Promoting quality healthcare for people with disabilities through education about decision-making and true informed consent
A Message from Debbie Badawi, MD
Adults with developmental disabilities are at higher risk than typical adults to have chronic health conditions. However, communication difficulties often present a barrier to quality care. Providers find it challenging to gather needed information from the patient, and as a result the quality of care suffers. There are several steps that can be taken to facilitate communication with an adult patient with a developmental disability in order to allow them to partner in their health care and improve their compliance with medical recommendations:
Determine how the individual communicates and to what extent they are able to participate in decision making. This information can be obtained directly from the individual, from a trusted family member, or from reports of developmental evaluations. Medical decision-making does not have to be an all or none phenomenon. An individual may understand they have asthma and be able to discuss treatment for this condition, but may require help making informed decisions and being compliant with treatment if a new problem arises.
If an individual is likely to need assistance in making decisions, encourage them to identify a health care agent. This is a trusted person who knows your patient well and can provide support when needed, or make decisions if necessary.
During an office visit, tell the individual and/or caregiver what you need to accomplish and ask the best way to do this. Is there a routine or comforting words that can be used? Are there particular parts of the exam that are frightening to the individual? While these activities may seem time-consuming they will save a great deal of time and distress in the long run. Once you and your patient get to know each other, these steps will become automatic.
Check for understanding at the end of the office visit. The individual may need a follow up visit to review key information and confirm understanding, or a family member or friend may need to continue to reinforce information at home.
The important thing to remember is that most individuals with developmental disabilities can and should participate in their health care. This not only improves their health outcomes, but improves their quality of life.
Dr. Debbie Badawi is the Medical Director for the Office for Genetics and Children with Special Health Care Needs, Family Health Administration, Maryland Department of Health and Mental Health. She has been in practice for over 23 years, with a speciality in developmental behavioral health and pediatrics.
A Message from Betsey Petit, RN
As health care professionals, physicians and nurses frequently encounter patients with intellectual disabilities. Yet few of us have experience or training in how to determine each patient’s ability to participate in making decisions about diagnostic testing or treatments. There is a common assumption that a diagnosis of intellectual disability means that a patient is not able to make any of these decisions at any level of complexity.
On the other hand, healthcare professionals recognize that the more a patient participates in his or her own health care, the greater likelihood of positive outcomes. As healthcare professionals, we can foster higher levels of participation by involving patients in their own decision-making to the extent that patients demonstrate their capacity. This requires that we not automatically dismiss a patient's capacity solely on the basis of a diagnosis of intellectual disability. It’s worth the effort to discover each patient’s capacity (regardless of intellectual diagnosis), evaluate it in the context of each decision to be made, and help him or her exercise that capacity to its maximum. The result will be better informed, more cooperative, and healthier patients
Elizabeth “Betsey” Petit, RN is the Director of Quality Advancement for the Arc of Prince George’s County in Maryland; she was previously their Director of Health Services. Having earning her BSN at Catholic University in Washington DC, Betsey, is committed to ensuring the best quality healthcare service for all persons. As the mother of a daughter (now deceased) with multiple disabilies, she has experienced first-hand the challenges of healthcare decision-making that confronts individuals with intellectual disabilities and their families as they navigate today’s complex health care system.
This site developed by Resource Connections, Inc. with a grant from the Maryland Developmental Disabilities Council.