Dysphagia and Palliative Care: Working as a team for quality of life By: Caitlin Saxtein, M.S., CCC-SLP

Caitlin Saxtein, M.S., CCC-SLP, is a speech-language pathologist at Peconic Bay Medical Center, part of the Northwell Health System. Caitlin received her masters of science in communication sciences and disorders from Adelphi University. She is a Speaker’s Bureau committee member of Long Island Speech-Language-Hearing Association, an active member of ASHA Special Interest Group 13 (Swallowing and Swallowing Disorders), the Dysphagia Research Society, and 3- time ASHA ACE Award recipient for continuing education. She currently works as a medical speech pathologist in acute care and subacute rehabilitation; as well as, has experience in the outpatient and home health settings. She is trained in RMST, MDTP, LSVT, and FEES. Caitlin has an extensive background with East End Hospice, volunteering with this organization for nearly 15 years; making bereavement phone calls and co- leading groups at Camp Good Grief. Caitlin has no financial disclosures.

What is Palliative Care? Think of Palliative Care providers as quality of life specialists. Bloker, Kati (2016).

Palliative Care vs. Hospice Care Palliative care is specialized medical care for people living with a serious illness. This type of care is focused on relief from the symptoms and stress of a serious illness. GOAL: Improve quality of life for both the patient and the family. Hospice Care Hospice care is a philosophy of care that focuses on the palliation of a chronically ill, terminally ill or seriously ill patient's pain and symptoms, and attending to their emotional and spiritual needs. Hospice care is reserved for terminally ill patients when treatment is no longer curative during the last 6 months of life, assuming the disease takes its normal course. GOAL: Palliation when treatment is no longer curative. Center to Advance Palliative Care (2019). What is palliative care. Retrieved from https://getpalliativecare.org/whatis/

Hospice and palliative care both offer compassionate care to patients with life limiting illnesses. Palliative care, which is always a component of hospice care, can be used as a separate area of medical practice while the patient is receiving treatment. Center for Hospice Care Southeast Connecticut (2018). Hospice and palliative care. Retrieved from https://www.hospicesect.org/hospice-and-palliative-careThe

Robinson, Bruce (2015).

The Palliative Care Team The interdisciplinary palliative care team generally includes: Physicians Nurse Practitioners Nurses Social Worker Other experts often fill out the team according to a patients’ needs, including: Chaplains Music, Art, and Pet Therapy Home Health Aides Physical Therapists Occupational Therapists And of course.. SPEECH LANGUAGE PATHOLOGISTS!

What is our role? According to a study completed at Harvard Medical School in 2014, Dysphagia affects 1 in 20 Americans. 48% of adults felt their swallowing problem to be of moderate severity or greater. Speech-Language Pathologists should be actively involved in the palliative care team to assist in providing education while the goals of care for our patients’ are determined. Bhattacharyya, N. (2014). The prevalence of dysphagia among adults in the united states. Otolaryngology-Head and Neck Surgery, 151(5), 765-769.

The human experience of living with difficulty swallowing... We need to be aware… Food and drink are social events that symbolize acceptance, friendship and community We live in a food-oriented society! From a cup of coffee with a friend, to a wedding reception, most social gatherings involve food and drink. Giving someone food and drink is associated with nurturing and caring! The human experience of living with difficulty swallowing... Food and drink have many social meanings! McHorney, C., et al (2000). Slomka, J. (2003).

The human experience of living with difficulty swallowing... We need to be aware… The depth of perceived and felt suffering among patients with oropharyngeal dysphagia Swallowing problems may evoke a host of distressing psychosocial responses such as anxiety, embarrassment, fear, and reduced self-esteem Overall quality of life and life satisfaction Emotional well-being Family and social functioning Quality of care Patient expectations and satisfaction of swallowing treatment The human experience of living with difficulty swallowing... McHorney, C., et al (2000).

Psychological & Social Impact of Dysphagia Ekberg et al. (2002) investigated psychological and social impact of dysphagia on a sample of 350 patients, 41% of patients reported that they experienced panic or anxiety during mealtimes 36% avoiding eating with others because of their dysphagia Ekberg, O., Hamdy, S., Woisard, V., Wuttge-Hannig, A., Ortega, P. (2002). Social and psychological burden of dysphagia: its impact on diagnosis and treatment. Dysphagia, 17, 139-46.

