The Role of SpeechLanguage Pathology Services in Terminal Care

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The Role of Speech-Language Pathology Services in
Terminal Care

• Joseph B. LeJeune
• EnduraCare Therapy Management
• Cheryl Gunter
• West Chester University
• A paper presented at the annual convention of the
  American Speech-Language-Hearing Association
  November, 17,2007

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GOALS

• To provide an overview of the history of hospice
  in the United States
• To present information on the role of the
  Speech-Language Pathologist in patients who
  are terminal
• To identify the scope of disorders encountered
  with terminally ill patients
• To identify assessment and treatment strategies
  that can be utilized with terminally ill patients

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BUT FIRST

• What Is Does Our Code of Ethics Say???
• American Speech-Language-Hearing Association.
  Code of Ethics (revised). ASHA Supplement, 23,
  pp. 13-15.

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• Individuals Shall Provide All Services
  Competently.
• Individuals Shall Fully Inform The Persons They
  Serve Of The Nature
• Individuals Shall Honor Their Responsibility To
  The Public By Promoting Public Understanding Of
  the Professions, By Supporting The Development of
  Services Designed To fulfill The unmet Needs of
  The Public

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A HISTORY OF TERMINAL CARE

• In Pre-History 500 AD Life Threatening
  Illnesses Resulted in Community Response Because
  A Death Posed A Direct Threat To The Entire
  Community
• With The Spread Of Christianity, Monasteries
  Started To take In The Sick
• In The Sixth And Seventh Century Women Started
  Working In These Monasteries as Nurses

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• Nunneries Begin To Assist Monasteries In Caring
  For the Ill
• From The Time of the Crusades To The End Of The
  Seventeenth Century Travelers Would Seek Refuge
  In These Monasteries And Nunneries Where They
  Were Cared For by Monks, Nuns, and Lay Women

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• The Term Hospice Began To Be Used To Describe
  Places That Would Care For Travelers Who Were Ill
• The Word Hospice Comes From The Latin Word
  Hospes Meaning To Host A Guest Or Stranger
• As Hospitals Developed Ill People Began To Be
  Treated There But Disease Was So Prevalent That
  Families Often Kept Loved Ones At Home

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• In 1842 The Term Hospice Was First Applied To
  The Care Of Dying Patients in France
• In 1879 The Term Was Introduced By The Sisters Of
  Charity in Ireland
• In 1905 St. Josephs Hospice Was Opened In London

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• In 1967 Dame Cicely Saunders Started St.
  Christophers Hospice With A Donation Of A
  Patient Who She Cared For With Inoperable
  Cancer. The Goal Was To Open A Place Better
  Suited For Pain Control And Preparing People For
  Death
• In 1969 Elisabeth Kubler-Ross Wrote On Death And
  Dying Taking Death Into Public Awareness.

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• In 1969 Elisabeth Kubler-Ross Wrote On Death And
  Dying Taking Death Into Public Awareness. Dr.
  Kubler-Ross Argued That Patients Should Be Able
  To Participate In Decisions Regarding Their
  Treatment

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CURRENT TYPES OF HOSPICE PROGRAMS
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• Limited Provide Nonskilled Services In The
  Home (e.g. Housekeeping)
• General Programs That Provide Skilled
  services (e.g. Nursing And Other Health Care
  Professionals)

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FOUR TYPES OF GENERAL HOSPICE CARE

• Routine Home Care (Less Than 8 Hours Of Care Per
  Day)
• Continuous Home Care (For Patients In Crisis Who
  Require Short Periods Of Over 8 Hours Of Care Per
  Day)
• Inpatient Respite Care (Up To 5 Days Of Care To
  Provide Families A Break)
• General Inpatient Care (Hospital, SNF, Or
  Inpatient Hospice)

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THE CURRENT HOSPICE TEAM

• Physicians
• Nursing
• Social Services
• Rehabilitation Services
• Dietary
• Psychologist

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CURRENT TRENDS

• In 2005 1.2 Million Americans Received Hospice
  Care From 1 of 4,000 Hospice Programs (In 2000,
  That Figure was 621,100)
• Most Likely Diagnosis Will Be Cancer,
  Cerebrovascular Disease, COPD, Or Dementia
• 80 Of The Patients Are Over 65 Years Of Age

