Browsing the shelves of the library looking for books on communication in dementia, I came across Anne-Mei The’s In Death’s Waiting Room: Living and Dying with Dementia in a Multicultural Society (Rotterdam University Press, 2008).
The book is written as an anthropological, first-person narrative in two sections. The first tells of the author’s experiences observing life in a Dutch nursing home over two years, talking with managers, doctors, care staff, patients and family-members. The second recounts ‘the Blauwbörgje Case’; a case of alleged attempted murder involving a resident of a different home with advanced Alzheimer’s Disease.
Each section is broken up into chronologically ordered episodes. The’s focus is fine-grained, revealing truths about the position of aging in society through small anecdotes. The second section centers around primary documents (such as police reports) and interviews The conducted four years after the incident.
The most intriguing and complex issue discussed is how elderly people die. The problematises the binary between treatment/no-treatment, revealing the choice is always blurry and murky, and that these choices are not one-offs, but continue throughout a patient’s admission. Conversations with doctors reveal stark reasoning about particular treatments: doctors tend to plan treatments not necessarily on the advice of family, but in response to how ready they believe the families are to accept their loved-one’s death.
Her description of the Blauwbörgje case offers few solutions for those seeking to tidy the complex issues surrounding end of life care. Mr Bruggeling was admitted to overnight nursing home care in the context of acute infection on background of early-onset Alzheimer’s Disease (he was in his late-fifties). Over the course of his care, the home enforced its end-of-life care policy, which was not to artificially hydrate or feed patients with late-stage dementia. Mr Bruggeling’s daughter became aware of the situation, and demanded the staff insert a drip. When they refused, she discharged her father, and took him to a hospital, where he was rehydrated. Mr Bruggeling was eventually placed in a different nursing home where he lived for five further years. His daughter pursued criminal charges against the nursing home and its doctor, but these were eventually dismissed. The doctor died of leukemia a few years after the incident.
Many interviewees reflect on the incident and diagnose a failure of communication to be responsible for the drama. The is more circumspect, and states that while communication could have helped, it was difficult to anticipate the complex family dynamic between Mr Bruggeling’s ex-wife and his daughter, who often perceived facts differently. His daughter held that he was cogniscent of her presence, and participated in activities in the home. The nursing home staff disagreed, stating that he was unable to participate in any social activity (even acknowledging another person’s presence), and was for all intents and purposes, gone.
The suggests the strong media-driven backlash against the ‘policy’ of versterven (‘refraining from artificially and hydrating nursing home residents with advanced Alzheimer’s disease’) was driven firstly by a misunderstanding of what modern medicine has become, and secondly by a dangerous lack of knowledge about the nature of aged care. People continue to associate medicine with an illness-cure cycle, rather than interventions that promote function and participation. Medicine, unfortunately, continues to structure itself to respond to episodic, curable illness, rather than the chronic, progressive illness that pervades modern aging. Thus the idea of a doctor refusing treatment to one who may live another four years may seem difficult for a layperson to understand. The also reveals the segregation in aged-care: low-cost migrants from old Dutch colonies predominantly staff nursing homes in the Netherlands, and what happens in these places is hidden from the view of society. Or perhaps more accurately society chooses to cover its eyes.
One final note: it was interesting to see how prominent issues of eating and drinking are in end-of-life care. At least in the homes studied by The, there was no mention of the role of Speech Pathologists in assessing eating/drinking safety and function. While I’m sure the situation is somewhat better in Australia, I do wonder how many older people are written off simply because they are not being provided with appropriate meal modifications.
Last week I had the immense privilege of attending a two-day workshop given by Dr Katherine Verdolini, covering her rather wordily named Lessac-Madsen Resonant Voice Therapy and Casper-Stone Confidential Flow Therapy (or LMRVT and CSCFT!). The programs are (I believe) proprietary, so I won’t talk about them too much.
However, Dr Verdolini did not limit the talk to the mechanics of voice therapy. She also talked at length about motor learning theory, patient compliance, and evidence-based practice. Her view was that while EBP is generally a good thing, the movement at present suffers from a number of flaws, which I’ll briefly summarise.
