ETHICS

INTRODUCTION

The ethical dilemmas of modern medicine are frequently encountered in critical care practice and there are recurring practical opportunities to reinforce one's knowledge of ethics for trainees and intensive care workers generally. The authors of this module do not attempt to provide all the answers to difficult decisions, but will point out some ways in which you can approach hard cases.

Many critically ill patients are too ill to give or withhold their consent to treatment. It is often necessary to find a way to make difficult decisions, which may involve the initiation, or the foregoing, of intensive life-sustaining therapies, on a patient's behalf. The module outlines approaches which respect the autonomy of the patient in reaching therapeutic decisions.

In the absence of consent it could be argued that research and innovative therapies which cannot be known to benefit the patient should be prohibited. Yet research continues and is necessary to the improvement of the evidence base which justifies the therapies which patients undergo. In this module you will learn how intensive care doctors have tackled problems of consent to both treatment and research.

Intensive care technology has given practitioners the ability to sustain the body's metabolic processes even when recovery to independent existence becomes impossible. This has led to the need to redefine death and to establish ways of switching from 'aggressive' to 'palliative' treatment at the end of life without breaking laws which prohibit the taking of life. You will learn what ethics and the law have to say on these difficult matters.

Beyond the private interests of the doctor-patient relationship, there is a valid public interest in the work physicians do. Some of the issues of public concern will be explored.

The complexity and invasiveness of intensive care treatments may cause unintended harms to our patients; this module will draw your attention to some of the ways errors and accidents happen, and to the fact that even accepted practices are sometimes found in retrospect to be harmful. What are your duties to your patients in dealing with unintended harm? 

Intensive care practice poses a number of special case challenges to conventional ethical thinking about the doctor-patient relationship

1/ UNDERSTANDING ETHICS AND THE ART OF MORAL REASONING

By one definition, 'Ethics' is the study of morality and moral reasoning, and helps us to answer the question 'what ought I to do?' in any given circumstance where a choice must be made. Some people seem to believe that 'Ethics' when applied by an expert will reveal a single correct or 'ethical' answer to any given moral dilemma. This is certainly not true.

Moral reasoning:

Deontological ethics

If you regard certain acts as morally wrong regardless of the consequences, you are applying deontology; perhaps it is your belief that it is always wrong to bring about the death of another person, perhaps you may believe that it is always wrong to tell a lie. In the 18th century Immanuel Kant formulated a Practical Philosophy which supported the existence of God, and he identified a Categorical Imperative, which in one formulation says:

'So act that you treat humanity in your own person and in the person of everyone else always at the same time as an end and never merely as means.'

The rules that Kant derived from the Categorical Imperative, and the Ten Commandments of the Judeo-Christian Old Testament, are examples of deontological ethics. 

Your approach to moral reasoning may be broadly 'deontological' (pertaining to duty) or 'teleological' (pertaining to the purpose or design of developments). Here 'consequentialist' is substituted for 'teleological'

Consequentialist ethics

A consequentialist approach is commoner in secular thought. The correct thing to do is that which brings about the morally superior outcome. But what is moral superiority? A utilitarian would argue that the practitioner ought to do that which brings about the greatest happiness or benefit for the parties concerned. Act utility chooses as morally superior the choice that brings about the most desirable outcome for the specific persons under consideration. Jeremy Bentham was a 19th century philosopher who developed the concept of utilitarian ethics, which he described as follows:

'Ethics is the art of directing men's actions to the production of the greatest possible quantity of happiness, on the part of those whose interest is in view.'

Bentham believed that every man is the best judge of his own advantage, and advocated three ethical principles; prudence (in one's own personal conduct), probity (forbearing to diminish the happiness of one's neighbour) and beneficence (studying to increase one's neighbour's happiness).

Rule utility

Perhaps occupying a middle ground between deontology and act utilitarianism is rule utilitarianism, in which the rule to be followed is that which would bring the greatest happiness or benefit if it is applied in all similar cases. Lawmakers tend to apply rule utilitarianism.

Principlism - a dominant approach in western practices

The most commonly quoted set of modern ethical principles is that enumerated by Beauchamp and Childress of Georgetown University in the USA:

Respect for autonomy, the patient's right to self-determination

Beneficence, the moral obligation to promote the patient's welfare

Non-maleficence, the avoidance of harm to the patient Justice, society's expectation that everyone will be treated

fairlyThey have gained broad acceptance and are so regularly quoted that they have been dubbed the Georgetown Mantra. More recently a physicians' group calling themselves the Medical Professionalism Project has advocated three fundamental principles and a set of ten professional responsibilities (commitments).

In each ethical dilemma, consider how best to enhance the patients welfare, respect his autonomy, and promote justice

Their principles are: Primacy of patient welfare Respect for patient autonomy Promotion of social justice

 

The particular emphasis on respect for autonomy, or the right to self-determination, is characteristic of modern 'Western' morality. In this view, patients are sometimes thought of as consumers.

What rights do consumers have in your country? What are the arguments for and against applying consumer rights to the doctor-patient relationship?

 

The following reference puts a historic perspective to moral reasoning in medical practice.

Pluralism

It is said that respect for the family and the community are generally valued more highly than individual and consumer rights by traditional 'Eastern' cultures. In the reference on the next screen Ip and colleagues describe their practice in Hong Kong. Feminists have claimed that women's values are inadequately addressed by standard ethical approaches, and that women would give greater weight to caring, empathy and the preservation of relationships than academic male ethicists do. Faiths and laws tend to recognise a sanctity of life, or at least of human life. The ethics to be applied in any clinical situation will therefore depend upon the religious and moral convictions of the patient and his health care professionals, and the culture of the institution in which care is delivered.

Surveys of critical care physicians' attitudes to ethical matters and their practice in making difficult choices show substantial individual and international variability. Indeed, some physicians report that they do not always act in the way they believe they ought. 

Is there such a thing as a universal morality?

It is said that the commonest model of doctor-patient relationship in the intensive care unit is based on paternalism, and patient's rights advocates complain of being infantilised by the imbalance of medical knowledge.

THINK We have not mentioned social justice. How can an intensive care doctor serve both his

patient and the interests of society?

Improving your ethical skills

A dilemma entails a necessary choice between two or more available options, each of which is in some way undesirable, and so it's resolution will entail a degree of compromise. It has been said that too much teaching of ethical theory can provide a new vocabulary of words with which to impress listeners, but which add nothing to understanding. Develop your practical wisdom and clinical judgment by considering and discussing ethical dilemmas, as you encounter them, with peers and teachers. This way you will accumulate a wealth of experience on which you can draw, comparing and contrasting each new dilemma with cases you have previously been party to resolving. Engage in discussions about difficult choices with your patients and, where appropriate, their families. Learn how to respect their point of view and win their trust so that difficult choices can be made in partnership.

