palliative care: as a of · actively involved in the palliative care team to assist in providing...

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Dysphagia&Palliative Care:

WorkingasaTeamforQualityofLife

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 4-time ASHA ACE Award recipient for continuing education. Caitlin is the Medical Co-Chair for the 2019 New York State Speech-Language-Hearing Association (NYSSLHA) Annual Convention. Caitlin was recently featured on Theresa Richards’ Swallow Your Pride Podcast, episode 098.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.

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Disclosures:

Financial: Caitlin will be receiving an honorarium from LISHA for her presentation.

Non-Financial: Caitlin is a LISHA Speaker’s Bureaucommittee member.

1. Discuss potential plans of action to address dysphagia when a patient is nearing endof life.

2. Integrate knowledge of dysphagia to apply a patient centered plan of action.

3. Understand the role and identify the need of speech language pathologists and palliative care to integrate as an interdisciplinaryteam.

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PollEv.com/CAITLINSAXTE234 How to Respond: Respond at

PollEv.com/caitlinsaxte234

TextsCAITLINSAXTE234 to 22333 to join the session, then text

Acute CareSkilled Nursing FacilityHome HealthPrivate Practice

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DOYOUHAVEA

PALLIATIVECARE TEAMINYOURSETTING?

Think of Palliative Care providers asquality of life specialists.

Bloker, Kati (2016).

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Palliative CarePalliative 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.

Center to Advance Palliative Care (2019).Whatis palliative care. Retrieved from https://getpalliativecare.org/whatis/

PalliativeCarevs.Hospice CareHospice CareHospice care is a philosophy of care that focuses on the palliation of achronically 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 longercurative.

Center to Advance Palliative Care (2019).Whatis palliative care. Retrieved from https://getpalliativecare.org/whatis/

PalliativeCarevs.Hospice Care

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Robinson, Bruce (2015).

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ThePalliativeCare TeamThe interdisciplinary palliative care team generally includes:

• Physicians

• Nurse Practitioners

• Nurses

• Social WorkerOther 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.. SPEECHLANGUAGE PATHOLOGISTS!

Whatis ourrole?

According to a study completed at Harvard Medical School in 2014,

Dysphagiaaffects1in20Americans.

48% of adults felt their swallowing problem to be of

moderate severity or greater.

Speech‐LanguagePathologistsshouldbeactivelyinvolvedinthepalliativecareteamtoassistinprovidingeducationwhilethegoals ofcareforourpatients’are determined.

Bhattacharyya, N. (2014). The prevalence of dysphagia among adults in the united states. Otolaryngology‐Headand NeckSurgery,151(5), 765-769.

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Colby, S. L., Ortman, J. M. (2014).The baby boom cohort in the united states: 2012 to 2060.U.S. Census Bureau, P25‐1141.

“The cohort during the post-World War II baby boom in

the United Stated, referred to as the babyboomers, has

been driving the change in the age structure of the U.S.

population since their birth.”

Bornbetween 1946‐1964

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Colby, S. L., Ortman, J. M. (2014). The baby boom cohort in the united states: 2012 to 2060. U.S.CensusBureau, P25‐1141.

Ortman, J. M., Velkoff, V. A. (2014). An aging nation: the older population in the United Stated. U.S.CensusBureau,P25‐1140.

2029

“By 2029, when all of the baby boomers will be 65years and over, more than 20 percent of the totalU.S. population will be over the age of 65.”

2050

“In 2050, those aged 85 and over are projected toaccount for 4.5 percent of the U.S. population, upfrom 2.5 percent in 2030.”

2056

“By 2056, the population 65 years and over is projected to become larger than the population under 18 years.”

Garza, A. (2016). The aging population: the increasing effects on health care. Retrieved from https://www.pharmacytimes.com/publications/issue/2016/january2016/the-aging-population-the-increasing-effects-on-health-care

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Colby, S. L., Ortman, J. M. (2014). The baby boom cohort in the united states: 2012 to 2060.U.S.CensusBureau, P25‐1141.

“DependencyRatios”are an indicator of the potential burden on those in the working-age population.

“A larger population in the oldest ages relative totheworking-age population will increase old-agedependency…”

“…likely to present challenges to the government, families, and business as they attempt to meet the needs of the growing older population.”

