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