Psychological Risk Factors A study conducted by Alimentary Pharmacology & Therapeutics (2008) revealed: Psychological Risk Factors (3 psychological risk factors considered were anxiety, depression, and neuroticism amongst those with dysphagia compared to no dysphagia): Intermittent dysphagia was independently associated with anxiety, while the presence of progressive dysphagia was independently associated with depression. Impact on Quality of Life (Utilizing the SF-35 comparing those with nil dysphagia and dysphagia): Intermittent dysphagia independently associated with a reduction in the ‘role physical’ subscale or physical role functioning, while progressive dysphagia was independently associated with reduced ‘general heath’ or general health perceptions. Overall, it was found that the severity of the dysphagia has a greater impact on quality of life This study found an independent relationship among those with intermittent dysphagia, which was associated with anxiety, while progressive dysphagia was associated with depression, but no specific reason for this finding was determined. It has been suggested that anxiety associated dysphagia typically occurs when eating and often individuals want to eat by themselves. SF- 36 is generic measures of health-related quality of life and has been shown to discriminate between subjects with different chronic conditions and between subjects with different severity levels of the same disease.  Eslick, G.D., Talley, N.J. (2008). Dysphagia: epidemiology risk factors and impact on quality of life – a population – based study. Alimentary Pharmacology & Therapeutics, 27, 971-979.

Patients’ who are unable to swallow or have nutritional deficits may be provided with artificial nutrition and hydration through a variety of interventions… but should we always do so? Fine, R. (2006). Ethical Issues in Artificial Nutrition and Hydration Nutrition in Clinical Practice, 21, 118-125.

Is Alternate Means of Nutrition and Hydration Effective? ANH may be beneficial in the right circumstances… ANH is excellent for patients with a temporary inability to swallow ANH may prolong life and allow a more accurate assessment of the patient’s chance of recovery Improve quality of life On the other hand, ANH does not cure or reverse any terminal or irreversible disease or injury. Patients who aspirate and require ANH may also be aspirating their secretions Significant complication can also be associated with ANH, including… Bleeding Infection Physical restraint Diarrhea Nausea Vomiting ANH does not cure or reverse any degenerative disease of the brain – dementia, ALS, MS, Parkinsons We need to comprehend the complex dynamics of progressive terminal illnesses Fine, R. (2006). Ethical Issues in Artificial Nutrition and Hydration Nutrition in Clinical Practice, 21, 118-125.

Is Alternate Means of Nutrition and Hydration Effective? A review from Nutrition in Clinical Practice (2006), of ANH to terminally ill patients suggests increased suffering without improved outcome making such nutrition support not only medically unjustified but ethically dubious as well. Fine, R. (2006). Ethical Issues in Artificial Nutrition and Hydration Nutrition in Clinical Practice, 21, 118-125.

“Medically provided nutrition and hydration were developed for patients who for some, usually temporary, reason cannot eat and drink. However, feeding tubes became widely used in patients unlikely to recover.” Slomka, J. (2003). Withholding nutrition at the end of life: clinical and ethical issues. Cleveland Clinic Journal of Medicine, 70 (6), 548-552.

Medically provided nutrition and hydration is not socially normative.” “…providing nutrition and hydration is not synonymous with feeding someone – or with eating. People eat in a socially normative way (ie, through mouth) And with socially normative tools (eg, knives, forks, chopsticks). Medically provided nutrition and hydration is not socially normative.” WE NEED TO REMEMBER Slomka, J. (2003). Withholding nutrition at the end of life: clinical and ethical issues. Cleveland Clinic Journal of Medicine, 70 (6), 548-552.

ANH & QOL Per ASHA, published data regarding specific outcomes associated with PEG tube feeding are limited and varied. First, one must consider the different categories of outcomes and how they are focused (e.g., short or long term). Reported measurable outcomes can include Survival rates Specific nutrition and hydration goals Prevention of aspiration General recovery Recovery of swallowing and PO status Complications Quality of life - ASHA, End-of-Life Issues in Speech-Language Pathology American Speech Language Hearing Association. (n.d.). End-of-Life Issues in Speech-Language Pathology. Retrieved from https://www.asha.org/slp/clinical/endoflife/

ANH & QOL Recommendations for ANH should not be solely based on clinical and instrumental examinations of swallowing. “Factors such as Medical status (diagnosis, acute vs. chronic, progressive vs. reversible) Nutritional status (current nutritional status and intake, projected needs as determined by dietitian) Behavioral/cognitive status (ability to attend and participate in the meal process) are all important clinical considerations when recommending ANH.” - ASHA, End-of-Life Issues in Speech-Language Pathology American Speech Language Hearing Association. (n.d.). End-of-Life Issues in Speech-Language Pathology. Retrieved from https://www.asha.org/slp/clinical/endoflife/