“By 2030, when all of the babyboomers will be 65 or older,

the old-age dependency ratio is projected to reach almost 35,

an increase of 14 older residents for every 100 working-age

adults.”

Colby, S. L., Ortman, J. M. (2014). The baby boom cohort in the united states: 2012 to 2060. U.S.CensusBureau,P25‐1141.

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“THIS CHANGING AGESTRUCTURE OF THE POPULATION WILL HAVE AN IMPACT ON BOTH FAMILIES AND SOCIETY.”

Vincent, G. K., Velkoff, V. A. (2010). The next four decades; the older population in the United States: 2010 to 2050. U.S. Census Bureau, P25-1138.

CancerDementiaIncrease in the number of fallsObesityDiabetes


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Cancer“…due to the increasing

aging population, the number of cancer cases is expected to increase to17 million by 2020 and 27million by 2030.”


Dementia

“Alzheimer’s Disease International projects there will be 115 million individuals living with Alzheimer’s disease/ dementia in the world by 2050.”


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Increasein falls

“…with falls being one of the most common causes of injury in the older population, this is expected to be a challenge to our health care system.

According to a report released by the American Hospital Association (AHA), “more than one-third of adults 65 or older fall each year.

Of those who fall, 20% to 30% suffer moderate to severe injuries that decrease mobility and independence.

Almost 350,000 hip fractures occurred in 2000, a figure that is expected to double by the year 2050.”


Obesity Obesity is a risk factor for many health conditions.


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Diabetes

According to another report released by the AHA, the number of “Americans with diabetes is expected to rise from 20 million today to46 million by 2030,when1ofevery4Boomers,

14 million, will be living withthis chronic disease.”


WITHTHEAGING POPULATION

ANDCHRONICCONDITIONSONTHE RISE

HEALTHCAREBECOMESMORE COMPLEX

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Garza, A. (2016). The aging population: the increasing effects on health care. Retrieved fromhttps://www.pharmacytimes.com/publications/issue/2016/january2016/the-aging-population-the-increasing-effects-on-health-care

Resource needs will continue to increase across all health care settings

The incidence of obesity will continue to increase.

A shortage of health care professionals is expected

The diversity of caregivers lags behind the growing diversity of patients

Garza, A. (2016). The aging population: the increasing effects on health care. Retrieved fromhttps://www.pharmacytimes.com/publications/issue/2016/january2016/the-aging-population-the-increasing-effects-on-health-care

Care has been focused on a single disease versus addressing comorbidity

The sustainability and structure of federal programs in relation to the increasing aging population are a concern

Changes in family structure may lead to fewer family caregivers

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Thehealthcaresystemmustpreparetoensurepatientsarereceivingthebestmedical

management,aswellas,additionalcaregivingand support.

Thehumanexperience oflivingwithdifficulty

swallowing...

We need to be aware…

Food and drink are social events thatsymbolize acceptance, friendship andcommunity

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.

Givingsomeonefoodanddrinkisassociatedwithnurturingand caring!

McHorney,C., et al (2000).

Slomka, J. (2003).

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“Eatingfood,sharing food,sittingat meals

together,aresignificant

socialeventsinallculturesacross the

world.”

Van de Vathorst, S. (2014). Artificial nutrition at the end of life: ethical issues. BestPractice&ResearchClinicalGastroenterology;28, 247-253.

“Almostallsocialinteraction involvesfoodand drink,

notsimplytofulfillapsychological need,

buttoaffirmthesocialbondswehavewithotherhuman

beings.”Slomka, J. (1995).What do apple pie and motherhood have to do with feeding tubes and caring for the patient?.ArchInternMed;155, 1258-1263.

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In our own society, we offer coffee to a visitor as amark of courtesy, we eat lunch with friends, or wehave family dinner together.

Food is part of ritual celebrations, such asweddings or funerals.

Special foods customarily are eaten on special holidays:

Hot dogs and hamburgers on theFourth of July

Turkey and pumpkin pie on Thanksgiving

Themeaningoffoodisfurthertied toourculturalandmoral beliefs….

Slomka, J. (1995). What do apple pie and motherhood have to do with feeding tubes and caring for the patient?. ArchInternMed;155, 1258-1263.

