What are the types of challenges you face working with patients and carers in a rural area?

Staffing is a constant challenge in a rural area. Each of us in the team needs to cover many areas at once, and that can make providing holistic care to every patient difficult. I quickly learned that I couldn't solve all the problems and rely on the multi-disciplinary team we luckily have here.

Keeping up with the knowledge you need to care for patients is also challenging. Working rural means, you see a wide range of health conditions that lead to speech pathology concerns. However, you don't see each condition often, which makes it hard to develop in-depth knowledge of any specific condition. I learned to attack it by focusing on developing a solid base of information on the mechanism of different speech pathology conditions and treatments instead of pieces of information about specific, less common conditions.

How does a speech therapist support family members?

There are a few things that we do. I support family members in developing and implementing mealtime management plans for that are most comfortable and enjoyable for the patient and their families. This often involves supporting family members to make decisions with the patient around balancing aspiration risk, the patient and carer’s wants and needs about their swallowing, dietary preference, and compensatory strategies. We often support the patient and family member with alternative methods of communication and training in using these where patients have difficulty communicating as their illnesses progress.

With End-of-life care patients in the hospital, I mainly support the family members who have decided to allow the patient to eat and drink with aspiration risks acknowledged in forming a plan to allow the patient, should they wish to, to have the most joy from eating/drinking. This plan is often multi-dimensional; some examples could be a combination of any needed diet modification, change in positioning or suggesting swallow strategies, how to modify food brought in by family members to optimise enjoyment and safety, and providing strategies for giving tastes of enjoyable foods and drinks. Often, these conversations bring patients and family members closer to the reality that they/ their loved ones are passing imminently. I would draw their attention to moments the patients enjoyed their food to help them make choices regarding the patient’s diet and fluids.

How is the carer involved in your work?

Carers are essential in every stage of my service for their loved ones. Carers are my informant, co-decision maker, and sometimes even peer therapist. Carers usually carry out exercises and mealtime management plans, especially for those receiving palliative care at home, and those early in their journey who still wish for functional improvements. Therefore, it is essential to collaborate with them to ensure that their speech pathology plan is practical and in line with the patient and carer’s individual needs.

End-of-life care can be challenging for anyone; do you have any advice around the needs of carers when it comes to communicating with the person they are caring for?

End-of-life care is not only about the person you are caring for, but also about you. Your well-being and grief management are also something we care about. It is often to hold back certain topics when you see your loved one this ill. However, talk about everything with your loved ones. It might be things that you are holding onto, grudges, sorrow or regret. Do bring them up, chances are that they are thinking about the same things. From what I saw, many patients cling to their lives because they are waiting for someone or something to be discussed. Talking about these incidents can help you and your loved ones come to terms and let go in peace when it is time. On the other hand, talking about the loving and happy moments you both shared is also important as these small celebrations of life can also help to let go and go through grievances. 

In what ways do you think CarerHelp can help in supporting carers?

Palliative/end-of-life care is probably not on most people's minds until they need to consider it. Therefore, carers might feel panic or as though they lack information when their loved ones begin to receive palliative/end-of-life care and need to plan forward. I think CarerHelp is an excellent website for patients and their loved ones to start thinking about what needs to be considered, and to access a range of accurate and easy-to-read information to make plans accordingly. It can also be challenging for carers to talk about their feelings, and I think CarerHelp is a great way to support them by providing self-paced online resources focused on the carer's well-being.

Authors:

Christy Chow, Speech Pathologist,