Ethics in intensive care

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Chapter 7 Ethics in intensive care

Raymond F. Raper, Malcolm McD. Fisher

DEFINITION

Ethics is the study of how one ought to behave. In contrast, the law defines how one must behave to avoid punishment. Ethics is concerned with differentiating right from wrong behaviour. For most people, a sense of ethics is innate. Medical ethics particularly relates to the relationships between health care practitioners and patients and is not limited to doctors even if it is particularly applicable to doctors. Ethical conflict almost always involves a clash of values and appropriate resolution depends on recognition of the conflicting interests and values.

ETHICAL FRAMEWORK

Medical ethics are usually discussed in the context of principles. These principles inform ethical behaviour and can be summarised as:

1 Autonomy: the principle of individual self-determination in respect of medical care.
2 Beneficence: the principle of ‘doing good’, an obligation always to act in the best interests of patients with respect to saving lives, curing illness and alleviating pain and suffering.
3 Non-maleficence: the principle of doing no harm.
4 Fidelity: faithfulness to duties and obligations, a principle underlying confidentiality, telling the truth, keeping up with medical knowledge (i.e. continuing professional development) and not neglecting patient care.
5 Social justice: the principle of equitable access of all citizens to medical care according to medical need.
6 Utility: the principle of doing most good for the most number of people; that is, achieving maximum benefits for society without wasting health resources.

Utility is a consequentialist concept, where the right or wrong of an action is determined by the outcome rather than by an a priori principle. The ‘correct’ action may thus vary with the particular circumstances. This is sometimes seen as an entirely different framework from the rights or principles-based system. The utility principle is more applicable to systems development in medical practice and may create conflict with individual patient responsibility. It is important that intensivists participate in the public debate that determines how much of society’s goods are to be allocated to medicine and how much of the health budget is to be allocated to intensive care without, at the same time, surrendering responsibility for the interests of individual patients. Moving between these public and private spheres of functioning can be challenging but is essential to good medical practice.

Ethical conflict is most often encountered where there is a clash of values. Rationing, for instance, involves a clash between the values of individual rights and collective rights. Euthanasia usually involves a clash between the values of sanctity of life and autonomy. Resolution of ethical conflict depends on recognition of the values that are in dispute and of the principles that are operative. Absolutist terms such as ‘futility’ tend to mask the values-in-clash and are thus unhelpful in resolution of ethical conflict. Consideration of the various interests involved is also helpful in foregrounding the real issues behind an ethical conflict.

ICU ETHICAL PROBLEMS

END-OF-LIFE MANAGEMENT

During its relatively brief history, intensive care has seen a dramatic increase in both capacity and capability. Practice has become codified and at least partly standardised and intensive care is more generally accessible. Greater emphasis on individual rights has seen an increased demand for medical resources in general and this has flowed on to intensive care. The great challenge for intensive care lies in the reality that prolonged life support is often quite easily achieved without there being either inevitable recovery or intractable demise. Of the sickest patients in the intensive care unit (ICU), only a proportion ultimately recovers and can be returned to a reasonable quality of life. Even this would not be a problem if it were possible to predict survival with any degree of certainty and a great deal of effort has been expended in an attempt to achieve this. Unfortunately, this has met with only limited success and consideration of the appropriateness of ongoing intensive care is necessarily conducted against a background of prognostic uncertainty.1

In consequence of this, death in ICU usually involves some limitation or withholding of life-sustaining treatment.2,3 This has now been well documented in many studies from around the world and the driving factors are now reasonably well understood.2–9 The ethical principles underpinning this practice are those described above. Intensive care is inevitably burdensome and requires a commensurate benefit to conform to beneficence and non-maleficence. While life itself has a value, this is considerably offset if it is brief, painful and non-interactive. As death becomes increasingly imminent, its deferment at any cost becomes less appropriate. Considerations of justice should rarely intrude at the bedside. However, prolongation of life by artificial means in a patient with little or no chance of survival may challenge the rights of survivable patients to limited intensive care resources.10 Where resources are publicly owned, offering to one patient treatment that cannot be made available to all patients in similar circumstances is fundamentally unethical. The collective has the ethical right to regulate access to even beneficial therapy provided it does so in a non-discriminatory fashion. The intensive care specialist does not have a right unilaterally to apply or withhold resources against the will of the collective. Unfortunately, the will of the collective is rarely known.