Thehumanexperience oflivingwithdifficulty

swallowing...

We need to be aware…

The depth of perceived and felt suffering amongpatients 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 swallowingtreatment

McHorney,C., et al (2000).

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Psychological&SocialImpactofDysphagia

Ekberg et al. (2002) investigated psychological and social impact of dysphagia on a sample of 350 patients,

41% of patients reported that they experienced panicor anxietyduring mealtimes

36% avoidingeatingwith others becauseof 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.

A study conducted by Alimentary Pharmacology & Therapeutics(2008) researched PsychologicalRisk Factors 3 psychological risk factors considered were anxiety,

depression, and neuroticism amongst those with dysphagia compared to no dysphagia

Intermittent dysphagia was independently associated withanxiety

Progressive dysphagia was independently associated withdepression

Eslick, G.D., Talley, N.J. (2008). Dysphagia: epidemiology risk factors and impact on quality of life – a population –based study. AlimentaryPharmacology&Therapeutics,27, 971-979.

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Impact on Quality of Life (Utilizing the SF-35 comparing those with nil dysphagia and dysphagia):

Intermittent dysphagia was independently associated witha reduction in the ‘role physical’ subscale or physical rolefunctioning

Progressive dysphagia was independently associated withreduced ‘general heath’ or generalhealth perceptions

Overall, it was found that theseverityof thedysphagiahasagreaterimpactonqualityof life

Eslick, G.D., Talley, N.J. (2008). Dysphagia: epidemiology risk factors and impact on quality of life – a population –based study. AlimentaryPharmacology&Therapeutics,27, 971-979.

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Artificial administration of nutrition and hydration (ANH) is most often recommended when patients are no longer able to sustain their nutritional needs through oral eating or are high risk for developing complications associated with aspiration.

Sharp, H. M., Shega, J. W. (2009). Feeding tube placement in patients with advanced dementia: the beliefs and practice patterns of speech-language pathologists. American Journal of Speech-Language Pathology; 18, 222-230.

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Druml, C., et al. (2016). ESPEN guideline on ethical aspects of artificial nutrition and hydration. ClinicalNutrition;35, 545-556.

“Every human being needs

nutrition andhydration to live.”

“Nutrition is associated with life

and its absence with starvation.”

ANHmaybebeneficialinthe rightcircumstances…

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

Fine, R. (2006).Ethical Issues in ArtificialNutrition and Hydration Nutrition in ClinicalPractice, 21, 118-125.

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On the other hand, ANHdoesnotcure orreverseanyterminalor irreversiblediseaseor injury…

Patients who aspirate and require ANH may also be aspirating their secretions.

Significant complication can alsobeassociated with ANH, including… Bleeding Infection Physical restraint Diarrhea Nausea Vomiting


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

Prevention of aspiration

Specific nutrition and hydration goals

General recoveryRecovery 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 fromhttps://www.asha.org/slp/clinical/endoflife/

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Recommendations for ANH should not be solely based on clinical and instrumental examinations of swallowing.

“Factors such as Medicalstatus(diagnosis, acute vs. chronic, progressive vs. reversible) Nutritionalstatus(current nutritional status and intake, projected needs as

determined by dietitian) Behavioral/cognitivestatus(ability to attend and participate in the meal process)

are all important clinical considerations when recommendingANH.”

- 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 fromhttps://www.asha.org/slp/clinical/endoflife/ Fine, R. (2006).Ethical Issues in ArtificialNutrition and Hydration Nutrition in ClinicalPractice, 21, 118-125.

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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.

Fine, R. (2006).Ethical Issues in ArtificialNutrition 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).Controversiesin hydrate the terminally ill patient. Journal ofIntravenousNursing, 20 (4), 193-200.

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 alleviatedwith sips of liquids and good oral hygiene.

Fine, R. (2006).Ethical Issues in ArtificialNutrition 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).Controversiesin hydrate the terminally ill patient. Journal ofIntravenousNursing, 20 (4), 193-200.

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“Medically provided nutrition and hydration were developed for patients who for some, usuallytemporary, reason cannot eat and drink.

However, feeding tubes became widely used inpatients unlikely to recover.”

Slomka, J. (2003). Withholding nutrition at the end of life: clinical and ethical issues. ClevelandClinicJournalofMedicine,70(6), 548-552.