You possess a sense of what is right and what is wrong, a moral intuition. Use practical clinical situations to learn to integrate this with ethical theory

THINK What influences your sense of right and wrong? To what extent did your parents, your teachers, your religion, or your exposure to the humanities (art, literature, performing arts) shape your personal ethic? Think of ethical attitudes which are widely held but different to your own and try to understand how they might have been formed.

The American College of Physicians has published a Manual which commends principlism and recommends 'a case method for ethical decision making'.

Making difficult decisions : Four considerations

ANECDOTE In 1988 Samuel Linares, an infant with hypoxic brain injury, had been ventilated in a Chicago intensive care unit for eight months. His parents were visiting him when Mrs Linares left the room, and Mr Linares produced a pistol and instructed the staff to keep away. He then took his son in his arms, disconnected the ventilator, and cradled Samuel until he was dead. Mr Linares surrendered his weapon, and was arrested. A Grand Jury refused to issue a homicide indictment.

1/ The facts of the case

It is a professional responsibility to ensure that any ethical debate is informed by the relevant clinical facts, based on the best available evidence.

2/ Personal values

COMMUNICATION The patient, friends and family, health care professionals including nurses,doctors and others, may each have differing values and ethical approaches to some of the hard choices that arise from time to time in clinical practice. Expertise in negotiation and mediation will be of value in achieving consensus, if necessary provided by an ethicist. Health professionals must take care they do not impose personal values or use undue coercion to achieve only the reluctant acquiescence of the parties to the consensus.

3/ Professional custom, practice and ethical guidelines

Awareness of relevant institutional and national professional rules, and adherence to them, will define good clinical practice in your hospital and may minimise the incidence of moral dilemmas in your practice. Nonetheless there will always be 'hard cases' for which such rules alone do not point to a morally satisfactory answer.

Be aware of ethical guidance from national bodies applicable to practice in your country

4/ The law

National laws have been influenced by international agreements since the Geneva Conventions of 1864. Military Judges at the Nuremberg trials (1945- 1947) drew up the Nuremberg Code to protect human subjects of medical experiments, and the United Nations drew up a Declaration of Human Rights (1948) which has been the predecessor of the European Convention on Human Rights, which is given great weight in European laws. Politicians and judges often recognise that the patient and public interest lies in accepting responsible medical opinion and accepted medical practices will usually, therefore, be legal. However, the law does from time to time disapprove of practices that professional consensus holds to be 'ethical'. In the west, the law often puts precedence on the rights of the individual relative to those of the 'community'.

Law has the final word when there is conflict or disagreement between parties.

For more about the Nuremberg code, see:

In some countries and in some institutions, clinical ethics consultations are available to assist with difficult decisions.

Give some examples of proposed practices that might be 'ethical' yet 'unlawful', or 'lawful' but 'unethical'.

Look at the European Convention on Human Rights - first link below [click Treaties, Convention for the Protection of Human Rights and Fundamental Freedoms CETS No. 005] - especially Articles 2-12 and 14. Consider how they might influence the rights of patients. Visit the World Medical Association's website - second link below - and examine the Declarations of Helsinki and Geneva. Consider how they are applicable to your intensive care practice and research.

2/ ISSUES OF CONSENT

We will take as our starting point the ethical principle that each person has a right to self-determination, and is entitled to have their autonomy respected. The classic legal formulation comes from a decision by Justice Cardozo in a New York case in 1914; 'Every human being of adult years and sound mind has a right to determine what shall be done with his own body: and a surgeon who performs an operation without his patient's consent commits an assault, for which he is liable in damages.'

Voluntary treatment: Informed consent

Seeking consent to treatment is an essential part of respect for a patient's autonomy. The successful delivery of health care requires the patient (and/or his guardian/s and carer/s) to be informed of the proposed treatment and its consequences, instructed about his contribution, and to be a willing and active participant. Before a patient is asked to give his consent therefore, he should be given information about the nature, benefits and significant risks of the proposed treatment. Where appropriate, he should also be advised of alternatives to the proposed treatment, including the option of no treatment. A practitioner can be found guilty of negligence if he falls short of the standard of care expected in gaining his patients consent; typically, a claim will be made when a patient suffers a complication of which s/he was not forewarned.

It is fashionable to talk of informed consent, but whether consent can be anything other than 'informed' is debatable

The legal purpose of consent includes the protection of the practitioner from a criminal charge of trespass; see, for instance the words of Justice Cardozo  . The standards of consent required to protect a practitioner from either professional liability or a charge of trespass varies from country to country. In exceptional circumstances, the law may grant a doctor a 'therapeutic privilege' to withhold relevant information from a competent patient where she believes that disclosure would cause undue harm to the patient. The following reference analyses the important concept of consent.

Refusal of treatment

Logically, the right to consent to treatment means nothing if the patient may not also refuse treatment. In practice we rarely question a patient's ability to consent, but when the patient refuses a treatment which the doctor sees as important to the preservation of life and health, her consideration will turn to whether the patient is of sound mind. The responsibility for deciding whether a patient is competent to decide lies with a medical practitioner.

Fit to refuse?

Decision-making capacity

Justice Cardozo mentioned 'sound mind'. What do we mean by that today?In the French study referenced on the next screen, a mini-mental state test was used as a screening test for competence in critically ill adults. When you have reason to doubt a person's decision-making capacity you should determine whether the person understands and remembers information he is given about the treatment, and has the ability to weigh the information before making a free choice. Importantly, you should not decide the patient lacks capacity merely on the grounds that he has a psychiatric illness, is receiving drugs which affect the mind, is mentally distressed, has previously changed his mind, or that the choice he makes is illogical, self-harming, or one with which that you happen to disagree.

Across the western world, persons who have reached the age of majority are presumed to have the capacity to give or withhold their consent to proposed medical treatment, but this presumption may sometimes be rebutted

When there is doubt about a patient's capacity and the choice he wishes to make is contrary to medical advice, get an expert opinion from a psychiatrist. We will consider how to deal with the patient who lacks decision-making capacity later.

Five elements of informed consent

We can summarise the consent process in the following way:

The doctor should disclose relevant information on which the patient may make a decision.

The patient should (be able to?) understand the information. The patient should be competent to weigh the information. The patient should be at liberty to make a truly voluntary choice free of undue influence

by others. The patient or guardians/representative should make a decision.

Involuntary treatment: The public interest

When a competent person refuses appropriate medical treatment it would normally be unethical and illegal to administer treatment 'involuntarily'. The law will often make provision for involuntary treatment of certain patients.

Under what circumstances could we be justified in treating competent patients against their expressed wishes?

Advance directives (living wills)

In many countries the law has extended the right of self-determination to include the right to make advance directives. Advance directives can be used to indicate the patient's wishes and values in the event that they should lose decision-making capacity. This may include nominating a person to make decisions on their behalf.

