Special Care Patients
The topic of dental care for patients with special needs addresses “the improvement of the oral health of individuals and groups in society who have a physical, sensory, intellectual, mental, medical, emotional, social impairment or disability, or, more often, a combination of a number of these factors” (Training in Special Care Dentistry, Joint Advisory Committee, Sept. 2003). The U.S. government defines persons with disabilities as individuals who have a physical or mental impairment that substantially limits one or more major life activities. Census 2000 identified 49.7 million individuals in the United States with some type of long-lasting condition or disability. In 1993 the U.S. Centers for Disease Control and Prevention (CDC) reported that 1.5 million Americans had been diagnosed as suffering from mental retardation.1 Nursing home residents usually have one or more disabilities. In 1999, the United States had 18,000 nursing facilities with approximately 1.88 million beds. The average facility has 104.5 beds and an 86% occupancy rate.2
Typically the oral health needs of these populations are underserved and such patients often have limited access to oral health care3,4 (see the What’s the Evidence? box). For many, a caregiver must play a central role in taking care of their daily needs. Patients with special care needs provide the dental team with unusual and significant challenges in both planning and delivering dental treatment. The dental team’s consistent focus should be to provide these individuals with a complete range of preventive services and their caregivers with relevant information and support. Such patients deserve optimal care that is consistent with their dental treatment goals and with their cognitive and physical capacity to maintain a healthy oral condition. At the same time, treatment goals must be realistic, taking into account the patient’s temperament, social circumstances and support systems, and mental and physical abilities. Optimal treatment for these patients can range from simple pain relief to complete oral rehabilitation. In some situations, it may be appropriate to provide a complete range of definitive restorative care (with some treatment modification). Optimal care need not always involve a surgical intervention, however, and in some cases may be solely psychological and educational in nature. For instance, many caregivers feel guilty that their loved one’s dentition has deteriorated and feel powerless to help remedy the situation because of the patient’s resistance or lack of cooperation. Indeed, the state of debility for such a patient can be so severe that it may be inappropriate and virtually impossible to provide anything other than palliative care and education. Nevertheless, although the dental team may be unable to provide any treatment, the interpersonal situation may be improved by affirming the caregiver and his or her efforts, and the individual worth of the patient. In short, the responsibility of the oral health care team to these patients and their caregivers goes far beyond the provision of restorative dental treatment.
This chapter focuses on identifying and diagnosing the patient with special care needs and how to plan treatment and manage such an individual’s oral health problems for the short and long term. The scope of this chapter is intentionally broad, and will address diagnostic and management techniques and issues applicable to a wide range of patient conditions that can be considered to reflect special needs. The management of several particularly important special clinical needs is covered in greater detail in other chapters. Treatment planning for the financially or motivationally impaired patient, adolescents, the elderly, the anxious and phobic, the substance abusing individual, patients with oral cancer, and patients with psychological problems is covered in subsequent chapters in this third section of Treatment Planning in Dentistry. This chapter serves as an overview and an introduction to those chapters, and, in addition, discusses a variety of special needs conditions not specifically addressed elsewhere in the book.
The distinction between the patient who is designated “special care” or “special needs” and the more typical dental patient who may need small accommodations to be comfortable during a procedure or to facilitate efficient treatment may sometimes seem indistinct. Indeed, all patients deserve individualized and compassionate, and therefore special care. All patients have a right to expect the dental team to treat them as unique individuals. This may be manifested in many small but significant ways. It may include addressing the patient in a preferred manner, or the way the assistant holds the suction to avoid causing a gag reflex, or using a mouth prop to reduce strain on a sensitive temporomandibular joint. The patient with special needs, although typically seeking the same types of services and therapy, will require an even more intentional, strategic, and individualized approach to care. Broadly speaking, patients with special clinical needs are those patients who live with significant mental, physical, psychological, or medical challenges and who, as a result, require significant modifications to treatment planning and delivery. The following is a representative, although not necessarily all inclusive, list of conditions that can be categorized as representing “special care” or “special needs”:
The patient with special needs may require modifications in both the kind and scope of dental treatment. Certainly specific physical, medical, psychological, or psychosocial problems will have a bearing on the kinds of modifications to the dental treatment plan that will be necessary. Equally important, the severity of the disorder will have an impact on what the necessary modifications will be. For example, an individual with mild autism who can cooperate during restorative procedures and is responsive to preventive therapy may be treated with minimal or no modification to treatment. At the other extreme, a patient in the late stages of Alzheimer’s disease is a poor candidate for anything beyond basic preventive and acute care services.
