The rights of children and parents within the healthcare system are connected to the obligations healthcare professionals have towards citizens. The obligations are stated in the Swedish Health and Care Act (Hälso- och sjukvårdslagen, HSL) and the Patient Safety Act (Patientsäkerhetslagen). Generally, the rights cannot be forced by appealing to the Court. The Health and Care Act states how the Swedish healthcare system should be organised and run. The main purpose of the HCA is to provide all people in Sweden with proper, safe healthcare, on equal terms and conditions. According to the HSL, healthcare should be given with the consent of the patient.
Another law concerning children and parents, the Parent Code (Föräldrabalken), states that the legal caretaker of a child has the right and obligation to make decisions in matters regarding the child. Children remain in the legal custody of their caretakers until they come of age (at 18 years) or get married. Hence, the child's legal caretaker must consent to any healthcare offered to the child.
As the child grows older and matures, his or her own will must increasingly be taken into consideration. Thus, the child should have an influence, which will over time turn into full autonomy. Children's rights are also described in the UN Convention on the Rights of the Child (The Child Convention), an international agreement signed by Sweden. The Child Convention states that:
- Children have a right to live and to receive the best healthcare possible.
- The best interest of the child should be the primary concern when making decisions regarding children.
- Children have a right to speak their minds and to have their opinions respected.
- Parents have the utmost responsibility for their children.
- Children have a right to privacy and personal integrity.
Children's rights in healthcare
There are no age limits that prevent a child from taking part in any decision-making processes concerning healthcare. The child's right to fully make decisions is related to his or her maturity in relation to the complexity of the decision, and how it will effect the child's future health.
The older the child, the greater the need for the parents and the child to mutually consent to the healthcare being offered. It is the responsibility of the caregiver to assess whether or not a child can take part of the decision-making process in a healthcare situation.
Examples of children's rights in healthcare:
- To be accompanied by a parent during hospitalization. Children should primarily be treated at paediatric wards, equipped with healthcare professionals specialised on paediatric medicine, schooling, toys and other relaxing activities.
- To be allowed to interrupt an examination or treatment in order to take a break, or to resume trying at a different time.
- Generally, older children have the right to speak privately with healthcare professionals without having the parents present, or having to disclose any information to them.
- Generally, older children have the right to seek healthcare on their own initiative, and have the right to receive counseling, without a parent being present, knowing about the outcome or participating in the treatment.
- If a child is hospitalized and requests it, siblings are allowed to come visit and, if possible, to spend the night.
- A boy has the right to receive accurate information regarding circumcision and to decide on his own whether or not to be circumcised. A boy who is circumcised has the right to receive pain relief. The incision should be performed by a practising physician or by a person with special authorisation.
- All female circumcision, on girls and women alike, is forbidden in Sweden, even if the girl or woman consents to the procedure.
- Children have the right to receive support, counselling and information if a parent has a disability, a serious injury, a physical illness, mental disorder, is addicted to alcohol or any other addictive substances, or dies unexpectedly.
- To be relieved from any healthcare related liabilities. The parents are obligated to finance any healthcare that is subject to charge.
Examples of what children may take part in decisions on in healthcare :
- How the child wants to take medicine – as pills, as suppositories or liquid.
- To decide on which finger or arm to get a shot, and whether or not to have a topical anaesthetic applied prior to the shot.
- If the child wants to donate any tissue or cells.
- Older children decide themselves if they want to share information regarding their health, and to whom they want to share it with. Exceptions are made when the information is needed for investigations within the Social Services or criminal investigations.
- Older children have the right to block other care units and caregivers from having access to their medical records, for instance, if the youngster has visited a Youth Healthcare Centre.
Exemples of things children are not entitled to decide on:
- More serious decisions that require medical knowledge, for instance whether or not to proceed with an operation, a treatment or an examination. Children are often allowed to influence certain aspects of these care efforts.
- Children and youngsters are not allowed to refuse healthcare if they are being treated according to The Swedish Communicable Diseases Act, The Care of Young Persons (Special Provisions) Act ( Lagen med särskilda bestämmelser om Vård av Unga, LVU) or The Compulsory Mental Care Act ( Lagen om Psykiatrisk Tvångsvård, LPT)
- Children are not allowed to determine their own level of maturity for decision-making. It is up to the caregiver responsible for the treatment to determine when the child can participate in making decisions regarding healthcare.
The rights of the legal caretaker within healthcare
As a legal caretaker, you generally have the right to participate in all discussions and decisions in healthcare concerning your child. The best interest of the child is always the guiding principle. Children are also entitled participate in making decisions to the extent their age and maturity allow.
Difficult situations sometimes emerge when decisions are to be made, especially if there is no agreement on the child's "best interest". Occasionally, there are no genuinely good alternatives to be found. So as to reach consensus, it is advisable for parents to make sure they have enough information; for instance, by reading or asking the healthcare professionals about what consequences the different decisions will have.