THINK There are some reservations about the ethical aspects of advance directives on refusal of life sustaining treatment. Consider a hypothetical situation in which a patient with severe traumatic neurological disability is unable to feed himself and unable to make decisions; otherwise, he responds to people and his environment, shows appropriate pleasure in playing simple games, displeasure when hungry or thirsty, and is not believed to be in pain. His family wish to care for him at home, but while he was a competent adult, he had made an advance directive instructing that, if he was severely handicapped and dependent on others to feed him, then nutrition should be withheld. Should his directive be enforced? Formulate arguments for and against withdrawal of nutritional 'treatment' in this case.

The law starts from a presumption that an advance directive is to be respected and will be binding upon a doctor if it is clearly established and applicable in the circumstances. Where there is doubt and the patient's life is at risk the presumption in favour of saving life prevails. Remember that an advance directive does not give the doctor permission to shorten life when to do so is against the law. A common form of advance directive is the Jehovah's Witness injunction against transfusion of blood products. It is important to seek the views of the individual patient. Life-sacrificing refusals made by adults on behalf of children are not likely to be accepted by a court which must be responsible for the child's welfare. Though older children may sometimes be empowered to give consent to treatment, it would be rare to allow a minor to refuse life-saving transfusion.

American health care institutions are obliged by the Patient Self-Determination Act (1991) to inform patients of their right to formulate an advance directive

From what you have learned so far, what reasons might there be for not following an incompetent adult's advance directive?

Non-voluntary treatment

There are occasions when a doctor may treat an adult patient without his consent. We have noted above the therapeutic privilege (which should only exceptionally be exercised) to withhold

information from a patient when nondisclosure is necessary to protect the patient's welfare.

In an emergency: Necessity to treat

Treatment of a patient without his consent is normally an assault on his person, but morality and the law quite properly make exceptions for emergency medical treatment which can be justified as 'necessary' to restore and preserve his health and well-being when consent cannot be obtained. In fact, we can go further and say that we have ethical and legal duties to administer in an emergency such treatments as we have good reason to believe are necessary to the patient's eventual recovery. Necessity is not, however, a defence against treating a patient in defiance of an expressed refusal.

Research: The waiver of consent

In certain circumstances a research ethics committee can grant a waiver to the normal requirement for consent to participation in a research project. This issue is discussed in relation to emergency care clinical research in Task 4 

The adult who lacks decision-making capacity

There are essentially two approaches. The first is to identify a proxy or surrogate to give consent on behalf of the patient. The proxy will be someone who was named in the patient's advance directive, or someone who has power of attorney for medical treatment decisions, or someone who knows the patient and will be expected to exercise a 'substituted judgment'. In order to make a substituted judgement, the decision-maker is expected to 'don the mental mantle' of the patient and decide as she believes the patient would decide if he had the capacity.

The second, applied where no such proxy is available, or in countries such as the United Kingdom where proxy consent has no legal standing, is for the doctor to have a duty to treat, without consent, in accordance the patient's 'best interests'. Best interests are decided by comparing the probability and magnitudes of possible benefits of treatment against possible risks and burdens. The family of the patient need not be excluded from the process of determining the patient's best interests, as their views as to what they believe the patient would have wanted should be considered by the doctor before he decides. An advance directive might assist the doctor in deciding what the patient would have wanted, and in identifying somebody who will best represent the patient's wishes.

In either approach, consensus of the parties is the desired and everyday mode of decision-making. When consensus cannot be reached an outsider should be identified to help negotiate and mediate a resolution to the disagreement. This outsider might be a senior physician, an ethicist or ethics committee, or a patient's advocate. If all else fails, a Court can exercise its power to identify a proxy decision-maker or to make a decision on behalf of a patient with incapacity according to the law of the country.

ANECDOTE A woman who recovered from a profound neuromyopathy told how she feared for her life because she overheard her husband telling staff at her bedside that she would not wish to receive prolonged life sustaining therapies, and asking if they could be removed. She knew that, even before her illness, he had been having an extramarital affair and had asked for a divorce, but the staff were unaware of this.

Caution must always be exercised that identified surrogates are truly representing the patient's values and likely judgment. Decisions that are not obviously in the patient's best interests should be carefully scrutinised.

Observe in your own ICU some cases in which proxies are identified to represent the views of patients or to make decisions on behalf of adult patients who lack decision-making capacity.

Decision-making: Neonates and children

It is widely expected that parents should regard themselves as having a duty to act in their child's best interests rather than see themselves as having rights over the child. Where a parent appears to be acting other than in the child's best interests (for instance by refusing medical advice), and where expert mediation and negotiation fail to achieve a consensus, a Court can be asked to consider the child's welfare. In America, parental authority will remain with the parents unless what they decide would be clearly abusive or neglectful of the child. In England, when parental choice is questioned, a Court will weigh the child's interests and choose the best for the child. In the following reference a lawyer discusses the agonising decisions that had to be made about whether or not to separate conjoined twins.

For children there is a presumption that the ability to consent to treatment will lie with the parents

Whenever possible, minors should be involved in clinical decision-making even if they do not have a legal right to give or withhold consent. The weight to be given to the minor's views will depend upon their intellectual maturity to make the decision under consideration.

Older children have the intellectual maturity to make some decisions for themselves even though they are still minors

THINK Is it possible to make a substituted judgment for one who had never in life achieved a state of competence to decide? Are family always good at making substituted judgments for previously competent patients? Is it really possible to weigh benefits of treatment against harms in order to determine best interests?

he unborn child - treating a pregnant woman

Many people would instinctively say that in the body of the pregnant woman there are two lives whose preservation and interests are to be considered.

ANECDOTE AC was just a day or two from death, and carrying a 27-week pregnancy. She was offered a Caesarian Section, which would give her viable foetus a 50:50 chance of survival. She refused, so the Hospital Authority petitioned a judge for declaratory relief. On the judge's order, the Caesarian section was performed against AC's wishes. Her daughter died within a few hours of delivery, and AC died the following day.

Since the tragic case of Re AC (Washington DC, 1990) courts have usually refused to accept that the right to self-determination of a woman is in any way compromised by the existence of a pregnancy. A competent woman may refuse any treatments, including those intended for the protection or safe delivery of her foetus. But what of the pregnant patient who comes to the intensive care unit unable to make decisions about treatment. You may judge that you would be acting in her best interests if you were to undertake reasonable interventions to preserve and protect her foetus, if there is no evidence to the contrary.However, where there is conflict between the interests of the patient and the interests of her foetus, the interests of the patient must be put first.

Look again at the tragic case of Isobel in the Patient Challenges. What arguments could be advanced for and against continuing 'life support' after Isobel's brain death for the benefit of her foetus?

3/ GOALS OF TREATMENT AT THE END OF LIFE

'Thou shalt not kill; but need'st not strive Officiously to keep alive'

These words were written in a poem 'The Last Decalogue' by Alfred Clough (1819-1861) as an ironic criticism of moral complacency, but are now widely quoted in support of conservative end-of-life care. Despite the fact that several decades ago a large proportion of patients in ICUs died after cardiopulmonary resuscitation, ICU physicians recognise that some patients (10-30% depending on the ICU population) will not survive. Therefore, most patients dying in ICUs today do so after limitations of treatments. Up to 90% of these patients undergo withholding or withdrawing of life-sustaining therapies, thus allowing the patient a 'natural' death. Death after unsuccessful attempts at cardiopulmonary resuscitation, or death diagnosed by brain-stem testing are less frequent.