Antisocial, depersonalizing image:

in our normal everyday interaction,

a person eats with a knife andfork and drinks from a cup or glass,

not through a tube inserted into ablood vessel or bodily orifice”


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“…providing nutrition and hydration is not synonymous withfeeding 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 sociallynormative.”

Slomka, J. (2003).Withholding nutrition at the end of life: clinical and ethical issues. ClevelandClinicJournalofMedicine,70(6), 548-552.

The use of feeding tube or other forms of artificial nutrition and hydration, then, is not the “normal” social way of eating of feeding someone – it is the “medical” way”

Slomka, J. (1995).What do apple pie and motherhood have to do with feeding tubes and caring for the patient?.ArchInternMed;155, 1258-1263.

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A review from NutritioninClinicalPractice(2006), of ANH to terminally ill patientssuggests…

increasedsufferingwithoutimproved outcome

making such nutrition support not only medicallyunjustifiedbutethicallydubiousas well.


SUCHAPERSONISINTHEPROCESSOF LOSINGCONNECTIONSTOTHESOCIAL SYSTEM.

“CARINGFORTHEPATIENT”INTHISINSTANCEWOULDMEANENHANCINGTHOSEEXISTING

CONNECTIONS

BYCONTINUINGTOOFFERFOODANDDRINK,RATHERTHANDIMINISHINGTHEMTHROUGHTHE

USEOFAFEEDING TUBE.

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“FEEDINGTHEYOUNGANDTHEILLISA POWERFULINSTINCTIVEACT,WHICHMAYBEHARDTO

SUPPRESS.

IFWEDONOT…WEDIE

THISISATRUTHUNIVERSALLYKNOWN,AND FELT”

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“THE REVERSE IS ALSO TRUE,

THE DYING OFTEN DO NOT EAT,

IS LESS WIDELY KNOWN

AND MUCH HARDER TO ACCEPT.”

“In forgoing a life-sustaining therapy such as nutrition and hydration,

the patient’s underlying disease causes deathbecause the patient cannot live without the

treatment.”

Slomka, J. (2003). Withholding nutrition at the end of life: clinical and ethical issues. ClevelandClinic Journal of Medicine, 70 (6), 548-552.

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What We Know,

What WeDon’t Know

“SLPs are in a position to dispelsomeofthemisconceptionsaround ANH.

In a study completed in 2000, the most common reasons given for wanting eternal feeding were to

Prevent aspiration (67%) Prolong life (84%)”

Hanna, E., Joel, A. (2005). End-of-life decision making, quality of life, enteral feeding, and the speech-language pathologist. SwallowingandSwallowingDisorders, 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. JournaloftheAmericanGeriatricsSociety,48,391-397.

Sharp, H. M., Shega, J. W. (2009). Feeding tube placement in patients with advanced dementia: thebeliefs and practice patterns of speech-language pathologists. AmericanJournalofSpeech‐LanguagePathology;18, 222-230.

78% of SLPs believe that PEG tubes improve nutritional status among patients with advanced dementia

More than half (56%) would recommend tube feeding in a patient with advanced dementia and dysphagia

Only 11% would want their own families to approve PEG tube feedings for them

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MacFie, J., McNaught, C. (2014). The ethics of artificial nutrition. UndernutritionandClinicalNutrition;43:2,124-126.

improvednutritionalstatus,

reducedaspiration

preventedpressuresores in

patients with dementia

“In 2010, it was estimated that 35.6 million people suffered from dementia

worldwide.These numbers are expected to double to 65.7 million in

2030.”Van Bruchem-Visser, R. L., Oudshoorn, C., Mattace Raso, F. U., (2014) Letter to the editor/case report: why should we not tube-feed patients with severe Alzheimer dementia?. BestPractice&ResearchClinicalGastroenterology;28, 255-256.

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“In the Choices, Attitudes, and Strategies for Care of Advanced Dementia at the End-of-Life (CASCADE) study,a recent landmark study that followed individuals

with advanced dementia over 18 months,

more than 85% of the study cohort experienced eating difficulties,

with subsequent 6-month mortalityapproaching 50%.”

Daniel, K., Rhodes, R., Vital e, C., Shega, J. (2014). American geriatrics society feeding tubes in advanced dementia position statement. TheAmericanGeriatricsSociety.