What We Know, What We Don’t Know “SLPs are in a position to dispel some of the misconceptions around ANH. In a study completed in 2000, the most common reasons given for wanting eternal feeding were to Prevent aspiration (67%) Prolong life (84%)” What We Know, What We Don’t Know Feeding tubes cannot prevent aspiration of contaminated oral secretions or regurgitated gastric contents Many studies have identified tube feeding as a risk factor for pneumonia Hanna, E., Joel, A. (2005). End-of-life decision making, quality of life, enteral feeding, and the speech-language pathologist. Swallowing and Swallowing Disorders, 13-18. Mitchell, S. L., Berkowitz, R. E., Lawson, F.M., & Lipsitz, L. A. (2000). A cross-national survey of tube-feeding decisions in cognitively impaired older persons. Journal of the American Geriatrics Society, 48, 391-397.

Is not the withholding of ANH even more harmful Is not the withholding of ANH even more harmful? Not only will the patient die, but will they suffer until death? Fine, R. (2006). Ethical Issues in Artificial Nutrition and Hydration Nutrition in Clinical Practice, 21, 118-125.

Is not the withholding of ANH even more harmful Is not the withholding of ANH even more harmful? Not only will the patient die, but will they suffer until death? McCann, R.M., et al (1994) performed a study of patients who were terminally ill. 63% of the patients experiences no hunger or thirst. 35% of the patients had symptoms (hunger, thirst, and dry mouth) only initially. These symptoms were easily alleviated with sips of liquids and good oral hygiene. Small studies have suggested that most dying patients do not experience significant hunger or thirst and that artificially provided nutrition and hydration are not necessarily effective in relieving such hunger and thirst. if they do complain of hunger or thirst, they generally want to taste specific foods and have the dryness in their mouths relieved by oral liquids Fine, R. (2006). Ethical Issues in Artificial Nutrition and Hydration Nutrition in Clinical Practice, 21, 118-125. McCann, R.M., Hall, W.J., Groth-Juncker, A. (1994). Comfort care for terminally ill patients; the appropriate use of nutrition and hydration. JAMA, 272, 12-63. Smith, S. A. (1997). Controversies in hydrate the terminally ill patient. Journal of Intravenous Nursing, 20 (4), 193-200.

“In forgoing a life-sustaining therapy such as nutrition and hydration, the patient’s underlying disease causes death because the patient cannot live without the treatment.” Focus on the disease process as the cause of death, as well as on the realistic goals of comfort care, may help the family provide optimal end of life care Slomka, J. (2003). Withholding nutrition at the end of life: clinical and ethical issues. Cleveland Clinic Journal of Medicine, 70 (6), 548-552.

Now what…. We work as a team for patient-centered care! communication involves empathizing and actively seeking patient and family participation in decision making by all the involved parties…”

What is MOLST? MOLST (Medical Orders for Life-Sustaining Treatment) is a medical order form approved by the New York State Department of Health. It is appropriate for patients with a terminal condition, defined in Rhode Island as “an incurable or irreversible condition that, without the administration of life sustaining procedures, will in the opinion of the attending physician, result in death.” MOLST tells others your wishes for life-sustaining treatment. The form is on bright pink paper so it can be easily identified in case of an emergency. New York State, Connecticut, Rhode Island, Massachusetts, Ohio and Maryland (6) Martin, E., Mcdonald, J. (2014) What is MOST? Rhode Island Medical Journal, 44-46.

Artificially Administered Fluids and Nutrition: When a patient can no longer eat or drink, liquid food or fluids can be given by a tube inserted in the stomach or fluids can be given by a small plastic tube (catheter) inserted directly into the vein. If a patient chooses not to have either a feeding tube or IV fluids, food and fluids are offered as tolerated using careful hand feeding. Options are: No feeding tube, a trial periods of feeding tube, long-term feeding tube, if needed, no IV fluids, a trial period of IV fluids

Artificially Administered Fluids and Nutrition: When a patient can no longer eat or drink, liquid food or fluids can be given by a tube inserted in the stomach or fluids can be given by a small plastic tube (catheter) inserted directly into the vein. If a patient chooses not to have either a feeding tube or IV fluids, food and fluids are offered as tolerated using careful hand feeding. Options are: No feeding tube A trial periods of feeding tube Long-term feeding tube If needed: No IV fluids A trial period of IV fluids What are the options?