End-of-life management in the intensive care setting has been subjected to a considerable research endeavour over the past several years.2,4,11–13 Insights that can be gleaned from published studies include:

• Patients not infrequently die in some discomfort in ICU receiving unwanted therapy.
• Considerable dissatisfaction has been reported by both patients and families with management at the end of life.
• Patient wishes with respect to end-of-life treatment are commonly unknown.
• Patients and families may be quite ignorant of the nature and prognosis of end-of-life initiatives such as cardiopulmonary resuscitation.14
• Active interventions including obligatory, outside consultations have not been particularly effective in improving the quality of end-of-life management.
• There is a good deal of practice variability across countries and communities with respect to attitudes to death, dying and the withholding and withdrawing of active treatment.2,8
• The reported variability in practice relates to attitudes of doctors and nurses, decision-making processes and to actual practices once a treatment-limiting decision has been made.
• Although some form of treatment limitation is common, withdrawal of treatment is not practised and is even illegal in some communities while active foreshortening and active euthanasia are reported in others.
• There remains some confusion concerning the distinction between active foreshortening of life and administration of drugs that both relieve unwanted symptoms and shorten the dying process. The nature and doses of agents used actively to shorten life are not necessarily different from those used to relieve symptoms without the intention of accelerating death and the time to death may also not be affected.2
• Most patients and families report a preference for some form of collaboration in end-of-life decision-making.15–17

PRACTICAL CONSIDERATIONS

• Decisions to limit treatment in ICU depend on a careful consideration of the burdens and benefits of treatment.
• Prognostication in ICU practice is imperfect so that decision-making is based on probability rather than certainty.
• Decision-making is usually an evolving process, commonly involving several discussions of therapeutic possibilities, quality of life and patient preferences.9,11
• Competent patients should always be involved in discussions and inclusion of family members should be encouraged and fostered.
• Given the common desire for collaborative decision-making, seeking patient preferences and consensus in a proposed management plan is more appropriate than either surrendering decision-making responsibility to patients or surrogates or systematically excluding patients and/or carers.
• The important role of nurses and allied health practitioners in the management of critically ill patients warrants respect by inclusion in discussions. Failure to do so has resulted in nurses inappropriately taking unilateral, surreptitious action justified as patient advocacy. Legal action for unlawful termination of life has also resulted.

ADVANCE DIRECTIVES AND POWER OF ATTORNEY

Patients may formally signal their preferences for end-of-life care in a written document or may nominate a surrogate decision-maker in the event of future incompetence. The legal standing of such documents is highly variable. Nevertheless, as expressions of self-determination they have considerable ethical validity and warrant respect. Unfortunately, advance directives are often insufficiently specific and it is not always possible to be sure that decisions included in such documents were fully informed and rational. Given the frequent reticence of patients to consider end-of-life matters,14 advance directives are unlikely to become widely pervasive.

EUTHANASIA

This term is strictly applicable only to situations of active termination of life with the knowledge of and usually at the request of a patient suffering a terminal and/or debilitating, incurable illness. Physician-assisted suicide is a variation of this practice. This is a subject of considerable debate and is now legal in a small number of jurisdictions though likely practised surreptitiously in many more. Ethicists, largely on consequentialist grounds, maintain no distinction between this and the terminal withdrawal or withholding of treatment18 (sometimes inappropriately termed ‘passive euthanasia’). For intensive care practice, however, the distinction seems obvious and essential. The distinction is most often argued on the basis of intent. Although there may well be a difference in intent between active euthanasia and withdrawal of treatment, relief of pain and suffering may be at the heart of both activities. Even if this is the case, active euthanasia is certainly a disproportionate means to the end. Treatment limitation is arguably an essential component of intensive care practice while euthanasia is not and there is usually a clear and obvious difference in the acts themselves. While it may be true that in some instances there is no moral distinction between euthanasia and withdrawal of treatment, this does not mean that there is never such a distinction.