Recognizing, managing, and treating all oral health care problems presented by individuals with special needs is within the scope of general dentistry. The general dentist has several roles to play in the management of the patient with special needs. Initially the dentist must recognize that a patient has special needs and make appropriate adjustments to the examination process. Often the dental team will need to elicit the help of the patient’s caregiver to negotiate the initial examination. Consultation with other health care providers may also be indicated. If, after completing the examination, the general dentist determines that he or she will be unable to provide comprehensive oral health care for the patient, then referral to another oral health care provider, a hospital dentistry unit, or an academic health center may be indicated.
If the general dentist is able to provide all, or a portion of, the oral health care for the patient, then a plan of care will be generated. The complexity of this plan will depend on many factors, including the patient’s dental needs, the anticipated level of cooperation, the patient’s ability to carry out effective oral self care, and the availability and extent of support from a caregiver. When completed, the general dentist and the dental team will carry out the plan in a compassionate, humane, efficient, and professional manner. Long-term maintenance services will necessarily be provided, taking into account that, in many situations, the patient’s oral and general health may deteriorate. Engaging the assistance of caregivers and health care providers in providing dental therapy and long-term oral health maintenance to the patient is important. Throughout the treatment process, every effort will need to be made to preserve the dignity of the patient and to affirm and encourage the efforts of the caregivers and family.
Educating the patient and caregiver is an important role for the dental team. Patients with special needs and their caregivers should be informed of the importance of oral health and its relationship to systemic health. Involving the patient in the decision making will encourage the individual to assume responsibility for his or her own oral self-care to the extent possible. Beyond what the patient can do alone, the caregiver will need to be actively involved in this process. Often the dentist will need to provide the caregiver with detailed information about the nature, scope, and demands of dental treatment; and to educate the caregiver on how to assist the patient, and the importance of that activity.
Frequently, physicians refer patients with complex conditions to the general dentist for evaluation, treatment of oral infection or disease, or oral rehabilitation so the individual can eat and chew more effectively. A physician or surgeon may also refer the patient to a dentist for oral disease prevention before major medical or surgical interventions. Such referrals would include patients who are scheduled for chemotherapy, organ transplantation, major joint replacement, or radiation therapy. In such situations, it is critical that the dentist diagnose and treat any current or potential source of oral infection before, during, and after the medical intervention.
The dental team has the responsibility to help the patient with special needs maintain a functional, healthy oral condition (see the Dental Team Focus box). For such patients, this can necessitate considerable time, effort, and creativity. The ultimate goal is to help the patient to achieve an optimal state of oral health consistent with what his or her mental and physical condition will allow.
Ideally the patient with special needs will be identified at the time the initial appointment is made through a matter-of-fact query by a member of the office staff: “Do you have any physical or other limitations that we can assist you with upon your arrival?” If the patient answers affirmatively, he or she should first of all be assured that he or she will be welcomed to the practice and that any necessary effort to provide accommodation will be made. The patient should be asked to bring any available medical records and names and contact information for other health care providers; a list of all medications; and any available dental images or records. An effort should also be made to learn whether the patient has a guardian or caregiver, in which case that person should be invited to attend at least the initial visit. Some dental offices find it useful to develop a specific form or questionnaire for such patients, which helps to characterize the special needs and individual expectations. Upon arrival, the patient should be greeted warmly and given an explanation of what to expect at this first visit. If the patient has brought any documentation, forms, questionnaires, or images, these need to be received, recorded, and copied, and returned to the patient (or caregiver) as appropriate. If a caregiver or family member comes with the patient, he or she should be recognized and thanked for any assistance with providing care for the patient in the dental office setting.
After introductions, the patient is escorted to the operatory, and the examination process begins. The patient may be more comfortable if the caregiver or family member is also present during the examination and that should be encouraged. A patient with special care requirements is evaluated in the same basic manner as described in Chapter 1 of this text. An initial attempt should be made to complete the examination in a standard fashion. Depending on the level of the patient’s ability to cooperate, parts of the examination may not be completed effectively. For example, the patient with severe autism or delayed development may not even allow a team member to escort them to an operatory, much less perform an examination. Strategies for managing such a situation are described later in this chapter.
Initially the patient may have difficulty becoming acclimated to the new and strange surroundings. The dental team must be flexible and team members need to be accepting of the patient’s behavior and limitations. As the team converses and interacts with the patient in a kind, gentle, and caring manner, the patient will often lower defenses and allow anxiety to abate. The patient may become comfortable enough to allow at least a brief look, a moderately complete examination or, in a best case scenario, a complete oral examination. If the examination is not completed at the initial visit, the dentist (in consultation with the caregiver) may reappoint the patient, with the goal of completing the examination at a future date when the patient is less stressed and more comfortable with the dental office setting. If the patient is physically unable or mentally incapable of cooperating for a comprehensive evaluation, some form of sedation or general anesthesia may be necessary.
