2 Ethics and decision making

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When you have completed this chapter you should be able to:

  1. Define morals and ethics.
  2. Understand children’s rights.
  3. Describe the importance of medical ethics in children’s palliative care.
  4. Recognise an ethical dilemma.
  5. Understand why it is important to manage an ethical dilemma well.
  6. Know who should be involved in decision making for children in palliative care.
  7. Use an ethical framework to address an ethical dilemma.
  8. Make an ethical plan.

Medical ethics in children’s palliative care

2-1 What are morals and ethics?

Ethics and morals are about ‘right’ and ‘wrong’ behaviour:

Morals are an internal compass based on personal beliefs while ethics are a set of external rules.

The word ethics is derived from the Greek word ‘ethos’ meaning ‘character’ and morality is derived from the Latin word ‘moralis’ meaning ‘custom’.

2-2 What are medical ethics?

Medical ethics is the study of values and judgements as they apply to medicine in order to decide what is right (good) and what is wrong (bad).

‘Ethics is the study of the rational process for determining the best course of action in the case of conflicting choices.’ (Howard Brody, MD 1976)

2-3 What are children’s rights in palliative care?

Children’s rights are human rights as they apply to children. Children’s rights recognise that they need more protection than adults do because they depend on adults for care. This dependency makes children more vulnerable to abuse and exploitation if no one stands up for them. The United Nations Organisation stated that ‘childhood is entitled to special care and assistance’ and laid this out in a Convention on the Rights of the Child that was adopted by the United Nations General Assembly in 1989.

Although this convention does not specifically use the words ‘palliative care’, realising the rights mentioned in the Open Society Foundations fact sheet help to ensure that the goals of palliative care for children with life-limiting or life-threatening illnesses are met.

Children have a right to palliative care that is outlined in the United Nations Convention on the Rights of the Child.

The following articles on the Rights of the Child, from the Open Society Foundations fact sheet on Children’s Palliative Care and Human Rights, are relevant to children’s palliative care:
  • Article 2 (non-discrimination): includes the prohibition of discrimination on the grounds of age, e.g. children must not receive inferior pain treatment to adults
  • Article 3 (best interest): the best interest of the child must be a primary consideration in the provision of palliative care
  • Article 6 (right to development): children need support for physical, emotional, intellectual, social, cultural, and spiritual development
  • Article 12 (right to be heard): the views of the child should be taken into account and given due weight according to their age and stage of development. This includes the right to participation in decision making based on their capacity.
  • Article 13 (right to information): children must receive accurate information about their illness and symptoms
  • Article 24 (right to health): governments must ensure that palliative care for children is available, accessible, acceptable, and of good quality
  • Article 28 (right to education): education is part of a child’s optimal development and should be integrated in the provision of palliative care
  • Article 31 (right to play): children have the right to leisure, to engage in play and recreational activities, which should be included in palliative care provisions
  • Article 37 (freedom from torture): no child shall be subjected to torture or other cruel, inhuman or degrading treatment or punishment, such as denial of pain relief.

2-4 Why are ethics important in children’s palliative care?

There are many decisions that have to be made in treating children with life-limiting and life-threatening illnesses. These include life and death decisions, such as whether or not to withhold or withdraw certain treatments. Decisions also need to be made about what to tell or not to tell the child depending on their age.

All children are vulnerable and those with disability even more so. Moreover, decisions are made for children by others (by proxy), who are usually their parents or other caregivers. Sometimes doctors adopt a more paternalistic approach and tell the parents what to do and sometimes parents, who are influenced by their emotions and their fear of losing the child, will tell the doctors what to do. There is a significant risk that decisions may not necessarily be made in the best interest of the child and that the child may not have a say in this. It is therefore important that an ethical framework be applied to decision making in children’s palliative care.

Good ethical frameworks are needed in children’s palliative care to avoid going down a ‘slippery slope’. This means that if we allow something that borders on being morally or ethically wrong now, it makes it easier for us to make decisions that are even worse the next time we face such a dilemma.

Ethics is important in children’s palliative care because there are often life and death decisions to be made and emotions can cloud judgement.

‘Nowhere are the concepts of an ethic of care, human ethics, human rights and human responsibilities more important than in relation to human dying’ (Margaret Somerville)

Ethical dilemmas

2-5 What is an ethical dilemma?

An ethical dilemma is a ‘situation in which a difficult choice has to be made between two courses of action, either of which could entail going against a moral principle’. Sometimes there seems to be no right answer and we need to decide on the best course of action for the child concerned in the context of their family and the resource constraints of the health service.

Often in ethics there is no right or wrong answer but we need to find the best answer for the child and family.

2-6 What is a good decision?