Although ethically (and legally) questionable, depending on the precise meaning of 'shortening the dying process', there is now evidence that in some countries, ICU doctors occasionally act with the intent to shorten the dying process.

Optimal care: To treat for survival or to treat for comfort?

Factors to be taken into account when deciding whether a treatment is indicated should include:

The likely effectiveness of the proposed treatment The benefits, risks and burdens of the treatment The patients wishes and values (where these can be

ascertained) and, in the case of sick children, views of the parents

 

Treatments for patients with serious illnesses may be aggressive (aimed at preserving life) or palliative (aimed at providing comfort)

If a treatment will not benefit the patient, or if the probability of harm so outweighs the possibility of benefit as to make treatment 'inadvisable' it can be said to be 'inappropriate'. The optimal treatment choice may then be palliation rather than aggression. Depending on the part of the world where you are practising, some therapies may be unaffordable, from existing resources and palliation may be the optimum form of treatment.

Patient's wishes and values

You will encounter a spectrum of attitudes to end of life care among patients and families. At one end are those reconciled to dying, who wish to reject intrusive medical technology and make advance directives about their end of life care. At the other end of the spectrum are vitalists who will argue that the sanctity of life demands the use of any medical technology no matter how small the likely benefit. They cling to media stories of medical breakthroughs and miracle cures. In between lie those who have given little thought to dying; people who fear excessively enthusiastic therapies which might make their dying painful, but who are equally suspicious of health purchasers and providers who might ration care in pursuit of efficiency. It is for these people that communication, realistic information and reassurance are especially helpful in making health choices. It may be useful when talking to families to point out that many who believe strongly in the sanctity or 'special status' of (human) life recognise that a futile, technological prolongation of death is not compatible with the 'sanctity of life' concept.

You should try to understand our patient's values and respect their wishes

You might expect that if doctors and nurses better engage patients with 'serious and complex illnesses' in discussions about their preferences for treatment at the end of life, the number of people suffering prolonged and painful dying processes would be reduced by

The objective of SUPPORT was to improve end of life decision making and reduce the frequency of a

more appropriately switching from 'aggressive' treatments to palliative' care. The Study to Understand Prognoses and Preference for Outcomes and Risks of Treatment (SUPPORT) did not confirm this hypothesis. Not all patients want to discuss preferences about end of life care, and they not infrequently change their minds about treatment preferences, so unsurprisingly neither doctors nor proxies are very good at making substituted judgments. The following is just one of the reports by SUPPORT, you may wish to read some of the others.

mechanically-supported, painful and prolonged process of dying

In the study below, an ethical case review on patients who were ventilated for more than four days appeared to improve end of life decision-making and shorten the length of ICU stay for dying patients. However, the mortality rate was different between the control and intervention groups. As with all clinical trials, you should examine the data carefully before accepting the conclusions of the authors.

Faiths and cultures

The following are just two examples of religious views on end of life care; the first is from Roman Catholicism, and the second from Orthodox Judaism.

'Due proportion in the Use of Remedies.Today it is very important to protect, at the moment of death, both the dignity of the human person and the Christian concept of life, against a technological attitude that threatens to become an abuse. ...the complexity of the situation can be such as to cause doubts about the way ethical principles should be applied. In the final analysis, it pertains to the conscience of either the sick person, or of those qualified to speak in the sick person's name, or of the doctors, to decide, in the light of moral obligations and of the various aspects of the case. ...it will be possible to make a correct judgment as to the means by studying the type of treatment to be used, its degree of complexity or risk, its cost and the possibilities of using it, and comparing these elements with the result that can be expected, taking into account the state of the sick person and his or her physical and moral resources.'

'Judaism condemns any deliberate induction of death, and considers it an act of murder, even if the patient requests it. Life is not ours to terminate. It is therefore absolutely forbidden to administer any drug or institute any procedure which may hasten the death of the patient, unless such drugs or procedures have significant therapeutic potential. The discontinuation of instrumentation and machinery such as a respirator or cardiac pacemaker ...which support vital life processes should not be interrupted ...once instituted. If the patient in extremis is in severe pain and no therapeutic protocol holds any hope for recovery, it may be proper to withhold any additional non-routine medical services, so as to permit the natural ebbing of the life

Knowing the religion of your patient will help to understand his personal values, but do not presume that persons of religion will always wish to act as their religion dictates!

forces.'

From your log book or from the ICU admission data try to find a recent case in which the patient's faith influenced clinical practice. How did your service accommodate the patient or his family's special requirements?

COMMUNICATION Achieving consensus

It is good practice to seek the views of colleagues (doctors, nurses, and other professionals where relevant) when considering whether to recommend treatment limitations. However, it falls to the patient's senior medical advisor to accept responsibility for the decision, and for communicating the opinion to the patient or his proxies. It is then necessary to seek the consent of the patient and/or the agreement of those closest to him, whenever possible. Communication and negotiation skills can help prevent misunderstandings and conflicts.

ANECDOTE In a recently reported case in Belgium, a 74-year-old man with end-stage lung disease asked for mechanical ventilation to be discontinued. After his specialist consulted with his family, family doctor and other hospital specialists, ventilation was discontinued and he died soon after. A nurse reported the incident to the police, and two doctors were indicted for homicide.

Withhold versus withdraw

If we are to recommend the forgoing of life sustaining treatments, what are the differences between withholding a treatment and withdrawing it once it has been initiated?

In France, the law prohibits both withholding and withdrawing of life-sustaining treatments, though a recent practice survey revealed these practices to be common. The Comit' Consultatif National d'Ethique pour les Sciences de la Vie et de la Santé strongly commend the following ethical objective: to make sure that there is no entry into the vicious circle of overtreatment which gives priority to the operation of the health care system at the expense of respect for the human being.

Which treatments can we limit?

Treatments which are reported to be withheld or withdrawn from patients who are dependent upon them but not benefiting from them include attempts at cardiopulmonary resuscitation, vasopressor infusions, artificial ventilation techniques, supplementary oxygen, blood products, renal replacement therapies, total parenteral nutrition and antimicrobial therapies. Surgery may be withheld.

Are food and water medical treatments which can be limited?

We consider on the following screens the special challenges of withholding attempts at cardiopulmonary resuscitation (CPR) and withdrawing mechanical ventilation. Whenever possible, the attending health professionals and the patient (or his proxy) will be in agreement whether or not to provide some or all treatments.

Withholding attempts at cardiopulmonary resuscitation

CPR decisions

When a doctor is first in attendance to a person who has suffered cardiorespiratory arrest, he must very rapidly judge whether resuscitation attempts might be

Effective Beneficial In accordance with the patient's wishes

If the patient is dead, or if it is clear that attempts at CPR would not be effective in preventing death, attempts need not be made. If there is a prospect that CPR might be effective in preventing death, it will be very difficult in the emergency situation to make a decision based on balancing of benefits and burdens of treatment, and the presumption should be to attempt resuscitation.

