Episode 006: Featuring Dan Weinstein M.S., CCC-SLP, BCS-S

Palliative Care in the Acute and SNF Settings, Feeding Tubes, Thickened Liquids, and Esophageal

What is Palliative Care? • Goal is to help people with serious illnesses feel better • Cancer, heart disease, lung disease, kidney failure, dementia, HIV/AIDS, ALS • Prevent or treat symptoms and side effects of disease and treatment • Pain, trouble sleeping, shortness of breath, loss of appetite/feeling sick to the • Includes emotional, social, practical, and spiritual issues • Can be given any time (upon diagnosis, during treatment, follow-up, end of life)

What is Hospice? • Offers medical care to maintain or improve quality of life for someone whose illness is unlikely to be cured • What’s covered? • Times and services of care team • Medication for symptom control or pain relief • Medical equipment • Physical and occupational therapy • Speech-language pathology services • Dietary counseling • Short-term inpatient care • Short-term respite care • Grief and loss counseling for patient and loved ones • What’s not covered? • Treatment/prescription drugs intended to cure terminal illness or unrelated to that illness • Room and board in a nursing home or hospice residential facility • Care in an emergency room, inpatient facility care or ambulance transportation, unless arranged by • hospice team or is unrelated to terminal illness • Medical Eligibility • Hospice physician and second physician must certify patient meets specific medical criteria • Life expectancy is 6 months or less if illness runs its typical course • Can be recertified if condition continues to decline • Can be discharged if condition improves

Where do we fit in?

“SLPs contribute to the overall quality of life of patients nearing end of life. The goal of intervention at this point is not rehabilitative, but facilitative. If a patient has difficulty, for example, the SLP works with the patient and caregivers to develop compensatory strategies that will allow the patient to eat orally for as long as possible. The SLP may also be asked to participate in team decision-making regarding the use of alternative nutrition (e.g., tube feeding) (Landes, 1999). If the patient has difficulty speaking due to impaired breath support or de-conditioning, the SLP helps develop an alternative communication strategy that will allow the patient to express his wants and needs effectively. Again, the expected outcome of intervention at this point is not necessarily that the patient's abilities will improve, but that they will be able to use the abilities they still possess to interact with family and friends and/or enjoy favorite foods, if that is their wish.”

-ASHA, End-of-Life Issues in Speech-Language Pathology Episode 006: Featuring Dan Weinstein M.S., CCC-SLP, BCS-S

Our role is mostly evaluative. We look at cognitive, communication, and swallowing.

Assessment: • Communication and/or swallowing Cognition even if swallowing is the primary concern • Global Deterioration Scale (GDS) • Clinical Dementia Rating (CDR) scale • Brief Cognitive Rating Scale (BCRS) • Functional Assessment Staging (FAST) • Mostly evaluative • Status of both pre-hospitalization • Stimulability for compensatory strategies • Need for instrumental swallowing assessment • Patient goals

Goals: • Improve safe (comfortable) oral intake and/or maintain/improve swallow function to prevent negative outcomes • Optimize cognitive-communication skills and/or compensate for deficits • Increase trach speaking valve wear time and/or independence with use • Increase family education to facilitate decision making

Interventions: • Education regarding hand feeding, aspiration, prognosis with regards to communication and swallowing • Diet modifications and/or compensatory strategies • Alternative augmentative communication • Trach speaking valve Feeding Tubes:

“Severe dementia frequently causes such complications as immobility, swallowing disorders and malnutrition. These complications can significantly increase the risk of developing pneumonia, which has been found in several studies to be the most commonly identified cause of death among elderly people with Alzheimer’s disease and other dementias.” - Alzheimer’s Association

Most common reasons for wanting a feeding tube: • Prevent aspiration pneumonia (67%) • Prolong life (84%) • Acute stroke • Head and neck cancer • End-stage dementia - “End stage advanced dementia and terminal illness are often characterized by anorexia cachexia syndrome, where the generalized breakdown of homeostatic mechanisms results in decline even when provided with adequate calories and nutrients” Episode 006: Featuring Dan Weinstein M.S., CCC-SLP, BCS-S

According to “Hospital Characteristics Associated With Feeding Tube Placement in Nursing Home Residents With Advanced Cognitive Impairment” (JAMA 2010)

More than one-third of nursing home residents with advanced dementia have a feeding tube inserted • Approximately two-thirds had their feeding tube inserted during an acute care hospitalization - For-profit ownership, larger hospital size, and greater ICU use was associated with increased rates of feeding tube insertion

“The current scientific evidence suggests that the potential benefits of tube feeding do not outweigh substantial associated treatment burdens in persons with advanced dementia.”

Feeding Tubes in Advanced Dementia Position Statement (2013). American Geriatrics Society.

Partial List of Burdens and Complications Associated with PEG Tube Use.

• • • Pneumoperitoneum • • Peritonitis • Prolonged ileus • Fluid overload • Abdominal abscess • Cellulitis • Metabolic disturbance • Bowel obstruction • Subphrenic abscess • Esophageal perforation • Gastroesophageal reflux Death • GI bleeding • Local bleeding • Loss of gustatory pleasure • • Hematoma • Loss of social interaction • Pneumonia • Tube malfunction • Stoma stenosis • Loss of dignity • Aspiration • Placement failure • Gastrocolic fistula • Gastric perforation

Finucane, T., Christmas, C., & Travis, K. (1999). Tube feeding in patients with advanced dementia: A review of evidence. Journal of the American Medical Association, 282, 1365-70.

Poor Prognostic Indicators for a PEG:

• Age > 75 • Charlson score > 3 • Male gender • Low BMI • Diabetes mellitus • Albumin < 3g/dl • COPD • Hospitalized • Advanced cancer • Bedridden • Previous aspiration • Pressure sores • UTI • Dementia

Taylor, C. A., et al. (1992). Predictors of outcome after percutaneous endoscopic gastrostomy: A community- based study. Mayo Clinic Proceedings, 67, 1042-9 . Shah, P. M., Sen, S., Perlmuter, L. C., & Feller, A. (2005). Survival after percutaneous endoscopic gastrostomy: The role of dementia. The Journal of Nutrition, Health, and Aging, 9, 255-9. Episode 006: Featuring Dan Weinstein M.S., CCC-SLP, BCS-S

Decision Making:

• What are the medical or clinical facts for this patient? • How does the clinician advocate for the patient’s quality of life? Beneficence, nonmaleficence, and respect for autonomy • What are the patient preferences? • What are the contextual/cultural facts?

Lessons Learned: We Can’t Always Fix It. • We can help identify and refer patients to palliative/hospice sooner • Be ready to have a difficult conversation • With family, team • We can’t always be the “fix-it” professions • Facilitate versus strengthen • Educate ourselves so we can educate patient, family, and medical staff • Understand complex dynamics of progressive terminal illness • Options • Don’t forget about the patient • Collaboration • Identify champions in each discipline

Dan's recommended courses:

• ASHA's Dysphagia in Older Adults Online Conference, offered Nov. 29 - Dec. 11, 2017. • Dan's "practice changing" course: Julie Huffman's course on Esophageal Dysphagia. It is offered through Carolina FEES