The right to health as described by the World Health Organization (WHO) is an inclusive right that extends beyond basic healthcare – it includes the right to equal opportunities to achieve health, the right to preventative healthcare, and to healthcare that is acceptable and of good quality. In spite of these rights, there is ample evidence that not all patients receive an equal standard of care, even within established healthcare systems.
People with disabilities in particular are reported to face significant barriers in accessing and receiving the same quality of healthcare and preventative services as those without disabilities. In South Africa specifically, those with disabilities have reported increased obstacles to accessing healthcare services as well as disparities in the services they receive compared to their peers without disabilities. This is all the more concerning considering the medical vulnerability of many of these individuals. Equally important is making health information accessible to people who are communication-vulnerable, such as people with disabilities, those with low levels of literacy and refugees.
These increased barriers to quality healthcare are not limited to individuals with permanent disabilities but extend to those who experience short-term or temporary inabilities. Temporary communication disorders may arise in healthcare situations, for example, when a patient is intubated or placed on a ventilator.
The right to access healthcare for all is particularly relevant in view of the announcement by WHO on 11 March that characterised the COVID-19 outbreak as a pandemic. Just like the general public, those with communication difficulties and especially those with comprehension challenges have a right to clear and appropriate information on the virus and management strategies such as social distancing. Furthermore, people with expressive problems may need strategies to talk about their own health status and any symptoms they may experience. Various useful resources have been compiled in this regard2,3.
Although about 80% of those affected recover from COVID-19 without needing special treatment, it is estimated that about one out of every six people who is infected with COVID-19 becomes seriously ill and develops difficulty breathing. The Centers for Disease Control and Prevention estimates that 2.4 million to 21 million Americans will require hospitalisation during the pandemic, and the experience in Italy has shown that about 10 to 25% of hospitalised patients will require ventilation, resulting in an inability to speak. After all, “if it’s hard to breathe, it is hard to speak” 6.
Patients on ventilators may experience a broad range of conditions that make it difficult for them to communicate effectively. The ventilator itself may make speaking difficult as it is attached to the person’s trachea (windpipe) via a tracheostomy tube – an incision is made in the trachea where the tube is inserted. The ventilator is then attached to mechanically move breathable air in and out of the patient’s lungs. Due to the diversion in the way in which air flows, at times it is possible that air does not reach the vocal folds or is diverted out through the person’s mouth. This means the patient does not have the air needed to produce a voice or even a whisper. Even when air can be diverted through the vocal folds and mouth, patients may be too weak to speak.
Being unable to communicate is frightening. It can lead to an increase in medical errors as well as an increased risk of non-adherence to medication. There is also a stronger likelihood of a patient being diagnosed with psychopathology, a higher rate of drug complications, increased risk of delayed care and an increased risk of failure to treat and prevent devastating disease states. An extended length of stay in hospital is another possible outcome.
Implementation of augmentative and alternative communication (AAC) tools and strategies can address the communication needs of people with disabilities and those that are communication-vulnerable by enabling them to express their wants, needs and feelings to healthcare providers and to participate in their own care more productively.
Healthcare providers and patients may feel frustrated by the communication breakdowns that occur due to ventilators – which is why medical personnel need resources and strategies to support communication in alternative ways. The international Patient Provider Communication Forum promotes information sharing, cooperation and collaboration among individuals who are committed to improving communication between patients and healthcare providers (any medical personnel) across the entire healthcare system. With the support of the United States Society of Augmentative and Alternative Communication, the forum is providing a free bank of communication supports to patients and their healthcare workers during this unprecedented time of need.
They suggest that COVID-19 patients may have difficulty understanding healthcare workers when they’re speaking through protective masks, and suggest these tips when communicating with patients who are on ventilators:
- Get the patient’s attention by touching their shoulder or arm and locking eyes.
- Call the patient by name.
- Speak loudly, slowly and distinctly.
- Establish a clear yes-no signal (for example, a head nod/shake; thumb up/closed fist; eye blink/eye shut)
- Put up a sign so all medical personnel understand the yes-no signal
The patient communicates by:
- Speak in simple phrases
- Use visuals while you talk:
- Point and gesture.
- Write keywords or phrases with bullet points on a piece of paper.
- Point to pictures or phrases on a communication board while asking questions about their needs or symptoms.
- Ask one question at a time.
- Tell the patient to point to words on the page.
- Impart one piece of information at a time, pause, then wait (count to 10) for the patient to respond.
For patients on ventilators, a communication board may be useful:
- Go over the communication board ahead of time.
- Explain how it works.
- Point out important icons/words.
- The patient can point to words/letters using a pen or stylus.
- Tell the patient you will take the time to listen.
- Establish a gesture that the patient can use to request the board.
- Share this information with all medical personnel.
- Post the board in the patient’s room.