After reading this chapter you should understand:
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the ethics of palliative care in life-limiting conditions and in the withdrawal and withholding of care
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the application of nonpharmacological and pharmacological interventions in children
Two important aspects of palliative care are ethical issues and symptom control.
Ethical considerations in palliative care involve:
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medical decisions on investigations or treatment that have good and bad consequences
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decision regarding withdrawal or withholding treatment that may prolong life but not offer cure
Symptom control is a key part of palliative care and symptoms are:
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never just a physical event but occurs in a psychosocial and existential context
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unique to the patient and their circumstance and hence needs a holistic approach
At the end of life, it becomes even more important than at other times to preserve the quality of an individual’s experience of their life. The purpose of palliative care is not to delay death, but neither must it be to hasten it. The purpose of palliative care is to optimise a child’s comfort as far as is possible.
It is vital to remember that the first role of medicine is to care. When health care has no other medical therapies to offer, the child and family should not be abandoned to their experience but rather, as a matter of compassion, continue to accompany them.
Ethics
The principle of double effect
If a treatment is given, knowing beforehand that it could improve the clinical condition or symptom control but an unintended consequence is morbidity or death, then as long as the prime intention was to improve the condition of the patient, the clinician is acting professionally even if the unintended consequence does occur. However, if the intention is to hasten death, then the same treatment would not be acceptable and would be unethical and illegal.
While there is clearly a difference between foreknowledge (knowing that a consequence might happen) and intention (making that consequence the prime aim), in practice it is questionable to rely on that difference in deciding whether an action is right or wrong. Nevertheless, a clinical decision will usually have multiple possible consequences, of which some are more likely than others and it cannot reasonably be denied that it is possible for a doctor to intend only one of them.
Fortunately, in practice the risk of an adverse outcome such as death from medications used in palliative care is remote, providing they are used properly, and it is rarely necessary to have to trade the duration of patient’s life against its quality. Occasionally, however, that remote risk will happen and the clinical team may be faced with the knowledge that in intending the care and comfort of their patient, an intervention might have brought the child’s death closer. The important point is that prescribing at the end of life recognises hastening death is a possibility but is not the same as acting with an intention to end life.
When making decisions that will affect medical care of a child, parents and doctors have the same moral duty to avoid, as far as possible, inflicting suffering on a child. If the result of a medical decision would be to cause a child suffering that could be avoided, then it is a wrong decision. Parents are living through the darkest time in their lives, and it can be difficult to set aside a primal desire to keep a child alive as long as possible, even in the face of advice that an intervention is likely to do more harm than good. On the other hand, doctors must not confuse what is futile with what is harmful. If doctors feel an intervention should stop even when parents feel strongly that it should continue, they need to show that continuing it will cause more harm to the child than good.
Proportionality and directness
Proportionality
This principle states that any treatment given should be proportional to the stated intention. If morphine is started with intention of pain relief, then it should be at doses that are recommended for pain relief and not at excessively high doses which could suggest an intention to cause respiratory suppression.
Directness
An action cannot be justified if a good outcome is simply a side effect of a bad intention. A doctor could not give a drug that will actively cause a child’s death and then claim that by hastening that death, further pain and suffering has been avoided. Sparing suffering would not be the direct intention of the prescription.
Withdrawing versus withholding
There seems an obvious sense in which there can be no moral difference between withdrawing an intervention once it has started and deciding not to offer it in the first place. While that moral equivalence may be enough to help the clinician clarify their thinking, it is important to bear in mind that they are not entirely the same. There is no doubt that the two decisions feel different, and faced with a child who is gasping for breath, the decision not to start invasive ventilation can be difficult, especially if the child’s parents have expressed a strong preference that ‘everything should be done’. The wider impact on patient and family (and perhaps to the healthcare team too) is also morally relevant.
There can be a temptation to assume that, if withholding treatment would have been a reasonable option in the first place, a decision to withdraw it later is automatically justified. This is not necessarily true, because the circumstances might have changed in the meantime. A decision to withhold treatment should be made on the basis of what is best for the child, and the passage of time can change the balance of probable outcomes. Ventilation should not be withheld, for example, solely because a child is ‘palliative’ but because, at the moment the decision must be taken, the life-limiting condition means there will be no benefit from ventilation.
Withdrawing treatment that is already in place is always an active decision and is always a moral one, because someone has had to consider whether it was the right action to take. That is not always true when
Krabbe disease is a progressive neurological condition where a child becomes unaware of their surroundings, and death from respiratory failure typically occurs before the age of 18 months.
A 16-month-old girl is admitted to PICU for mechanical ventilation with increasing frequency over the previous months and each time takes longer for her to regain her baseline level of health. She presents again with signs of infection and respiratory failure and with oxygen saturations of 79% despite maximal face mask oxygen. The blood gas shows a pCO 2 of 11 kPa with a compensated respiratory acidosis. The opinion of the PICU consultant is that the child is dying and that intubation and ventilation are not appropriate, and this is explained to the parents. They respond that they want her to live for as long as is possible and they ask that she is intubated and ventilated.
Despite the fact that the consultant and the clinical team feel that ventilatory support is inappropriate, it is agreed that the young girl should be intubated and ventilated as the parents have not agreed to withhold treatment. While the situation might be futile it is not causing harm to the child and this intervention may prolong life but does not, in itself, result in suffering.