Who should have a MOLST? Residents in a long-term care facility. Patients that reside in the community and need long-term care services. Patients that may die within the next year. Patients who may want to avoid or receive some or all life-sustaining treatment. Examples of Life-Sustaining Treatment: Cardiopulmonary Resuscitation (CPR) Intubation and Mechanical Ventilation Future Hospitalization Feeding Tube Antibiotics Who should have a MOLST? How does a provider determine how long a patient has to live i.e. prognosis – The Surprise Question – would you be surprised if this patient were alive in a year? Then completing a MOLST is a very good proactive plan.

“Our training has been directed towards the prolongation of life (Ashby & Stofell, 1995), a goal at which all eventually fail. Openness to the perspective that extending life is not necessarily the greatest good if it does not correspond to the patient’s values is vital if health care providers are to adequately support these discussions.” Ashby, M., Stofell, B. (1995) Artificial hydration and alimentation at the end of life: a reply to Craig. Journal of Medical Ethics, 21, 135-140. Hanna, E., Joel, A. (2005). End-of-life decision making, quality of life, enteral feeding, and the speech- language pathologist. Swallowing and Swallowing Disorders, 13-18.

“The ability to break bad news effectively and compassionately involves not only delivering the information clearly, but also providing emotional support, responding to patient and family reactions, assuaging any fears of provider abandonment, participating in group decision making, and maintaining a sense of hope.” Easing Dias, L., Chabner, B. A., Lynch, T. J., Penson, R. T. (2003). Breaking bad news: a patient’s perspective. The Oncologist, 8, 587-596.

We, as speech language pathologists, provide pivotal input regarding swallowing that can greatly affect the quality of life people receive on palliative care. We must EDUCATE TRAIN SUPPORT our patients and their families! ; Article 6

91 y/o female, BIBA to the hospital 91 y/o female, BIBA to the hospital. Patient was found down outside on her lawn by a family member coming to visit. Initial symptoms include: vision loss, left sided weakness, and confusion tPA not administered as unable to establish time of onset of symptoms Initial CT of Brain revealed limited study by motion artifact. 2cm area of low attenuation in the right cerebellum likely related to prior infarct however MRI is recommended. PMHX: HTN Case Study

Day 2: CSE completed: Patient awake and alert, speech is dysarthric marked by imprecise articulatory contact and low vocal volume. Left facial asymmetry at rest and with movement with left lingual deviation. Top dentition intact, bottom bridge in place. Recommendations: NPO with video fluoroscopic swallowing study to view physiology of swallow mechanism VFSS completed on day 2: Patient presents with oropharyngeal dysphagia marked by reduced manipulation of the bolus for formation and transport with spillage over the BOT to level of valleculae with initiation of the pharyngeal swallow at this level, piecemeal deglutition, reduced BOT retraction, epiglottic inversion, hyolaryneal elevation/excursion with incomplete airway closure with aspiration of all consistencies trialed. Attempted compensatory strategies, including head turn left, small mouthfuls, and liquids via tsp presentations without success. Cervical osteophytes noted at c3-4 which narrowed pharynx. Pyriform sinus stasis overflowed into airway with aspiration of stasis, patient intermittently able to reduce stasis with cues to second swallow. Recommendations: NPO, physician placed NGT, oral care, dysphagia therapy

MRI of Brain Day 2: Acute nonhemorrhagic ischemic infarction and right middle cerebral artery distribution with regional mass effect and cytotoxic edema. Advanced chronic small vessel ischemic changes. Old infarct right cerebellum. Scattered mucosal disease of paranasal sinuses. Palliative Care Meeting: NP met with patients’ son, HCP, diagnosis confirmed by MRI and results of VFSS. He acknowledged that the patient would not want extra-ordinary measures, no CPR or intubation. Does want treatment, including NGT as temporary feeding measure while patient is followed by Speech Pathology Patient has been living independently. Has been active and feeling well. Patient, herself, mentioned several times, "who would have thought" and "I don't want to be sick.“ Goal: Patient is given opportunity to recover and that she is comfortable. Patient expressed her one wish, that her son be with her through the process. We take one day at a time, a MOLST can be revised to better address medical issues at each point in time

Patient received daily dysphagia treatment to address deficits noted on initial VFSS. Patient and family were educated on importance of oral care and completed multiple times a day. Repeat VFSS completed on Day 7 with similar results as initial VFSS, patient with aspiration of PO trials.