- Systematic reviews of quality RCTs are considered the highest level of evidence, with clinical experience, available resources and patient preferences being consigned to the bottom of the ‘evidence pyramid’.
- But RCTs will only tell you what will generally work for the ‘average’ patient, and these studies often exclude patients with complications – which are often the patients we see.
- We develop a false sense of security with EBP that the research was external to the clinical reality it was measuring, when of course it took place within it.
I recall being in a clinic where I was working one-on-one with a ten-year-old boy with severe ASD. He was largely non-verbal, and we tried to convey the structure of his day to him through the use of a visual schedule. My clinic partner and I suggested supplementing the visual schedule with a ‘now/next’ board:
To keep our client oriented to the task, we would point to the board and say “Now we are doing X, then we will do Y” etc. I remember being surprised when my clinical educator asked if there was evidence regarding the use of such boards, in particular if there was evidence that colouring each space differently would be more effective.
I was a bit surprised. After all, it seemed obvious that it would, unless the client was colour-blind. What was absent from my CE’s comment was an exercise of clinical judgement – not every facet of our practice needs to be interrogated for its efficacy.
I believe what tends to happen is that EBP is used as a mallet to hit people on the head with. Evidence! Evidence! Evidence! Practicing clinicians are constantly told to integrate evidence into their practice, and for them, evidence is not clinical experience or consideration of patient preferences. Instead, they can have a narrow conception of EBP as being “that . . . double blinded, controlled thing.” (1). This conception probably comes from university courses which stress the evidence hierarchy, and actively ask students to challenge themselves if their thinking is ‘evidence-based’, which seems to be code for ‘I have read the systematic review’.
To put it simply, journal articles and other formal evidence is one piece of the puzzle for clinicians. If it were as simple as implementing a checklist from a guideline, SPs wouldn’t be counted as ‘professionals’ – we would be more like factory-workers. We add value from our ability to consider all issues: our resources, the patient’s/family’s preferences, the published evidence, and our experience in order to implement care.
In other news
One area which could probably do with more EBP is hydration in dysphagia management. I have talked about this before:
In the latest issue of IJSLP, I note a paper by a team from Curtin Uni (2), reporting that of all the factors considered by clinicians in bedside dysphagia assessment (such as oro-motor ability, oral hygiene, alertness, etc.), hydration status was considered the least, with less than 40% SPs surveyed reporting they usually or always consider hydration in their assessment.
This is worrying, considering the implications of dehydration, and the possible lack of coordination between dietetics and speech pathology regarding this issue.
However, more positively, I note that a student at JCU is investigating the impact of diet modifications on quality-of-life in dysphagic patients. I eagerly anticipate the results.
- Foster, A., Worrall, L., Rose, M., & O’Halloran, R. (2015). ‘That doesn’t translate’: the role of evidence-based practice in disempowering speech pathologists in acute aphasia management. Int J Lang Commun Disord. doi: 10.1111/1460-6984.12155
- Vogels, B., Cartwright, J., & Cocks, N. (2015). The bedside assessment practices of speech-language pathologists in adult dysphagia. Int J Speech Lang Pathol, 17(4), 390-400. doi: 10.3109/17549507.2014.979877
In my previous post, I discussed the impact of thickened fluid prescriptions on quality of life and hydration. The hospital where I’m currently completing an entry-level placement has implemented a quasi-Free Water Protocol along the lines of the famous Frazier Water Protocol. The protocol was developed as the result of a series of underlying assumptions:
- Water is safe
- Water is good for you
- Patients want water – they like it more and it’s easier for them to get.
Indeed, as is now well know, dysphagia is not a primary cause of aspiration pneumonia . People aspirate all the time, and restricting their fluid intake will not stop them aspirating their secretions or reflux; which can transport oral colonies of bacteria to the lungs anyway.
The protocol is fairly straightforward:
- Patients who are not impulsive, or do not cough excessively on water are permitted free access to water between meals (they recommend a 30min gap post-meal, but this is arbitrary).
- Compensations (e.g. single-sips, with a teaspoon, postural compensations, etc.) are advised on a case-by-case basis.
