This week Gray Matter Therapy is bringing you guest blog posts covering ethics related sessions at the 2014 ASHA Convention. Thanks to Karen Sheffler for her guest post today (which I would have attended if I wasn’t scheduled to speak at the same time).
Rosenbek, J. & Leslie, P. (2014, November). 1182: Ethics & Evidence in Practice. Session presented at the annual convention of the American Speech-Language-Hearing Association, Orlando, FL.
This session was developed by the American Board of Swallowing and Swallowing Disorders, and it was presented by Dr Paula Leslie of University of Pittsburg and Dr John (Jay) Rosenbek of the University of Florida. Rosenbek offers his 45 years of experience of “trying to be an ethical practitioner.”
Stated goal of the session:
“Clinicians who have evidence without acumen and knowledge of patient wants and needs are helpless to direct a patient’s treatment. Clinicians and patients need help to understand the other’s territory in order to come to a closer place in decision-making.”
Summary of what I learned:
Dr Leslie reminded us that when we are invested in our patients and families we should face emotionally troubling decisions and worry about them. This is difficult work, but Leslie shared what guides her:
- Values, morals and ethics
- Medical ethical principles
- Evidence-based practice
Let’s break these down further.
- Values, morals and ethics
When there is a communication breakdown, we need to check our personal biases and think about the patient’s/family’s values and morals. Make sure you are working towards the least restrictive level of care, per Leslie.
Values: personal principles of what is important in life. This is influenced by family and friends (who we hang out with).
Morals: personal standard of behavior or belief concerning what is right and wrong. This is influenced by our society, community, culture, country, and even age group. There are significant cultural differences.
Ethics: we are guided by our professional code of ethics from ASHA and those at our workplace.
- Medical ethical principles
We have to balance the patient’s right to make decisions about his/her own body (autonomy) with the desire to take positive action for the patient (beneficence). The phrase: “do no harm” is paramount in bioethics (non-maleficence), as an intervention may do more harm than good. Tube-feeding placement in advanced dementia was an example given by the presenters.
Potentially, the patient (or family) may think it is a “candy store,” and feels it is his right to “buy” the intervention if he wants it, per Leslie. However, Leslie also asked us why do we question our patients’ decision-making when they don’t agree with us, but we don’t question their decision-making when they do agree with us?
Ultimately, what may diffuse the tension is justice. We see this with the conflict in Ferguson, Missouri and elsewhere. People need to know that treatment is fair and equitable.
Leslie advised to: “Shut up and listen!” Communicating with the medical team is crucial, but even more importantly, go into the patient’s room listening, observing and “feeling the room.” The patient and family come first.
- Evidence-based practice (EBP)
Dr Leslie challenged that EBP is one of the most misunderstood frameworks in our field. We have all seen the diagram of the three interlocking circles with the following three components:
- Best research evidence
- Clinical expertise
- Patient values and preferences
We may forget that these are three equal guiding principles, weighing research over the patient preferences and our own experience.
Additionally, the evidence may be limited and of little clinical utility. There are gaps in care, per Rosenbek, when it may take up to 25 years of research to move from new idea to practice. The clinician may have a hard time finding her patients in the clean sample populations. For example, if the researchers excluded patients with advanced dementia, head and neck cancer and tracheostomy, then what do you do with the results when that is your patient population at a rehabilitation center.
Rosenbek referred to Montgomery & Turkstra (2003) and Byiers et al (2012) when he discussed the “tyranny of the randomized-controlled trial (RCT).”
“An overemphasis on RCTs may create radical skepticism when this standard is not attained, and this in turn may lead to therapeutic nihilism.”
Rosenbek and Leslie were not suggesting to ignore evidence and throw out EBP. They were advocating for “equal consideration” of all three components. Rosenbek recommended Fleming & Demets (1996) in reference list below.
“The informed clinician checks his/her knowledge against best available practice and against informed patient preferences,” per Dr Leslie.
Key word is informed.
A bit about informed consent:
Dr Leslie noted that this is a process. Not a piece of paper. Not one event. Not a waiver form.
It is a dialogue.
The key components are
- Intention: patient choosing or declining an intervention.
- Capacity: we can document capacity in a moment in time, but we cannot evaluate for competence. To determine competence, the patient will need a formal psychological evaluation. We can say that the patient had capacity to make the decision at that moment as he was able to repeat back in his own words the risks, benefits, etc.
- Voluntariness: We want the patient to have autonomy. Maybe the patient does not want to disappoint the clinician. Avoid coercion. For example, making the patient sign a waiver form is a method of coercion.
What should the SLP do with this information?
- Join your facility’s ethics committee.
- Rosenbek and Leslie recommended a biopsychosocial model from Engle (1978), as an oldie but goodie. Rosenbek noted that our biomedical model tends to minimize psychological, social, and environmental factors. The patient becomes a number, and suffering and lived experience are suppressed. Is the true clinical outcome relevant to the patient? Sometimes we cannot fix the problem, so are we helping the patient get to the least bad option for the best possible quality of life? Rosenbek agreed that shutting up and listening helps us with “humane care.”
- Document well. You are protected per ASHA if you can document that you had thorough discussions and performed the least restrictive practice.
