Legal and Ethical issues in the care of individuals with Special Needs

Dr Sharat Chandra Pani

"Ethics is knowing the difference between what you have a right to do and what is right to do"

The care of individuals with special health care needs raises several legal and ethical issues such as the rights of the patient to obtain care, the question of informed consent, and the duties and legal obligations of the dentist. Many dentists are unaware of the legal issues involved in treating special children while others are scared of them. We simplify the process  of understanding disability rights, so as to enable you to practice 

Informed consent

While all individuals under the age of 18 require consent from parent or a guardian, individuals with certain disabilities may require the services of a guardian even after the age of 18. The National Trust Act of India states that individuals with Autism, Cerebral Palsy, Mental Retardation and MultipleDisabilities require legal guardians to take decisions for them due to an impaired capacity of these individuals for informed decision making. If the parents of the individual are no longer alive, section 14 of the National Trust Act empowers the Local Level Committee headed by the District Collector to appoint legal guardians for persons with the above mentioned disorders.

 

Disability acts

Many countries in the world have adopted legislations for the protection and empowerment of people with disabilities. In India a large number of acts have been passed to protect the interests of individuals with different disabilities. While all the acts recommend the incorporation of accessibility measures in public establishments, the acts do not make them mandatory. Similarly while the acts call for the equal treatment of an individual it is not mandatory for a dentist to treat these individuals. Thus special care dentistry in India is a field that is often neglected by the general dentist. 

Some acts  protecting the rights of disabled indiviuals in India include

• The Mental Health Act
• The RCI Act
• The PWD Act
• The National Trust Act
• National policy for persons with disabilities

A detailed knowledge of these acts is not necessary for a dentist, however you can find detailed informaion on these acts by clicking on the links provided above. 

 We live in a country where people often complain that there is no access to specialist dental care, when at the same time dentists complain there are too many dentists. At times like these it falls upon us to set our fears of the law aside and act upon our ethical duty to provide dental care to every child, regardless of disability.

What is Special Care Dentistry?

What does disability mean to us? To most who do not come into contact with it, it is just a term; a term that may be used with modifications, a term that may or may not be acceptable, but a term none the less. After all what are the chances that a dentist would come across, much less treat such an individual.

But times have changed. Individuals, who a century ago would have been branded as ‘idiots’ or ‘morons’,  are today diagnosed with specific, sometimes treatable, disorders. Babies with defects in the heart, who fifty years ago would have been given up for dead, are today being successfully operated upon. Malignancies such as leukemia, which a few decades ago meant certain death for the affected child, today have remission rates over 90%. The maternal transmission of HIV, which a few years ago meant certain transmission of the infection to the infant, is today being successfully prevented through effective maternal prophylactic regimen.

According to the 2001 census there were 21.9 million individuals with disability in India. This statistic however only includes those with visual, speech, hearing, locomotor and mental disability, and does not include the large number of individuals with various medically compromised conditions. It is estimated that in countries like the UK, where the data on individuals with medically compromised conditions is added to the data, the prevalence of disability may be as high as 1 in every 4 individuals.

Special Care Dentistry in its broadest sense deals with the dental management of an individual with special health care needs. It requires an understanding of the underlying conditions and knowledge of the precautions that need to be taken while delivering dental care to such conditions. It may be defined as

The improvement of oral health of individuals and groups in society who have a physical, sensory , intellectual, mental, medical, emotional or social impairment or disability, or more often a combination of these factors(Fiske 2007)

Special care dentistry includes the screening, preventive and treatment programs tailored to meet the specific needs of groups of individuals.

The management of an individual with Special Health Care Needs is professionally demanding. They often require more time, better equipment and greater skill on the part of the dentist. The basis of special care dentistry is the broad based philosophy of provision of care.

Special Care Dentistry in its broadest sense deals with the dental management of an individual with special health care needs. It requires an understanding of the underlying conditions and knowledge of the precautions that need to be taken while delivering dental care to such conditions. It may be defined as

The improvement of oral health of individuals and groups in society who have a physical, sensory , intellectual, mental, medical, emotional or social impairment or disability, or more often a combination of these factors(Fiske 2007)

Special care dentistry includes the screening, preventive and treatment programs tailored to meet the specific needs of groups of individuals.

The management of an individual with Special Health Care Needs is professionally demanding. They often require more time, better equipment and greater skill on the part of the dentist. The basis of special care dentistry is the broad based philosophy of provision of care.

