acceptable model of decisionmaking, especially in emergency situations. In determining the patients’ best interests, the clinician should consider the family’s
a
In Scotland, the Adults with Incapacity (Scotland) Act 2000 applies.
ANAESTHESIA AND INTENSIVE CARE MEDICINE 14:1
9
Crown Copyright Ó 2013 Published by Elsevier Ltd. All rights reserved.
ETHICS
However, openly disclosing rationing decisions to patients and families may lead to significant anger or distress, particularly if the patient dies after being denied access to the ICU. Given the increasing demand for intensive care beds, it is important to ensure that people who do not want ICU admission have the opportunity to formally record their wishes prior to critical illness. Advanced care planning encompasses a facilitated discussion between a patient and their family about end of life care, with the opportunity to appoint a surrogate or make an advanced directive. This important intervention not only
improves patient and family satisfaction with end of life care, but also decreases the patient’s likelihood of dying in ICU.4 The increasing ethical complexity of intensive care medicine is well illustrated by considering the ethics of admitting elderly patients to the intensive care unit (Box 2). A
REFERENCES 1 British Medical Association. Advance decisions and proxy decisionmaking in medical treatment and research: guidance from the BMA’s Medical Ethics Department. London. Also available at: http://bma.org. uk/practical-support-at-work/ethics/mental-capacity; 2007 (accessed 12 Aug 2012). p.1. 2 Buchanan A. Mental capacity, legal competence and consent to treatment. J R Soc Med 2004; 97: 415. 3 Detering KM, Hancock AD, Reade MC, Silvester W. The impact of advance care planning on end of life care in elderly patients: randomised control trial. Br Med J 2010; 340: c1345. 4 Curtis JR, Vincent J-L. Ethics and end-of-life care for adults in the intensive care unit. Lancet 2010; 375: 1349. 5 Gavrin JR. Ethical considerations at the end of life in the intensive care unit. Crit Care Med 2007; 35(suppl 2): S87. 6 Truog RD, Brock DW, Cook DJ, et al. Rationing in the intensive care unit. Crit Care Med 2006; 34: 959. 7 Luce JM, White DB. A history of ethics and law in the intensive care unit. Crit Care Clin 2009; 25: 231. 8 Rosenthal G, Kaboli P, Barnett M, Sirio C. Age and the risk of inhospital death: insights from a multihospital study of intensive care patients. J Am Geriatr Soc 2002; 50: 1205. 9 Boumendil A, Somme D, Garrouste-Orgeas M, Guidet B. Should elderly patients be admitted to the intensive care unit? Intensive Care Med 2007; 33: 1252e62.
Admission of the very elderly to intensive care C
C
C
C
C
C
The increasing number of very elderly (age 85þ) admitted to the intensive care unit (ICU) highlights many of the common ethical dilemmas in intensive care medicine Very elderly patients may not have had decision-making capacity for some time prior to ICU referral. In the absence of a clear advanced directive it can be difficult to determine what the patient would want Prognostication is more difficult in the elderly:physiological scoring systems are less discriminatory than in younger adults8 Age itself is a relatively poor prognostic marker. Severe functional limitation and pre-existing fatal disease are more useful prognostic markers than age. Nonetheless, patients are excluded from the ICU due to age9 Perceived quality of life changes with age: younger adults may fail to appreciate an elderly person’s enjoyment in life9 Some argue that patients should be excluded from ICU based on age as they have less to gain from admission than younger patients. This is extremely controversial
FURTHER READING Beauchamp TL, Childress JF. Principles of biomedical ethics. 6th edn. Oxford: Oxford University Press, 2009.
Box 2
ANAESTHESIA AND INTENSIVE CARE MEDICINE 14:1
10
Crown Copyright Ó 2013 Published by Elsevier Ltd. All rights reserved.