issues in paediatric palliative care
Bioethics involves the application of ethical principles to
medical practice and research. It is 'a line of intellectual
inquiry' which is said to 'begin where consensus ends'. A number of
theories exist as frameworks for the consideration of ethical
dilemmas but most require the consideration of four fundamental
- Autonomy - the right to self-determination
- Non-maleficence - the need to avoid harm
- Beneficence - the ability to do good
- Each principle may take precedence over another depending on
the circumstances and ethical theory employed.
In the context of palliative care, most dilemmas relate to
end-of-life care and decision-making. The child's inability to act
autonomously and subsequent reliance on their parents as surrogate
decision-makers complicates the resolution of these dilemmas in
In order to act autonomously, one must act with intention and
understanding and without controlling influences. In the medical
context, respect for autonomy involves not only allowing the
patient to make informed choices regarding their care but
facilitation of this process by ensuring they are well-informed and
free of conditions such as fear, pain and depression which may
compromise their capacity to make truly autonomous decisions. To
act autonomously, an individual must demonstrate an understanding
of their situation and the implications of their decisions. They
must also be able to communicate their decisions. Children
represent a continuum in this regard form the non-verbal infant to
the adolescent striving for self determination. A child's ability
to make informed choices depends not only on their developmental
level but on their life experience. For example, an eight year old
child with a chronic illness may through their own experiences and
those of their fellow patients be better positioned to participate
in decision-making than an older child with no previous medical
Children may be able to make some decisions about their medical
care even where major decisions are made by others. They may for
example, make choices regarding pain control and venipuncture
sites. Empowering children in this way gives them a sense of
control which impacts positively on their experience of care.
Furthermore, even when a child is not deemed sufficiently competent
to act autonomously, their preferences and insights may guide
decision making by others and should be sought actively.
Children progress through varying degrees of competence as they
grow, develop and acquire life experience. Their involvement in
decision-making is subject to their level of competence and this
must be judged on an individual basis (see Competence). Age is not
necessarily a good measure of capacity although an arbitrary
distinction is drawn for legal purposes.
Decision-making in the palliative care setting requires
- The ability to understand one's illness in physiological terms
and to conceptualise death as an irreversible phenomenon
- The capacity to reason and consider future implications (formal
operations stage of cognitive development)
- The ability to act autonomously and not acquiesce to the
authority of doctors and parents ®1
The Royal College of Paediatrics and Child Health (UK) describes
four levels of child involvement in decision-making;
- 1/ being informed
- 2/ being consulted
- 3/ having views taken into account in decision-making
- 4/ being respected as the main decision-maker ®2
Even young children have a right to be informed regarding
decisions which affect their future. As children acquire increasing
competence, involvement in decision-making progresses through the
above levels. Both the Royal College of Paediatrics and Child
Health and the American Academy of Paediatrics advocate strongly
for the participation of children in decision-making to the extent
their ability allows. Furthermore, it is important that a child's
inability to communicate or participate does not mean that their
suffering is excluded from benefits/burdens considerations.
Competence is assessed according to:
- Cognitive ability. This may be reflected in the young person's
ability to provide a clinical history as well as their
understanding of the condition, treatment options and the
consequences of choosing one option over another. Other factors to
consider include level of schooling, verbal skills and demonstrated
capacity to make decisions.
- Presence or absence of disturbed thinking (eg. in the setting
of psychiatric disorder)
If the patient is 18 years or older, and competent, decisions
regarding treatment ultimately belong to him/her although most
young people will involve their family in such matters. 'Mature
minors' are legally able to consent to treatment if they are
assessed as competent. They are not however able to consent to the
withdrawal of life-sustaining treatment against their parents
'The legal recognition of a competent minor's right to consent
to medical treatment may not fully apply to a right to refuse all
forms of medical treatment.' ®3
In the majority of cases, young people and their parents will be
in agreement about the most appropriate way forward. In cases of
irreconcilable dispute however, the involvement of the Family Court
may be required.
Patients aged 16-18 years are generally assumed to be competent
and in this way are 'mature minors'. Patients aged less than 14
years are generally assumed not to be competent. Patients aged
14-16 years require careful assessment.