Its guiding principles are that:

·         All individuals have a right to equal standards of health and care

·         All individuals have a right to autonomy, as far as possible, in relation to decisions made about them.

·         Good oral heath has benefits for health, dignity and self esteem, social integration and general nutrition and the impact of poor oral health can be profound. (Fiske 2007)

Dental Care for Special Children III - Topical Fluorides

If you were to ask any preventive dentist to name the single most effective tool for preventing dental caries, they would without hesitation answer - Fluoride. At the same time search the net, and you will find numerous posts warning you about the hazards of fluoride. We look at the evolution of fluorides and the development of topical fluorides, a safe and simple way to protect your child's teeth.

How it began

In the 1930's an American dentist named Trendly H Dean, noticed that an element called fluoride, which had been shown to cause "mottling" or discoloration of teeth,when present in certain amounts was actually useful in preventing dental caries. He reasoned that if the optimum level of fluoride could be calculated then the water we drink could be "fluoridated" then dental caries could actually be prevented. This led to the adoption of water fluoridation in the United States in 1945. Over the years few battles have been fought with as much passion as the debate on fluoride. That fluorides reduce dental decay is a proven fact. But also proven is the fact that calculating the "optimum levels" of fluoride is not as easy as it is made out to be. The most vehement opposition to fluoridation has often been from the medical community in India, who have stressed that in an Indian setup the ingestion of fluoride can be detrimental to health. Topical fluorides act as a useful tool to make sure your child's teeth get the benefit of water fluoridation, but the body suffers none of the ill effects of ingestion.

How do they work?

Fluorides have three main actions

• They strengthen the outermost layer of the tooth or "enamel" by making it more resistant to dissolution from the acids produced by bacteria.
  
• They interfere with the metabolism of the bacteria and prevents them from producing acids
  
• They make the surface of the tooth smoother, thereby making it difficult for groups of microorganisms, or "plaque" to accumulate on the tooth.

In what form can i give my child topical fluoride?

Most of us use fluorides in the form of toothpastes. Most commercial toothpastes available today are fluoridated, a far cry from the 1980's and early 1990's when fluoridated pastes were actually banned for a while. Topical fluorides may however be classified as 

• Self Applied 
  
• Professionally Applied
  

Self Applied Topical Fluorides

Fluoridated Toothpastes

Fluoridated pastes are the most commonly used form of topical fluoride. Very often though there is the genuine fear that parents, eager to prevent tooth decay may use more fluoridated paste than is necessary. Over the years several authors have put forward guidelines to help regulate the amount of fluoride given to a child in the form of a tooth paste.Some guidelines that ask the parent to brush once a day with fluoridated toothpaste and twice a day with non fluoridated paste, though sound theoretically are hardly practical. The guidelines i have found most useful are those put forward by the Canadian Dental Association.

1. always supervise the amount of toothpaste used
   
2. teach your child to spit after brushing
   
3. help your child brush until 8 years of age

For a young child i would recommend a low fluoride  toothpaste. In India they are presently marketed as kidodent, crest squeeze and Colgatesmiles. These pastes have a fruity flavor that is not irritant to a sensitive oral mucosa. 

Fluoridated Mouthrinses

While fluoride mouthrinses have been shown to greatly reduce tooth decay, and are certainly useful in children with medical conditions such as congenital heart disease or renal failure, I would not recommend their use in children with severe neuromuscular disorders such as some cases of cerebral palsy, as they may end up ingesting far more mouthwash than is acceptable. Although the one-time ingestion a cap full of fluoride mouthrinse is not fatal or even dangerous, a prolonged daily ingestion can be dangerous. A safer delivery system of fluoride in such children would be the use of a professionally applied fluoride varnish.

Professionally Applied Fluorides

Professionally applied fluorides, are higher concentrations of fluorides, applied by the dentist to protect your child's teeth. They are available in the form of gels, solutions and varnishes. From the aspect of safety, I would recommend a fluoride varnish. Even though it is slightly more expensive than the traditional gel or solution, the varnish sticks to your child's tooth therefore reducing the chances of swallowing the fluoride. A first application of fluoride varnish soon after the primary teeth erupt is essential for those children with special needs such as cerebral palsy, whose oral hygiene is compromised due to an ineffective neuromuscular coordination.