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• Average Length Of Time On Hospice is 59 Days
• 20 Of Hospice Programs Provide Pediatric
  Services
• 79 Of Hospice Patients Are On Medicare Though
  This Accounts For Only 2.5 Of The Total Medicare
  Dollars Spent

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• In 2005 The Average Cost Per Day In A Hospital
  Was 4,787 The Cost For Hospice Was 131

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CRITERIA FOR HOSPICE

• Progressive Disease With Increasing Symptoms
  And/Or Worsening Lab Values
• Recurrent Pneumonia (2 Or More Episodes In 3
  Months)
• Weight Loss Of 5 Or More In The Last 3 Months
  Due To A Progressive Disease Or Dysphagia
• Presence Of Co-morbidities That Contribute To A
  Life Expectancy Of Six Months

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• However, The Certification Of
• Terminal Illness Is Based On The
• Physicians Clinical Judgment
• Department of Health and Human Services, Health
  Care Financing Administration, January, 2001

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• Many Of The Patients We Will Serve With
• A Terminal Illness Will
• Not Be A Patient Of A
• Hospice Program

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• In 2005 Approximately
• One-Third Of All deaths
• In The US Were
• Under The Care
• Of A Hospice Program
• National Center for Health Statistics,

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CAUSES OF DEATH IN THE US

• Heart Disease
• Cancer
• Stroke
• Chronic Lower Respiratory Disease
• Accidents

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• Diabetes
• Alzheimers Disease
• Influenza/Pneumonia
• Kidney Disease
• Septicemia
• National Center for Health Statistics, 2004

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THE ROLE OF SPEECH-LANGUAGE PATHOLOGISTS

• Our Role Is Based On The Framework
• Of The World Health Organizations Components Of
  Palliative Care
• Pollens, R. J. Palliative Medicine, 2004. October

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• To Provide Consultation To Patients, Families,
  And Caregivers With Regard To Communication,
  Cognition, and Swallowing Function
• To Develop Strategies In The Area of
  Communication Skills In Order To Support The
  Patients Role In Decision Making And
  Communication With Family And The Hospice Team

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• To Assist In Optimizing Function Related To
  Dysphagia Symptoms In Order To Improve Comfort
  And Patient Satisfaction With Regards To Feeding
• To Communicate With The Hospice Team And Provide
  Input On The Overall Care Of The Patient

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DYSPHAGIAIMPORTANT CONSIDERATIONS

• The Assessment Will Usually Be Bedside
• The Treatment Plan Will Have To Be Modified As
  the Patients Condition Changes
• The Treatment Plan Will Need To Differentiate
  Tolerance Between Solids And Liquids But Also The
  Recommended Amount For Each Consistency
• The Goal Of Intervention Will Be Education And
  Comfort

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AND THE MOST IMPORTANT CONSIDERATION

• The Goal Of Intervention Will Not Be
• to Reduce The Risk Of Aspiration
• But Rather To Insure Comfort And Support Patient
  And Family Wishes

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• ASSESSMENT OF SWALLOWING

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PRIOR TO THE EVALUATION

• Current And Pre-Morbid Level of Function
• Medical Status
• Nutrition and Hydration Status
• Patient/Family Wishes

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CURRENT/PREMORBID STATUS

• Communication Status Including The Ability To
  Follow Commands And Communicate Basic Needs
• Cognitive Status Including Their Ability To Make
  Decisions
• Ability To Participate In Their Care

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MEDICAL STATUS

• Diagnosis Including Co-Morbidities
• Prognosis
• Medical Management Options
• Respiratory Status
• Current Method Of Nutrition/Hydration
• Pain Management

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NUTRITION AND HYDRATION STATUS

• Consistency of Foods/Liquids
• Amount And Type Of Intake
• Time and Frequency of Intake
• Tolerance Of Oral Intake
• Artificial Hydration/Nutrition

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PATIENT/FAMILY WISHES

• Documentation Of A Living Will Or Other Form Of
  Advanced Directives
• Documentation Of Oral/Non-Oral Feeding
  Alternatives

