Definitions:

Human Rights

Human rights are universal legal guarantees protecting individuals and groups against actions which interfere with fundamental freedoms and human dignity.

Children's Rights

Chilldren's rights are the perceived human rights of children with particular attention to the rights of special protection and care afforded to the young.

The UN Convention on the rights of the child were developed from the Universal declaration of human rights that stated that 'childhood is entitled to special care and assistance". It is an international convention which sets out the civil, political, economic,social and cultural rights of children and was adopted by the UN General Assembly in 1989. This convention has since been ratified by 193 countries, including South Africa. (Notable exceptions are the USA and Somalia - Dec 2008) Nations that ratify this international convention are bound to it by international law and once ratified, countries are required to incorporate rights into their constitutions. In South Africa, this is set out in Section 28 of the constitution.

Section 28 in the South African Constitution states that:

• A child's best interests are of paramount importance in every matter concerning the child.
• A child is defined as a person under the age of 18 years
• Every child has the right
  • to a name and a nationality from birth;
  • to family care or parental care, or to appropriate alternative care when removed from the family environment
  • to basic nutrition, shelter, basic health care services and social services;
  • to be protected form maltreatement, neglect, abuse or degradation;
  • to beprotected from exploitative labour practices;
  • not to be required to perform work or provide services that are inappropriate for a person of that child's age or place at risk the child's well-being, education, physical or mental health or spiritual, moral or social development

Read more on the rights of the child at: 

http://www.info.gov.za/documents/constitution/1996/96cons2.htm#28

What about palliative care rights?

Margaret Somerville, an Austrian ethicist, wrote that "Nowhere are the concepts of an ethic of care, human ethics, human rights, and human responsibilities more important than in relation to human dying."

The KOREAN DECLARATION at the 2nd Global Summit of National Hospice and Palliative Care Associations 

Children and adolescents with life limiting conditions have very specific palliative care needs which are often different from those of adults.  If these physical, emotional, spiritual and developmental needs are to be met, the carers require special knowledge and skill. We ask that the voice of these children and adolescents be heard, respected and acknowledged as part of the expression of hospice and palliative care worldwide.  March 2005

Ethical principles relative to children's palliative care include:

• Respect for life
• Autonomy - respect for the uniqueness of the individual and freedom in decision making
• Capacity - governs informed consent
• Beneficence - to do good
• Non-Maleficence - to avoid / minimise harm
• Justice - decisions need to be just and ensure a fair distribution of resources
• Truth telling - it is the duty of the practitioner to tell the truth at all times
• Confidentiality - the only exception being when there is a high risk of physical harm to others

Key dilemmas in the practice of children's palliative care

• The most important principles in medical ethics are those of autonomy and informed consent but children are often neither fully autonomous nor fully able to give consent
• Health professionals may be as influenced (subconsciously) by prejudice and emotion as they (consciously) are by logic and rationality when it comes to decision-making in children's palliative care.
• Children have rights, and the duty of health professionals is to uphold and protect those rights as far as possible even when these conflict with the wishes of the family
• Many of the ethical dilemmas in children's palliative care in South Africa and in the rest of sub Saharan Africa are decided by the fact that the resources to carry out hte ethical therapeutic options that are theoretically possible are not available.

The doctrine of double effect

The doctrine of double effect is used to justify actions that have two effects, one good and one bad and can only be applied when:

• The act performed is morally good or neutral
• A good effect is intended
• A bad effect is merely forseen
• A bad effect is not hte means to the good effect
• There is "proportionality" i.e. the good effect must outweigh the bad

The Ideal Observer Theory states that a decision is morally acceptable if it complies with 5 characteristics (ideally decided by an ethics committee).

1. Omniscience: the decision has included all the readily available and relevant facts
2. Omnipercipiene: the decision has empathetically taken into account the feelings of all of those involved.
3. Disinterest: the decision is not based on vested interests
4. Dispassion: the decision is not made under conditions in which strong emotions obscure critical thinking
5. Consistency: similar cases are decided similarly

Goal setting in Palliative Care

Setting goals in children's palliative care can help tremendously when making difficult decision. Possible goals include:

• Cure (with comfort measures alongside)
• Trial of intervention (will withdraw if not successful or there are side effects)
• Comfort (supportive care
• AND (Allow a Natural Death, which is better than DNR - Do Not Resuscitate) 

Motives

The following questions may help you to examine the motives behind a decision:

1. Are you doing this for the child or to the child? A treatment may be medically possible but it may not help the child
2. Are you (the doctor) doing this for yourself?  Do you think "I need to have at least tried.." or even "I won't rest until I know I did everything I could." 

Some other useful questions (Gerri Frager, MD)

1. How realistic is it that this treatment/intervention will be able to cure or significantly improve the illness or current problem?
2. If not able to cure of significantly improve this problem, how likely is it to prevent progression of the problem/illness?
3. Will thistretament/intervention improve the way the patient feels? For how long?
4. Could this treatment/intervention make the patient feel worse? In what way? For how long?
5. What do you think it will be/feel like for the patient to go through this treatment/intervention? What can be done to help it be less painful/difficult?
6. What will likely happen without this treatment/intervention?
7. If we don't have this treatment/intervention, what are the options for the patient's illness or current problem, what can be done to help the patient to feel better?

Decision Matrix:

The decision matrix is a useful way of creating a visual image of the risk vs benefit calculation that should be done when facing a difficult decision about treating or not treating.

HOPE

Hope is broadly defined as a subjective belief state that combines expectation with desire and imbues living with meaning and a sense of purpose.

Hope can mean what we wish for (can be unrealistic) and what we expect (more realistic).

Reserach shows that parents of dying children swing continuously between realistic and unrealistic hope: this may be a coping strategy, it does not always signify denial. Hope is never lost, but its focus may change alongside the goals of care.