Fluorides are often referred to as a "Double edged sword", however a judicious use of topical fluoride  is not only safe but also goes a long way in preventing dental decay in your child. 

For Further Queries you can contact me;

Dr Sharat Chandra Pani

Consultant Pediatric and Preventive Dentist

Senior Lecturer

KVG Dental College

Sullia India

+919886374024

sharatpani@hotmail.com

Oral and Dental Problems of Children With Cerebral Palsy III - The Drooling of Saliva

The drooling of saliva is an embarrassing situation for both patient and care giver. An accompanying condition, seen in many forms of Cerebral Palsy, drooling can not only reduce the quality of life of your child but also have an adverse psychological impact.

What is Drooling?

Drooling is the spilling of saliva onto the lips, chin or in severe cases even onto the child's clothing. Drooling in cerebral palsy is not due to the production of excess saliva, it is caused because the child's muscles do not allow for a proper swallow. 

What are the effects of drooling?

Apart form the obvious social embarrassment, drooling can lead to a foul smell due to the accumulation of saliva in the corners of the mouth, soiling of the clothes and in very severe cases aspiration pneumonia. Aspiration pneumonia occurs when the lack of muscle coordination results in saliva entering the child's lungs. This saliva then acts as a source of infection that causes pneumonia. This condition can be life threatening.

Does drooling depend on the severity of CP?

To some extent it does. The worse the co-ordination between your child's nerves and  muscles, the worse is the drooling. But surprisingly drooling has no correlation with the intelligence or learning ability of your child. Children who have no intellectual disability often suffer from drooling. This makes drooling a particularly embarrassing problem. Drooling may prevent children from making friends at school or prevent them from expressing themselves.

How can we treat drooling?

In Many cases the severity of drooling reduces with age, even completely regressing in a few cases. The primary aim of the treatment of drooling should be to improve the strength and co-ordination of the child's facial muscles. In many western countries, drugs or injections to reduce the flow of saliva have been tried. These methods are described as successful because they reduce the flow of saliva and thus improve the quality of life of the patient. However these drugs can have a devastating effect on the teeth of the child.

If not drugs then what?

Drugs are not the only form of treating drooling. Parents must remember that since drooling is a neuromuscular problem, it will often get better as your child's muscles get stronger. In many children the severity of drooling reduces with age. Therefore it is not advisable to start the child on medications early. Exercises to help the child achieve closure of the mouth greatly help reduce the severity of drooling.  Speech therapy improves the child's control over the muscles of the tongue and also reduces the severity of drooling. 

Will my child require surgery to control the problem?

Surgery is often viewed as a last resort, when all other treatment has failed, in order to prevent aspiration pneumonia. Surgery may be of two types, firstly the surgeon may reduce the secretion of saliva, by repositioning the duct of the salivary gland or by removing the gland itself. This reduces the production of saliva, but leaves the child's mouth prone to infection, as it is devoid of the protective nature of the saliva. The second, more complicated surgery, involves the bypass of the oral cavity during feeding, ensuring that the child is fed directly through a tube inserted into the stomach; a procedure called a gastrostomy. This type of surgery is reserved for children who have had multiple episodes of aspiration pneumonia and is the exception and not the rule.

What the future holds

The use of Botox  for the management of drooling has been receiving a lot of attention in western countries. The drug more famous for its cosmetic uses, has a selective action on salivary glands. And even though it reduces the salivary flow, researchers claim that it is safer and has fewer side effects on the mouth than routinely used drugs. 

Another interesting  approach has been the use of oral appliances. Dentists often use the forces of the muscles to promote growth of the bones or help a child over come  habits like thumb sucking. Research shows that modified versions of these appliances can promote muscle coordination in Cerebral Palsy. While they cannot be used in the severe forms of Cerebral Palsy, they are said to be effective in milder forms. They are especially useful in children with no intellectual disability, who can understand the purpose of the appliance.

For Further Queries you can contact me;

Dr Sharat Chandra Pani

Consultant Pediatric and Preventive Dentist

Senior Lecturer

KVG Dental College

Sullia India

+919886374024

sharatpani@hotmail.com

 

Oral and Dental Problems of Children with Cerebral Palsy II - Some Questions Answered

Dr Sharat Chandra Pani

In the last post we saw how the neuromuscular status of children with Cerebral Palsy (CP) can influence oral hygiene. In today's post we answer some of the questions we have received from parents regarding dental needs of children with CP.