If the doctor knows the patient has refused to consent to attempts at CPR, those wishes must be respected. If a 'Do not attempt cardiopulmonary resuscitation' (DNACPR) order has been made, and is applicable in the circumstances, it should be respected.

DNACPR orders

'DNACPR' or 'DNR' orders are sometimes written in the medical record of patients whose disease has become incurable and whose death is imminent whatever steps might be taken to prolong life. It is also open to patients who are not terminally ill to refuse attempts at CPR, or any other treatment, if they wish. There are a number of professional standards and documents which give practical guidance to doctors considering whether attempts at resuscitation of a patient are indicated.

Does your country have professional or legal guidelines concerning DNACPR orders? Familiarise yourself with them. Compare them with some of the Guidances available on the Web. American Medical Association: H-140.972 Guidelines for the Appropriate Use of Do-Not-Resuscitate Orders: - first link below - British Medical Association: Decisions Relating to CPR: - second link below - Canadian Medical Association Joint Statement on Resuscitative Interventions: - third link below -

The Canadian Critical Care Trials Group showed that cardiopulmonary resuscitation directives can be made during the first 24 hours on the ICU, but the practices they described showed marked variability.

Withdrawal of mechanical ventilation

ANECDOTE Ms B had suffered a spinal cord injury and wished to have her mechanical ventilation withdrawn under general anaesthesia. She rejected 'one way wean', and was supported by a court of law which recommended she be moved to a hospital where staff were prepared to carry out her instructions.

 

The very close temporal association between abrupt withdrawal of mechanical ventilation and death raises special concerns for many people. Not surprisingly, there are different schools of thought on how and in what circumstances withdrawal of mechanical ventilation should be performed. The role of muscle relaxants is particularly questionable, given that these agents are not known in anticipation of allowing death to occur, special consideration must be given to the patient's comfort

and the palliation of agonal dyspnoea. The following references examine some proposed approaches.

Treating for comfort at the end of life

At the end of life, palliative treatment becomes the primary objective. Make the patient's immediate environment as comfortable and homely as possible. Reduce the lighting and noise levels. Consider use of music which the patient may like, but play it considerately and not continuously. Ensure the patient is talked to and touched from time to time, so he does not feel isolated or rejected. Consider counselling, relaxation techniques and distraction techniques as available and fashionable. Drugs are often used. Rapid titration of dose to the level required for the patient's comfort is important. Opiates and phenothiazines have a long tradition of use in Hospices to control pain, dyspnoea, nausea and itching. Other classes of anti-emetics can be added if there is doubt about the patient's freedom from nausea. The anxiolytic effects of benzodiazepines may also be of value. Topical fungal infections may be uncomfortable and may be treated, but therapy for non-symptomatic infections need not be continued.

Pyrexia may be unpleasant and can be treated with physical methods and anti-pyretic medications. Oral hygiene too is important. Keep the mouth moist and fresh with mouth washes and flavoured drinks. Apply topical anaesthetic preparations to ulcers of the mouth and lips. The following references go into more details.

All our patients deserve physical and emotional comfort, and the prescription of medicines which palliate unpleasant symptoms of their disease

Acts and omissions at the end of life; the doctrine of double effect

As applied to the palliative care of patients who are dying, this well-known ethical and legal doctrine allows that narcotics may be used at the approach of death to suppress pain and distress even if one foresees that it will shorten life. The intention must be to relieve pain effectively, using for this purpose recognised analgesic drugs. Crucially, death must be in no way intended or sought, even if the risk of it is reasonably foreseen. This distinction between intent to alleviate suffering and intent to shorten life is critical, yet fine. Experience and evidence suggest that adequate analgesia can often be achieved without shortening life. In the next reference you will find further debate on double effect.

Double effect is an ethical concept which depends on a moral distinction between the foreseeability of an adverse effect of a good act, and the intention to cause an adverse effect. Some question the validity of the distinction

4/ JUSTICE: THE PUBLIC INTEREST IN INTENSIVE CARE ETHICS

Futility: The appropriateness and advisability of treatment

Clearly, a treatment which is wholly ineffective is futile and should not be offered to a patient. But is a treatment with only a slim chance of effectiveness also futile? What of a treatment which is effective in prolonging life but brings little or no net benefit to the patient in quality of life? Who should decide whether a life of diminished quality is worth living? Because of confusion about futility it is preferable to discuss other concepts such as the probabilities of benefits and harms or burdens of treatments which will help us to decide their appropriateness and advisability in each case.

The following papers expand on the concept of futility, appropriateness and advisability of treatments.

Futility is not easily defined

Institutional admission and discharge policies

Responsible ethical, medical and legal opinion acknowledges that it is necessary in some circumstances to limit access to services such as intensive care. Health care purchasers (governments, health care organisations) allocate a finite amount of money each year, and some resources (such as qualified staff, or organs for transplant) are limited by factors other than financial considerations. Allocation decisions precede rationing or triage decisions which are made by physicians on individual patients almost every day. Objective protocols are recommended so that the process is transparent, and extreme care must be taken to ensure that the criteria are seen to be fair and non-discriminatory. The European Convention on Human Rights Article 14 prohibits discrimination on the many grounds, and though age is not specifically mentioned, it is suggested that the list is non-exhaustive and exclusion from treatment on the basis of age alone would be a breach.

In many intensive care services the demand for admission sometimes exceeds capacity. It may therefore be necessary to raise the criteria for admission in order to make optimal use of the available resources

There is much reported evidence that age discrimination has not been eliminated from medical practice. Intensive care treatment should be offered primarily to those who have a reasonable prospect of benefiting from active treatment, so some judgment about the prognosis is required.

What methods exist to estimate a patient's risk of mortality at the beginning of a critical illness? What are their strengths and weaknesses? See the following reference for more information.

See the PACT module on Clinical outcome 

What methods exist to evaluate the effectiveness, benefits, risks and burdens of the treatments we use in our intensive care practice?

Although it is often difficult to determine which patients are 'too sick' or 'too well' to benefit from ICU, patients in the middle range severity scores seem to benefit most from ICU care. There are also data to suggest that the greatest ICU benefit is early.

The following references contain some recommendations concerning ICU admission and discharge policies in the USA.

Sometimes an ICU bed is not available within the hospital for a patient who needs one. One solution is to transfer a patient to another hospital with spare capacity.

What criteria might be relevant in deciding which patient should be transferred to another facility?

Major disasters have the potential to produce a large number of seriously ill patients and triage will be essential. Patients are prioritised as follows:

1. Needing immediate treatment to save life2. Needing treatment to stabilise before transfer to a suitable facility3. Treatment may be delayed4. Injuries incompatible with survival

Every hospital should have a 'Mass Casualty' plan which details how staff will respond in an organised and efficient manner. Intensive care staff will have a key role to play.