- Oral health is closely monitored, and oral hygiene is provided for patients unable to attend to it themselves.
- An early study  found that access to free water did not significantly increase oral intake of fluids, but the group with access to free water reported much greater satisfaction with this option. None of the clients (10 controls, 10 in trial – all in the acute stage of stroke, with strict inclusion criteria) experienced dehydration or pneumonia. The authors did not look at any of the factors identified as risks for pneumonia in Langmore’s study .
- An Australian study carried out at a tertiary hospital in regional Victoria  found that about 15% of the acute patients on a free-water protocol developed lung related complications (six patients: two with Alzheimer’s, two with Parkinsons, one with an Intellectual Disabiltiy, and one with Cancer; all were immobile or had poor mobility). The intervention group did drink >300mL more fluids on average than those on thickened fluids only; and was much happier about the fluids provided, their level of thirst and mouth cleanliness.
- A much smaller follow-up to this study  found that restricting the protocol to those without poor/no mobility or severe degenerative neurological dysfunction, resulted in none of the intervention group developing pneumonia.
- Neither of the papers noted if the patients with poor mobility/cognition were supervised when they access to free water – this is explicitly mentioned in the protocol for those with impulsivity.
Oral care is extremely important for reducing the risk of pneumonia:
- An exciting study from Japan conducted in 1996 on 417 nursing home residents found that an aggressive oral care plan (nurses cleaned teeth after each meal and swabbed with povidone iodine when necessary. Dental hygienists provided weekly care) resulted in half as many patients dying from pneumonia as controls who were given business-as-usual care .
- Nasogastric (NG) and percutaneous enterogastric (PEG) tube-fed patients are far more likely to develop potentially dangerous bacterial colonisations. A study of 215 patients from Israel, found that 81% of NGT-fed patients, and 51% of PED-fed patients had dangerous bacterial colonies in their oral cavity and pharynx; whereas only 17.5% of oral-fed patients did .
Implications for Practice
- Given that the consequences of dehydration are severe, that only drinking thickened fluids decreases fluid intake, and that aspiration alone is generally insufficient to cause pneumonia, Free Water seems like a good idea.
- Vigorous monitoring of oral health is vital for the success of a protocol.
- Consideration must be given to cognition and mobility.
- Langmore, S. E., Terpenning, M. S., Schork, A., Chen, Y., Murray, J. T., Lopatin, D., & Loesche, W. J. (1998). Predictors of aspiration pneumonia: how important is dysphagia? Dysphagia, 13(2), 69-81
- Garon, B. R., Engle, M., & Ormiston, C. (1997). A Randomized Control Study to Determine the Effects of Unlimited Oral Intake of Water in Patients with Identified Aspiration. Neurorehabilitation and Neural Repair, 11(3), 139-148
- Karagiannis, M. J., Chivers, L., & Karagiannis, T. C. (2011). Effects of oral intake of water in patients with oropharyngeal dysphagia. BMC Geriatr, 11, 9. doi: 10.1186/1471-2318-11-9
- Karagiannis, M., & Karagiannis, T. C. (2014). Oropharyngeal dysphagia, free water protocol and quality of life: an update from a prospective clinical trial. Hell J Nucl Med, 17 Suppl 1, 26-29.
- Yoneyama, T., Yoshida, M., Ohrui, T., Mukaiyama, H., Okamoto, H., Hoshiba, K., . . . Oral Care Working, G. (2002). Oral care reduces pneumonia in older patients in nursing homes. J Am Geriatr Soc, 50(3), 430-433.
- Leibovitz, A., Plotnikov, G., Habot, B., Rosenberg, M., & Segal, R. (2003). Pathogenic colonization of oral flora in frail elderly patients fed by nasogastric tube or percutaneous enterogastric tube. J Gerontol A Biol Sci Med Sci, 58(1), 52-55.
I saw a patient last Monday for a review in the hospital. Reading through the progress notes I felt an gradually increasing feeling of dread. Every professional from the night nurse to the geriatrician had noted “hates thickened H2O!” What if I reviewed her and she wasn’t safe for thickened fluids?