My child is two years old and has cerebral palsy and West Syndrome. I've been worried about his oral hygiene. He often wakes in the night and I give him cerelac. He has a little and sleeps off. I give him water afterwards but I'm sure that doesn't wash down everything. His teeth have become discoloured and he seems to have cavities too. Sometimes when I try to wipe his teeth with a wet gauze, he gets nauseous. He has hypersensitivity around the mouth area and cries while eating too. What I can do for him?

EK Mumbai

This question addressess several commonly faced concerns of parents of children with CP. Firstly, the concern about oral hygeine. The oral hygiene of children with CP is bound to be poor when compared to children without CP. Having accepted this fact parents must decide how best to prevent further damage to the teeth.

The epileptic seizures that accompany West syndrome, often mean that the child has been on anti-epileptic syrups since infancy. The importance of cleaning the mouth after intake of the syrup cannot be overemphasized. These syrups are a high source of sugar and their effect on the teeth can be far more deleterious than any sugar containing food. 

I would not recommend continuing with cerelac  beyond the first year of life. While it is an easy to prepare meal and children often like the taste, parents must remember that it is also a source of hidden sugar which can further compromise the child's dental health. An alternate source of nutrition such as ragi porridge would definitely reduce your child's sugar exposure.

Hypersensitivity of the oral mucosa is a problem faced by many children with CP. But you must remember that touching the palate, or oral mucous membrane is not necessary in order to clean the teeth. Furthermore, parents must learn to differentiate between a mild irritation, and a gagging or choking. Most children with CP will exhibit some amount of irritation, and you must persist with cleaning the teeth. If however the child is gagging or choking, then you may have to explore alternatives to brushing that will cause less irritation.

Lastly I would recommend an initial check up visit with your Pediatric Dentist. Some if not all the caries in your child's mouth are likely to be in the initial stage. Therefore a simple restoration will save your child from a lot of discomfort. Some of the lesions would also be reversible, and i would recommend an application of a topical fluoride varnish to prevent further decay.

My son is 12 years old and has Spastic Diplegia, his teeth seem forwardly placed. I would like to get  braces for my son's teeth. Is this advisable?

SS Bangalore

Children with Cerebral palsy tend to have proclined teeth and constricted dental arches. The cause for this is usually the force exerted by the facial muscles. Imagine a tight muscle that is continuously pinching your child's face; the result is a set of teeth that are set in a narrow arch and forwardly placed. There is no contraindication for orthodontic treatment. Orthodontic treatment or braces will definitely set the teeth straight, but they won't correct the forces that the muscles on your son's face are exerting. While you will definitely see a better alignment of the teeth after orthodontic treatment, the narrow arch and the general facial features that accompany Spastic Cerebral Palsy are more difficult to treat. Even if they are treated, there is every possiblity that the muscle forces on the teeth will cause a relapse of the original state. My take on Orthodontic treatment for children with CP is this; go for it if you want to correct the alignment of the teeth, but don't expect miracles.

Oral and Dental Health of Children with Cerebral Palsy I - Understanding Their dental Problems

Cerebral palsy (CP) is a term used to describe a group of chronic conditions affecting body movements and muscle coordination.  It is caused by damage to one or more specific areas of the brain, usually occurring during fetal development, or during infancy.  It can also occur before, during or shortly following birth.The condition affects as many as 1 in every 500 children and is  the most commonly occuring neuromuscular disorder. It is not a disease but a condition, and while it cannot be "treated" in the conventional sense, the adoption of 

various therapeutic and preventive measures can certainly improve the quality of life of the individual with cerebral palsy. Over the past three decades, the awareness about the management of children with CP in India has increased dramatically and with that the so has their life expectancy.Where 30 years ago a child with  severe CP would have been given " Five years at most" today such children go on to live for 20 to 30 years. Studies show that with proper medical care the life expectancy for individuals with mild forms of CP is comparable to the general population.

This increased life expectancy has meant that dental care for these children can no longer be viewed as a luxury. Finding a dentist who is trained to treat a child with CP can be difficult, and is almost always (especially in severe cases) expensive. A parent must therefore look out for early signs of dental disease and try their level best to prevent the disease.

 

What Effect Does Cerebral Palsy Have on your Child's Mouth?