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BEDSIDE EVALUATIONIMPORTANT CONSIDERATIONS

• Current Symptoms Of Dysphagia
• Current Level Of Diet Including Non-Oral Intake
• Level And Times Of Alertness
• Ability To Communicate Especially Requests For
  Oral Intake

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• Medical Conditions That May Influence Tolerance
  For Oral Intake
• Ability To Be Positioned For Safest Oral Intake
  And Then Repositioned For Comfort
• Documentation Of Response To Bathing Or
  Incontinent Episode
• Patient/Family Preference For Oral Intake

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DURING THE EVALUATION

• Review Any Documentation Of Best Time For The
  Assessment
• Assess Not Only Consistencies But Amount Of
  Consumption For Each
• Determine Any Preferences For Food/Liquids And
  Potential Strategies To Compensate For Swallowing
  Deficits But Also For Pain And Positioning Issues

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DIAGNOSTIC CONSIDERATIONS

• Document Type Of Impairment
• Determine The Consistencies And Amount The
  Patient Is Able To Consume And Degree Of Safety
  With Each
• Determine The Best Time For Tolerance With Each
  Episode Of Oral Intake
• Recognize That Nonskilled Caregivers May Be The
  Individuals Who Will Be Providing The Majority Of
  The Oral Intake

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TREATMENTIMPORTANT CONSIDERATIONS

• Always Discuss Treatment Recommendations With The
  Health Care Team So That The Team Can Speak As
  One
• Any Treatment Will Be Short Term
• The Goal Of Treatment Will Be To Support The
  Wishes Of The Patient And Family
• The Mechanism to Provide Education For The
  Patient, Family, and Caretakers

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• The Focus Of Treatment Will Be To Provide
  Education On Compensatory Strategies With The
  Types Of Oral Intake That Is The Preference Of
  The Patient And Family In Agreement With The
  Documented Legal Agreements In Line With
  Cultural Considerations and Will Be A Component
  Of The Emphasis On Quality Of Life Of The Patient

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SOME TREATMENT SUGGESTIONS

• Ice Chips Can Reduce The Sensation Of Thirst
• Follow The Guidelines That Are Considered Best
  Practice For Safety (e.g. upright for meals,
  Small Amounts At One Time, Clear Oral Cavity
  After Meal, Etc)
• Educate The Family On The Reduced Sensation Of
  Hunger

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ABOUT THE LOSS OF HUNGER AND THIRST

• A Decline In Mental Status Can Negatively Impact
  The Patients Interest In Food
• Terminally Ill Patients Spent An Increasing
  Amount Of Time Asleep
• Medications May Increase Nausea Resulting In A
  Decreased Desire For Food/Drink
• Decreased Body Fluids Can Make Respiration Easier

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• Decreased In Liquid Intake Leads To A Reduction
  In Pulmonary Secretions Which Can Eliminate The
  Need For Suctioning
• Decrease In GI Fluids Can Reduce Nausea And
  Vomiting
• Decrease In Intake Will Decrease Urine Output
  Eliminating The Need For Move The Patient For
  Either A Bedpan Or Urinal
• Frederick, M. AAHPM Bulletin Fall, 2002

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COMMENTS ON ARTIFICIAL NUTRITION AND HYDRATION

• Feeding Tubes Will Not Change The Outcome It
  Will Only Prolong The Inevitable
• The Discomfort Of The Feeding Tube Can Lead to
  The Patient Pulling The Tube Out And Result In
  Negative Consequences
• Artificial Hydration Can Lead to Fluid Overload
  Potentially Resulting To Peripheral Edema and
  Pulmonary Congestion

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• COMPLICATIONS
• OF
• ARTIFICIAL HYDRATION
• AND
• NUTRITION

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NASOGRASTRIC TUBE

• Pain With Insertion And Removal
• Esophagitis
• Esophageal Stricture
• Diarrhea
• Nasopharyngitis
• Regurgitation

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GASTROSTOMY/JEJUNOSTOMY TUBE

• Death From Procedure
• Gastric Perforation
• Wound Infection
• Diarrhea
• Self-Extubation
• Gastric Distention
• Stomal Leak
• Regurgitation

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PERIPHERAL VEIN CATHERIATION

• Pain
• Short Duration Requiring Re-Insertion
• Infection
• Phlebitis

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CENTRAL VEIN CATHERIZATION

• Pain
• Pneumothorax
• Arterial Laceration
• Catheter Fragment Embolus
• Air Embolus
• Catheter-Related Sepsis

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AND IN CONCLUSION

• C.A.R.E.