Palliative Care Meeting: Participants included NP, patient, family, and speech pathologist. Results of VFSS were reviewed and explained in detail (family present and educated post VFSS x2) Discussion of PEG tube place for alternate means of nutrition/hydration and continued dysphagia treatment for possible improvement. Patient clearly stated that she does want PEG tube, despite possible recovery, stating, “what if I do not recover? I want to be comfortable.” Nor does she want to be a burden on family members. Patient does not want a PEG tube despite possible recovery, stating, “what if I do not recover? I want to be comfortable.”

If the patient has a chance of survival, will the quality of life be acceptable to him or her? “Decisions about nutrition and hydration should be based primarily on the potential burden vs the potential benefits.” Slomka, J. (2003). Withholding nutrition at the end of life: clinical and ethical issues. Cleveland Clinic Journal of Medicine, 70 (6), 548-552. “…artificial nutrition and hydration will neither reverse the underlying pathophysiology nor make the patient feel better.” “The range of possible outcomes should be communicated fully to help the patient (or parents if the patient is a child) and family make informed choices.” von Gunten, C. F., Ferris, F. D., Emanuel, L. L. (2000) Ensuring competency in end-of-life care. JAMA, 284 (23), 3051-3057. Realistic about recovery

Case Study Patient is an 81yo pmhx GERD, HTN, HLD, DM, Parkinson’s disease, dementia, depression who presents with daughter, primary historian, c/o increased fatigue, weakness, and falls. Upon admission, in the late afternoon, patient oriented to self and place, intermittently answers questions with one word answers with occasional confusion.

CXR revealed no acute pulmonary disease CT Brain w/o contrast revealed diffuse atrophy and microvascular disease consistency with age. Old lacunar infarction right insula/temporal lobe. Diet consistency: regular with thin liquid Medications: Donepezil HCL (Aricept) 10mg Escitalopram (Lexapra) 10mg Memantine (Namenda) 5mg Aspirin 81mg Ceftriaxone 1gm/50ml D5W 50ml Rivaroxaban (Xarelto) 20mg Atorvastatin (Lipitor) 20mg Docusate Sodium (Colace) 200mg Clonazepam (Klonopin) 0.5mg Sodium Chloride 0.9% Carbidopa-levodopa (Rytary) 23.75mg- 95mg Escitalopram oxalate 10mg Levomefolate-B2-B6-B12 (Cerefolin)

Plan of care: SAR when medically ready for discharge. Repeat CXR day 3 revealed questionable developing left basilar infiltrate Neurology Consult: AMS due to dementia and delirium secondary to infection, urine mildly positive for UTI, chest congestion with CXR suggestive of left basilar infiltrate now on Ceftriaxone Swallow evaluation revealed patient to be awake with confused language, oriented x0, unable to follow commands for completion of oral motor exam, open mouth posture at rest, xerostomia; hoarse vocal quality with reduced rate of speech and low vocal volume. Recommendations included a puree consistency skajdlksjajdslakdjslak honey thick liquid via tsp presentations, aspiration precautions. Palliative care consult in place for POC clarification. Palliative care initial meeting with HCP, HCP acknowledges that patients’ dementia and PD have progressed, cognitive and functional capacity have declined. Family at crossroads of trying to decide what to do regarding patients’ increasing care needs. Referral made to Caregiver Support Program. Goals of care: Curative for acute infection, management of chronic disease process. Plan of care: SAR when medically ready for discharge. Code Status: DNR/DNI MOLST: DNR/DNI Treatment Guidelines: Limited medical interventions Future Hospitalizations: Deferred Feeding Tube: No feeding tube IV Fluids: Trial of IVF Antibiotics: Use antibiotics Other: Not discussed; Dialysis, Transfusions

WBC trending up, change of antibiotics as condition has deteriorated. Day 4: WBC trending up, change of antibiotics as condition has deteriorated. Per nursing Increased weakness and lethargy, minimally responsive to verbal stimuli Wet cough, unable to bring up secretions, suction unsuccessful due to patient being uncooperative on multiple occasions Speech Pathology f/u: Patient sleeping, unable to effectively arouse secondary to lethargy. Open mouth posture at rest, wet/gurgly quality, respiratory provided nasotracheal suctioning to remove thick, copious secretions Palliative Care f/u: What matters most to patient and family: patient is safe, needs for wellbeing are met. Daughter verbalized a very realistic approach to plan of care. Daughter hoping for improvement, yet understands patient has a progressive disease process. Day 5: Speech Pathology f/u: Patient agitated, combative, grabbing at therapist. HHA redirected and provided encouragement for participation. Patient stating, “I want to die.” Discussed with nursing, MD, and palliative care team. Palliative Care f/u: Discussed diagnosis, prognosis, treatment options, disease, burden, comfort care, and hospice care. Patient has expressed to be tired and does not want medical intervention to extend life. Patient became agitated at times and pulled out IV. Patient has pain, requiring IV medication. Family feels the patient is suffering and are requesting comfort care and application to inpatient hospice. Provide extra layer of support Different pathways dependent upon patient and response to intervention

If the patient has a chance of survival, will the quality of life be acceptable to him or her?