A good decision is one that has been carefully made, taking into consideration all available information and the opinions of all involved in making the decision, including the child where appropriate. A good decision always has the best interest of the child at heart.

A good decision is based on five factors:

These five factors are based on the Ideal Observer Theory which is a useful framework to help decide whether or not the best possible decision has been made.

2-7 How do bad decisions impact on the child in palliative care?

A bad decision could have the following impact on a child with a life-limiting or life-threatening illness:

2-8 How do bad decisions impact on the family in children’s palliative care?

A bad decision for the child’s family could be one that:

Bad decisions impact not only on the child but have repercussions for the whole family including the siblings.

2-9 How do bad decisions impact on the healthcare professional and the healthcare system?

Bad decisions can cause moral distress in healthcare professionals. Moral distress is the experience of psychological distress that occurs when a healthcare professional is involved in a decision which conflicts with their own morals or beliefs. For example, decisions made on the basis of rationing of scarce resources can cause severe moral distress especially if the healthcare professional knows that the child may not have died in a well-resourced setting. Prolonged exposure to moral distress can lead to burnout and compassion fatigue.

Moral distress may occur frequently in the palliative care setting, especially amongst young or inexperienced healthcare workers. Death is often regarded as a failure and, where it is managed poorly, it can have a long-lasting negative impact on the grief experience of family and healthcare professionals alike. Coming to terms with the fact that death is an inevitable outcome for some children with life-limiting and life-threatening illness and addressing one’s own personal fears around death and dying is essential for any healthcare professional working with children.

Making decisions for children in palliative care

2- 10 Who should make decisions for children?

Children have a right to participate in decision making regarding their healthcare and treatment depending on their level of competence and understanding. Where children are too young or unable to make decisions, then decisions need to be made for them usually by their parents or legal guardians. In an emergency when these decision makers cannot be reached, the superintendent of a hospital may have to give consent for urgent life-saving treatment.

Under the South African Children’s Act of 2005:

A child aged 12 or more who is mature enough to understand the risks and benefits of medical treatment may give consent for the treatment but needs to be assisted by his or her parent to consent for surgery.

To be deemed competent to make a decision about medical treatment a child needs to understand the information presented, needs to understand the consequences of making a decision either for or against the treatment and needs to be able to communicate their choice.

2-11 How should we balance the burden of decision making?

Ideally the burden of decision making in children with life-limiting or life-threatening illnesses should be shared between the doctors, the child’s family and the child where appropriate.

It is not good for the child and family to make all decisions on their own. Equally, it is not good for doctors to tell patients and children what to do. A middle ground needs to be reached where the burden of decision making is balanced. This may not be a 50:50 split for all families. Some families may want to have a greater say in the final decision and others may want the doctor to bear a greater burden for the decision making, especially if the decision is complex and involves life or death choices. It’s not fair when doctors are undecided on the best course of action to take to place the full burden of making the final decision on the parents as they will have to live with this decision for the rest of their lives. Equally, the parents may blame a doctor for the outcome of a decision if they were not fully informed and didn’t understand the consequences of the choice being made. The only way to achieve a balance between these two extremes is for good communication to take place between both parties so that everyone understands where the other person is coming from. Doctors and healthcare workers need to respect the child and family’s wishes but need to balance this with what’s good for the child. The viewpoint of the family should be heard and respected even if it is contrary to the beliefs of the treating professional.

The burden of decision making in children’s palliative care needs to be shared between the healthcare team and the family depending on the family’s capacity to share the decision and provided that decisions made are in the best interest of the child.

Sometimes doctors are forced to make decisions based on the rationing of scarce resources for the greater good (distributive justice) that may not respect the autonomy of the child or patient and can cause moral distress to the practitioner.

2-12 How do we involve children in decision making?

Children have a right to participate in decision making regarding their health. Even if they are not yet legally competent to make decisions, their disease and treatment options should be explained to them in a way they can understand.

We should avoid giving too much information, as this may be frightening to the child, but we should also avoid giving too little information, as this may leave the child feeling afraid and not understanding what is happening. The best way to do this is to provide an adequate explanation in language that the child understands and allows the child to ask questions. The child’s parent or caregiver should be involved and agree to this process. Parents generally want to protect their child from difficult news but experience has shown that children often know a lot more than what we may think.

There are a number of useful tips that can be used to help explain the child’s illness to him or her. These include:

Children should ideally be involved in discussions, where age appropriate, from the beginning and not only when difficult decisions need to be made.

Children need to be involved in decision making regarding their care and we should find ways to explain what is happening to them using language they understand and finding creative ways to make things clearer to them.

Sometimes other children with the same condition, who understand what is happening to them, may be helpful to explain the condition to another child.

Making an ethical plan

2-13 What is needed to make an ethical decision?

