Making health care fit the patient

Ensuring appropriate access to health care professionals is essential for the maintenance of good health and well-being, and an important first step to preventing and minimizing illness over the course of a person’s life. Community Living Manitoba is dedicated to the full inclusion of individuals with intellectual disabilities into all aspects of community life. We are concerned about people who live with intellectual disabilities and/or autism and the lack of reliable and accommodating access to health care in Manitoba.

We have heard examples of people with these disabilities being subject to procedures they do not require because they cannot communicate with their care team verbally. For example, a person with such disabilities was about to be taken for dialysis but was not able to communicate that they did not require dialysis. An advocate arrived in time to question the procedure, and it turned out that the health care professional was looking at another patient’s chart. Fortunately, the patient was spared an unnecessary procedure.

In another case, a woman was in the hospital with her legal advocate. They were told that the patient was to be taken for x-rays, and the advocate stepped out while this was to take place. When the advocate returned, they learned that the breathing tube had been removed from the patient — a procedure that had been decided by the staff and not communicated to either the patient or the advocate, resulting in significant trauma and breathing challenges. Thankfully, the breathing challenges have been reversed, but the trauma remains.

It is important to consider the whole person each and every time any patient comes into contact with someone in the health care system. This is especially true for persons with intellectual disabilities and/or autism. Health care professionals need to know relevant information about various disabling conditions and how they might affect the health of a person.

On the other hand, care must be taken to ensure that a disability isn’t used as the sole explanation for a potential health problem resulting in a failure to look for causes of discomfort or ill health, which can lead to no diagnosis, or a misdiagnosis and ultimately results in poorer health outcomes. This process is referred to as diagnostic overshadowing and is just one issue facing this patient population.

Access to good health care is a longstanding issue in a complex system. Building awareness among policy makers and health care practitioners about the situation of individuals with intellectual disabilities and/or autism is essential.

Changing current practice in our health care system to become responsive and effective in caring for this group is our ultimate objective.

In a 2021 study conducted on behalf of Community Living Manitoba, researchers learned that many individuals with intellectual disabilities and/or autism are asked if they have a standing Do Not Resuscitate (DNR) order in place.

This was the case not because they were ill, but because they lived with disabilities. This illustrates the concern of many citizens with disabilities that low or negative expectations of, and attitudes about them, may influence life or death decisions while receiving health care.

Practices such as this cannot stand. What steps might be taken in order to begin to make a difference?

First, requiring pre- and in-service education for all health practitioners (physicians, nurses, and allied health care professionals) regarding the social situation of individuals with intellectual disabilities and/or autism.

This must include consideration of the assumptions, consciously held or not, about this group and what their place is in society, and what they deserve as members of our society. Information on potential ways of providing effective care in response to specific conditions is also necessary.

While education is an important first step, it is not sufficient.

As a second step, we must ensure hospitals, clinics, and physician offices are physically accessible. In some cases, individuals will be accompanied by a family member as well as assistants who provide needed support.

Consulting rooms must be large enough to accommodate advocates, as well as wheelchairs or other mobility equipment. Examination tables must also be accessible for individuals with limited mobility. Fluorescent lights may trigger certain types of seizures or headaches for some people with sensory difficulties. These difficulties are at times common for, but not limited to, those with autism and make a visit to the doctor much more stressful for all concerned.

Finding ways to minimize wait times is an important third step that would help everyone experience the health care system more positively. This is especially true for individuals who may not understand why they don’t feel well, and why they have to wait in an unfamiliar, uncomfortable, busy, and noisy place.

Reduced and predictable wait times mean that some people will not be tired, hungry, and/or agitated when they get to see a healthcare professional.

Along with shorter wait times, health care professionals must have enough time with each person in order to make a proper diagnosis. A 15-minute appointment may be enough time for routine consultations, but it is rarely enough time for individuals who have difficulty in communicating. The provincial billing system makes compensation for longer visits challenging. This impacts physicians’ and nurses’ ability to get the information they need and may result in patients and their caregivers not fully understanding what is happening and what they should be doing to protect their health.

In addition to ongoing care that will help individuals with intellectual and developmental disabilities to achieve and maintain their physical health, this group will also benefit from good psychological and psychiatric care. This means that they should have access to qualified personnel and specialists when needed, and that the practitioners have had relevant training to enable them to provide helpful and effective care.

Introducing clear standards of care and practice for all health care professionals regarding the treatment of individuals with intellectual disabilities and/or autism in Manitoba is essential. Community Living Manitoba invites all relevant parties to develop and adopt such standards immediately.

Audra Latschislaw is executive director of Community Living Manitoba.