Swallowing Restrictions vs. Patient Wishes: Tips when patient also has cognitive deficits like Dementia

As a Speech-Language Pathologist, you have most likely come across a difficult situation like the following. You get a referral for a dementia patient who has swallowing difficulties. You determine they are aspirating on thin liquids, can no longer effectively chew regular solids, are having difficulty processing how to feed themselves, and are not getting through an entire meal with adequate intake. So you make a recommendation for: 1) a modified diet, including nectar thick liquids 2) compensatory strategies and 3) caregiver training with feeding assistance. Fast-forward to a week later. Staff and nursing are reporting that the patient hates the food and is refusing the nectar thick liquids.  What do you do? How do you balance the patients’ wish for a regular diet with their aspiration risk given the context of their cognitive impairment and impaired decision-making skills?

A Systematic Approach

There’s no easy answer to this question, but as experienced practitioners we’re used to that, right?! To help us along the way though, is a great article published in the ASHA Leader that does a wonderful job of breaking this approach down into consumable bits. There is a much appreciated brush-up on capacity vs. competence and the principles of beneficence and autonomy. It also reminds us of our due diligence, ethics, and the importance of patient and family cultural, ethnic, socioeconomic, and racial backgrounds.

Say what?

Why are these important for this topic? Well – each play a critical role when developing a patients’ plan of care.  And all help to direct us into a holistic patient-centered approach. Balancing clinical recommendations, patient’s wants and wishes, family contributions, and the role of proxy decision-makers is key. Remember, the ultimate goal is to improve patient quality of life. And as we know, the risk for aspirating is never zero! As always – educate, educate, educate AND document, document, document!