TREATMENT WITHDRAWAL

• Once a decision has been made to withdraw or withhold treatment, the decision, the participants, the rationale and the details of the treatment limitation should be clearly documented in the patient records. Surreptitious treatment limitation is difficult to justify and potentially hazardous.
• There is no moral hierarchy of treatments but ventilator withdrawal is more obviously terminal than, say, withdrawal of renal replacement therapy or antibiotics.
• Although treatment may sometimes be withdrawn or withheld in ICU, care must never be withdrawn. An alternative, palliative management plan focusing on symptom relief and patient dignity should be instituted and documented.
• From a practical perspective, progressive treatment withdrawal enables progressive management of any resultant discomfort. It also helps foster an appreciation that death is a consequence of disease or organ system failure rather than of the withdrawal of treatment.
• Symptom relief with especially sedatives and narcotics may sometimes appear to hasten death. This is often justified on the ‘double effect’ principle, as the acceleration of death, though foreseen, was not intended. More importantly, however, this should be seen simply as a trade-off of two aims where the relief of unwanted symptoms assumes a higher priority than avoidance of the foreshortening of life. Certainly, it is difficult to justify unnecessary pain and suffering at the end of life on ethical grounds. Finally clinical experience suggests that, rather than shortening life, narcotics and sedatives commonly prolong the dying process by reducing cardiovascular stress.

CONSENT

Informed consent lies at the heart of the doctor–patient relationship and has both ethical and legal implications. Consent relates both to treatment (especially to invasive procedures) and to participation in research. General principles relating to consent can be listed:

• Patient consent is a fundamental tenet of medical practice. Routine or minor procedures may be included in the general consent to treatment.
• Consent may be waived in an emergency for treatment that is immediately necessary to save life or avoid significant physical deterioration. This applies whether or not the patient is technically competent.
• Valid consent is dependent on the provision of adequate information, including benefits and risks, and must be voluntary and free from coercion.
• Written consent provides evidence of the consent process, but consent itself need not be in writing, unless specifically required by a local authority.
• Competent patients are entitled to refuse consent to treatment even when doing so may result in harm or death.
• Surrogate consent for more elective procedures relies for ethical justification on the principle of autonomy. Patients’ interests must be paramount. Legal requirements relating to surrogate consent are highly variable and ‘surrogate’ is often formally defined and limited by local statute.
• Autonomy also provides the ethical justification for advance directives, the legal status of which is also highly variable.
• An enduring power of attorney generally applies to financial affairs rather than to consent to treatment. Again, the ethical basis relates to self-determination.
• Competent minors may or may not have a legal right to consent but age does not affect ethical considerations independently of insight and understanding. Even incompetent minors have some entitlement to confidentiality and all are entitled to protection from harm, even if that harm devolves from parental or guardian decisions based on well-meaning conviction or prejudice.
• Consent is especially required to involve a patient in research, where the importance of full disclosure is even greater. Medical research imposes some particular ethical issues, to be discussed below.
• Consent is also required for teaching purposes, such as video recording and photographing patients and teaching practical procedures.
• There may be a legal requirement for consent for testing for diseases such as human immunodeficiency virus (HIV)/acquired immunodeficiency syndrome (AIDS) and hepatitis. These diseases are not especially unique from an ethical perspective, however, and patients’ rights to privacy are not absolute.

Because intensive care patients are often unable to provide formal consent and because critical illness itself may negate the preconditions for consent, this issue is commonly neglected. Consent to ‘routine’ or everyday procedures in critically ill patients is often presumed or rather subsumed under the general consent to treatment. Near-universal consent is possible, however.19 The precise role for consent in the intensive care context has not been fully defined but deviations from the general requirement for consent require some justification. The legal requirement for consent varies with different interpretations and jurisdictions. If taken to extreme, such as enabling surrogate refusal for ‘routine’ procedures such as central venous access, consent-related autonomy may become incompatible with the beneficence and non-maleficence principles and may largely become untenable.

RATIONING AND SOCIETAL ROLE

Intensive care is, by nature, expensive. This creates a tension and a potential ethical conflict for intensive care practitioners. It is essential to find a balance between responsibilities to individual patients and to those of the collective. In theory, this is achieved by removing all rationing decisions from the bedside. Established norms rather than temporal availability or personal influence should determine access to ICU. Treatment is withheld or withdrawn not because there is a ‘more deserving’ patient at the door but because it would always be withheld or withdrawn under the particular clinical circumstances. Wide variations in access to medical care for similar patients across a single society cannot be ethically justified. More challenging is the definition of society. If a sufficiently broad perspective is adopted, most intensive care is difficult to justify. The ethically responsible intensive care practitioner will both advocate for individual patients and participate in the mostly unstructured social debate that determines what proportion of community resources is expended on medicine and on intensive care in particular.