Figure 2-1: A plan to make an ethical decision.

Figure 2-1: A plan to make an ethical decision.

When faced with a difficult decision that presents an ethical dilemma we will need to collect information, analyse it and come up with a plan, even when there seems to be no ideal solution. This plan may need to change depending on new developments or new information.

In order to make a good decision all available information about the child’s condition and the family context needs to be collected. Sometimes further investigations need to be made to make the best-informed decision. The information may include:

All available information about the child’s condition needs to be collected to help make decisions in the best interest of the child in the context of the healthcare setting and the family’s circumstances.

In rare instances, we may not know the diagnosis, or the diagnostic test may be too expensive or not available in the healthcare setting. Reasonable attempts need to be made to try and determine what the condition is but when this is not possible decisions may need to be made based on what is happening to the child, what can be changed and what can’t. The level of suffering and whether or not the child is getting better with the treatment provided should be taken into consideration.

2-14 Who do we need to collect this information from?

We need to collect information from all the healthcare professionals involved in caring for the child and also from the child and family themselves. Sometimes professionals have information in different places (e.g. a separate social work file) and this all needs to be considered. Often in children’s palliative care this may call for an interdisciplinary or a family meeting. Sometimes a home visit needs to be done to assess the family’s situation.

2-15 How do we ensure that the plan is in the best interests of the child?

Usually the best interest of the child is determined by weighing the risks against the benefits of the decision on a child’s body, mind and spirit.

Dr Gerri Frager, a Canadian paediatric palliative care doctor, came up with a useful set of questions to decide what treatment decision would be in the best interest of the child. These questions are:

Another way to look at the treatment choices is to create a ‘decision-making box (matrix)’. This may help reach the best option.


Figure 2-2: A decision-making box.

To determine what decision is in the child’s best interest we need to evaluate body, mind and spirit.

When decisions are complex or where there is conflict between what the parents and healthcare professionals want, sometimes an ethics committee and even a court of law need to be involved in determining the best interest of the child.

2-16 How do we make sure that we make the same decision in similar cases?

In order to be fair, similar decisions need to be made in similar cases. The best way to do this is to collect information on children who have been cared for in the healthcare setting and to look at what decisions were made and how these were made. Information on cases in healthcare settings with similar resources could also be collected to inform decision making. Decision making, however, does need to be individualised and made respecting the child and family’s wishes, but it would not be fair to offer some children more than others in the same facility.

2-17 How do we make sure there are no hidden motives in the decision making?

We are all human and are driven by thoughts and emotions that may lead us to make certain decisions for certain children and families that may not be in the child’s best interest. Sometimes we can be driven by motives that are not necessarily right. We may also be under pressure from other people. We may have a vested interest in an outcome for example, if a child is on a trial of a particular drug or if we want to prove that we are the best healthcare professional with the lowest mortality statistics.

Useful questions to determine our motives in decision making are:

2-18 What is an ethical framework?

In order to make decisions that are ethically sound an ethical framework is useful to evaluate the decision. An ethical framework is a guide that can be used to check the decision against important principles.

The most commonly used ethical framework was proposed by Beauchamp and Childress. These ethical principles are:

Ethical principles are useful for making ethical decisions in healthcare. These principles include autonomy, beneficence, non-maleficence and justice.

Some people believe that these ethical principles are very Western and do not accurately reflect how decisions are made in some cultures. In poorer settings, families often make decisions in the best interest of the family and not necessarily the interest of the child. For example, they may decide to forgo treatment for a single child if it impacts negatively on the whole family especially economically or from a child-caring perspective.

2-19 When is it ethically possible to consider withdrawing or withholding life-sustaining treatment?

There are instances where it is morally acceptable to withhold (not start) or withdraw (stop) life-sustaining treatment. There is no ethical difference in the two processes as they both have the same potential outcome. It is, however, often difficult for parents not to start treatment especially if this means that the child will die soon. It is equally difficult for healthcare professionals to stop treatment as this may feel like their actions are directly responsible for the child’s death.

The Royal College of Paediatrics and Child Health (UK) have set out guidelines as to when withdrawing or withholding life-sustaining treatments could be considered:

2-20 Is there an ethical difference between withholding and withdrawing treatment?

Ethically there is no difference between not starting and stopping treatment. Not starting treatment is especially difficult for parents while stopping treatment is particularly difficult for the health professionals.

There is no moral distinction between not starting or stopping treatment although the first option is more difficult for caregivers and the second more difficult for professionals.

Withholding or withdrawing treatment is not euthanasia as the action allows the child to die naturally. Euthanasia is the active termination of life often through lethal injection of a drug in high doses that will cause the patient to lose consciousness and stop breathing. Euthanasia is not legal in South Africa and is not part of palliative care practice. With good palliative care practice, suffering should be relieved so that the patient and family does not have to feel like they need to ‘end the suffering’ through active means.