Examples of what the legal caretaker has a right to / can participate in decisions on:
- To decide whether the child should receive healthcare or not. This right does not apply if the child is being treated in accordance with The Care of Young Persons(Special Provisions)Act (LVU), The Swedish Communicable Disease Act, or The Compulsory Mental Care Act (LPT)
- The general principle is that both legal caretakers should consent to the healthcare. In emergency situations, or for less important issues, the consent of one caretaker might be sufficient. The child's own opinion could become decisive, if the legal caretakers do not agree. If the legal caretakers seldom or never manage to agree regarding the child's healthcare, sometimes the only solution may be giving one of the parents sole custody.
- To receive information regarding the child's health condition, which examinations, treatments and methods could become relevant, and what will happen if treatment is withheld.
- To put forth suggestions and have personal opinions regarding the Swedish healthcare system.
- To interrupt an ongoing treatment, or decline examinations or medications. These rights do not apply if the child is being treated in accordance with The Care of Young Persons(Special Provisions) Act (LVU), The Swedish Communicable Disease Act or The Compulsory Mental Care Act (LPT)
- Not having to attend to or to keep hold of the child during an unpleasant examination or treatment. In those situations, one can choose to be present for comforting and supporting the child before and after.
- To be allowed to spend the night if the child is hospitalised during treatment.
- To be acquainted to the healthcare facilities / hospital, and to their routines and guidelines.
- To get support while caring for a hospitalised child.
- To be supplied with a language or hearing interpreter.
- To determine whether or not the child may take part in scientific research projects.
- To decide if persons in training are allowed to participate and observe while the child is being examined or treated.
- Parents have the right to consent to treatment in accordance with the Care of Young Persons (Special Provisions) Act (LVU). For instance, in the case of having a teenager that is in great need of receiving treatment and/or taking medication, but who refuses to get treatment. Then the parents can contact social services, who can take immediate charge or apply for treatment in accordance with the Care of Young Persons(Special Provisions) Act (LVU) to the Administrative Court. Social Services can then help in guiding the family towards the right treatment.
- To have a copy of the child's medical records. Older children must consent to medical records being copied and handed out. In some special cases the information might be held under secrecy for the protection of the child against the legal caretaker.
- •If the child has a severe illness, or is about to undergo a complicated medical procedure, you are entitled to get a second opinion by an additional specialist.
- To receive a temporary parental allowance to compensate for loss of income, if the parent has been living in the hospital with the child.
- To receive financial compensation through patient insurance or pharmaceutical insurance in some cases, if the child has been injured in conjunction with the healthcare and treatment.
- If healthcare professionals judge that the health of a foetus is at risk because of the pregnant woman's personal conditions, they are entitled to contact Social Services. The Social Services can offer the woman support and help for the protection of the foetus.
- It is the pregnant woman who decides if an operation or any other procedure is to be performed on the foetus she is carrying.
Examples of things parents do not have a right to:
- Parents do not have the right to demand treatment for the child if the treatment goes against scientific knowledge and proven experience in healthcare.
- Parents do not have the right to deprive their child of life-saving treatment.
- Parents do not have the right to deprive their child of medical care and treatment, if it implies a great risk to the health and development of the child. Healthcare professionals report the Social Board, who can intervene in accordance with the Care of Young Persons (Special Provisions) Act (LVU). The Social Board then assumes the legal caretaker's right to decide, throughout the treatment.
- Parents do not have the right to deprive their child of medical care if the child carries a serious communicable disease and should be treated in accordance with the Swedish Communicable Disease Act.
- Parents do not have the right to deprive their child of healthcare if the child is being treated according to the Compulsory Mental Care Act (LPT)
- If the healthcare professionals suspect that the child is at risk of being seriously harmed in any way if information is given out to the parents, they are entitled to withhold the information from the parents.
- Parents are not entitled to an older child's medical records. Older children must consent to copies being handed out.
- Parents do not have the right to prevent other healthcare professionals from having access to the information in the child's medical records by blocking it.
Where to file for complaint?
These patient's rights, as they are called, do not grant parents the right to appeal in court and demand rights for their child. However, there is the possibility of approaching the Patient Board, whose mission is to help patients to receive the information that they need to enable them to safeguard their interests within the health and medical care system.
From the 1st of January 2011 onwards, new rules apply for handling patient's healthcare complaints . The new rules can be found in the Patient Safety Act, meaning that the National Board of Health and Welfare will take over current handling of patient complaints from the Medical Responsibility Board.
In some cases it is possible to receive financial compensation in accordance with patient insurance or pharmaceutical insurance. If a parent believes the child has been subjected to a crime, he or she can report it to the police. The events can then be examined in court.