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“PNEUMONIA,FEBRILEEPISODES,AND EATINGPROBLEMS

REPRESENTANATURALPROGRESSIONOFTHEDISEASE PROCESS

ANDINDICATEATRANSITIONFROM ADVANCEDDEMENTIATOENDOF LIFE…”

Tube feedingsare not

recommendedfor older adultswith advanced

dementia

“Tube feeding is associated with agitation, greater use of physical and chemical restraints, greater

healthcare use due to tube-related complications, and

development of new pressure ulcers.”


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“Despite evidence showing that feeding tube insertion is notassociated with

prolongedsurvival, preventionofaspiration pneumonia,

healingofdecubitusulcers, improvementinqualityof life,

more than one third of nursing home residents with advanced dementia havea feeding tube inserted.”

Arora, G., Rockey, D., Gupta, S. (2013). High in-hospital mortality after percutaneous endoscopic gastrostomy: results of a nationwide population-based study. ClinicalGastroenterologyandHepatology;11:11, 1437-1444.

Arora, G., Rockey, D., Gupta, S. (2013). High in-hospital mortality after percutaneous endoscopic gastrostomy: results of a nationwide population-based study.ClinicalGastroenterologyandHepatology;11:11, 1437-1444.

In-hospital mortality after PEG was 10.8%

The median number of days from PEG to death was 9 days

Increasing odds of post-PEG mortality

• Increasing age• Congestive Heart Failure• Renal Failure• Chronic Pulmonary Disease• Coagulopathy• Pulmonary Circulation Disorders• Metastatic Cancer• Liver Disease

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APPROXIMATELY

1 IN 10

INPATIENTS UNDERGOING PEG

DO NOT SURVIVE

TO HOSPITAL DISCHARGE

Arora, G., Rockey, D., Gupta, S. (2013).High in-hospital mortality after percutaneousendoscopic gastrostomy: results of a nationwide population-based study. Clinical Gastroenterologyand Hepatology;11:11, 1437-1444.

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Medicine&WhatMattersinthe End

“Nursing homes, devoted above all to safety,

battle with residents over the food they are allowed to eat and the choices they are allowed to make.

Doctors, uncomfortable discussing patients’ anxieties about death,

fall back on false hopes and treatments that are actually shortening livesinsteadof improving them.

And families go along with all of it.”

- Atual Gawande from BeingMortal

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EDUCATIONAND COUNSELINGMUSTBEACRITICALCOMPONENT

FORCAREGIVERSANDPATIENTS

TOALLEVIATEFALSE BELIEFS

“Shared decision-making between healthcare providers and family members or surrogate decision-makers facilitates an evidence-based approach,while providing ongoing guidance and support,so that care plans reflect theindividual’s needs and goals.”


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What isMOLST?

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, resultindeath.” 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.

Martin, E., Mcdonald, J. (2014) What is MOST? RhodeIslandMedicalJournal,44-46.

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What arethe

options?

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

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Who shouldhavea

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

AdvancedDirectives

Advanced directives are an important means of facilitating shared decision making, particularly in difficult end-of-life scenarios

3 Essential Elements:1. The patient and/or proxy is provided

sufficient medical information2. The patient and/or proxy possesses

decisional capacity3. The patient and/or proxy has the

capacity to make a decision free of coercion

Counseling should be completely informativebut non-directive

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.

Rabeneck, L., McCullough, L., Wray, N. (1997) Ethically justified, clinically comprehensive guidelines for percutaneous endoscopic gastrostomy tube placement. The Lancet,349, 496-98.

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Schwartz, D. B., DiTucci, A., Goldman, et al. (2014). Achieving patient-centered care in a case of a patient with advanced dementia. Nutr.Clin.Pract.;29, 556-558.

“The autonomy of the patient or surrogate decision maker shouldbe respected and considered above all other ethical principles.

Emphasis should be placed on functional status and quality of life.

Cultural, religious, social, and emotional sensitivity is essential inthe process.”


MacFie, J., McNaught, C. (2014). The ethics of artificial nutrition. UndernutritionandClinicalNutrition;43:2, 124-126.

