Speech pathologist Laura Chahda is an associate lecturer and senior tutor at the School of Psychology and Public Health, Latrobe University. She explains how she improves safety and quality of life for palliative patients and what needs to be done to make these services more widely available.

What conditions do your patients typically have, Laura?

I work mostly with adults and elderly people who have neuro-degenerative diseases. I see many adults and elderly people with Parkinson’s disease, motor neurone disease, Huntington’s disease and dementia.

Are there any patients who have had a big impact on you?

There was a woman I met just after she had been diagnosed with motor neurone disease, which was 18 months before her death.

With a progressive and degenerative disease like that, you know what is to happen to you, and it can be quite scary to have that foresight and to know you might reach a stage where you can’t talk at all. There were moments where she was feeling so helpless and upset.

We took a palliative approach, which focussed on how I could make her journey as dignified as possible, during each stage of her deterioration. We then changed and augmented our therapy and strategies as she continued to decline. It was pretty incredible for me to be able to help her shape that journey and to see how absolutely thankful she was that I was on the journey with her.

It made a big difference being there right from the start and being able to give her a little bit more control where ever we could. Things like being able to talk and swallow, which we all take for granted, can mean the world.

One of her goals was to be able to talk to her husband and family right to the very end. Initially we did that using traditional therapy methods. This helped her to maintain and preserve her own talking capabilities for as long as possible and taught her how to use her voice, gestures and over-articulation to its maximal potential to get her message across as clearly as possible.

Then we went to supportive conversation strategies, which people who were speaking with her could use. As her health declined further, we used an augmentative and alternative communication device called ‘Go Talk Express’. It was basically a board with pictures that, when pressed, played an automated message, such as. ‘How are you today?’ or ‘I’m not feeling well’. Her device was personalised to include regular questions and sentences that she might say on a daily basis. She was able to operate this independently and it was fantastic for communicating her basic needs.

She also really enjoyed a glass of wine every day, so we definitely made that a goal in her management.

What is the main thing about speech pathology that people don’t know?

Most people associate us with helping people to communicate, but many don’t understand that we are swallowing specialists as well. Speech pathologists are trained to assess the swallow function and make recommendations so people can eat or swallow their food or drinks safely. That makes a big difference in terms of hydration, nutrition and quality of life.

As people become acutely unwell, their ability to swallow might get affected, depending on the nature of their illness. Dysphagia, the medical term for swallowing problems, can cause a variety of problems for the patient, the most concerning being choking and aspiration pneumonia, which is a complication from food or fluids  going into the lungs, rather than the stomach.

We consider the patient’s medical history to see what could be affecting their swallow. For example, someone’s anatomy can potentially change if they have had a head or neck cancer, or injury to their throat or mouth.

We also assess any behaviours that could be impacting. For example, people with an intellectual disability can sometimes eat quite quickly or may not be able to monitor if they have chewed their food enough before swallowing. We also conduct a neurological assessment to see whether there is any weaknesses in muscles and nerves of the head and neck.

Then we test them on a range of food consistencies and thickness levels for liquid and suggest the best diet to limit fatigue and ensure they are at the lowest possible choking and aspiration risk.

So liquid is safer when it is thickened?

Depending on the patient, it can be yes. Thickening fluids generally slows the rate it goes down the throat and makes it easier to control in the mouth. There are four levels of thickness for dysphagia management, the first being normal fluids like water and the fourth which is extremely thick, like a pudding consistency. We can use a powder or liquid to thicken the fluid.

What impact does the communication side of your work have in palliative care?

When there are communication or speech difficulties and patients can’t express themselves, we can work as the middleman. Ideally, we can help them express their wishes to their family or other members of the health care team and make sure there is nothing lost in translation.

Sometimes we work closely with social workers who are supporting people with writing advance care plans.

If someone has Parkinson’s or motor neurone disease, where there are deficits in their speech or language, we can generally use traditional speech therapy techniques to help them articulate better and speak at a volume that will get their message across as well as possible.

We can introduce high- or low-tech augmentative and alternative communication devices for people whose disease has progressed to a stage where they are not able to respond to traditional therapy. There are many different types of devices and we have the expertise to know what best suits each person, depending on things like whether they can use it independently or not.

Is that something people can access through the public health system?

Generally public funding is available when it comes to dysphagia and swallowing, but when it comes to speech and communications assistance families generally need to pay privately, unless augmentative and alternative communication devices can be accessed through the National Disability Insurance Scheme. This varies however, based on the person and their diagnosis.

What would you like to see improved about the way speech pathologists work as part of palliative care teams?

We don’t get called in enough and when we do, we often get called in far too late. Some people have this misperception that palliative care is relevant only in someone’s last few days. Sometimes I get called in when the person is unconscious, when months or even weeks before I could have created a plan that would have affected the quality of their life at the end of life. The sooner we can get involved the better for everyone.

Have speech pathologists always had a well-recognised role?

Not at all. Palliative care is only just starting to become of interest to speech pathologists in Australia.

Part of the problem is that we have always been trained under a rehabilitative model, which focusses on making people better, rather than working with the understanding that the person will decline regardless of what you do.

We also don’t have any current guidelines for speech pathologists working in palliative care. They would outline what care and treatment is appropriate, where we draw the line on what can be provided and when, and what services can we offer. It is really a grey area at the moment.

Is palliative care part of speech pathologists’ training?

Speech pathology students have very little access to palliative care training, at university or elsewhere.

I am an associate lecturer and senior tutor at La Trobe University’s School of Psychology and Public Health, where I teach a subject called ‘Death, Dying and Grief’. Earlier this year, La Trobe incorporated one palliative lecture into the curriculum for final-year speech pathology students at Bundoora campus here in Melbourne. That was a big win. I think it’s highly unlikely that other universities are offering that.

I’m halfway through my PhD, which is working out what level of palliative care expertise lies within speech pathology at the moment, and how many speech pathologists have the knowledge and confidence to assess and manage a palliative client. I’m planning focus groups with current speech pathologists working in the field to see where knowledge gaps are so we can work out what needs to be done to support new and current speech pathologists to be more regular members of palliative care teams.

After my PhD, my next goal is to start writing with a team of speech pathologists to create clinical practice guidelines for speech pathologists in palliative care, so we can use them to inform the university curriculum. One of my supervisors is Associate Professor Bernice Mathisen, who has also been working tirelessly to try and get palliative care classes and subjects incorporated into the speech pathology degree.

It is early days, but we are doing what we can.

Ms Chahda is presenting at a meeting of Palliative Care Victoria’s Psychological, Spiritual & Bereavement special interest group.
When:  Monday 6 June 2016, 10.30am to 12.30pm (Registrations from 10.00am)
Where:  Room 102/103, ground floor, La Trobe University, 215 Franklin Street, Melbourne
Registration:  http://pssb-sig-6june2016.eventbrite.com.au