PROFESSIONALISM

Medical practitioners occupy a unique and, usually, a privileged position in society. With this come a number of responsibilities. These are generally well covered in codes of conduct issued from time to time by professional societies and institutions of learning. The oldest and perhaps best known is the hippocratic oath. Professional, ethical responsibilities may be sorely tested where the well-being of the practitioner is at risk from medical practice, as with infectious disease epidemics and acts of terrorism. Resolution of this potential conflict has not been satisfactorily determined to date.

Among the ethical responsibilities of medical practitioners are:

• Maintenance of professional standards by continuing education and professional development
• Maintenance of appropriate professional relationships with patients
• Appropriate documentation of medical interactions
• Participation in quality and safety initiatives and practices
• Respect for patient and staff confidentiality
• Respect for the tenets of the law

INDUSTRY AND CONFLICT OF INTEREST

Relationships among doctors and the medical technology and pharmaceutical companies are complex.20 Doctors and industry are somewhat interdependent. Medical advances do not occur in a vacuum and the invention, assessment, development and marketing of new drugs and technologies necessitate close relationships among doctors and industry. While doctors are entitled to fair consideration for their skills and effort, the relationships must be overt and openly scrutinised if conflicts of interests are not to occur. The nature of the rewards offered by companies for medical involvement in product development is diverse but includes both direct and indirect payments. The economic justification for all these payments depends on their effects on subsequent product marketing. The propriety of travel and related support is questionable unless it is directly and attributably related to openly contracted services. Involvement of companies with vested interests in pseudoeducational initiatives and even guideline development may be little more than covert marketing.21 Some open labelled research initiatives with large, practitioner reward programmes are similarly worrisome. Initiatives designed to limit these conflicts of interest include open disclosure of all financial relationships and voluntary and involuntary codes of conduct on both sides of the relationship. Financial inducements can be easily concealed, however, and specific financial relationships can be obscured by their volume and pervasiveness. Although this potential for ethical conflict exists in many other commercial relationships, the nature of medicine and the associated expenditure of, often, public funds dictate that this is not an entirely private consideration.

RESEARCH

Critically ill patients can rarely consent themselves to participation in research projects and yet they are able to benefit from the results of earlier studies with similarly problematic consent issues. Locating surrogate decision-makers within a timeframe appropriate for some types of research can also be impossible. This has been recognised and enacted in a consent waiver for even randomised clinical trials. The potential ethical conflict in this situation lies in the use of a patient as an instrument to achieve another’s end without express consent. There is a potential ‘slippery slope’ in valuing the rights of the collective over those of the individual and yet the individual can be seen to have an interest in the resolution of some of these important clinical questions. The conduct of such research must be carefully scrutinised by outside agents and careful consideration must be given to the balance between risk and benefit. A potentially greater benefit might help justify a potentially greater risk even if the benefit might not be directly applicable to the subject. Studies of, for example, disease mechanisms involving little or no potential direct patient benefit would need to involve no material risk. In general, the principles of consent detailed above are applicable. When a waiver is applied, patients and/or surrogates should be afforded an opportunity to withdraw from study at the earliest opportunity.

RESOLVING ETHICAL CONFLICT

Ethical conflict most commonly arises where there is a clash of values or interests. Resolution is often difficult because of entrenched positions and convictions. The innate sense of right and wrong lends itself to strong convictions in a way not seen in other human activities. The fundamental basis of resolution is discussion, enabling exposure of the values or interests that are in conflict. This may require a third party or mediator. Absolutist convictions such as ‘sanctity of life’ and absolutist terminology such as ‘futility’ impede conflict resolution and have to be unravelled.

There are several useful guidelines informing practice, particularly in relation to end-of-life decision-making. Individual practitioners should be aware of these and adapt them to local circumstances. Institution-based guidelines that conform to more overarching documents are probably most useful. Most learned colleges and professional societies now promulgate such practice guidelines in various forms.