It is critical to evaluate the patient’s chief complaints or concerns to properly address specific needs that the patient or the caregiver perceives to be important. Characterization of the chief concern often gives the dentist a sense of the patient’s or caregiver’s oral health philosophy and knowledge. If the patient is unable to articulate his or her own wishes and concerns, the chief complaint can be derived from a variety of other sources, including family members, physician, caregiver, social worker, or case manager. If the dentist believes that addressing the chief concern is unrealistic or unreasonable, then the issues involved must be articulated to the patient, caregivers, or other family members or individuals who may be involved in the decision making. For example, if the family of an individual with dementia desires complex restorative treatment, but the patient appears uncooperative and lacking in the capacity for preventive care, then the family must be informed that this option is inappropriate and why this is the case. Addressing the chief concern is often the starting place for co-discovery of issues central to the ultimate management of the patient and a touchstone on which to begin the education of the patient and caregivers.
Although important as a baseline of information for all patients, obtaining a thorough and complete health history for the special care patient can be of life preserving significance. Answers to questions regarding hos-pitalizations, major illnesses, surgical procedures and complications, medications, and allergies are essential if the patient is to be treated safely and effectively. Because of the complex physical status of many of these patients, an exclusive use of only a standard health history form with close-ended questions is inadequate.5 Instead, an open format mode of questioning, or a questionnaire supplemented with follow-up questions, is frequently necessary to provide a complete history. In addition to the patient interview, the history can be taken from a variety of other sources, including family members, caregivers, nurses, physicians, case managers, and the patient’s medical records.
The phrasing of questions must be consistent with the patient’s level of understanding and education. Layman’s terms and colloquialisms can appropriately be used to take a good history. Even with this open format, however, it is imperative that the dentist use a standardized and consistent “branching tree” series of questions (Box 10-1).
The review of systems (ROS), an integral part of the health history, consists of a sequential series of questions about each organ system. Inherent in this process are checks and balances that prompt the patient to remember aspects of his or her history that may have been missed in the questionnaire or in previously discussed sections of the history. Key topics to be listed in a typical review of systems are included in Box 10-2.
Many questions on the oral health history are the same as for all patients (for example: frequency of check ups and oral prophylaxis), but there are additional questions that have particular relevance and importance for the patient with special care requirements. It is helpful to know where past dental care occurred (i.e., general dental office setting, hospital based clinic, operating room, or other setting). Did the patient need sedation or general anesthesia? It is also important to learn what type of specialty care the individual has received and the nature of the treatment. The dentist should inquire about each of the dental specialties in an effort to gain a comprehensive understanding of the patient’s dental experience. The patient’s specific daily oral care regimen should be ascertained. It may be necessary to ask caregivers to describe their routines for cleaning the patient’s mouth. In fact, it is important to determine if the patient’s mouth can be cleaned, and whether he or she is cooperative. Important questions to be asked of the patient or caregiver include the following:
An understanding of the nutritional intake and the dietary history is important for any patient, but can be critical for the patient with special needs. Sugary “comfort foods” may be readily available and more appealing than healthier foods. Caregivers may use such foods to pacify their patients and reduce the required care-giving time or lessen caregiver stress. Especially when coupled with poor oral home care, such patients will often be afflicted with many active carious lesions and be at high risk for new caries development. It is therefore very important to educate patients and caregivers about the hazards of a cariogenic diet and suboptimal oral home care.
Impeccable home oral health care can sometimes mitigate the ill effects of a cariogenic diet, but this is often difficult for the special needs patient to achieve. Often the patient does not have the ability to carry out meaningful oral self-care procedures and is resistive to efforts by caregivers. When a patient needs assistance with oral home care and is not responsible for his or her own dietary choices, it may be easier and more effective for the caregiver to modify a cariogenic diet than to maintain good plaque control for the patient. Serious efforts should be made on both fronts, but of the two, diet may actually be the more important variable to control in the long run. See Box 10-3 for some common dietary tips that can be shared with patients and caregivers.
Patients who are deemed to be at high risk for caries are good candidates for the use of a diet diary. Patients with active caries for whom the cause of the dental caries is not clearly evident can definitely benefit from the compilation of a comprehensive diet history. The diet diary can be used to identify hidden and overt sugar and acid sources and can serve as the basis for counseling the patient regarding dietary habits and those food items detrimental to dental and oral health. The patient is usually instructed to keep a diet diary for 5 to 7 days, writing down all food items and beverages consumed (Box 10-4).
