To Eat or Not to Eat? Managing Dysphagia at End of Life

1. To Eat or Not to Eat? Managing Dysphagia at End of Life Kylie Bullock, M.A., L/CCC-SLPLauren Buning, M.S., L/CCC-SLP

2. Meet Us! • Kylie: Speech Language Pathologist (SLP) • kbullock@kumc.edu • Lauren: Speech Language Pathologist (SLP) • lreinert@kumc.edu • KU Hospital Rehab Office • 913-588-6930

3. Food For Thought • We live in a food oriented society. • Families often share views that eating=healing. • Eating is imbedded in how our culture socializes, makes human connections, and celebrates.

4. Learning Objectives Review of anatomy and physiology of the swallow to better understand the goal of compensatory techniques in dysphagia management Understand the role of the SLP in palliative swallowing Identify evidenced-based considerations for patients choosing PO intake despite risk for aspiration pneumonia Recall basic compensatory techniques that may maximize safety of swallow while respecting our patients’ wishes Understand specific challenges associated with services provided to the pediatric and adult palliative care populations

5. Outline Review of anatomy and physiology of the swallow Definition of “Palliative Care” across the lifespan Understand a speech pathologists role in managing dysphagia at end of life Discuss differences between restorative and compensatory treatment approaches Review of additional evidence-based considerations regarding predictors of aspiration pneumonia In depth discussion of compensatory techniques Focus on the pediatric population Case Studies

6. Anatomy and Physiology

8. VideoswallowExamples • Normal Pediatric Swallow • Infant • http://www.nature.com/gimo/contents/pt1/images/gimo17-V1.mp4 • Child • http://www.nature.com/gimo/contents/pt1/fig_tab/gimo95_V2.html • Normal Adult Swallow • http://www.nature.com/gimo/contents/pt1/fig_tab/gimo95_V2.html www.youtube.com

9. What is Palliative Care? Palliative care improves the quality of life of patients and families who face life-threatening illness, by providing pain and symptom relief, spiritual and psychosocial support from diagnosis to the end of life and bereavement. World Health Organization, 2014

10. What is Hospice? Hospice care is end-of-life care provided by health professionals and volunteers. They give medical, psychological and spiritual support. The goal of the care is to help people who are dying have peace, comfort and dignity. The caregivers try to control pain and other symptoms so a person can remain as alert and comfortable as possible. Hospice programs also provide services to support a patient’s family. World Health Organization, 2014

11. Who’s on the Team • Patient • Family members • Primary Physician • Consulting Physicians • Therapists • Social workers • Nursing Staff • Chaplain

12. Definition of Palliative Care for Swallowing Disorders “Palliative care for dysphagia is aimed at maximizing swallow function, maintaining pulmonary health, and supporting healthy nutrition despite the impaired ability to swallow.” Langmore, 2009)

13. Speech Pathologist Role • Consultation with patients, families and members of the team regarding choices in the areas of swallowing. • Consultation regarding strategies and tools in the areas of communication to support the patients active participation in decision making, to maintain social closeness and to assist the patient in fulfillment of end-of-life goals. • Assisting in optimizing function related to dysphagia symptoms to improve patient comfort and eating satisfaction and support positive mealtime interactions with family members. • Collaborative consultation with members of the interdisciplinary team to provide and receive input related to overall patient care. Pollens, 2012

14. National Practice • American Speech-Language-Hearing Association (ASHA) • http://www.asha.org/ • http://www.asha.org/slp/clinical/endoflife/#role

15. Essential Guidelines for Initial SLP Consult and Ongoing Services with a Palliative Care Patient • Clarify patient and family preferences and concerns regarding swallowing • Assess needs and provide assessment information • Gather information from other team members • Recommend follow up as needed Pollens, 2012

16. Clinical Bedside Swallow Evaluation • History • Oral mechanism exam • Complete cranial nerve assessment • Oral stage • Pharyngeal stage • Palpation of hyolaryngeal elevation • Dysarthria • Confusion • GI status • Additional Factors

17. Considerations for Instrumental Swallow Evaluation • Will information change your plan of care? • Can the patient tolerate the evaluation? • Is death expected within weeks? • Will the information assist families in making plan of care decisions? • Will it assist in identifying diet modifications/compensatory techniques that would not have been identified otherwise?

18. Videofluoroscopic Swallow Study (VFSS)

19. Fiberoptic Endoscopic Evaluation of Swallow (FEES)

20. Videoswallow Study Examples • Impaired Infant Swallow • http://www.nature.com/gimo/contents/pt1/full/gimo17.html • Impaired Child Swallow • http://www.youtube.com/watch?v=1sFNMk87558&list=PL2E129255DBB4E77D&index=4 • Impaired Adult Swallow • http://www.youtube.com/watch?v=1sFNMk87558&list=PL2E129255DBB4E77D&index=4

21. The Process • Strong understanding of etiology of impairment • Interpretation of results to patient/family • Swallow prognosis given overall medical picture • Is alternate nutrition indicated? • Discussion with patient/family • Palliative Care Involvement to identify the patient’s goals of care