Does your ICU have admission and discharge policies? Study them. Familiarise yourself with your hospital's contingency plans for a disaster producing large numbers of casualties. Who will be responsible for triage decisions?

If a patient with incurable disease has been identified as inappropriate for resuscitation attempts, does logic demand that the patient is automatically inappropriate for intensive care?

When considering the above question, you may have noted that persons with no prospect of benefiting because they are brain dead, or soon to become brain dead are sometimes admitted to ICU when one of the considerations is the preservation of organs for possible beating-heart donation. It is usual to argue that the admission to intensive care was necessary to give the patient any possible chance of recovery, especially before the diagnosis has been fully confirmed.

THINK Is it morally wrong to treat a sick person in the interests of another? Is this another area where law and ethics are different?

The decision to initiate life support and to admit a patient to intensive care is one which must often be made with limited time for reflection on the appropriateness of treatment, and it is proper that the presumption should at all times be in favour of life. That presumption is, however, rebuttable at any time after treatment has been initiated.

Organ donors

After careful counselling, relatives may in most countries donate non-vital organs or tissues to a family member in need of, for example, a kidney or lung lobe. Even unrelated persons may in certain circumstances be allowed to make altruistic donations.

Payments to unrelated organ donors are common in some countries. What are the arguments for and against this practice?

A beating heart for transplantation can only be obtained from a donor who has been diagnosed as dead by brain function tests. In practice, brain-dead heart beating donors are the major source of all organs for transplantation. In an attempt to narrow the tragic gap between organ supply and demand, other potential sources have been examined. Such patients may use Intensive Care services. See the following reference for further information.

See the PACT module on Organ donation and transplantation 

Non-heart beating organ donors

The traditional triad of death is:

Unresponsiveness Apnoea Absence of cardiac output

It is known that spontaneous recovery of absent circulation can rarely occur up to about a minute after it has ceased. After two minutes it becomes extremely unlikely that spontaneous recovery will occur, even though resuscitative attempts may still restart the circulation and brain function. After five minutes of 'death', even resuscitative efforts are likely to be unsuccessful, and after ten minutes of absent circulation (at normal body temperature) death is generally to be regarded as irreversible. At what point then is it acceptable to diagnose death and proceed to recovery of organs for transplantation?

The issue is of course controversial. American professional ethical guidance recommends that death should diagnosed not earlier than two minutes and not later than five minutes after cessation of circulation.

A method has been developed in Sweden for securing lungs for transplantation from a non-heart beating donor on the ICU.

Brain death

In 1968, shortly after Christian Barnard had performed the world's first heart transplant operations in South Africa, an Ad Hoc Committee of the Harvard Medical School proposed the definition of a state of irreversible coma to be called brain death. Today, some countries have laws expressly defining death as the permanent cessation of brain function, while others rely on responsible medical practice to define the condition to be called death. In the United Kingdom, death was redefined by the Department of Health in 1998 as the 'irreversible loss of the capacity for consciousness, combined with irreversible loss of the capacity to breathe', the clinical test to be the absence of brain-stem function, regardless of whether other parts of the brain remain functional. In other European countries, absence of all brain functions is the standard, and confirmatory tests such as electro-encephalography or trans-cranial Doppler flow studies may be strongly recommended or required. A (not unintended) consequence of such definitions of death is the availability of beating-heart cadavers in the intensive care unit which are an ideal source of organs for transplant.

The idea that the permanent cessation of brain function is the essence of death has almost universal acceptance

The following articles discuss concepts of brain death. The Australia New Zealand Intensive Care Society guidelines on Brain Death and Organ Donation (see website below) provide a comprehensive approach to this area with an emphasis on practical implications for ICM practice.

See also the PACT module on Traumatic brain injury 

In Austria and Belgium, organs may be taken from the deceased without family approval so long as the deceased had not lodged an objection in his lifetime. This approach is called presumed consent, and it is supposed that it maximises organ availability. In most other countries, organ donation proceeds only with the pre stated consent of the patient or, in the knowledge of the patient's preferences or values, with the assent of the family.

Each country will have standards of practice and laws surrounding organ donation and transplant. You must be familiar with those of your own state or country. In many if not all jurisdictions, it is necessary to inform the coroner (or corresponding representative of the state) of the proposal to remove organs for transplantation. Jurisdiction over the body is likely to belong with the state and it may require, for example in the case of unexplained or violent death, that there is compliance with any requirements there may be for a formal (legal) post

mortem exam.

Clinical research

Research subjects cannot be presumed to benefit from their involvement, and the primary purpose of enrolling them is to gain information for the advancement of science. There is an undoubted public interest in the advancement of science, and so the subject is being altruistic if he consents to participate. Critically ill patients are almost by definition lacking the capacity to make a choice, and neo- Kantian bioethicists will quote a formulation of the Categorical Imperative, that we must not treat others merely as a means to an end, but always regard them as an end in themselves. Thus the Declaration of Helsinki demands that patients give informed consent to research participation.

Medical progress is based on research which ultimately must rest in part on experimentation involving human subjects

How then can we conduct experiments on patients who lack decision-making capacity? The most obvious device is to seek and obtain consent from a proxy or surrogate decision-maker recognised by national law, but evidence suggests that proxies do not always choose as the subject would. This model is suitable for experiments which must be initiated within an hour or two (or longer) of presentation to the hospital or intensive care unit, and this method is often approved by Research Ethics Committees or Review Boards.

For some research, such as 'cardiac arrest' therapies, there is no time to obtain any kind of consent. In such cases Ethics Review Boards may grant a waiver of consent, but they will often stipulate that the patient or his proxy must be informed of the experiment at the earliest opportunity, and be given the opportunity to withdraw from the study if that is their wish. For trials that are observational or of only minimal risk to the subject, Ethics Review Boards could exercise their discretion to allow a waiver of consent. Indeed, if 'minimal risk' is interpreted as meaning 'minimal incremental risk' a waiver of consent could even be offered to trials involving invasive experimental treatments where the standard treatment is similarly invasive. The scope of this approach will depend very much on the culture and law of the country and the inclination of the Board members concerned. Council Directive 2001/20/EC requires European Union (EU) member states to have in place laws, regulations and administrative processes regulating clinical trials by May 2004.

Good Clinical Practice (GCP) is a standard for the design, conduct, performance, monitoring, auditing, recording, analysis, and reporting of clinical trials. Compliance with this standard assures that the data and reported results are credible and accurate and that the rights, safety, and well-being of trial subjects are protected

What are the ethical justifications for research on critically-ill children?

THINK Treatments which we do not know to be beneficial for our patients cannot be said to be necessary and therefore ought to be considered investigational or experimental. Should the standards of research be applied to such clinical practices?

If there is a research project going on in your ICU, ask to see the detailed protocol. How are consent issues dealt with? Examine the ICH Tripartite Guideline for Good Clinical Practice - see link below (under Guidelines/Efficacy topics/Good Clinical Practice) and

look at how the guidelines translate into practice in the trial protocol.