The outcome of an assessment of competence should be carefully
documented including the grounds on which the patient is judged to
be of sufficient maturity to make a decision.
regarding life-sustaining treatment
The modern medical practitioner has at his or her disposal a
plethora of life-sustaining interventions. These should be used for
the benefits they can provide to individual patients. However,
there are times when the best interests of the patient are served
by not implementing these interventions. The Royal College of
Paediatrics and Child Health (United Kingdom) outlines five
circumstances under which withholding or withdrawing curative
medical treatment may be considered;
- The child has been diagnosed as brain dead according to
- Permanent vegetative state. These children have 'a permanent
and irreversible lack of awareness of themselves and their
surroundings and no ability to interact at any level with those
around them' ®4
- 'No chance situation': life-sustaining treatment simply delays
death without providing other benefits in terms of relief of
- 'No purpose' situation: the child may be able to survive with
treatment but the degree of mental or physical impairment would be
so great that it would be unreasonable to ask the child to bear
- The 'unbearable' situation. In the face of progressive,
irreversible illness, the burden of further treatment is more than
can be borne.®2
Decisions are made on the grounds of benefits/burdens
proportionality. In order to justify a particular intervention, the
expected benefits of that intervention must outweigh the burdens.
Burdens might include intractable pain, disability, emotional
suffering or other factors which seriously compromise the child's
quality of life. Obviously questions about the choice of an
intervention alter with time and disease progression. Thus,
treatments considered reasonable in the early stages of illness
when the child is enjoying a good quality of life may be seen as
unreasonable later in the illness. Furthermore, each intervention
should be individually subjected to this consideration. For
example, a child who is not expected to benefit from ventilation
may be helped symptomatically by the administration of oxygen.
Importantly, the withholding or withdrawal of life-sustaining
interventions should never mean the withdrawal of care. Adequate
symptom control and emotional and spiritual support for the child
and family must be ensured.
'Whether or not the child can be restored to health there is an
absolute duty to comfort and to cherish the child and to prevent
pain and suffering' ®2
Approach to Decision-Making
The following questions should be considered by all of those
involved in decision-making;
Is this intervention going to cure the disease?
Is this intervention going to prevent progression of the
What impact will the intervention have on the child's quality of
Will the intervention improve the child's symptoms?
Will the intervention make the child feel worse?
How long will the child feel worse for?
What will happen without the intervention?
How will the intervention change the outcome?
The Question of Certainty
It is not necessary to have absolute certainty in order to make
'&it is enough to have a reasonable belief that something is
the case - we cannot have and do not need to have absolute
As in so many areas of medicine, absolute certainty may not
exist in settings where major decisions need to be made and
judgement will be required to determine the appropriate way
forward. There may be times when there is doubt about the potential
benefits of a particular intervention. In such circumstance, it may
be reasonable to conduct the treatment over a well-defined and
pre-negotiated trial period. If, at the end of that time, no
benefit is demonstrated or the burdens of treatment outweigh the
benefits, the treatment should be withdrawn.
Is Withholding of Life-Sustaining Treatment Different to
Much energy has been expended debating whether there is an
ethical difference between withholding and withdrawing
life-sustaining treatment. The act of withdrawing an intervention
such as ventilation is certainly more disconcerting for the family
and health professionals involved, given the immediacy of the
consequences. Ethically and legally however, there is no difference
between withdrawal and withholding of an intervention. ®2 This is
important as therapies may not be implemented for fear of not being
able to justify their withdrawal later on. However, any
intervention which may be ethically withheld may also be withdrawn.
Thus, as outlined above, it may be reasonable in some circumstances
to begin treatment with a view to ceasing it later on if no
benefits are seen.
'Doctors, children and informed parents share the decision; with
doctors taking the lead in judging the clinical factors and parents
the lead in determining best interests more generally.' British
Medical Association ® 4
End-of-life decision-making is a collaborative process. It
should involve the child (where possible), the family, and all the
health professionals involved in providing care to the child. An
important underlying principle of the process is open communication
between staff and families.
- Children should be at least consulted and their views
solicited. An assessment of competency should be made. Even when
the child is very young and unable to express a view, members of
the team are encouraged to consider what views the child might
express if they were able. Obviously, it is impossible to be
certain and this is done symbolically as a way of reflecting on the
child's best interests.
- Parents bring a detailed understanding of their child's hopes,
wishes and preferences. They therefore have a key role in
considerations regarding the best interests of their child. There
may also be important members of the wider family who need to be
included. Grandparents for example may feel distressed and
concerned about decisions that are made if they have not had an
opportunity to hear first hand medical information.