22. Individual Clinical Expertise Patient’s Values and Expectations Evidenced Based Practice Best Available Clinical Evidence

23. Goals of Care: What is really important to our patient? • Eatin’ to live or livin’ to eat? • Appetite • Taste • Swab in juice • Mechanics of chewing • Self feeding (mimic) • Act of chewing • Mouth comfort • Swish water in mouth

24. Goals of Care: What is really important to the caregivers? • Does the patient want to eat or is the act of eating driven by the patient’s loved ones? • For many caregivers, feeding the patient may serve not only to provide nutrition and hydration, but may also symbolize the essence of care and compassion • A way for caregivers to interact w/ their loved ones • Feeding allows for social exchange, maintaining bonds, demonstrating concern Pollens, 2004

25. Care Trajectory Lynn & Adamson, 2003

26. Next Step • Once goals of care are established… • Continue with compensatory strategies with continued primary focus on restorative interventions • Therapeutic role is adjusted from restorative to compensatory depending on severity of swallow impairment and illness trajectory

27. Identifying Goals • Patient will participate in pleasure feedings of pureed solids and thin liquids during meal times with no overt sign of discomfort. • Patient and family will participate in education regarding compensatory swallow strategies with minimal cues.

28. Case Study #1 63yoM w/ PMH of Mantle cell lymphoma s/p allogeneic stem cell transplant complicated by persistent right sided infiltrate (on chest x-ray), prior cytomegalovirus viremia and pneumonitis, graft versus host disease, thrombocytopenia, and chronic kidney disease • Aspiration Risk/prognosis • Discussion/referral • Plan/recommendations

29. Utilizing Appropriate Compensatory Techniques • Oral Stage Impairment • Withdraw • Inability to seal lips around spoon/straw • Difficulty creating suction with straw • Impact of confusion • Compensatory Techniques • Promote self feeding • Increase sensory input • Reduce environmental distractions

30. Utilizing Appropriate Compensatory Techniques • Oral Stage Impairment Continued • Formation and Transfer • Difficulty masticating solids, prolonged or inadequate mastication • Slowed, repetitive tongue movement • Oral residue (pocketing) • Anterior and posterior loss of bolus • Compensatory Techniques • Diet consistency modification • Chin tuck • Finger sweep

31. Utilizing Appropriate Compensatory Techniques • Pharyngeal Stage Impairments • Coughing/choking • Throat clearing • Wet/gurgly vocal quality • Globus sensation • Compensatory Techniques • Diet consistency modification • Bolus size • Chin tuck • Additional postural modifications • Verbal prompts to “swallow” • Multiple swallows • Effortful swallow • http://www.aplaceformom.com/blog/2013-8-29-pureed-food/

32. Case Study #2 85 yo male with medical history of chronic obstructive pulmonary disease (COPD) and dysphagia presenting to the emergency department with atrial fibrillation with rapid ventricular rate (RVR) and acute respiratory failure requiring multiple prolonged intubations during hospital stay. • Aspiration Risk/prognosis • Discussion/referral • Plan/recommendations

33. Thicken Liquids vs. Thin Liquids • Thickened Liquids • Reduces aspiration, however is not patient preferred • Thickened liquids do not dehydrate • However, will they drink it? • Aspiration of thickened liquids may produce a worse pulmonary consequence than thin liquids aspiration • Are thin liquids for everyone? • Could recommendation increase dyspnea or alter management of other symptoms Logeman, 2008

34. Considerations for our Patient with Dementia • Tube feeding with this patient population • Cannot prevent aspiration of oral secretions or risks associated from aspirating regurgitated gastric contents • Tube feeding does not prolong survival • May not improve functional status nor make patients more comfortable Puntil-Sheltman, 2013 Dunn, 2009 Finucane, Christmas, & Travis, 1999 GeriPal, n.d.; Loeser & Von Hertz, 2003 Mitchell & Berkowitz, 2000

35. Predictors of Aspiration Pneumonia for Elderly • Significant predictors of aspiration pneumonia • Dependency for feeding • Dependency for oral care • Number of decayed teeth • Tube feeding • More than one medical diagnosis • Number of medications • Smoking Langmore, 1998

36. What is Palliative Care for Children? Palliative care for children represents a special, albeit closely related field to adult palliative care. Palliative care for children is the active total care of the child's body, mind and spirit, and also involves giving support to the family. It begins when illness is diagnosed, and continues regardless of whether or not a child receives treatment directed at the disease. Health providers must evaluate and alleviate a child's physical, psychological, and social distress. Palliative care can be provided in tertiary care facilities, in community health centers and even in children’s homes. World Health Organization, 2014

37. Special Considerations in Pediatrics • Variation in team members • Child life, music therapy, counselor, teacher, etc. • Developing system • Limited previous experience with eating and/or communicating • A long-term means of alternate nutrition (i.e. G-Tube) already in place

38. Case Study #3 A school-aged child with Cerebral Palsy which is a chronic condition but not imminent death. The patient wants to eat/parents want to feed. The school does not want to feed due to known aspiration risk. • Aspiration Risk/prognosis • Discussion/referral • Plan/recommendations