The process of making difficult decisions
A particular challenge facing paediatricians is how much authority the preferences of a child’s parents should carry when it comes to making medical decisions. Most of the time, parents and paediatricians work together in a collaborative relationship based on mutual trust and respect. Unfortunately, those relationships do not always develop smoothly, or they may be disrupted under the stress of the last phases of a child’s life. Parents may express strong preferences for a course of medical action that the doctors feel is not best for the child.
Doctors alone are not able to make a rational decision about what interventions are justified, because there are relevant things about the child that the doctors do not know. It is generally true that doctors know more about a specific illness, and even about the impact the illness on a child at a particular moment. But it is also true that there are other facts about the child that the parents know more about. Parents will typically know more about how much a child enjoys life when well, for example, and even be able to express some of what a child might choose if able to do so. Both sets of knowledge are equally relevant to making a decision about medical intervention that is morally correct.
Furthermore, doctors are not entirely disinterested figures. They have their own beliefs and make their own value judgements. Even when they are able to put those aside (as most do) when they are making a decision, doctors can feel under pressure to balance the needs of the child in front of them against the needs of hypothetical children they will see in the future. Parents are right that when it comes to medical decisions, doctors might be influenced in their decision making by factors that have nothing to do with their child. That is not usually true of parents and it would be hard to expect parents to consider the needs of children other than their own.
The contrary idea that when it comes to medical decision making over children, the role of doctors is simply to carry out parents’ preferences, and this usually flows from a certain understanding of autonomy. Again, there is some truth in that claim. It is true that parents have some rights over their children, though parental rights are strictly related to their duty to care.
Many parents assume they have the same sort of authority over decisions in respect of their child. That is not true. Adults are protected from having things done to them without their permission, but the moral imperative in respect of children is different. Children must be protected from interventions that will harm them. The duty to protect children from harm is no less for parents than it is for doctors, and parents are not allowed to want or to permit—still less to require—doctors to do things to their child that will do the child more harm than good. The interests of parents are important, but it is the interests of the child that are paramount, and an action that will cause significant harm to a child does not become a morally right action simply because parents prefer it.
End of life discussions: uncertainty and futility
The goal of discussions about medical interventions at the end of life is to establish what a child’s interests are and how they are best served. Parents and doctors each bring certain expertise to the discussion. Each of them knows something about the child’s interests and the impact of the disease and interventions. The purpose is to work together to estimate as far as possible what will, as a matter of fact, do the child ‘most good and least harm’.
The term ‘futile’ illustrates an important difference in the perspectives of parents and doctor. Properly understood, describing an intervention as ‘futile’ simply means it will do no good, but the term does not imply it will do harm. Some doctors might consider that a futile intervention is always wrong because it uses limited healthcare resources and by doing so harms another child. But, from the perspective of a parent, futility is not a good enough reason to withdraw or withhold an intervention. If parents are to agree with their recommendation, doctors must show that starting or continuing the intervention would harm their child.
Finally, it can be difficult for doctors to know how to balance the needs of the child against those of the parents. For paediatricians, it is the interests of the child that are paramount. If there is a clear and significant conflict between the interests of the child and those of their parents, the default position should always be to decide in favour of a child, and a ‘counsel of perfection’ would be that no child would ever have a treatment or intervention that was not justified on strictly medical grounds. Some of the harms that arise from a decision about a child might be trivial, but the harms to a family might be severe, and paediatricians do need to consider harm to a parents of the child.
Where the voices of parents and doctors remain at odds, expert mediation services are often able to help narrow the distance between them. In practice, however, the courts are often called upon to adjudicate on what is best for the child and use section 1 of the Children Act 1989:
“… when a court determines any question with respect to the upbringing of a child the child’s welfare shall be the court’s paramount consideration”.
Paediatric Palliative Care (PPC)
‘Together for Short Lives’ is a UK-based charity and describes palliative care as ‘…care for children and young people with life-limiting, or life-threatening conditions, and is an active and total approach to care, from the point of diagnosis, throughout the child’s life and death. It embraces physical, emotional, social and spiritual elements, and focuses on enhancement of the quality of life for the individual and support for the family. It includes the management of distressing symptoms, provision of short breaks and care through death and bereavement’.
This definition highlights the two key principles of caring for children with life-limiting or life-threatening conditions:
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PPC is active care—it does not represent a withdrawal of care
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PPC is total care—it does not focus on the medical or physical needs at the expense of nonmedical ones
Active palliative care is the antithesis of the idea that there is ‘nothing more we can do’ for a child whose life may be short. For the paediatrician, as a child approaches the end of life, symptoms and overall patient care can become increasingly complex, requiring a rigorous, rational approach with extensive planning and anticipation of a constantly evolving clinical picture.
Total palliative care emphasises assessment and management of the whole child—a holistic problem-solving framework in contrast to the more traditional pathophysiological paradigm.
Children who need palliative care
In children, life-limiting conditions (LLC) are conditions which make it likely that a child will not survive into adulthood, either because there is no cure or because there is a significant risk that potentially curative treatment will fail. Asking if one would be surprised if the child died before reaching adulthood may bring clarity to uncertainty, and a negative answer would indicate that the child has a life-limiting condition.
Life-limiting conditions have been grouped together ( Table 31.1 ) into categories to demonstrate the breadth and variety of conditions requiring palliative care in children in contrast with the predominantly cancer focus of the adult specialty.