Ethics committees have an important role in establishing frameworks for ethical practice. There is some evidence that formal ethics consultations improve end-of-life management but the principles utilised are those of open discussion and full disclosure that should inform normal bedside communication. Committees should normally have no individual decision-making role.

Recourse to legal processes may be essential but should be infrequent as the legal system does not cope well with the complexity of medical decision-making and is generally slow and ponderous. Practice should conform to legal norms, however, so long as these are not unethical.

REFERENCES

1 Logan RL, Scott PJ. Uncertainty in clinical practice: implications for quality and costs of health care. Lancet. 1996;347:595-598.

2 Sprung CL, Cohen SL, Sjokvist P, et al. End-of-life practices in European intensive care units. The Ethicus study. JAMA. 2003;290:790-797.

3 Prendergast TJ, Luce JM. Increasing incidence of withholding and withdrawing of life support from the critically ill. Am J Respir Crit Care Med. 1997;155:15-20. 15–20

4 Cook D, Rocker G, Marshall J, et al. Level of care study investigators and the Canadian critical care trials group. Withdrawal of mechanical ventilation in anticipation of death in the intensive care unit. N Engl J Med. 2003;349:1123-1132.

5 Hamel MB, Teno JM, Goldman L, et al. Patient age and decisions to withhold life-sustaining treatments from seriously ill, hospitalized adults. SUPPORT investigators. Study to Understand Prognoses and Preferences for outcomes and Risks of Treatment. Ann Intern Med. 1999;130:116-125.

6 Phillips RS, Hamel MB, Teno JM, et al. Patient race and decisions to withhold or withdraw life-sustaining treatments for seriously ill hospitalized adults. SUPPORT investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Am J Med. 2000;108:14-19.

7 Kolleff M. Private attending physician status and the withdrawal of life-sustaining interventions in a medical intensive care unit population. Crit Care Med. 1996;24:968-975.

8 Fisher M. An international perspective on dying in the ICU. In: Curtis JR, Rubenfeld GD, editors. Managing Death in the ICU. New York: Oxford University Press; 2001:273-288.

9 Fisher MM, Raper RF. Withdrawing and withholding treatment in intensive care. Med J Aust. 1990;153:217-229.

10 Fisher M, Raper RF. Delay in stopping treatment can become unreasonable and unfair. Br Med J. 2000;320:1268-1269.

11 Faber-Lagendorf K, Bartels DM. Process of foregoing life-sustaining treatment in a university hospital: an empirical study. Crit Care Med. 1996;24:968-975.

12 The SUPPORT investigators. A controlled trial to improve care for seriously ill, hospitalized patients. The Study to Understand Prognoses and references for Outcomes and Risks of Treatment (SUPPORT). JAMA. 1995;274:1591-1598.

13 Angus DC, Barnato AE, Linde-Zwirble WT, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med. 2004;32:638-643.

14 Heyland DK, Frank C, Groll D, et al. Understanding cardiopulmonary resuscitation decision making: perspectives of seriously ill hospitalised patients and family members. Chest. 2006;103:419-428.

15 Heyland DK, Rocker GM, O’Callaghan CJ, et al. Dying in the ICU: perspectives of family members. Chest. 2003;124:392-397.

16 Ferrand E, Robert R, Ingrand P, et al. Withholding and withdrawal of life support in intensive-care units in France: a prospective survey. French LATAREA group. Lancet. 2001;357:9-14.

17 Sjokvist P, Nilstun T, Svantesson M, et al. Withdrawal of life support-who should decide? Intens Care. 1999;25:949-954.

18 Rachels J. Active and passive euthanasia. N Engl J Med. 1975;292:78-80.

19 Davis N, Pohlman A, Gehlbach B, et al. Improving the process of informed consent in the critically ill. JAMA. 2003;289:1963-1968.

20 Gale EAM. Between two cultures: the expert clinician and the pharmaceutical industry. Clin Med. 2003;3:538-541.

21 Eichacker PQ, Natanson C, Danner RL. Surviving sepsis – practice guidelines, Marketing campaigns, and Eli Lilly. N Engl J Med. 2006;355:1640-1642.

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