39. Case Study #4 Former premature infant with Broncopulmonary Dysplasia (chronic lung disease). It has been confirmed with VFSS that the infant is aspirating. There is a risk for feeding aversion if PO is stopped. There is also a risk of inability to advance appropriately to transitional feeding (i.e. spoon feeding). • Aspiration Risk/prognosis • Discussion/referral • Plan/recommendations

40. Final Thoughts

41. Obstacles to providing palliative care to all populations • -Adults • Uncertainty of prognosis • Pediatrics • Never give up attitude • Neuroplasticity • Parents maybe decision makers Lynn & Adamson, 2003

42. Can SLPs be Reimbursed for Their Services? Hospice benefits include: • Symptom control • Enabling the individual to maintain activities of daily living and basic functional skills. Medicare Hospice Manual

43. How to engage your medical teams? • Educate the role of the SLP at end of life • Provide recommendations for conservative management versus comfort care • Don’t just discharge from services…You have a role!

44. Remember 1. Communicate effectively with the interdisciplinary team. 2. Offer quality care to patients and their families. 3. Learn more about palliative care services and education to others about contribution of the SLP on the palliative care team. (Pollens 2014)

45. Resources • Center for Practical Bioethics www.practicalbioethics.org • Caring Connections http://www.caringinfo.org • Educational site sponsored by the Center to Advance Palliative Care (CAPC). http://www.getpalliativecare.org/ • Hospice Foundation of America http://www.hospicedirectory.org

46. QUESTIONS/DISCUSSION

47. THANK YOU!

48. Citations • American Academy of Hospice and Palliative Medicine. (2001). Retrieved from www.aahpm.org • Angus, F., & Burakoff, R. (2003). The percutaneous endoscopic gastrostomy tube: Medical and ethical issues in placement. The American Journal of Gastroenterology, 98, 272–277. • Arinzon, A., Peisakh, A., & Berner, Y. (2008). Evaluation of the benefits of enteral nutrition and in long term care elderly patients. Journal of American Medical Directors Association, 9, 657–662. • Centers for Medicare and Medicaid Services. Sec. 230.1.I of the Medicare Hospice Manual. Medicare Benefit Policy Manual Chapter 9 - Coverage of Hospice Services Under Hospital Insurance. www.cms.gov • Dunn, H. (2009). Hard choices for loving people: CPR, artificial feeding, comfort care, and the patient with a life-threatening illness (5th ed.). Lansdowne, VA: A&A Publishers, Inc. • Ferrell, B., & Coyle, N. (Eds.). (2010). Oxford textbook of palliative nursing (3rd ed.). New York, NY: Oxford University Press. • Finucane, T., Christmas, C., & Travis, K. (1999). Tube Feedings in patients with advanced dementia: A review of the evidence. Journal of the American Medical Association, 282, 1365–1370.

49. Citations • Mitchell, S., & Berkowitz, R. (2000). A cross-national survey of tube feeding decisions in cognitively impaired older persons. Journal of the American Geriatric Society, 48, 391–397. • GeriPal (Geriatrics and Palliative Care). (n.d.). Retrieved from www.geripal.org • Gillick, M. (2000). Rethinking the role of tube feeding in patients with advanced dementia. New England Journal of Medicine, 342, 206–210. • Johnson, J., & Hirsch, C. (2003). Aspiration pneumonia: Recognizing and managing a potentially growing disorder. Postgraduate Medicine Online, 113, 99–112. • Jonsen, A., Siegler, M., & Winslade, W. (2006). Clinical ethics: A practical approach to ethical decisions in clinical medicine (6th ed.). New York: McGraw-Hill. • Langmore, S. E., Grillone, G., Elackattu, A., & Walsh, M. (2009). Disorders of swallowing: Palliative care. Otolaryngologic clinics of north america, 42(1), 87-105. • Langmore, S., Terpenning, M., & Schork, A. (1998). Predictors of aspiration pneumonia: How important is dysphagia? Dysphagia, 13, 68–81.

50. Citations • Loeser, C., & Von Hertz, U. (2003). Quality of Life and nutritional state in patients on home enteral tube feeding. Nutrition, 19, 605–611. 123 • Lynn, J., & Adamson, DM. Living well at the end of life. Adapting health care to serious chronic illness in old age. Washington: Rand Health, 2003. • Mitchell, S., Tetroe, J., & O’Connor, A. (2001). A decision aid for long term feeding in cognitively impaired older persons. Journal of the American Geriatrics Society, 49, 313–316. • Moynihan, T., Kelly, D., & Fisch, M. (2005). To feed or not to feed: Is that the right question? Journal of Clinical Oncology, 23, 6256–6259. • Murhphy, L., & Lipman, T. (2003). Percutaneous endoscopic gastrostomy does not prolong survival in patients with dementia. Archives of Internal Medicine, 163, 1351–1353. • Palecek, E., & Teno, J. (2010). Comfort feeding only: A proposal to bring clarity to decision making regarding difficulty with eating for persons with advanced dementia. Journal of American Geriatric Society, 58, 580–584. • Pollens, R. (2004). Role of the speech-language pathologist in palliative hospice care. Journal of Palliative Medicine, 7(5), 694-702.