Circles of care for people with intellectual and developmental disabilities

Communication

The family physician as communicator: Communication is a fundamental skill for Canadian family physicians.⁷ Studies show that family physicians feel that they are competent in communicating with patients with mild and moderate IDD.⁸ When studies compared family physicians’ skills with the skills that people with IDD value in their physicians, there was agreement on most of these skills. What did not match, however, was the difference in expectations of family physicians and patients with IDD regarding the time needed for the clinical encounter, the need for an explanation of the physical examination, and communication among the physician, patient, and caregiver (triadic communication).⁹ Patients believed the key strengths of their family physicians were their ability to listen, their willingness to support various communication strategies, and their assistance in navigating the health care system.¹⁰ Other patients with IDD, however, thought that they were rushed and not listened to, stating, “Doctors are over worked and over stretched.”¹¹

Communicating with people with IDD and practical tips for the family physician: People with IDD communicate in many ways: verbal, symbolic (signs, pictures, picture exchange communication systems), and pre-symbolic (gestures, facial expression, body language). Those who have verbal skills might have better expressive than receptive language, displaying extensive vocabulary and using words in the right context. However, these phrases might have been memorized from past experiences and might not be fully understood. It is vital, as with all patients, to verify comprehension by asking them what they understand and providing written instruction to avoid dangerous misunderstandings.

In order to optimize communication, family physicians should look directly at their patients, speak slowly and clearly, avoid jargon, and consider using pictures and drawings. The level of IDD, certain medications, motor skills, and anxiety can all affect communication skills. With this in mind, it is important for family physicians to provide information in the form that the patient is most likely to understand, and to provide it at the time when they are most likely to understand it.¹²

When family physicians attempt to communicate with people with IDD who communicate pre-symbolically, like Thelma, they need to go beyond typical patient-centred competencies of rapport building. They should align themselves emotionally and behaviourally with such patients in order to understand the subtleties of their communication, which involves a process called attuning. How well people attune to one another is manifested in the degree to which they empathize and cooperate with each other.¹³ Various techniques can be used to develop one’s attuning skills. One example is to “recognize the individual,” which means being able to see the person as likable and self-determined, and to connect with them through building trust and respect while sharing moments of humour and fun.¹⁴ It is important for family physicians to remember that attempts at communication are expressions of our patients’ autonomy, and their behaviour is purposeful communication. When interpreted correctly, such behaviour can be an opportunity to understand and acknowledge the self-determination of the other.¹⁵ In Thelma’s case, her caregivers’ modification of the pain scale offered an opportunity for her gestures and vocalizations to be understood, not medicated.

Tips for triadic communication: Much of physicians’ communication with patients with IDD is triadic. When participating in a 3-way conversation, it is important for the family physician to have an approach that can be tailored to the patient’s needs. Table 1 outlines an adapted summary of the approaches of several authors.^11,16,17

Collaboration and triadic communication: In triadic communications, the patient is the focus and the triad forms the base of the collaborative network (the PMH). Good triadic exchange is strongly linked to matters of autonomy and the self-determination of the person with IDD.¹⁸ This approach can be time-consuming, especially for the solo family physician, as it requires conscious attention to how the patient and the practitioner themselves are communicating. The benefit to this time investment is improved health care for the person with IDD⁵—a downstream improvement in collaboration and coordination (Figure 1).

• Download figure
• Open in new tab

Figure 1.

Circles of care: Communication, collaboration, and coordination.

Triadic communication is essential to gathering health care data, informing decision making, and constructing and executing a patient’s care plan; it is the foundation of HIE and depends on the availability of caregivers, who act as sources, interpreters, and record keepers of the patient’s health information.¹⁸ When triadic communication breaks down, patient-centred care is affected, advocacy is hindered, and gaps occur in the care plan, all of which put the patient’s health at risk. Physicians feel that optimal health care delivery for people with IDD requires consistent caregivers who have the capacity, interest, and motivation to be part of the health assessment process¹⁹; caregivers think improvements could be seen if family physicians were willing to provide support outside of the office consultation, for example by being available by telephone to speak to group home supervisors or family members for collateral history.¹⁸ Family physicians and caregivers alike could benefit from more training in the area of triadic communication.^8,17,18 Also, assigning tasks to both the family physician and caregiver before, during, and after the consultation might improve the collaborative process.^5,20

Collaboration within the PMH: The concept of the PMH, endorsed by the College of Family Physicians of Canada,²¹ provides a useful model for augmenting collaboration in primary care for people with IDD.⁶ The College’s recommendation for the PMH is that it is patient-centred and individualized, in keeping with community-based resources.⁶ Based on the individual’s needs, team members might include physicians, nurses, clergy, physiotherapists, occupational therapists, social workers, friends, speech-language pathologists, administrative assistants, behavioural therapists, teachers, medical specialists, and neighbours.

