DYSPHAGIA AND ORAL CARE ISSUES AT THE END OF LIFE Jason Trottier, RN, BN ICU Educator Nicole Miller, M.Cl.Sc., SLP(C) Speech-Language Pathologist

Dysphagia Definition: Difficulty chewing or swallowing which may be the result of reduced muscle strength, sensation, anatomical abnormalities, or the awareness of “how to swallow”. Associated Causes: Stroke Dementia Head injury Tracheostomy Progressive neurological conditions (PD, MS, ALS) You can’t talk about oral care without discussing dysphagia, as many of our patients at end of life have swallowing difficulties. SLP’s are involved with assessment and management of dysphagia, and our role changes as a patient progresses towards end of life care. Regardless of whether a patient is in the last weeks or last days of life, much of what we do is provide education to the patient/family. So to start off, an explanation as to what dysphagia is, and how SLP plays a role. Dysphagia = difficulty eating. Many causes – listed here – most commonly we see the above conditions in acute care. SLP assesses to determine if texture modifications are needed (solids and/or liquids), and recommends what is safest for patient to eat/drink to minimize risk of aspiration pneumonia (define).

Other Symptoms Associated With Dysphagia Reluctance or refusal to eat Reduced appetite In palliative patients, these are common physical signs associated with approaching death On top of oral (mouth) or pharyngeal (throat) swallowing issues, we may also see patients refusing to eat and/or having reduced appetites. This is believed to be a strategy/process that allows an individual to die with less suffering (person senses end of life is near).

Swallowing and Nutrition Goals at End of Life Assess for signs/symptoms of dysphagia Promote safe intake of food and liquids as desired Safe chewing and swallowing through: - Increased use of texture modifications - Feeding/swallowing strategies Reduce risk of aspiration/choking Maximize nutrition and hydration when possible Unsafe for oral intake - possible NPO recommendation - may not be able to meet nutrition and hydration needs orally  determine wishes with respect to feeding Ultimate goal is to reduce risk of choking/aspiration, and make the patient as comfortable as possible at the end of life. Balance between QOL and safety

Educating Families Fears of “starvation” and “dehydration” Ensure they understand the dying process Careful feeding can reduce the risk of aspiration and aspiration pneumonia Artificial feeding and hydration will not cure the underlying problem, and will not improve quality of life in progressive disease processes. No evidence that natural dying (in the absence of TF) causes discomfort (Post, 2001). Fears of starving and dehydration can cause family members a lot of stress. - As Chelsa discussed, dehydration actually offers benefits to the dying patient. Need to explain how to minimize aspiration risk

Comfort Care Offer food and fluid for pleasure and comfort, while minimizing aspiration/choking risk Follow the direction of the patient on how much food/liquid is taken Provide favourite items Maintain excellent oral hygiene and treat complaints of dry mouth (xerostomia) Essentially, the SLP role in comfort care is two-fold: (1) dysphagia assessment and management and (2) promotion of excellent oral hygiene One of the most common complaints/evident issues is dry mouth

Secretion Management Xerostomia (dry mouth) Excess Secretions Causes: reduced oral intake, dehydration, medications, mouth breathing, reduced saliva production Management: - medication review (opioids – ie. morphine) - frequent oral hygiene - ice chips, fluids - MoiStir spray Excess Secretions Causes: mainly secondary to impaired control of swallow reflex - we swallow reflexively up to 1000x/day - medications (Scopolamine, Glycopyrrolate) - suctioning - oral hygiene Opioids: morphine – used for tx at EOL, therefore pros outweigh cons – need to use mouth care to treat side effects Excess secretions tend to be very distressing for the family to hear…therefore often rx meds for management

Oral Care Dehydration causes dry mouth and the sense of thirst We can alleviate this through good mouth care, offering ice chips and/or fluids The condition of the mouth depends on oral care provided, not on the state of hydration

Oral Care “Despite being an essential element of caring for palliative care patients, oral care may still be deemed insignificant or of minor importance when considering overall disease load.” (Rohr et all, 2010)

What Are The Barriers? PERCEIVED MEASURABLE Priority level Gross/unpleasant task Lack of caregiver knowledge Swallowing problems MEASURABLE Lack of supplies Lack of time/staff Resistant patient Decreased LOC and/or ability to participate Patients choose to be independent PERCEIVED: Given the multiple needs/demands on nursing, oral care tends to fall as a lower priority It is not seen as a pleasant task to have to “dig around” in someone else’s mouth Some staff feel as though they don’t know what’s required Concerns with patients being able to manage water/toothpaste/etc MEASURABLE Supplies such as toothbrushes are not available on the units; patients/family must bring in Being understaffed and/or having high patients needs Patients who are resistant/aggressive to oral care Some patients choose to do it themselves, some of these may benefit from assistance, but choose not to accept the help

Oral Care Why is it important? - maintains comfort - improves communication - easier chewing/swallowing - decreases sensation of dry mouth, dehydration - enhances quality of life What does it involve? - keep mouth and lips clean, moist - remove debris, dried secretions - clean the tongue Frequency? - minimum every 2 hours - during last days/hours, every 15-30 minutes [lead into next slide)… Pictures are worth a thousand words…