- The medical consultant is ultimately responsible for subjecting
treatment options to benefits/burdens proportionality. His or her
expertise lies in advising the family what medical treatment is in
the best interests of the child. Other members of the health care
team should be consulted as each staff member brings a unique
understanding of the child and family's wishes. Nursing staff often
spend long periods with the family and may bring important
information to the decision-making process. The participation of
the General Practitioner or community paediatrician may also be
beneficial. While it is unreasonable to expect consensus in all
cases, staff should at least feel their views have been heard. It
is also worth remembering that decisions are often implemented by
nursing and junior medical staff who need to feel included in and
supported by the process.
The American Academy of Pediatrics states that
'&physicians should do more than offer a 'menu' of choices
- they should recommend what they believe is the best option for
the patient under the circumstances and give any reasons, based on
medical, experiential, or moral factors, for such judgements.'
Society invests parents with the responsibility of acting on
behalf of their children. There are occasions however, where
parents insist on what staff may view as inappropriate treatment.
Conversely, parents may refuse treatment that is of potential
benefit to the child. It is important that the best interests of
the child are advocated for and that decision-making is shared
between the family and the health care team.
'for desperate parents to expose fatally ill children to all
manner of painful, unproven or essentially futile treatments
breaches the child's right to be free from intrusion. The doctor's
first duty is to the patient&Family pressure to provide
aggressive intervention of dubious clinical value should be
'Parents or surrogates may not compel a physician to provide any
treatment that, in the professional judgement of that physician, is
unlikely to benefit the patient' American Academy of Pediatrics
Most disagreements can usually be resolved by open and honest
communication. Decision-making should be viewed as a process not an
event. Families often need time to absorb and process difficult
information. Where conflict can not be resolved, it may be helpful
to request a second opinion from an independent practitioner. It
may also be beneficial to include other family members or cultural
and religious leaders from the local community. In extreme
circumstances where agreement can not be reached despite the above
interventions, it may be necessary to seek legal judgement.
Where children have an existing condition, gradual or sudden
deterioration may be anticipated. It is helpful for health
professionals to assist families in planning for crises so that
interventions considered unhelpful to the child are not initiated.
Written documentation in the medical record as well as a letter for
the family to have with them is required. This should detail:
- What has been discussed
- Who was present
- What decisions were made
- What the child and family's wishes are regarding various
- Who should be called in case of crisis
At the Royal Children's Hospital, an ALERT may be placed on the
Emergency Department system informing staff of the existence of a
letter or entry in the medical record as well as the appropriate
consultant to call at the time of presentation.
This forum does not permit an extensive review of the euthanasia
debate and the reader is referred to leading bioethics texts for a
more detailed exploration of the subject. Most discussion in
paediatric palliative care centres around passive non-voluntary
euthanasia or 'selective non-treatment' in which 'death is
deliberately produced by withholding or withdrawing the ordinary
means of nutrition or treatment of the subject's condition'. ®8 It
is important to draw a distinction here between good medical care
and euthanasia. Good medical care involves making a judgement based
on whether a given intervention is in the best interests of the
patient. If it is not (based on benefits/burdens proportionality)
then it should be withdrawn or withheld. The medical practitioner
may predict that death will result but this is not the intention.
Euthanasia (be it passive or active) centres on the intention to
bring about the death of the patient. Health professionals do not
wish to actively end patients' lives. On the other hand, they do
not wish to contribute to suffering by continuing therapies which
are unlikely to benefit the patient. The Royal College of
Paediatrics and Child Health draws a clear distinction between
palliative care and euthanasia.
'When a dying patient is receiving palliative care, the
underlying cause of death is the disease process. In euthanasia,
the cause of death is the intended lethal action' ®2
Most major medical bodies specifically reject the concept of
A practical issue which often arises in the context of
palliative care is concern over whether the management of symptoms
with opioids hastens death. There is currently no evidence that
death is hastened when opioids and anxiolytic agents are used
correctly (that is titrated upward according to patient tolerance
and symptom severity) ®9
'the knowledge and skills built up over some 30 years of palliative
care practice have shown that opioids and sedative drugs can be
used quite safely for symptom control without bringing causation
into question if the parameters of accepted practice are followed.'
Adequate symptom control and relief of suffering should be a priority of
care. In a report of the Special Senate Committee on Euthanasia
and Assisted Suicide, ®11 the Chief Coroner of Ontario outlined the
following principles underlying palliative care interventions;
- Care must be intended solely to relieve suffering
- Care must be provided in response to suffering
- Care must be commensurate with the degree of suffering
- Care must not be deliberate attempt to cause death
It is worth noting that there are occasions when it may not be
possible to preserve full consciousness in the presence of severe
pain and distress. This is not a common scenario but the priority
should always be adequate symptom control even if this renders the
child drowsy or sleepy.