A very recent review has confirmed the common knowledge that thickened fluids are effective at reducing aspiration in dysphagic clients. To the final-year Speech Pathology student, the acute clinician seems to be in charge of two levers: which texture and which thickness. Superior clinicians look beyond this two-dimensional measure to attempt to tailor a diet to patient’s needs, expertly balancing nutritional and hydration needs with swallowing safety.
Texture-modified foods and thickened fluids have had standard definitions in Australia since 2007. However, these standards “were not intended to address the nutritional adequacy nor patient acceptability” of them . During their development, some clinicians pushed for more gradations, but it was noted that Clinicians could always “use their clinical judgement to prescribe any additional textures on a case-by-case basis.” [emphasis mine] It’s always more complicated than simply matching a patient to a texture/thickness.
SP’s don’t really have responsibility for ensuring adequate nutrition and hydration – this job belongs to dieticians (in the Multidisciplinary model anyway). This may mean SPs are sometimes less aware of the outcomes of their decisions.
Why don’t people like pasty fluids?
- Acute patients (not on a stroke ward) appear to prefer pre-thickened fluids rather than power-thickened fluids (I agree with them! Powder thickener is foul) 
- A small study suggested than extended care patients on pre-thickened fluids had better nutritional outcomes than those on power-thickened fluids 
- A review by Cichero suggests that this ‘preference’ boils down to two factors: “physiological expectations that thick fluids will make them feel full”, i.e. 300mL of thickened water feels like more than 300mL of thin water; and the fact that thickening suppresses flavour, which reduced the desire to drink more .
A review of Australian practice (surveying SPs, nurses and dieticians) from 2014 found that while 98% of those surveyed supplied thickened fluids to their patients (82% using pre-thickened fluids) . Only 17% routinely monitor fluid-intake for their patients on thickened fluids (8% never did this!). 9% believed their patients drank enough, and 51% thought their patients on thickened fluids did not drink enough!
Interestingly, one-third of the SPs did not know how hydration was measured. The authors note that “some
may argue it is not the role of a speech pathologist to know about optimum fluid intake and how hydration is monitored, the counter argument is that the speech pathologist, who prescribes the thickened fluid, should be aware of the impact this will have on an individual’s fluid intake and potential health complications.”
Unsurprisingly the most common strategies for addressing poor-fluid-intake was ‘pushing’ (87%) the patient to drink more, supplementary methods such as IV (66%), education (64%) and dietetics/medical referral. Encouragingly, SPs would offer different flavours, or offer foods with higher fluid contents. 14% implemented free-water protocols (I’ll talk about these in a later post).
Apparently a good technique is to set “small but regular targets for fluid intake throughout the day with increased monitoring.”
When I saw the patient, it became thankfully clear that she simply didn’t like thickened water, not thickened fluids in general. She tried a thickened juice and deemed it acceptable – hopefully her intake will increase from here!
- Dietitians Association of, A., & The Speech Pathology Association of Australia, L. (2007). Texture-modified foods and thickened fluids as used for individuals with dysphagia: Australian standardised labels and definitions. Nutrition & Dietetics, 64, S53-S76. doi: 10.1111/j.1747-0080.2007.00153.x
- Whelan, K. (2001). Inadequate fluid intakes in dysphagic acute stroke. Clinical Nutrition, 20(5), 423-428. doi: 10.1054/clnu.2001.0467
- McCormick, S. E., Stafford, K. M., Saqib, G., Chroinin, D. N., & Power, D. (2008). The efficacy of pre-thickened fluids on total fluid and nutrient consumption among extended care residents requiring thickened fluids due to risk of aspiration. Age and Ageing, 37(6), 714-715. doi: 10.1093/ageing/afn204
- Cichero, J. A. (2013). Thickening agents used for dysphagia management: effect on bioavailability of water, medication and feelings of satiety. Nutrition Journal, 12, 54. doi: 10.1186/1475-2891-12-54
- Murray, J., Doeltgen, S., Miller, M., & Scholten, I. (2014). A survey of thickened fluid prescribing and monitoring practices of Australian health professionals. Journal of Evaluation in Clinical Practice, 20(5), 596-600. doi: 10.1111/jep.12154
Today I was just observing clients. The first was in their 80s, who had had an extremely severe stroke. This was my first experience of stroke in the acute phase. The client was globally aphasic, had a dense hemiplegia, fluctuating consciousness, and was unable to initiate a swallow when food was placed on their tongue. My CE and my partner were going to review their swallowing, as they had been displaying small signs of improvement throughout the week, but were foiled by an ultrasound. I did have an opportunity to talk with a family member, which I think revealed a deficit in my counseling skills.