Breaching confidentiality

It is accepted that personal information must be exchanged amongst members of the treating team in order to deliver the best care to the patient, but outside the immediate therapeutic field the patient's right to privacy should be respected and only breached when the patient agrees to it, or when the public interest demands it. Though clinical data may reasonably be shared with other professionals who 'need to know', there will be some applications of the data, and some information of specially sensitive nature, which should be discussed with the patient before they are imparted. You should make reasonable attempts to anonymise clinical data for publication, and consider whether consent should be obtained where a patient might be identifiable from a case report. It has become customary to share a reasonable amount of the patient's personal information with concerned family, and sometimes even friends. But how much, and what type of information is it reasonable to divulge? Some medical matters, especially those related to sexuality and reproduction, are widely regarded as more 'private' than others. The doctor must use his discretion, and if challenged by the patient, must justify his actions.

If you discover that a patient has committed, or intends to commit, a serious crime, you may be justified in reporting that fact to an appropriate authority. But how serious would the crime have to be? This may be a difficult decision, and you would be well advised to share it with a respected colleague.

What factors would you take into account when deciding whether or not to inform the authorities that your patient confided with you that he had killed his wife before taking a potentially lethal overdose?

If you discover that your patient's health poses a risk to other people, and the patient cannot or will not consent to advising the person(s) at risk, you will have to balance your duty to respect confidentiality against your duty to protect people from avoidable harm.

What factors would you take into account when deciding whether or not to inform the spouse of your patient that the patient has a venereal disease?

Unintended harms

Errors and accidents

The realisation that well-intentioned treatment can have deleterious effects has long been recognised, but the scale of the harm revealed in a US study alerted international interest in the science of critical incidents and adverse events. Though human error is inevitable and often plays a part in 'active errors', of more practical value is the realisation that many incidents and events could be avoided if weaknesses in the system were addressed (the 'latent errors'). Deciding whether or how to inform the patient or her family that there has been an error in the delivery of care, particularly where that error results in death or permanent disability, can pose very difficult ethical dilemmas.

Prevention of adverse events can be likened to the prevention of malaria; active errors are the mosquitoes, but latent errors are the swamps; if we drain them, there are far fewer mosquitoes!

The following references give details about the science of error in medical practice.

The papers below examine, with examples, ethical dilemmas in the handling of errors. Attitudes to reporting incidents or errors vary.

THINK about some of the complications that have arisen in treatments you have administered. How did they affect the patient's progress? Could they have been avoided?

Look carefully for critical incidents and adverse events on your ICU for a one-week period. What proportion of patients are involved? Are patients or their families informed of medical errors?

Harm by unproven 'treatments'Of further concern in the intensive care environment is the fact that the evidence- base for many of the treatments we offer is flimsy, and many 'recommended' treatments have later been shown to be at best expensive and ineffective, at worst unquestionably harmful. In most of these cases, therapies have been given because they bring about a 'physiological' improvement in the patient's condition, and it was presumed that this would lead to a better prospect of recovery. We now know that this presumption is not infrequently wrong.

Some of the treatments we prescribe are ineffective or even harmful

THINK What is known about the effectiveness of some of the treatments you routinely use in your ICU? Perhaps you use early percutaneous tracheostomies rather than continue with tracheal intubation, or administer dopamine to oliguric patients to prevent renal failure, or add nitric oxide to the inspired gas of hypoxaemic patients. Are you confident that they are not more harmful than no treatment?

You can find further information about cost-effectiveness in the PACT module on Quality assurance and cost-effectiveness 

CONCLUSION

You have now completed the four tasks of this module. You should now be able to:

Identify ways of approaching difficult cases. Explain approaches which respect the autonomy of the patient in reaching therapeutic

decisions. Recognise ways of tackling problems of consent to both treatment and research. Identify issues of public concern. Describe your duties to patients in dealing with unintended harm.

You should have an:

Improved theoretical background to the practical ethical issues of intensive care. Improved knowledge of, and access to, decision-making resources e.g. Ethical and

Practice Guidelines which are applicable to ICM practice.

You can test your knowledge with the self-assessment questions.

PATIENT CHALLENGES

Adriana is a 57-year-old widow and retired nurse with a worsening polyneuropathy. She is finding it increasingly difficult to breathe but is alert, and has been referred for your opinion. You advise intensive care admission for intubation and assisted ventilation, but Adriana says she does not want that. Though she values her life, she does not wish to be dependent on a ventilator.

Learning issues  

 Voluntary treatment; informed consent

What information does a person need to make a treatment choice?

 Refusal of treatment

You explain the possibility and limitations of assisted ventilation by face mask (NIPPV). Adriana agrees to be admitted to the ICU for NIPPV but reminds you that under no circumstance does she wish to have her trachea intubated. You make a note of this discussion in her medical record. On the ICU, Adriana is becoming drowsy and hypercarbic in spite of NIPPV. You talk to her again about treatment choices.

Learning issues  

 Advance directives

How will you ascertain whether Adriana is competent to accept or refuse treatment?

NOTEConsider the tools you use to assess conscious level and orientation.

 Decision-making capacity  Acts and omissions at the end of life; the Doctrine of double effect

Adriana reminds you of your first conversation with her and insists she will not change her mind. Moreover, she wants you to record her refusal of attempts at resuscitation if her breathing stops. She thanks you for your efforts and asks you if you can give her some morphine to ease her dyspnoea.

Learning issues  

 Treating for comfort at the end of life  PACT module on Sedation

Is it appropriate to give palliative care to a person who could benefit from curative treatment but refuses it?

NOTEAnglo-American law is clear that the wishes of a competent adult must be respected, even if to do so results in avoidable death.

Albert underwent elective surgery four days ago. The findings were not good; he and his wife were told that his chance of 1-year survival is only 50%. His condition deteriorated rapidly today and septic shock as a complication of surgery was diagnosed. You arrange to admit him to the ICU, but his wife is reluctant to agree; just yesterday he was told that he is dying, and now you are talking about intensive care!

Learning issues  

 Non-voluntary treatment for the adult patient who lacks decision-making capacity

Is it inappropriate to provide intensive care for a patient with limited life expectancy?

Learning issues  

 Predicting outcome 

 PACT module on Clinical Outcome

If Albert is not capable of making treatment decisions, how are such decisions to be made on his

behalf?

Albert is admitted to the ICU and treatment initiated. The research fellow points out that Albert fulfils the eligibility criteria for enrolment in a placebo-controlled trial of the drug 'pharmatox'.

Learning issues

 

 Clinical Research

How do we get agreement to conduct research on patients who lack decision-making capacity?

Thirty minutes after placing a subclavian catheter for administration of the trial medication it becomes clear he has suffered an iatrogenic pneumothorax. After several minutes of profound hypotension, a period of external cardiac massage, and the placement of a thoracostomy tube, Albert's condition is stabilised.