Another aspect of the PMH is that it allows for unique approaches to accommodating a specific patient’s needs. These adaptations could include modifying the clinic so that patients with IDD are able to bypass busy waiting rooms, having wheelchair-accessible clinics and examination tables, and, in some cases, offering home visits.

In the United States, using a PMH model for people with IDD led to reduced emergency department use, reduced length of hospitalizations, improved preventive care and chronic disease management, improved case coordination, and increased patient and caregiver satisfaction.⁶

Coordination strategies for the family physician.

Coordination unifies communication and collaboration, and the family physician plays an integral role in this capacity. There are several ways in which a family physician might take on the role of coordinator in providing care for a patient with IDD: coordinating information, medical procedures, and the care team.

Coordinating information: Effective HIE is beneficial for the care of patients with IDD.⁵ One specific example is the use of hand-held health records—medical summaries that patients carry with them. These tools lead to more discussion about health problems, increase health-related knowledge, and increase awareness of personal health issues for people with IDD.²² Further, when health actions were recorded in a hand-held health record, there was improved health care of people with IDD in the short term.²³

It is not enough, however, for people with IDD to have health assessments and hand-held records of medical history; there must also be an action plan that travels with the patient.⁴ Several recommendations have been made regarding coordination of health care for people with IDD, including assigning a health care coordinator for people with complex health needs, and providing hand-held health records to these patients.⁴

In Hilary’s case, a hand-held record might have helped the ward staff to understand her baseline function, speech, and typical behaviour, and to recognize her continued discomfort. There are several examples of hand-held health records being used in Canada, including the Comprehensive Health Assessment Program, About Me: My Health Information, the Health Information Passport, and Coordinated Care Plans.^24–27 The option of a patient carrying an electronic data storage device (USB key) containing his or her medical record allows for a document that can be edited; however, most of the examples of hand-held health records currently used are in paper format.⁴ For effective HIE, these records should be available online to allow multiple providers to input and access them readily.

Coordinating medical procedures: As health advocates, family physicians coordinate medical investigations and procedures for their patients. As in Hilary’s case, procedures such as imaging tests and phlebotomy can be difficult for people with IDD owing to fear, lack of understanding, and communication barriers. A specific example of a family physician advocating for their patients who are unable to tolerate having their blood drawn would be to coordinate phlebotomy to occur while the patient is under general anesthetic for another medical procedure. In Hilary’s case, her ICU team coordinated her medical procedures to occur when family and favourite, comforting items were close by. These simple acts of coordination facilitated the successful completion of Hilary’s medical procedures with reduced distress.

Coordinating the health care team: The PMH will vary in its composition depending on the needs of the patient, resources available, and geographic location. The PMH is a virtual hub from which a family physician, health care provider, or family takes responsibility for coordinating medical services that might or might not be taking place in a traditional collaborative setting. Often, it is assumed that the family physician will take on the responsibility of being the gatekeeper and coordinator of the medical information; however, the members of the PMH might agree to designate another team member to lead, such as a social worker, the parent, or the group home supervisor. Health care teams should discuss and decide who should take on this responsibility. This can be helpful for a family physician working in a solo practice. It allows him or her to delegate collaboration and coordination to other team members while remaining a key collaborator and modeling strong communication skills to members of the PMH to ensure safe, high-quality patient care.

The 2018 Canadian consensus guidelines for primary care of adults with IDD highlight the importance of interprofessional primary care teams in coordinating medical care and services for patients with IDD.² These teams are especially vital for addressing complex medical, mental health, and behavioural concerns.^28,29 Having the family physician participate in periodic team meetings can facilitate collaboration and communication with patients and their families when implementing care plans. In one example, having access to a behavioural therapist to negotiate a care plan with the patient and the team resulted in reduced use of psychotropic medications.²⁹ We acknowledge interprofessional teams are not available to all Canadian family physicians, and there is a dire need for access to skilled mental health services and behavioural therapy for patients with IDD. More research is needed in this area to find innovative, efficient, and fiscally responsible ways to use scarce mental health and behavioural resources that will serve all Canadians with IDD who need such resources.