A speech-language pathologist (SLP) told me a story of a patient that s/he worked with and how the penny had finally dropped following some talks attended and papers read on the topic of the bigger picture in dysphagia work. Something niggled away in the mind about the outcome of therapy with a certain patient. The SLP had done a competent job, thorough assessment, evidence based intervention, wrote measurable goals, abided by the Scope of Practice, the patient achieved the goals and almost everyone was happy. So why the lingering doubt?
“Fred” was a retired mechanic who loved baseball. He had been using a gastrostomy feeding tube for all of his food and liquid intake for over four years following a devastating brainstem stroke. Spitting into a cup was routine due to difficulty managing saliva. He requested assistance from speech-language pathology services for therapy to be able to eat by mouth. He had a very supportive family and he was very motivated.
The SLP felt that Fred was an excellent candidate for an aggressive dysphagia rehabilitation program. Fred’s goal was “to be able to eat by mouth”. The SLP thought that if the Fred could eat every meal by mouth then it was mission accomplished! After 4 weeks and 24 sessions of daily hard work, Fred was eating a mechanical soft diet and thin liquids and taking all medications by mouth. The goal was met and the patient was discharged – the family was thrilled.
I fear that in our drive to know more and more about the intricacies of the swallow we have somehow lost sight of the bigger picture, the purpose of eating and drinking.
Did we reach the goal?
Fred took about 1½ hours to finish a meal. Swallowing was an effortful process that had to be attended to consciously for every bite. It required complete focus and full attention with head straight and no talking. Several months later during a telephone follow-up Fred said that his eating remained stable with no negative consequences, such as the feared chest infections, from being on the oral diet. But Fred sounded melancholy despite reaching his goal. It was not that he was ungrateful or not happy to eat… rather that he did not enjoy eating anymore.
The playoffs in Major League Baseball had started when Fred made the call. Fred and his SLP talked about baseball and Fred said “do you know how much I’d love to go to a ball game and eat a hot dog?” The SLP told me that s/he did not have much to say in response at the time but later reflected: was it really the hot dog that Fred wanted or was it the situation surrounding the hot dog? Perhaps Fred’s goal was not well established because it seemed to go much further than putting food in the mouth but rather being enveloped into the sights, sounds, conversations that revolved around food.
People with dysphagia: The swallow it ain’t
Fred could not eat around friends and family and enjoy conversations surrounding the meal. How often have you advised patients and families to minimize distractions? This is well meaning advice with a good rationale: concentrate on the eating process to reduce the risk of say aspiration. The ASHA Code of Ethics Principle I, paragraph I requires that:
Individuals shall evaluate the effectiveness of services rendered and of products dispensed, and they shall provide services or dispense products only when benefit can reasonably be expected.
(American Speech-Language-Hearing Association, 2010r)
We need to think as carefully about what that benefit may encompass as we do about the patient’s cranial nerves and biomechanics. The Patient Self-Determination Act (1990) requires relevant providers to give individuals certain information about their rights under state laws regarding advance directives and that individuals have the right to:
“participate in and direct their own health care decisions”
(“Patient Self Determination Act,” 1990)
Thus SLPs are duty bound to evaluate effectiveness and potential benefit and to include patients in the design of suitable outcomes – for the patient. This requires us to not just ask a patient what can I do to help you, but to enable the patient to figure out what is important to them and how our services may support that. This is often not at surface level in people’s minds particularly when their whole life has been upset by an illness or accident.
What does it mean to eat?
Where do eating and drinking sit within life’s activities? Very few people think first of the nutrition and hydration needs of a body when they think of eating and drinking. We think of sharing coffee and a chat with a neighbor, of celebrating a holiday gathering, remembrance of a person or place now far away. Thanksgiving dinner of a roast vegetable stew with brown rice followed by fresh fruit would be far better for us than a greasy, roast bird with mashed vegetables with cream, spiced sugary pies and beer… but would it be Thanksgiving? We think of the activity associated with the food often before we think of the food, and certainly before we think of how we will swallow each morsel. Perhaps Fred’s goal was not so much recovery of the mechanics of the swallow, but rather the golden ticket that such ability would bring? If I can eat again I can go to the game with my friends and family – I can recover a life lost to me.
What does success in treatment mean to a patient with a swallow problem?
We, the speech-language pathology profession, and others involved in the care of people with swallowing have reduced a complex, highly meaningful psychosocial activity to a purely biomechanical action. And this may be where we are failing our patients. We have their best interests in mind of course: we feel that we are being beneficent (doing good) and non-maleficent (not doing harm). We attend to research evidence and we may even continue our learning and undertake assessment to become a specialist in swallowing disorders.
I fear that in our drive to know more and more about the intricacies of the swallow we have somehow lost sight of the bigger picture, the purpose of eating and drinking. For many patients improvement in their swallow abilities will be measured in the activities that they can participate in again, the return to a life taken from them. To ensure this, us swallow experts have to take a step back and find out what eating and drinking meant to a person and their family. Then to frame the rehabilitation of the swallow within that meaningful experience as much as to attend to the biomechanics.
For Fred, The Dog was the representation of his life: friends, history, the energy of the game, victory or commiseration, and all those things his SLP reduced to could he swallow a bit of food in a safe, controlled, sterile way. The SLP’s doubt was well founded: the right goal was not targeted and that is why the outcome was not the success hoped for. Some patients with dysphagia will feel improvement in their life with just the physical ability to consume some/more food and drink orally and to have to attend to the activity as closely as any other complex, risky task. For others (more than we realize) it is not the swallow that dysphagia has disrupted but their participation in life. We do our patients and our clinical selves a huge disservice if we do not attend to what a working swallow allows us to do in life.
- American Speech-Language-Hearing Association. (2010r). Code of Ethics. Retrieved from http://www.asha.org/policy/ET2010-00309/
- Patient Self Determination Act, § 1395cc (a) (1) (1990).