Cerebral Palsy and Tooth Decay

The severeity of caries in your child can depend on the level of preventive care

Cerebral palsy by itself does not cause tooth decay. Despite some common misconceptions, CP does not make the teeth more brittle or deficient in calcium. The increased tooth decay seen in children with CP is a direct result of poor oral hygiene. Children with CP have weak co-ordination of the oral muscles. This means that the child cannot swallow as effectively as others, resulting in the accumulation of food in the mouth which increases the risk of 

dental caries or tooth decay. Further, the sweet liquid syrup medications that children with CP are often prescirbed for either epilepsy, or as muscle relaxants, also increase the chance of caries.

Prevention:

Some amount of tooth decay in children with severe cerebral palsy is inevitable, but the severeity of the disease can certainly be controlled, a few points to note are

1. Vigorous maintenance of oral hygiene: Start as soon as the first tooth erupts, with a piece of gauze wrapped around your finger. Avoid touching the palate or floor of the mouth.Due to a sensitive oral mucosa, the child may show violent resistance if  these areas are touched.    
2. By the age of 2 1/2 years, shift to a soft baby brush, you can also start using a pea size drop of any special child toothpaste(See my first post on preventive care). Avoid regular toothpaste as their peppermint flavor may irritate the gums. Their high fluoride content also increases the risk of long term fluoride ingestion by the child.
3. The best time to take your child to the pediatric dentist is by 1 year of age. Any defect in your child's teeth or inadequacy of oral hygeine measures are best spotted early.
4. As soon as your child's teeth have erupted (by three years of age) a coat of flouride varnish to protect them against decay is advisable. Note that the sticky nature of the varnish prevents accidental ingestion of fluoride and is recommended over gels or solutions that your dentist may offer.
5. A fluoridated mouthwash is NOT recommended if your child has difficulty in spitting or swallowing.

Cerebral Palsy and Gum Disease

 Inability to cleanse the oral cavity with the tongue can have devastating effects on the gums. Almost all children with cerebral palsy will have moderate to severe gum disease which can manifest as, bad breath, bleeding from the gums(especially while brushing) and in very severe cases a loosening of the the teeth. Brushing the teeth regulary is the first and most important step in preventing gum disease. However if the child's swallowing pattern is severely compromised then it may not be enough. Therapeutic mouthwashes such as chlorhexidine can reduce the bacteria that cause gum disease but here again the parent should administer them only under the guidance of a dentist who is aware of long term protocol. Though chlorhexidine has almost no systemic adverse effects, it can cause staining of the teeth and increased deposits if used injudiciously. (For more details youcan see the post on therapeutic mouthrinseshttp://specialchilddentistry.blogspot.com/2008/10/dental-care-for-special-children-ii.html)

Several studies have shown that chlorhexidine sprays are effective in children who have problems with rinsing. However these are not yet commercially available in India.

Cerebral Palsy and the Dentition

Children with cerebral palsy often have teeth that protrude. The cause for this protrusion is an imbalance in the muscle forces that are responsible for balanced development of the face. This combined with a tendency to fall, results in a high chance of damage to the Incisors. Parents should take care to supervise the children so as to prevent trauma. Damaged incisors can often result in an inflammation of the teeth which would require root canal treatment.

Enamel hypoplasia: Some but not all children with CP suffer from poorly 

developed teeth or Enamel Hypoplasia. Hypoplastic teeth are weaker and more prone to tooth decay. The cause of hypoplasia is usually the stress factors that occured during or immediately after the birth of the child. The condition is irreversible and there is no treatment.

Cerebral Palsy and Drooling of Saliva

Children with many forms of cerebral palsy may suffer from drooling of saliva. Drooling may be particularly embarrasing for parents and children alike. It results due the poor swallowing ability and weak muscles of the child and is NOT THE RESULT OF EXCESSIVE SALIVA. Since the condition affects even children with mild forms of CP who have no other intellectual disablity, it may be a barrier to them integrating with other children. Parents must however remember that reducing the the salivary flow with drugs does not help treat the condition and has an extremely harmful effect on the teeth of the child.

This post has only briefly touched upon the various oral conditions that are seen in children with cerebral palsy. In future posts i will explain in detail certain conditions and the treatment options available.

For Further Queries you can contact me;

Dr Sharat Chandra Pani

Consultant Pediatric and Preventive Dentist

Senior Lecturer

KVG Dental College

Sullia India

+919886374024

sharatpani@hotmail.com