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Attard-Montalto S*. Ethical Issues in Paediatric
Practice - Part III: Issues relating to the dying process. Images Paediatr
Cardiol 2002;11:32-34
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*
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Chairman, Dept. of Paediatrics, St. Luke’s Hospital,
Malta
Academic Head, Dept. of Paediatrics, University of Malta Medical School |
MeSH
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Ethics
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Abstract
Despite the application of robust ethical principles, complex issues in child care commonly result in ethical dilemmas with no clear answers. This is especially so in those ‘life and death’ decisions relating to continuing curative therapy or opting for palliative care. As with many situations in paediatrics, these decisions are complicated by difficulties in establishing clear prognostic outcomes both in terms of disease progression and timescales, the child’s reliance on third parties, and appropriate use of resources. Great efforts are required to ensure family members are fully informed of the evolving clinical situation relating to their child, and helping them to accept the inevitability of death. Whenever possible, they should be encouraged to plan for their child’s death in a manner that is most appropriate for them as an individual family. This article will explore the ethical principles which offer guidance in these situations, and strives toward: i) establishing the acceptance of death by the child and family, ii) ensuring ‘quality time’ for both family and their dying child and, iii) safeguarding the child’s right to die with dignity.
Article
Fortunately, most childhood illness is curable and, indeed, death in
childhood is an unlikely event in 2002. Often death is not a totally unexpected
event but can usually be anticipated after a short or long term illness.
For these children, a point is reached when cure is no longer possible
and is replaced by palliative care. Not uncommonly, this transition can
be complicated by ethical dilemmas. Many of the decisions relating to the
dying child are complex, and invariably have a significant impact on the
child as an individual, his/her family and friends, as well as society
at large. If this transition is to be appropriate and acceptable, a code
of practice based on sound ethical values is essential.
When to opt for care and not cure?
This difficult milestone requires a multidisciplinary decision involving
the patient, whenever possible, the family, relatives, friends and the
entire team of carers. Stopping curative therapy will depend on medical
considerations such as patient viability, futility of further aggressive
therapy, and the exhaustion of all reasonable, potentially curative options.
The patient must be ‘ready’ for the transition (with appropriate, sensitive
discussion in the older child). The importance of family acceptance of
palliation versus cure cannot be stressed enough and requires frank discussion,
often over several hours. Finally, but equally important, the acceptance
of carers must never be overlooked and the personal view of each individual
should be actively explored. Ultimately, a unified team decision is required
to avoid conflict that will only add to the distress of the child and his/her
family.
Medical ethics that apply to palliative care in children
The transition to palliation in critically ill children does not involve
a special set of medical ethics. Indeed, the appropriate application of
basic principles provides the platform on which difficult issues can be
discussed and ethically acceptable decisions taken. Hence, carers should
strive toward beneficence (essentially, in this context, do what is in
the patient’s best interest) whilst respecting the patient’s autonomy within
the confines of his/her competence. They should respect confidentiality,
avoid being paternalistic, anticipate and avoid conflict. All issues should
be aired realistically, honestly and sympathetically, with due consideration
for the patient’s/family’s views, beliefs and wishes. As highlighted in
Part I of this series, for medical decisions to be ethically acceptable,
they should be based on all the facts and points of view, free of bias
and emotional overtones, and consistent from one patient to another.
Despite this ideal, the decision making process is rarely straightforward in practice. Often an accurate prediction of outcome (and time-scales) may be difficult in critically ill children, especially. Prolongation of life through palliative care raises the issue of quality of life, an extremely subjective issue dependent on personality, inherent expectations (realistic or otherwise), cultural background, religious beliefs and pressure from third parties. Nevertheless, the caring team have a primary duty to maintain the quality of life at all times of, firstly, the child and, secondly, that of the family. In addition, they must present an honest assessment of the medical condition with realistic goals and argue toward the reasonableness, or otherwise, of continuing support. In practice, this cannot be done without taking account of available resources, although healthcare ‘rationing’ in the terminally ill child can be very difficult.
Moreover, these problems are made doubly difficult in children unable to grasp the complex issues involved and, therefore, cannot participate in the decision process and depend on third parties, usually their immediate family members. In the vast majority of cases, the latter correctly decides what is right for their child and for them as a family, and the role of the caring team is essentially to support and facilitate their decisions. Rarely family members may, knowingly or unwittingly, hold strong views that may be biased by their own fears/beliefs and may not be in their child’s interest. At this point the caring professionals may be required to gently redress any misguided views to ensure that the child is not put through any unnecessary suffering. Once a decision for palliative and not curative care is taken, the unified focus should be toward support, quality and not quantity of life.
Children and dying
Toward the later stages of palliative care respect must be shown for
the wishes of the patient, the family and carers in the light of their
background, culture and creed. Throughout the dying process, great attention
must be paid to the child and his family’s needs, both physical and emotional.
Whenever possible, decisions relating to Where to die?, With whom? and
How? should be planned with the family. What may be the ideal for one family
may be abhorrent for another. Every effort should be made to enroll all
support services (e.g. Hospice movement, social workers, friends, etc)
in order to fulfill the child’s and the family’s wishes. Certainly in the
majority of expected deaths (e.g. cancer relapse) this is eminently feasible,
but it is extremely difficult with sudden, unexpected deaths (e.g. post-accidental).
The fact that each child will die only once and that this is invariably a major event for loved ones should form the basis for a modus operandi that strives to ensure that death is as ‘acceptable’ as possible. A concerted drive to respect the patient’s and family’s wishes, to ensure ‘quality time’, and ‘humanize’ the dying process can help enormously in allowing loved ones to ‘let go with resigned acceptance’. In this regard, the spiritual needs of the family must be taken into consideration, and a conscious effort made to ask the family if they would like the appropriate religious counselor to attend. Finally, it is entirely appropriate to decide, together with the family, against active resuscitation and the initiation of further extraordinary (but futile) measures. Indeed, there is little to compare death after a frantic resuscitative attempt without family or friends, with the peaceful death of a child in his/her mother’s arms quietly surrounded by loved ones.
Conclusion
For critically ill children, cure should not be pursued at all costs
and there may come a time when cure is impossible and palliative care is
in the child’s best interest. Certainly, appropriate supportive care should
continue at all times and must include the child’s family and friends.
Acceptance of death is very important, particularly for the child’s family,
and can only be achieved after sympathetic, often prolonged and repeated
discussion with loved ones. Palliation should provide ‘quality time’ for
both family and their dying child and, ultimately, strive for one overriding
goal: namely, to safeguard the child’s right to die with dignity.
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