As patients approach the end of life, it can be __________ to make ______decisions about dysphagia management.
trickier, ethical
What must we establish a balance between?
A balance between nutrition , pleasure from tasting food and drink, the distress associated with an unsafe swallow. obviously aspiration risk.
Apart from making clinical decisions, what else is important when making recommendations regarding end of life management?
Liason with family and patient.
What does Bogaard et. al and Yamagishi et. al recommend is required in the end stages of life?
Information rather than rehabilitation.
Name the 4 clinical recommendations that Yamagishi et. al make?
- relieving the family members’ sense of helplessness and guilt
- providing up-to-date information about hydration and nutrition at the end of life
- understanding family members’ concerns and providing emotional support
- relieving the patient’s symptoms.
What may take place at end of life, in terms of feeding?
Risk feeding or comfort feeding.
What is risk feeding/comfort feeding?
Where the patient is hand fed substances don’t cause distress or excessive coughing episodes with the intent of providing maximum comfort and satisfaction, rather than a sufficient amount of calories.
Bogaard et al. advise that any feeding is proportional…
to the level of distress caused by the intervention .
How is quality of life assessed?
Through quantitative assessment.
Name an example of an assessment used to evaluate quality of life quantitatively with dysphagia patients.
SWAL QOL- dysphagia caused by neurological disorders aswell as cancer patients.
What are these examples of?
- MD Anderson Dysphagia Inventory
- Deglution Handicap Index
- Dysphagia Handicap Index
Assessments to asses the quality of life.
Who is the MD Anderson Dysphagia Inventory for?
Head and neck cancer patients
What do QOL assessments aim to do?
Capture the consequences of dysphagia as well as the specific difficulties the patient faces.
Name some social issues dysphagia patients may face.
- Avoidance of eating with others
- Social Isolation
- Embarrassment
- Social stigma associated with a modified diet/baby food
Name some psychological issues dysphagia patients may face.
- reduced mealtime enjoyment
- fear of choking
- stress
- anxiety/panic
- depression
Patients can react to dysphagia in different ways, depending on their relationship with…
food and drink.
What can influence a person’s emotional reaction to dysphagia?
whether they are in an acute phase (30-42 days post onset) of dysphagia
or
chronic phase (9 months- 7yrs 3 months)
of dysphagia
What are some emotional reactions in the acute phase of dysphagia?
- Fear
- Vulnerability
- Depression
- Frustration
What are some emotional reactions in the chronic phase of dysphagia?
- Depression
- Frustration
- Worry
- Embarrassment
- Vulnerability
The ______ the dysphagia, the more negative the HRQOL.
Worse.
What does HRQOL stand for?
Health-Related Quality of Life.
As well as the impact on the patient, who else should we consider?
- Family
- Unpaid carers
- maybe even paid carers
What are paid carers generally more familiar with?
They are more familiar with feeding dysphagia patients and may be less anxious about doing so.
The idea of caring for someone with dysphagia tends to give people _____ (more so than if they don’t).
Anxiety.