Hydration and Nutrition
Food and fluid should always be offered if the child is able to
take it by mouth. Discussion here focuses on the provision of
hydration and nutrition by artificial means (ie. via nasogastric,
intravenous, gastrostomy). Most authors consider the provision of
nutrition and hydration by artificial means to be a medical
intervention subject to the same benefits/burdens assessment as any
other. The insertion of tubes into the gastrointestinal tract
carries with it the burdens of discomfort and the potential for
complications and therefore needs to be justified on the grounds of
the benefits it may provide to the patient. Some argue however that
the provision of food and fluid constitutes a basic component of
humane care and can never be withdrawn or withheld. In the
paediatric setting, this concept is extended by the centrality of
feeding to the parental role and the vulnerability of infants and
small children. Children in the terminal phase of illness will
naturally cease eating and drinking as their requirements decrease
and it is not necessary in these circumstances to provide fluid and
nutrition by artificial means. ®12 Parents may find it extremely
difficult not to provide sustenance for their child and will
require the support of staff. Some parents find their decision is
questioned by members of the extended family and friends who are
not privy to all the relevant information.
The effect of the provision or omission of artificial hydration
and nutrition on the timing of death is uncertain. ®13 Likewise,
the impact of this intervention on patient comfort in terminal
illness is poorly understood although emerging data indicates that
hydration status and thirst are not related in a predictable way
®14,15. It is worth noting that dehydration may contribute to
opioid toxicity, delirium and constipation and may require
correction to alleviate these distressing clinical
Medical Ethics in
It is important to understand the limitations of Western ethics.
The beliefs, values and conceptual frameworks used by other
cultures must be considered when making decisions with families.
The most appropriate source of information is the family itself as
there will be considerable variability within cultural groups.
There is some benefit however in understanding how ethical
principles are applied in different cultural settings. The
following articles may be of interest. More reference material will
be added to this section over time.
Gatrad AR, Sheikh A. Medical ethics and Islam: principles and
practice. Arch Dis Child 2001; 84: 72-75
Da Costa DE, Ghazal H, Al Khusaiby S. Do Not Resuscitate orders
and ethical decisions in a neonatal intensive care unit in a Muslim
community. Arch Dis Child (Fetal and Neonatal Edition) 2002; 86:
The authors would like to acknowledge the kind assistance of
Dr.Lyn Gillam in reviewing the manuscript.
1/ Leikin S. A proposal concerning decisions to forgo
life-sustaining treatment for young people. J Pediatrics 1989; 115:
2/ Royal College of Paediatrics and Child Health. Withholding or
Saving Treatment in Children. London, 1997.
3/ Young People and Informed Consent Project. Joint publication of
the Australian Medical Association and Medical Practitioners Board
of Victoria.(In Press) Victoria 2002.
4/ British Medical Association. Withholding and Withdrawing Life
Treatment. Guidance for Decision Making. British Medical Journal
Books. London 2001.
5/ Frager G. Palliative care and terminal care of children. Child
Adolescent Psychiatr Clin North Am 1997; 6: 889-909.
6/ American Academy of Paediatrics. Guidelines on forgoing
life-sustaining medical treatment. Pediatrics 1994; 93:
7/ British Medical Association. Medical Ethics Today: Its Practice
and Philosophy. London; BMA, 1993: 76.
8/ Wilkinson J. The ethics of euthanasia. Palliat Med 1990; 4:
9/ Ashby M, Stoffell B. Therapeutic ratio and defined phases:
proposal of ethical framework for palliative care. Br Med J 1991;
10/ Ashby M. On causing death. Med J Aust 2001; 175: 517-8.
11 Minister of Supply and Services. Of life and death: Report of
the Special Senate
Committee on Euthanasia and Assisted Suicide. Ottawa: Canada 1995;
12/ Nelson LJ, Rushton CH, Cranford RE, et al. Forgoing medically
and hydration in pediatric patients. J Law Med Ethics 1995; 23:
13/ Ashby M, Stoffel B. Artificial hydration and alimentation at
the end of life: a reply to
Craig. J Med Ethics 1995;21:135-140.
14/ Brody H, Campbell ML, Faber-Langandoen K, Ogle KS. Withdrawing
sustaining treatment-recommendations for compassionate clinical
management. New Engl J med 1997: 336: 652-656.
15/ Printz LA. Is withholding hydration a valid comfort measure in
the terminally ill? Geriatrics 1988: 43: 84-87.