2-21 What are life-sustaining treatments?

Life-sustaining treatments are treatments that, if stopped in a critically ill child, would likely (although not always) lead to the death of the child. These include mechanical ventilation, dialysis, antibiotics, blood transfusions, parenteral nutrition and inotropes (to maintain the blood pressure).

Case study 1

Andrea is 39-years-old and 23 weeks pregnant with her first baby. Her 20 week ultrasound scan shows multiple congenital abnormalities including cleft lip and palate, a minor heart abnormality and bilateral clubbed feet. Andrea is offered an amniocentesis and counselled about a termination of pregnancy (TOP). She declines both the amniocentesis and the TOP on the basis of her Christian beliefs. Her husband disagrees with her decision and doesn’t want her to continue with this pregnancy.

1. Why is this an ethical dilemma?

Because a difficult choice has to be made between two possible courses of action (TOP or let the pregnancy continue). Sometimes there seems to be no right answer and we need to decide on the best course of action for the fetus or child concerned in the context of their family and the available resources of the health service.

2. Why would many health workers agree with the mother rather than the father?

Because all the abnormalities could be corrected after birth if the resources were available.

3. What may be the emotions which result in the father’s wish to terminate the pregnancy?

He may be worrying about the suffering of the infant and the anxiety and stress to his wife. However, he may not want to face the expense, concern and inconvenience in his life. This is a common problem when a parent has to make important decisions on behalf of their fetus or young child (act as a ‘proxy’). It is important to attempt a non-emotional decision that is in the best interest of the child.

4. How do we manage the disagreement between the mother and the father?

We collect all the information about the medical problems and the management the infant will need after delivery in order to empower the parents so that they can agree, if possible, on the best course of action. A decision-making box (matrix) could be used to list the risks and benefits of TOP versus allowing the pregnancy to continue. We also give both the mother and the father the opportunity to express their views without judgement.

5. Would it not be much easier if the doctors decided on what was best?

No. Doctors can advise and give their opinion if asked but the final decision should be made by the parents.

Case study 2

Chloe is a 16-year-old girl with relapsed leukaemia. There are unfortunately no suitable bone marrow donors and the chemotherapy she is currently receiving is not working. Her parents want to enrol her on a clinical trial using a new, experimental drug but Chloe doesn’t want this.

1. What are Chloe’s rights?

Under the South African Child Act, children who are 12 years of age or older are legally competent to consent to medical treatment and have the right to make their own decision provided that they are able to understand the risks and benefits. Therefore, Chloe is old enough to have the right to decide on her management.

2. Should the parents not have the right to decide as they have to pay for the treatment?

It is very important to include the parents, and possibly other members of the family, in the discussions about what is the best treatment for Chloe. However, the final decision is hers. All the necessary information must be made available and the parents must be given time to think about their decision.

3. If it is decided that Chloe’s wishes are to be respected, what five factors can be used to justify this decision?

A good decision is based on five factors:

It appears that all five factors have been applied in Chloe’s case so her decision not to have the experimental drug is probably the best decision.

Case study 3

Zara is a 5-year-old with chronic kidney disease on renal dialysis. Initially she was thought to be a suitable candidate for a kidney transplant but recent changes in her social circumstances have taken her off the list. Her father has been arrested for drug trafficking and her mother has had a nervous breakdown and is no longer able to take care of her. She is currently in the care of her grandmother who struggles to bring her for dialysis. Should the extended family be able to support Zara and her grandmother, and the emotional status of her parents improve, it may be possible to get her back onto the transplant programme.

1. What are Zara’s rights?

As she is under the age of 12 she cannot make her own decision but will depend on others. However, it is very important that she should be allowed to express her opinion and, where appropriate, consider the options. As both parents are seriously emotionally stressed the other family members, especially the grandmother, should be included in the discussions.

2. Use Beauchamp and Childress’ principles to evaluate the decision to take her off the transplant list.

The main problem is that Zara has been taken off the transplant list not for medical but for family reasons. This does not seem fair to Zara.

The Beauchamp and Childress’ principles are:

3. How would you support Zara’s mother in this situation?

She needs to be counselled and emotionally supported so that she can play an active role in Zara’s care. She should be referred to colleagues who are trained in psychological care. A social worker should also be involved. Under the circumstances the legal and prison officials should also be approached to help Zara’s father play a role in her support. If Zara cannot be readmitted to the transplant list her parents and grandmother should have a full explanation about the decision and be helped to accept that Zara will die of her renal disease. She and her family must have access to good palliative care.

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