When is it appropriate to consider limitation of treatment?
There are three sets of circumstances where it may be appropriate to consider limitation of treatment. If treatment is unable or unlikely to prolong life significantly, it may not be in the child's best interests to provide it.
How should we make decisions about limiting treatments?
Decisions to limit treatments—or what treatments should be given—should be made by clinical teams in partnership with, and with the agreement of, the parents and child (if appropriate). They should be based on shared knowledge and mutual respect.
What is life limiting illness?
This applies to treatments that merely sustain life but that neither restore health nor confer overall benefit. Increasingly children with life limiting illnesses will live beyond their 16th or 18th birthdays. Arrangements for transition should accord with best practice and be subject to age-appropriate or age-determined legislation.
What is the basis for considering whether treatment should be continued/withdrawn?
The basis for considering whether treatment should be continued or withdrawn should be made clear, for example, if treatment proves too burdensome or does not achieve its intended benefits. The underlying ethical justification for all decisions to withhold or withdraw LST is that such treatment is not in the child's best interests.
What does conceptual consistency mean?
The concept of consistency means that accounting methods once adopted must be applied consistently in future. Also same methods and techniques must be used for similar situations. It implies that a business must refrain from changing its accounting policy unless on reasonable grounds.
Under what circumstances might a behavior analyst be able to disclose confidential information?
The behavior analysts must get permission from who in order to obtain and disclose client records from other sources? The behavior analysts must get permission from the client and/or client-surrogate in order to obtain and disclose client records from other sources.
At what point in the consideration of a behavior change program should we perform a risk/benefit analysis?
A risk-benefit analysis should be performed on the procedures that will be implemented in the behavior-change program so as to allow clients to be aware of the risks that may come along with certain aspects of the program.
What does the RBT ethics code say about using restrictive or punishment based procedures?
2.04 RBTs do not use unfamiliar interventions or provide services to unfamiliar client populations unless they have received proper training. 2.05 RBTs implement restrictive or punishment-based procedures only when included in a documented behavior-change plan and after their supervisor has verified their competence.
When is palliative care necessary?
Access to palliative care services may be necessary when treatment fails or during an acute crisis, irrespective of the duration of threat to life.
What are some examples of children's health care needs?
Examples: severe cerebral palsy, multiple disabilities, such as following brain or spinal cord injury.
What is the diagnosis of palliative care?
Diagnosis is only part of the process of identifying children who need support from palliative care services: the spectrum and severity of the disease as well as the needs/wishes of and impact on the child and family also need to be taken into account. The four categories can be defined as follows: Life-threatening conditions for which curative ...
Is there a growing number of children living with life limiting conditions in the UK?
There is a rapidly growing number of children living with life-limiting and life-threatening conditions across the UK. We would expect that all these children would benefit from some elements of the palliative care approach and from knowing about the support that is available from children’ s palliative care services.
Is batten disease palliative or palliative?
Treatment is exclusively palliative and may commonly extend over many years. Examples: batten disease, mucopolysaccharidoses. Children can have complex health care needs, a high risk of an unpredictable life-threatening event or episode, health complications and an increased likelihood of premature death.
How long can a child live with a life limiting illness?
Increasingly children with life-limiting illnesses will live beyond their 16th or 18th birthdays. Arrangements for transition should accord with best practice, subject to audit and respectful—insofar as possible—of the wishes, preferences, beliefs and values of those concerned. Arrangements should accord with professional guidance and be subject to age-appropriate and/or age-determined legislation, for example, Mental Capacity Act, 24 Equality Act. 25 Limitation of treatment decisions or arrangements for end of life should be in accordance with age-related ethical, legal and professional guidance and statute law insofar as they differ for this age group (see for example, GMC ‘Treatment and care towards the end of life: good practice in decision making’, 2 Good medical practice). 3
What is the purpose of medicine?
The key purposes of medicine are to alleviate suffering, restore health, sustain life and prevent disease. In paediatrics, members of healthcare teams work in partnership with children and their parents to achieve these objectives. The healthcare team, formed of healthcare professionals, consists of nursing staff, play specialists, educational specialists, medical staff (inclusive of the general practitioner), and staff from the professions allied to medicine. The team should in all cases work closely with the parents and the child. The ethical and legal rationale for all treatments, present and future, is that they should be in the best interests of the child. 1–3
What is LST in medical terms?
This document, like the two editions that preceded it, is intended to provide an ethical and legal framework for making decisions to limit life-sustaining treatments (LST) in life-limiting and life- threatening conditions in children. It has been revised to reflect both changes in the scope and availability of advanced technologies and in the emphasis and application of ethical and legal principles to decision making. It sets out circumstances under which withholding or withdrawing life-sustaining treatment might be ethically permissible—NOT circumstances under which such treatment must certainly be withheld or withdrawn. In particular it describes situations in which individual children should be spared inappropriate invasive procedures—NOT types of children to whom appropriate procedures should be denied. It takes account of the wider interests of children and of families and their greater involvement in the decision-making process. It also reflects the increasing availability of children's palliative care services and of other support services for all those involved.
When a decision is being made about withholding or withdrawing LST, it will usually be appropriate to include the
When a decision is being made about withholding or withdrawing LST, it will usually be appropriate to include the primary healthcare team and local paediatric professionals in the discussion , especially if they have known the child and family well. If they are not part of the ongoing discussion it is essential to keep them well informed of decisions and outcomes—especially the child's death.
Why is it no longer appropriate to provide LST?
It is therefore no longer appropriate to provide LST because it is futile and burdensome to do so .
Why is it more problematic to consider quality rather than quantity of life?
Considering quality rather than quantity of life is more problematic because of potential or actual differences in views of the healthcare team and children and families as to what constitutes quality of life and the values that should be applied to define it.
Which article of the Constitution states that children have the right to freedom of expression?
Article 24 affirms the right of the child to the highest obtainable standards of health and to facilities for the treatment of illness and restoration of health. Article 13 affirms the child's right of freedom of expression and to seek, receive and impart information and ideas of all kinds.
Principles
As endorsed by professional organizations in North America and Europe, ethical decision-making concerning providing or forgoing LSMT for children is guided by the patient’s best interests.
Process Guidance
The ethical duties of veracity and fidelity call physicians to share “complete, honest and unbiased information with patients and their families on an ongoing basis and in ways they find useful and affirming.” 17 Beneficent actions also include efforts to identify individuals, groups, and other resources that can provide support to the patient and family.
Special Situations
Medically administered nutrition and hydration constitute interventions that may be withheld or withdrawn for the same types of reasons as other medical treatments.
Recommendations
When decisions to forgo LSMT are being contemplated, compassionate care for children who are severely ill and their families is enhanced by attention to the following considerations:
Competing Interests
POTENTIAL CONFLICT OF INTEREST: Dr Christian provides medical-legal expert work in child abuse cases; and Drs Weise, Okun, and Carter have indicated they have no potential conflicts of interest to disclose.
Liaisons
Mary Lynn Dell, MD, DMin – American Academy of Child and Adolescent Psychiatry
Liaisons
Harriet MacMillan, MD, MSc, FRCPC – American Academy of Child and Adolescent Psychiatry