Learning issues  

 Errors and accidents

What actions are indicated after an error or complication of treatment?

Albert's condition improved a little over the next two days, but on day 3 of this ICU episode various organ systems became increasingly dysfunctional. It is now day 6; he has multi-organ dysfunctions/failures, and the senior intensive care specialist opines that the prognosis for recovery is very poor.

Learning issues  

 Futility, the appropriateness and advisability of treatment

How do we deal with questions of appropriateness or advisability of continued treatment in patients without decision-making capacity?

Learning issues  

 Which treatments can we limit?

A DNACPR order was made, and it was decided that renal replacement therapy would not be in Albert's best interests if renal failure became established. Albert's condition began to improve. Limitation orders were reviewed, but it was decided that the withhold orders should remain in place. By day 12 Albert was ready for extubation, and he was discharged from ICU on day 15.

Learning issues  

 Withholding attempts at cardiopulmonary resuscitation

What are the outstanding issues?

Isobel is an unmarried 20-year-old student. She was on her way to the hospital to undergo termination of an unwanted pregnancy when a car driven by an alcohol-intoxicated woman left the road and struck her. She was admitted to intensive care for further treatment of a severe head injury. Her parents have arrived at the hospital, and wish to be told about her condition.

Learning issues  

 Breaching confidentiality

You will of course explain the extent of Isobel's injuries and the purpose of treatment to her parents, but will you tell them about the pregnancy?

Learning issues  

 The unborn child - treating a pregnant woman

She has now lost all clinical signs of brain-stem activity, though her urine output is normal and her electroencephalograph is not isoelectric. Tests in accordance with the national standards for determination of brain death confirm the diagnosis. Isobel's name appears on the organ donor register. You raise the subject of organ donation with Isobel's mother and father. They are clearly distressed and say they could not possibly allow any further intrusions on Isobel's body.

Learning issues  

 Brain death 

 See the PACT module on Traumatic brain injury

NOTEMisdiagnoses of brain death have been reported; they reflect poor or even criminal practice and are clearly unacceptable.

Will you respect their refusal?

Isobel's mother and father want to respect her wishes, and will agree to organ donation but only on condition that her organs are not given to someone with a history of alcoholism or drink-driving conviction. You fail to change their minds on this pre-condition.

Learning issues  

 Organ donation  See the PACT module on Organ donation and transplantation

Will you accept their pre-condition?

Baby C suffered from a neurodegenerative disorder, and at the age of 14 months was intubated and ventilated for respiratory insufficiency. However, it soon became apparent to the attending medical staff that nothing more could be done to restore C's ability to breathe for herself, and that her death was inevitable.

Learning issues  

 Decision-making: Children

How do we make decisions for a child who has never had decision-making capacity?

NOTERecall the two methods for decision making in adults who lack decision-making capacity.

Of value in their deliberations was a publication from their Professional College in which they found the advice that 'where the child has such severe disease that life-sustaining treatment simply delays death without significant alleviation of suffering, medical treatment may be deemed inappropriate.' Certainly, that advice was consistent with custom and practice in that intensive care unit, and in other ICUs which various staff members had worked in previously. Multidisciplinary discussions showed a consensus amongst the care providers that the correct course of action was to withdraw ventilation. Her parents, however, were concerned that this withdrawal might lead to C's death. Further, the health professionals proposed that if C was unable to breathe for herself she would not be reintubated and reventilated. After deliberation and taking religious advice the parents concluded that they could not consent to any act which shortened C's life, even if the death was an unintended but inevitable consequence of an action taken primarily to ease baby C's suffering.

Learning issues  

 Achieving consensus

 Professional custom, practice and ethical guidelines 

 Faiths and cultures

How should we resolve situations in which health care providers and the patient (or her advocates) cannot agree on the correct course of action?

Learning issues  

 Clinical ethics consultations

The medical staff, unable to agree to re-intubation and ventilation in the event of a failed extubation, sought a judicial ruling. After listening sympathetically to representations from all the parties involved, the Judge declared that 'There be leave to treat C as advised by her doctors, such treatment to include the withdrawal of artificial ventilation and non-resuscitation in the event of a respiratory arrest and palliative care to ease her suffering and permit her life to end peacefully and with dignity, such treatment being in C's best interests.'

Learning issues  

 Withdrawal of mechanical ventilation

NOTEThis case is based on English law. Compare and contrast the American case of Baby K, and the French experience.

On reflection, it seems unsatisfactory that law should be applied to resolve difficult choices for doctors and their patients. Communication, consultation, deliberation, and negotiation are all skills

worth developing. We hope you will agree that seeking the decision of a court of law should be a last resort.

Q1. Which of the following are Beauchamp and Childress' four ethical principles?

A. To respect the autonomy of a patient True

False

B. Beneficence True

False

C. To respect the sanctity of life True

False

D. To avoid harm to a patient True

False

E. Justice True

False

Q2. Concerning advance directives

A. Encouraging patients to make advance directives reduces inappropriate utilisation of intensive care at the end of life.

True

False

B. Advance directives should be respected even if refusal of treatment leads to an avoidable death.

True

False

C. Advance directives are not binding unless signed by the patient in the presence of a witness.

True

False

D. The doctor who administers a medication with intention to cause death will be immune from prosecution if it was in accordance with the patient's directive.

True

False

E. A parent or spouse may draw up an advance directive on behalf of an adult who lacks decision-making capacity.

True

False

Q3. Concerning research in the ICU on adults who lack decision-making capacity

A. It is usual to proceed on the basis of presumed consent, and then confirm consent from the patient when s/he regains decision-making capacity.

True

False

B. Women of reproductive capacity should not be enrolled in drug trials. True

False

C. People whose first language is not the national language of the country in which the study takes place should be excluded.

True

False

D. Only trials of novel investigational drug therapies need to be submitted to a research ethics committee.

True

False

E. Only studies into the condition from which the patient is suffering should be performed on patients unable to give consent.

True

False

Q4. When the family of a critically ill adult patient reject the advice of the senior consulting physician

A. The physician should step down and ask a colleague to take over the case. True

False

B. An ethics committee (where available) should decide on behalf of the patient. True

False

C. The physician should inform the hospital lawyers and ask them to make a guardianship order over the patient.

True

False

D. The physician should try to keep open a dialogue but should continue to treat Tru Fals

the patient according to his assessment of the patient's best interests. e eE. The physician should keep the patient alive by all means until the dispute is resolved.

True

False

Q5. Kidneys for transplant may be

A. Donated by comatose patients who have made an advance directive to undergo donation under general anaesthesia.

True

False

B. Excised two or more minutes after death has been diagnosed by standard criteria of unresponsiveness, apnoea and absence or arterial pulse.

True

False

C. Protected from hypoxia by intubating and ventilating patients dying from intracranial haemorrhage.

True

False

D. Procured from a healthy consenting family member of the patient (live related donation).

True

False

E. Given only to certain persons or classes of persons approved by the donor, when the donor or his family wish to make donation conditional.

True

False