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• Common Sense
• All About The Patient
• Respect The Family And Care Givers
• Everyone Needs To Speak With One Voice

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• COMMUNICATION
• AND
• COGNITIVE
• DEFICITS

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TYPES OF DEFICITS

• Motor Speech Disorders
• Memory Impairment
• Reduced Judgment/Problem Solving Skills
• Disorders of Comprehension
• Impairment In Word Retrieval Skills
• Impairment In Breath Support And Ability To
  Obtain Sufficient Breath Support For Speech

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WHAT DO THEY WANT TO COMMUNICATE ABOUT?

• Pain/Discomfort
• Emotions
• Symptoms
• Family/Home
• Physical Care Needs/Positioning
• Environmental

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ASSESSMENT OF COGNTIVE AND COMMUNICATION SKILLS

• The Focus Will Be on Function
• Emphasis Will Be on How The Patient Can
  Communicate With Family And Caregivers Regarding
  Their Condition, Needs And Their Desires
• The Assessment Needs To Identify The Compensatory
  Strategies That Will Be Utilized

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THAT INCLUDES

• Ability To Respond To Yes/No Questions Through
  Verbal Responses, Head Nod, Or Other Gestural
  Modality
• Ability To Write Words/Short Phrases
• Ability To Communicate Ideas Through Pictures,
  Words, Or Letters

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THAT SHOULD ALSO INCLUDE

• The Ability Of The Family And Caregivers To
  Understand What The Patient Is Attempting To
  Communicate
• The Recognition That The Patients Ability To
  Communicate And The Way In Which He/She
  Communicates Will Change As Their Medical
  Condition Changes AND So Will The Ability Of The
  Family And Care Givers

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TREATMENT STRATEGIES

• Identify The Most Practical Mode Of Communication
  For The Current Time And Anticipate The Most
  Reasonable Mode Of Communication For The Future
• Communication Will Be Facilitated If The Family
  And Care Givers Understand The Types Of Deficits
  Exhibited, Their Cause, And Compensatory
  Strategies

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• Treatment Should Focus On Helping The Family And
  Care Givers Understand That The Desire Of The
  Patient To Communicate Will Be Limited And Will
  Rapidly Be Centered On Comfort
• The Family And Care Givers Will Need To
  Understand That They Will Need To Be The Topic
  Generators

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• Training Of Family And Care Givers Should Involve
  Training On Adapting Questions To Yield Yes/No
  Responses And To Anticipate Needs And Responses
• Training Should Also Focus On Recognizing That
  They May Not Always Understand What Is Being
  Communicated

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• Reminiscing Will Facilitate Positive
  Communication Interactions
• Help Family And Care Givers Understand Non-Verbal
  Cues In Order To Anticipate Commumication

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AND FINALLY

• C.A.R.E.

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• Communication Comes In All Forms
• Anticipate Comminication Needs
• Reminiscing Can Be A Positive Communication
• Expect A Decline In Their Abilities

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SOME FINAL THOUGHTS ON OUR ROLE

• To Assist The Patient In Making Decision On How
  They Wish To Die
• This Will Be A Time Of Crisis For Everyone And
  Not Everyone Reacts Rationally In Time Of A
  Crisis
• A Component Of Your Treatment Should Focus On The
  Team Caring For The Patient And The Team Includes
  The Family And Care Givers

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AND LASTLY

• In Order For You To Be
• An Effective Clinician You Will Need
• To Face Your Own Mortality

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SOME RESOURCES

• The National Hospice And Palliative Care
  Organization
• www.nhpco.org
• The Hospice Association Of America
• www.nahc.org/HAA/home.html
• The Hospice Education Institute
• www.hospiceworld.org