- Always remember your patient is “more than bolus flow abnormalities.” “Your patient is more than mucous,” joked Rosenbek. Seriously, though, if we ignore everything else, than the patient may be reluctant and disregard clinical advice.
- Be comfortable in the zone of ambiguity and tension. There should be constant tension between data and your beliefs to make sure you are constantly growing and changing your practice. “All this is why we have frontal lobes.” Another great quote from Dr Jay Rosenbek!
- Check and double-check new information. Fortunately, research papers now contain enough detail to thoroughly analyze the design and data
Here is a funny double-checking example: Rosenbek in the session attributed this quote: “some of the things that count cannot be counted,” to Albert Einstein. I wanted to double check for accuracy. All over the internet this is attributed to Einstein, but one spot noted it was just a plaque in his office! Quoteinvestigator.com states the evidence is weak linking it to Einstein! Here is the full quote: “Not everything that can be counted counts, Not everything that counts can be counted.” The proper citation is: William Bruce Cameron (1963). It is an excerpt from his text: Informal Sociology: A Casual Introduction to Sociological Thinking.
Let’s continue this discussion.
I want to thank Gray Matter Therapy for initiating this ethics conversation with the help of ethics sessions at the annual convention of ASHA.
Guest blogger bio
Karen Sheffler, MS, CCC-SLP, BCS-S has almost 20 years of experience in the field of adult dysphagia, graduating from the University of Wisconsin-Madison in 1995. She was a member of the ethics committee at a hospital for 13 years. Currently, she still works in acute care, is a FEES/FEESST consultant through SEC Medical, and started her own website/blog.
You can also follow her on:
Twitter, Facebook, and Pinterest.
References provided by Jay Rosenbek and Paula Leslie:
American Speech-Language-Hearing Association. (2010r). Code of Ethics Retrieved September 29, 2012, from http://www.asha.org/policy/ET2010-00309/
Borrell-Carrio, F., Suchman, A. L., & Epstein, R. M. (2004). The biopsychosocial model 25 years later: principles, practice, and scientific inquiry. Ann Fam Med, 2(6), 576-582.
Borrett, D. S. (2013). Heidegger, Gestell and rehabilitation of the biomedical model. J Eval Clin Pract, 19(3), 497-500.
Byiers, B. J., Reichle, J., & Symons, F. J. (2012). Single-subject experimental design for evidence-based practice. Am J Speech Lang Pathol, 21(4), 397-414.
Drummond, A., & Wade, D. (2014). National Institute for Health and Care Excellence stroke rehabilitation guidance – is it useful, usable, and based on best evidence? Clinical Rehabilitation, 28(6), 523-529.
Engel, G. L. (1978). The biopsychosocial model and the education of health professionals. Ann N Y Acad Sci, 310, 169-187.
Fleming, T. R., & DeMets, D. L. (1996). Surrogate end points in clinical trials: are we being misled? Ann Intern Med, 125(7), 605-613.
Greenhalgh, T. (2010). How to read a paper : the basics of evidence-based medicine (4th ed.). Chichester, West Sussex, UK ; Hoboken, NJ: Wiley-Blackwell.
Greenhalgh, T., Howick, J., & Maskrey, N. (2014). Evidence based medicine: a movement in crisis? BMJ, 348.
Levy, A. G., & Hershey, J. C. (2006). Distorting the probability of treatment success to justify treatment decisions. Organizational Behavior and Human Decision Processes, 101(1), 52-58.
National Institutes for Health. Teaching Exploring Bioethics Retrieved 31st May, 2014, from http://science.education.nih.gov/supplements/nih9/bioethics/guide/teaching.htm
Ross, C. N., Zabawa, A., & Leslie-Pelecky, D. L. (2005). Helping students learn to question. American Journal of Primatology, 66, 166-166.
Sackett, D. L., Rosenberg, W. M., Gray, J. A., Haynes, R. B., & Richardson, W. S. (1996). Evidence based medicine: what it is and what it isn’t. BMJ, 312(7023), 71-72.
Seedhouse, D. (2009, 06.15.2009). Ethical Grid Retrieved 08.20.2009, from http://www.aut.ac.nz/study-at-aut/study-areas/health-sciences/research/national-centre-for- health-law-and-ethics/decision-making-tools/ethical-grid
Seedhouse, D. (2009). Ethics: The Heart of Healthcare (Third ed.). Chichester: John Wiley & Sons.
Sharp, H. M., & Shega, J. W. (2009). Feeding tube placement in patients with advanced dementia: the beliefs and practice patterns of speech-language pathologists. Am J Speech Lang Pathol, 18(3), 222-230.
Stark, M., & Fins, J. J. (2014). The ethical imperative to think about thinking. Cambridge Quarterly of Healthcare Ethics, 23(04), 386-396.
Straus, S. E., Richardson, W. S., Glasziou, P., & Haynes, R. B. (2011). Evidence-based medicine : how to practice and teach it (4th ed.). Edinburgh ; New York: Elsevier Churchill Livingstone.
Turkstra, L. S., & Kennedy, M. (2005). Evidence-based practice for cognitive-communication disorders after traumatic brain injury. Semin Speech Lang, 26(4), 213-214.