TO EAT OR NOT TO EAT?
MANAGING DYSPHAGIA AT
END OF LIFE
Kylie Bullock, M.A., L/CCC-SLP
Lauren Buning, M.S., L/CCC-SLP
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
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.
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
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
Anatomy
and
Physiology
Videoswallow Examples
◦ 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
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
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
Who’s on the Team
◦ Patient
◦ Family members
◦ Primary Physician
◦ Consulting Physicians
◦ Therapists
◦ Social workers
◦ Nursing Staff
◦ Chaplain
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)
Speech Pathologist Role
1. Consultation with patients, families and members of the team regarding choices in the areas of swallowing.
2. 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 endof-life goals.
3. Assisting in optimizing function related to dysphagia symptoms to improve patient comfort and eating
satisfaction and support positive mealtime interactions with family members.
4. Collaborative consultation with members of the interdisciplinary team to provide and receive input related
to overall patient care.
Pollens, 2012
National Practice
◦ American Speech-Language-Hearing Association (ASHA)
◦ http://www.asha.org/
◦ http://www.asha.org/slp/clinical/endoflife/#role
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
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
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?
Videofluoroscopic Swallow Study
(VFSS)
Fiberoptic Endoscopic Evaluation of Swallow
(FEES)
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
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
Individual Clinical
Expertise
Patient’s Values and
Expectations
Evidenced Based Practice
Best Available Clinical Evidence
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
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
Care Trajectory
Lynn & Adamson, 2003
Next Step
◦ Once goals of care are established…
1. Continue with compensatory strategies with continued primary focus on restorative interventions
2. Therapeutic role is adjusted from restorative to compensatory depending on severity of swallow
impairment and illness trajectory
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.
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
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
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
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/
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
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
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
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
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
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
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
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
FINAL THOUGHTS
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
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
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!
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)
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
QUESTIONS/DISCUSSION
THANK YOU!
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 lifethreatening 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.
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.
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.
Citations
◦ Pollens, R. (2012). Integrating speech-language pathology services in palliative end-of-life care. Topics in Language
Disorders, 32 (2), 137-148.
◦ Puntil-Sheltman, J. (2013). Clinical decisions regarding patients with dysphagia and palliative care. Perspectives on
Swallowing, and Swallowing Disorders, 22(3), 118-123.
◦ World Palliative Care Alliance, & World Health Organization. (2014). Global atlas of palliative care at the end
of life. Retrieved from: http://www.who.int/cancer/publications/palliative-care-atlas/en/