“If a patient cannot eat, the ‘pros and cons’ of feeding should be discussed with the patient, with a clear explanation of possible outcomes and morbidity.”

“Health care personnel have the obligation to maximize potential benefits for their patients while at the same time minimizing potential harm for them.”

“Each decision has to be taken on an individual level. This means that they have to take into account the “overall benefit,” the possible results of the treatment in regard to the disease, the quality of life and the psychological and spiritual well-being.”

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“Our training has been directed towards theprolongation 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 valuesis vital if health care providers are to adequately

support these discussions.”

Craig.

speech-

Ashby, M., Stofell, B. (1995) Artificialhydration and alimentation at the end of life: a reply toJournalofMedicalEthics,21, 135-140.

Hanna, E., Joel, A. (2005).End-of-life decision making, quality of life, enteral feeding, and thelanguage pathologist. SwallowingandSwallowingDisorders,13-18.

Dias, L., Chabner, B. A., Lynch, T. J., Penson, R. T. (2003).Breaking bad news: a patient’s perspective. TheOncologist,8, 587-596.

delivering the information clearly,

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.”

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Baile, W. F., Buckman, R., Lenzi, R., Globber, G., Beale, E. A., Kudelka, A. P. (2000). SPIKES-a six-step protocol for delivering bad news: application to the patient with cancer. TheOncologist;5, 302-311.

Responding to patients’ emotional

reactionsInvolving the patientin decision-making

Dealing with the stress created by

patients’ expectations for cure

The involvement of multiple family

members

The dilemma of how to give hope when the

situation is bleak

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A study conducted in 2011, found that“caregivers report little conversation surrounding

feeding tube decisions

(more than half of caregivers report noconversation or one that lasts less than 15 minutes),

and at times, families feel pressure for their use.”


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Develop Develop a strategy in the form of a treatment plan with the input and cooperating of the patient

SupportSupport the patient by employing skills to reduce the emotional impact and isolation experienced by the recipient of bad news

Provide Provide intelligible information in accordance with thepatient’s needs and desires

Gather Gather information from the patient


Step #6 S – STRATEGYand SUMMARY

Step #5 E – Addressing the patient’s EMOTIONSwith empathic response

Step #4 K – Giving KNOWLEDGEand information to the patient

Step #3 I – Obtaining the patient’s INVITATION

Step #2 P – Assessing the patient’s PERCEPTION

Step #1 S - SETTINGUPthe Interview

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Arrange for some privacyInvolve significant others

Sit down

Make connection with the patientManage time constraints and interruptions


Baile, W. F., Buckman, R., Lenzi, R., Globber, G., Beale,E. A., Kudelka, A. P. (2000).SPIKES-a six-step protocol for delivering bad news: application to the patient with cancer. TheOncologist;5,302-311

“Beforeyoutell, ask”

Before discussing the medical findings, the clinician uses open-ended questions to create a reasonably accurate picture of how the patient perceives the medical situationBased on this information you can correct misinformation and tailor the bad news to what the patient understands

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Baile, W. F., Buckman, R., Lenzi, R., Globber, G., Beale, E. A., Kudelka, A. P. (2000). SPIKES-a six-step protocol for delivering bad news: application to the patient with cancer. TheOncologist;5, 302-311

“Beforeyoutell, ask”


Start at the level of comprehension and vocabulary of the patient

Try to use nontechnical words

Avoid excessive bluntness

Give information in small chunks and check periodically as to the patient’sunderstandingWhen the prognosis is poor, avoid using phrases such as “There is nothing ore we can do for you”

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Observe for any emotion on the part of the patient

Identify the emotion experienced by the patient by naming it to oneself

Identify the reason for the emotion

Let the patient know that you have connected the emotion with the reason for the emotion by making a connecting statement


Patients who have a clear plan for the future are less likely to feel anxiousand uncertainShare responsibility for decision-making

Check the patient’s understanding and misunderstanding of the discussion

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Cliniciansareoftenveryuncomfortablewhentheymustdiscuss

prognosisand treatmentoptionswiththepatient,iftheinformationis

unfavorable.

Uncertainty about the patient’sexpectations

Fear of destroying the patient’s hope

Fear of their own inadequacy in the face of uncontrollable disease Not feeling prepared to manage the

patient’s anticipated emotional reactions

Embarrassment at having previously painted too optimistic a picture forthe patient


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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!