WRHA Oral Care Initiative Proposal

Involving the Family Proper training from SLP and/or Nursing staff Get them to bring in supplies recommended Change the focus - oral care for comfort, not food for comfort Sense of being involved and helping Always have to remember to put ourselves in their shoes…if it was your family member - What would you do? What would you want for them? What would you want/need from the team treating that person? On that note, keep comfort, compassion, and caring in mind…(last slide)…

Oral Care Supplies Soft bristled toothbrush Non-foaming toothpaste - helps remove debris from teeth, tongue, gums, buccal cavities - avoid Sodium Lauryl Sulfate – drying effect - specialized products - Biotene toothpaste Non-alcohol based mouthwash - dip toothette in mouthwash, squeeze excess off, and clean oral cavity Avoid glycerine-based products  more drying

Oral Care Supplies Suction toothettes – help apply lubricating/cleaning products, and suction out excess material/debris Bite blocks Brush/clean dentures Moistened toothettes to remove dried secretions from the palate Tongue depressor Flashlight Mouth moisturizer, lip balm

What’s Happening at Concordia? Oral Care in the ICU… “Back to BASICS”

ICU began a Patient Centered Improvement Campaign called Back to BASICS

Plan

How is Oral Care Palliative Care in the ICU? WHO definition of Palliative Care: “…an approach that improves the quality of life of patients and their families facing the problems associated with life threatening illness, through prevention and relief of suffering….”

How will we improve quality of life for our clients? ICU specific quality care markers: - Ventilator days - Length of stay - Hospital Acquired Pneumonia (HAP) - Ventilator Associated Pneumonia (VAP) - Central Line Infection (CLI) Oral care is part of a quality bundle shown to decrease Ventilator days, HAP and VAP.

Concordia’s ICU Baseline Mean Ventilator Days: 3.2 Mean Length Of Stay: 3.9 CLI = 0 in 1991 Central line days (2 years) as of February 13th 2013 VAP = 5.6/1000 ventilator days in 2012 (double the regional average) In Canada, a VAP represents $11,000/case in avoidable costs. $61,600 (estimated) avoidable costs in 2012 calendar year.

Agreed upon ICU standards Teeth should be brushed twice daily. Oral Care should be performed at least every 4 hours and as needed (prn). Assumption was we were at a 75% compliance rate.

The Facts ICU oral care comes in a 24 hour kit. One (1) kit should be used for every ventilator day. Concordia ICU had 632 ventilator days in 2011- 2012 fiscal year. Concordia ICU used 80 kits in the same time frame. Teeth brushing was roughly at a 15% compliance rate!

Regional ICU Program Component Regional directive to change to a chlorhexidine oral rinse/toothbrush Regional directive to try to reduce VAP to a goal of 1.8 cases/1000 ventilator days in 2013 Concordia’s immediate goal is to reduce VAP rates by 50% to 2.8/1000 vent days

Other factors Increased cost = roughly $15,000 per year in oral care supplies. Reviewed the literature found this was not a unique problem. Contacted researchers in the USA and Canada.

The Plan Complex problem with a simple solution… Place oral care on the Medication Administration Record (MAR).

The Plan (continued…) Initiated December 3rd, 2012 Oral care written as a physician’s order: Schedule teeth brushing times 0800 and 2000. Oral care schedule every 6 hours in between teeth brushing and PRN. Compliance - Began tracking weekly ventilator days and product usage.

Getting Buy-In Transparency ICU staff shown our data and agreed change required. Staff embraced the change. Staff wanted to be accountable for this.

The Early Results Baseline

As of February - 75% compliance

Ongoing Challenges Product changes/Switch to chlorhexidine. Ongoing education. Physicians forgetting to write orders. Solution 1: Standing orders updated. Solution 2: Preprinted MAR’s developed. Continued auditing. Maintaining momentum.

Questions - Outside of the ICU Should oral care be on the MAR be hospital wide? Are there certain groups (i.e. end of life) where using the MAR would be an option? Limited equipment - suction toothettes and toothbrushes in ICU only. Should we provide toothbrushes to all patients? Finances - cost effective vs. cost neutral vs. cost deficit?

References Mercadante S. Dry mouth and palliative care. European Journal of Palliative Care.. 2002; 9(5), pp. 182-5. Rohr Y, Adams J, Young L. Oral discomfort in palliative care: Results of an exploratory study of the experiences of terminally ill patients. International Journal of Palliative Nursing. 2010; 16(9), pp. 439-44. WRHA PCH Speech-Language Pathology Program. Feeding and Swallowing Issues Related to End of Life: information for Caregivers. 2010. Adapted from: Communication and Nutrition, CTS SLP Program (2002). Hallenbeck, J. Palliative Care Perspectives. Chapter 5: Non-Pain Symptom Management. Oxford: Oxford University Press, 2003. Print.