When the patient returns to the office, a member of the team reviews the diary in detail with the patient. It is often helpful to circle those food items harmful to the patient’s teeth. Dietary recommendations are then made to the patient (and/or caregiver). At this point, it is often helpful to compose a letter for the patient and caregiver reviewing relevant dietary and oral home care issues, and formalizing the dental team’s recommendations and goals for the patient. (See Box 10-5 for an example.)
A psychosocial history, useful for any comprehensive care dental patient, often carries particular relevance and importance for the patient with special care needs. Information about basic issues, such as the patient’s ability to ambulate and get to the dental office, is essential to being able to provide dental care. Does the patient need an accompanying person? Who will that be? Does the patient need transportation? If so, how will that be arranged? It should not be assumed that because a patient is elderly or handicapped he or she is not employed. An understanding of the patient’s past and present career and employment can have a bearing on the nature and extent of dental treatment that may be desired or appropriate, the timing of dental visits (to accommodate the patient’s work schedule), and financial resources. An understanding of the patient’s support system, schooling, and domiciliary arrangements can give the dentist an idea of how well the patient may be able to follow through with a preventive and restorative plan.
Taking a good psychosocial history also tends to affirm the patient’s humanity and his or her integration into the family unit and society. Trust is gained with the patient and family by this affirmation. A thorough psychosocial history will also disclose relevant habits, including the use of alcohol, tobacco, and illicit drugs, which are discussed at length in Chapters 11 and 12. Oral habits can be commonplace in special needs patients and may impede the success of preventive therapy and negatively impact the outcome of dental treatment. Some common deleterious habits include fingernail or object biting; “doodling” with needles, nails, and other objects; obsessive use of oral health aids; bruxism; and mouth breathing.
The functional history reviews the patient’s past and present ability to live independently and to function in society. Typically this includes an analysis of the patient’s capacity for the activities of daily living (ADL), which is important because it allows the practitioner to evaluate the patient’s physical and cognitive ability to follow through with a preventive, restorative, and maintenance plan of care. Activities of daily living are divided into two major groups; basic and instrumental. (See Box 10-6 for a listing and explanation of activities of daily living.)
For the typical dental patient, the dentist completes all parts of the patient evaluation and, if warranted, a physician consultation is obtained. In the case of patients with complex health concerns and multiple medications, however, this sequence may need to be modified. If the individual comes to the office unattended, he or she may have some difficulty communicating all the necessary health and drug information to the dental team. If the individual comes with an attendant or family member who is not the primary caregiver, the attendant may not have the necessary information either. If the patient lives in a residential care facility, the medical record (or a general health problem list and summary of current medications) can be requested and brought with the patient on the initial visit. It still may be necessary to consult with the patient’s primary care physician, pharmacist, primary caregiver, close family member, or other responsible party who is knowledgeable about the details of the patient’s general health. In many cases, it may be prudent to do this before initiating invasive portions of the clinical examination. This is usually accomplished most effectively by making an immediate telephone contact. Where this is not possible, follow-up contact via phone, fax, or e-mail can be made (with the patient’s permission) before the next visit. Otherwise, arrangements can be made to have other medical records or documentation brought to that next visit. A copy of a recent medical history and physical examination, any recent (less than 12 months ago) hospital discharge summaries, and laboratory reports, such as an EKG (electrocardiogram), CXR (chest x-ray), echocardiogram, and a CBC (complete blood count) with differential are relevant examples of useful documentation. A typical situation in which a consultation with the physician is appropriate is when the patient has an equivocal history of a “heart click” or heart murmur (Box 10-7).
Although in many cases a physician consultation is warranted, it is usually not necessary that it occur before the clinical examination. Often the dental team can complete the portions of the intraoral and extraoral examination and the noninvasive portions of the clinical examination that the patient is able to cooperate with, make a general determination of what dental treatments may be recommended to the patient, and then obtain a medical (or other related) consultation. The procedure and documentation for a referral to a medical provider follow the guidelines discussed in Chapter 1. If a patient with special needs presents for dental treatment and has no established or current relationship with a physician or medical practice, then a referral to a physician for a complete evaluation is necessary. Other cases in which referral to a physician or medical clinic may be warranted include when the dental team believes that they have not obtained a complete or accurate health history, or when the patient exhibits signs of an emerging health problem or signs that a preexisting condition is not under adequate control. Generally, referral should be to an internal medicine physician. A referral letter should be sent along with the patient or care provider giving a brief explanation of planned treatment, anticipated blood loss if any, time in the chair, and medications to be used. The physician should be queried about the diagnosis and management of any health problems that are relevant to den/>