American Speech Language Hearing Association. (n.d.). End-of-Life Issues in Speech-Language Pathology. Retrieved from https://www.asha.org/slp/clinical/endoflife/

Arora, G., Rockey, D., Gupta, S. (2013). High in-hospital mortality after percutaneous endoscopic gastrostomy: results of a nationwide population-based study. Clinical GastroenterologyandHepatology;11:11,1437-1444.

Ashby, M., Stofell, B. (1995) Artificial hydration and alimentation at the end of life: a reply to Craig. JournalofMedicalEthics,21, 135-140.


Bhattacharyya, N. (2014). The prevalence of dysphagia among adults in the united states. Otolaryngology‐HeadandNeckSurgery,151(5),765-769.

Bloker, Kati (2016). Palliative care expands in northern Colorado [Online image]. Retrieved from https://www.uchealth.org/today/palliative-care-expands-in-northern-colorado/

Brenoff, A. (2017). Efforts to prolong my husbands life cost him an easy death. Retrieved from https://www.huffpost.com/entry/end-of-life-care

Carey, T. S., et al. (2006). Expectations and outcomes of gastric feeding tubes. TheAmericanJournalofMedicine;119:6, 527.e11-527.e16.

Cegelka, A. (2014). American Geriatrics Society Feeding Tubes in Advanced Dementia Position Statement. TheAmericanGeriatrics Society.

Center for Hospice Care Southeast Connecticut (2018). Hospiceandpalliative care.Retrieved from https://www.hospicesect.org/hospice-and-palliative-careThe

Center to Advance Palliative Care (2019). Whatispalliativecare. Retrieved from https://getpalliativecare.org/whatis/

Colby, S. L., Ortman, J. M. (2014). The baby boom cohort in the united states: 2012 to 2060. U.S.CensusBureau,P25‐1141.

Daniel, K., Rhodes, R., Vital e, C., Shega, J. (2014). American geriatrics society feeding tubes in advanced dementia position statement. TheAmerican GeriatricsSociety.

Dias, L., Chabner, B. A., Lynch, T. J., Penson, R. T. (2003). Breaking bad news: a patient’s perspective. TheOncologist,8, 587-596.

Druml, C., et al. (2016). ESPEN guideline on ethical aspects of artificial nutrition and hydration. ClinicalNutrition; 35,545-556.

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. AlimentaryPharmacology&Therapeutics,27, 971-979.

Fine, R. (2006). Ethical Issues in Artificial Nutrition and Hydration Nutrition inClinicalPractice,21, 118-125.

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Geppert, C., Andrews, M., Druyan, M. (2010) Ethical issues in artificial nutrition and hydration: a review. JournalofParenteralandEnteralNutrition,34, 79-88.

Hanna, E., Joel, A. (2005). End-of-life decision making, quality of life, enteral feeding, and the speech-language pathologist. SwallowingandSwallowingDisorders, 13-18.

MacFie, J., McNaught, C. (2014). The ethics of artificial nutrition. UndernutritionandClinicalNutrition;43:2,124-126.

Martin, E., Mcdonald, J. (2014) What is MOST? RhodeIslandMedicalJournal, 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.

Mel Wilcox, M. (2017). Gastrostomy tubes and quality of life: is the glass half empty or half full?. ClinicalGastroenterologyandHepatology;15, 998-999.

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. JournaloftheAmerican GeriatricsSociety,48, 391-397.

O’Reilly, A., Walshe, M. (2015). Perspectives on the role of the speech and language therapist in palliative care: an international survey. Palliative Medicine. 29(8): 756-761.

Orrevall, Y. (2015). Nutritional support at the end of life. Nutrition;31, 615-616.

Ortman, J. M., Velkoff, V. A. (2014). An aging nation: the older population in the United Stated. U.S.CensusBureau,P25‐1140.

Rabeneck, L., McCullough, L., Wray, N. (1997) Ethically justified, clinically comprehensive guidelines for percutaneous endoscopic gastrostomy tube placement. TheLancet,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

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Slomka, J. (2003). Withholding nutrition at the end of life: clinical and ethical issues. ClevelandClinic Journal ofMedicine, 70(6), 548-552.

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