References American Speech Language Hearing Association. (n.d.). End-of-Life Issues in Speech-Language Pathology. Retrieved from https://www.asha.org/slp/clinical/endoflife/ Ashby, M., Stofell, B. (1995) Artificial hydration and alimentation at the end of life: a reply to Craig. Journal of Medical Ethics, 21, 135-140. Bloker, Kati (2016). Palliative care expands in northern Colorado [Online image]. Retrieved from https://www.uchealth.org/today/palliative-care-expands-in-northern-colorado/ Bhattacharyya, N. (2014). The prevalence of dysphagia among adults in the united states. Otolaryngology-Head and Neck Surgery, 151(5), 765-769. Cegelka, A. (2014). American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement. The American Geriatrics Society. Center to Advance Palliative Care (2019). What is palliative care. Retrieved from https://getpalliativecare.org/whatis/ Center for Hospice Care Southeast Connecticut (2018). Hospice and palliative care. Retrieved from https://www.hospicesect.org/hospice-and-palliative-careThe Dias, L., Chabner, B. A., Lynch, T. J., Penson, R. T. (2003). Breaking bad news: a patient’s perspective. The Oncologist, 8, 587-596. Ekberg, O., Hamdy, S., Woisard, V., Wuttge-Hannig, A., Ortega, P. (2002). Social and psychological burden of dysphagia: its impact on diagnosis and treatment. Dysphagia, 17, 139-46. Eslick, G.D., Talley, N.J. (2008). Dysphagia: epidemiology risk factors and impact on quality of life – a population – based study. Alimentary Pharmacology & Therapeutics, 27, 971-979. Fine, R. (2006). Ethical Issues in Artificial Nutrition and Hydration Nutrition in Clinical Practice, 21, 118-125. Geppert, C., Andrews, M., Druyan, M. (2010) Ethical issues in artificial nutrition and hydration: a review. Journal of Parenteral and Enteral Nutrition, 34, 79-88. Hanna, E., Joel, A. (2005). End-of-life decision making, quality of life, enteral feeding, and the speech-language pathologist. Swallowing and Swallowing Disorders, 13-18.

References Martin, E., Mcdonald, J. (2014) What is MOST? Rhode Island Medical Journal, 44-46. McCann, R.M., Hall, W.J., Groth-Juncker, A. (1994). Comfort care for terminally ill patients; the appropriate use of nutrition and hydration. JAMA, 272, 12-63. McHorney, C., Bricker, D., E., Kramer, A., Rosenbeck, J., Robbins, J., Chignell, K., Logemann, J., Clarke, C. (2000). The SWAL-QOL Outcomes Tool for Oropharyngeal Dysphagia in Adults: I. Conceptual Foundation and Item Development. Dysphagia, 15, 115-121. Mitchell, S. L., Berkowitz, R. E., Lawson, F.M., & Lipsitz, L. A. (2000). A cross-national survey of tube-feeding decisions in cognitively impaired older persons. Journal of the American Geriatrics Society, 48, 391-397. O’Reilly, A., Walshe, M. (2015). Perspectives on the role of the speech and language therapist in palliative care: an international survery. Palliative Medicine. 29(8): 756-761. Rabeneck, L., McCullough, L., Wray, N. (1997) Ethically justified, clinically comprehensive guidelines for percutaneous endoscopic gastrostomy tube placement. The Lancet, 349, 496-98. Robinson, Bruce (2015). Why palliative care is growing [Online image]. Retrieved from https://radio.krcb.org/post/why-palliative-care- growing-0#stream/0 Slomka, J. (2003). Withholding nutrition at the end of life: clinical and ethical issues. Cleveland Clinic Journal of Medicine, 70 (6), 548-552. Smith, S. A. (1997). Controversies in hydrate the terminally ill patient. Journal of Intravenous Nursing, 20 (4), 193-200. von Gunten, C. F., Ferris, F. D., Emanuel, L. L. (2000) Ensuring competency in end-of-life care. JAMA, 284 (23), 3051-3057.  

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