What I did:
- I talked about the beautiful weather outside
- I said they seemed to be coming from a high-baseline (they were fit and active before the stroke)
- I said the family seemed to be doing helpful things (having pictures of familiar people, talking to them in their home language)
What I should have done:
- Listened more! Allowed the family member more time to talk
- Reflected the family’s members thoughts back
One of my colleagues said it was natural to offer solutions when listening to the problems of others, but sometimes they really don’t need your input. Instead, they just need to be heard.
The second client was also in their 80s, and had entered the health system a few weeks ago upon the discovery of a serious metastasised cancer. I felt overwhelmed on many fronts: medically, the client was complex, with multiple systems involved in confusing (for my poor Speech Pathologist’s brain) ways; and emotionally, as I tried to imagine how quickly this person’s world had changed. We observed an instrumental swallowing examination, where it became apparent that the client was unsafe on all consistencies and thicknesses. One of my Clinical Educators (CEs) showed the client the results and explained them to them. It was difficult to watch, as the client clearly had difficultly coming to terms with the news. I was amazed at the language my CE used, and how she was able to distill the deficit in layman’s terms without being condescending. When the client asked if she thought his swallowing would improve, she didn’t directly answer the question, but pointed towards the next steps – making sure they were comfortable in their feeding.
When it comes to the end of the road like this and palliation is on the horizon, I thought about what one’s goals might be as a Speech Pathologist in this situation. SP involvement in palliative care is relatively new but I found this helpful article from 2004, which distilled the goal to:
To assist in optimizing function related to dysphagia symptoms in order to improve patient comfort and eating satisfaction, and promote positive feeding interactions for family members
I’m unsure if I could top that.
Pollens, R. (2004) Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine, 7(5), 694-702. doi:
I started another placement today at an acute hospital. I’ll still be completing the intensive fluency placement at the same time, which should be interesting as far as time management goes. My fellow student clinicians and I talked with our educators briefly about the competing needs of swallowing and communication in a hospital setting.
Naturally, dysphagia often takes precedence over dysphasia (or aphasia, as we call it at university) – the reasoning is that swallowing difficulties affect a patient’s medical status, whereas communication difficulties do not. Also, hospitals view Speech Pathology services as primarily serving dysphagia, rather than communication, and sets up funding models and staffing models accordingly.
Abby Foster has authored a paper (with collaborators from the Centre for Clinical Research Excellence in Aphasia Rehabilitation) that describes clinician’s feelings on this divide .
She found that:
- Acute SPs report feeling more medically orientated than (humanties) communication oriented, and often defer to subacute SPs when dealing with aphasia [1 p.6]
- Acute SPs report their knowledge of dysphagia greatly exceeds their knowledge of aphasia [1 p.10]
- Institutional policies, barriers and timelines prevent acute SPs from addressing aphasia. Many SPs felt their mix of service provision was out of their control.
- Acute SPs often enter the workforce intending to spend more time than their colleagues on aphasia management, but become ‘instutionalised’ to the practices of their supervisors.
- There is good evidence that communication impairments may lead to “medical errors, negative health outcomes, increased health care costs, reduced compliance with recommendations, and increased falls risk.” [1 p.18]
As part of my placement, I will be redesigning the hospital’s patient education brochures on modified textures. The current brochures are long, and not particularly communication-friendly. I guess this will mean more study into ‘aphasia-friendly’ language and visual presentation.
Foster, A., O’Halloran, R., Rose, M., & Worrall, L. (2014). “Communication is taking a back seat”: speech pathologists’ perceptions of aphasia management in acute hospital settings. Aphasiology, 1-24. doi: 10.1080/02687038.2014.985185