3/17/2016€¦ · 3/17/2016 3 why do hospice & palliative care patients need rehabilitation? 13...

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Nancy B. Swigert, M.A., CCC-SLP, BCS-S

Baptist Health Lexington

Nancy B. Swigert, M.A., CCC-SLP, BCS-S1

Ethics: Managing Dysphagia in

Patients in Palliative and Hospice Care

Disclosures


Nancy B. Swigert discloses:

Financial:

Received an honorarium for this presentation

Receives royalties from LinguiSystems(ProEd) for

The Source for Dysphagia

Non-Financial:

Have presented on this topic before

Objectives


Discuss ethical principles related to dysphagia,

palliative care and hospice

Describe principles of comfort measures

Need for palliative care


Strong correlation between aging and chronic

illness

Need to provide symptom and disease

management for hospitalized patients not facing

death within prescribed time

Not eligible for hospice services

o Ross, Mathis & Brockopp (2008)

Cost of managing chronic illness


Management of chronic illness that is not life-

threatening accounts for approximately 75% of

available health care resources in U.S.

Institute of Medicine (2001)

Rice & Fineman (2004)

Palliative or Hospice?


Traditionally palliative care and hospice care is

provided to individuals diagnosed as terminally ill

More recently, palliative services are available to

patients with chronic conditions who do not meet

qualifications for hospice

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Needs of patients with chronic

conditions


Management of symptoms:

Pain

Nausea

Fatigue

Psychosocial issues

Spiritual issues

The development of CBH* Palliative

Care Program (* Now called Baptist Health Lexington)


Goals of the program to develop a system of care

that would address:

Unique needs of patients with symptomatic illness

regardless of diagnosis or place on the illness

trajectory

Patients’ needs in context of social system

Holistic care including curative measures and

management of symptoms

Design of CBH team (1998)


Worked closely with Hospice

Consult team: Nurse liaison, chaplain, physician,

and social worker

(salary cost for nurse and physician shared by CBH

and Hospice)

Measuring outcomes: Primary

symptoms/days to control


0

0.5

1

1.5

2

2.5

3

3.5

4

4.5

5

2001 2002 2003 2004 2005 2006

Pain

Goals of Care

Nausea

Dyspnea

Terminal Symptoms

Measuring outcomes: Staff

satisfaction


Staff on this unit are among top 20% of the

hospital departments most satisfied with the

hospital as a place to work

Annual nurse turnover rate dropped from 53% to

15%

What is the role of rehabilitation in

hospice and palliative care?


With disease progression, patients have:

high levels of functional loss

Dependency for activities of daily living

Mobility dysfunction

Cheville (2009)

Santiago-Palma, Payne (2001)

Information from: Rehabilitation of the Hospice and

Palliative Care Patient. Javier, N.S.C. & Montagnini, M.L.

(2011). Journal of Palliative Medicine Vol. 14; No. 5. 638-

648

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Why do hospice & palliative care

patients need rehabilitation?


Multiple factors contribute:

De-conditioning

Fatigue

Complications from therapies

Under-nutrition

Neurologic and musculoskeletal problems

Pain

Bowel and bladder dysfunction

Thrombo-embolic disease

Depression

Co-existing co-morbidities

Multiple sources

Do hospice & palliative care patients

want rehabilitation?


Most hospice patients express desire to remain

physically independent during the course of their

disease

Wallston, Burger, Smith & Baugher 1988

Ebel, Langer (1993)

Mayer (1975)

Benefits of palliative rehabilitation


Improved quality of life

Improved mobility

Better control of pain and other symptoms

Improved mood

Gains in motor and cognitive function

Shorter lengths of stay Various sources

Role of physical therapy


Physical modalities for pain control

Provision of adaptive and assistive equipment

Environmental modification

Education on energy conservation

Exercise

Role of Occupational Therapy


ADLs

Work Tasks

Self-esteem

Role-related tasks

Recreation

Use of adaptive equipment

Role of the SLP (Pollens 2004)


Provide consultation to patients, families and the

care team re:

Communication

Cognition

Swallowing

Develop strategies in area of communication

skills to support the patient’s role in decision

making, maintain social closeness and assist

patient in achieving fulfillment of end-of-life goals

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Role of the SLP


To assist in optimizing function related to

dysphagia symptoms to improve patient comfort

and satisfaction

Promote positive feeding interactions with family

members

Communicate with the care team related to

overall care of the patient

Differences in palliative and hospice


How does the SLP’s approach differ in palliative

vs. hospice

Use of instrumentals

Facilitations vs compensations

How conservative we are with recommendations

Let’s look at a case example

Clinical and Instrumental Results


Clinical exam reveals patient coughing on all liquids

from cup

Does not cough with small amounts liquid from spooon

Appears able to handle fork-mashed foods but c/o feels

like food is sticking

VFSS reveals:

Aspiration of thin liquids if taken in greater than

teaspoon amounts

Takes nectar thick in large sips safely from cup or straw

Significant residue in valleculae with all solids due to

reduced tongue base and pharyngeal wall squeeze

Different recommendations

Palliative Hospice


Proceed to instrumental

Based on instrumental, allow thin liquids in small amounts on teaspoon

Use naturally nectar thick liquids during meals

Multiple swallows

Initiate exercises for tongue base/pharyngeal wall

Likely make

recommendations

based on clinical

exam:

Soft foods

Second dry swallow

Thin liquids in small

sips

What resources can the SLP use

when working with patients and

families?


ASHA Code of Ethics

Principles of Biomedical Ethics

Case law

ASHA Code of Ethics


Principle of Ethics I: Individuals shall honor their

responsibility to hold paramount the welfare of

persons they serve professionally

Rule D: Individuals shall fully inform the persons

they serve of the nature and possible effects of

services rendered and products dispensed

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ASHA Code of Ethics


Principle of Ethics I

Rule F: Individuals shall not guarantee the results of

any treatment or procedure, directly or by

implication; however, they may make a reasonable

statement of prognosis

Principles of Biomedical Ethics


Autonomy

Non-maleficence

Beneficence

Justice

Autonomy


Respect for Autonomy

Patients have right to make independent choices

about their care

Free from controlling influences and have

capacity to make independent decisions

If the patient can’t make independent choice,

involve “surrogate decision makers”

Non-maleficence


Above all, do no harm

Do not cause harm or impose the risk of harm

Closely tied to the principle of beneficence

Beneficence


Provide positive benefits to patients

Action done for the benefit of others

Implies an obligation to help others

Paternalism sometimes necessary in order to do

good

Paternalism is in conflict with autonomy

Justice


Fairness

Equal access to health care

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Patient rights


Right to predetermine medical treatment limits

Right to discontinue or refuse treatment

Right to refuse to follow swallowing safety

recommendations

SLP ethical responsibilities


Determination of efficacious treatment approaches

Responsibility to educate/explain potential risks and outcomes

Responsibility to accept patient/family decisions

Responsibility to advocate for treatment or no treatment

Responsibility to continue or discontinue treatment

History of PEG (Wall Street Journal December 8,

2005)


On June 12, 1979, two physicians inserted the

first modern feeding-and-hydration tube to save a

sick infant

Gauderer & Ponsky at University Hospitals of

Cleveland

One dubbed it the “percutaneous endoscopic

gastrostomy” nozzle

Before this, a gastrostomy tube required major

surgery

History of PEG


Ponsky adapted it in the early 1980s for use with

adults

Used with stroke patients initially

Use quickly spread to patients with terminal

cancer and elderly with dementia

Device generally low cost ($200-$600)

Short recovery time meant patients could be

discharged quickly

Increase in PEG use


Embraced by nursing homes b/c it was a quick

way to feed patients who couldn’t feed

themselves

Is it easier for the physician to order a PEG

placed than to have a difficult conversation with

the family?

PEGs in nursing homes


In 1999, nearly 34% of patients with severe

dementia who were residents of U.S. nursing

homes were living with PEG

Mitchell, DL, Tetroe, JM. Survival after percutaneous

endoscopic gastrostomy placement. J. Gerontol A Biol Sci

Med 2000; S5A:M735-M739

A recent five-state survey found that 11% of

persons dying with dementia had a feeding tube

Teno, Mitchell, Kuo et al (2011)

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PEGs and economics


Medicare considers PEGs to be skilled nursing

Hand feeding is not skilled

Nursing homes get more money for patients with

PEG and they also do not have the cost of paying

someone to feed

CNA making $8/hr can hand-feed perhaps 2

patients in an hour

Can hook up 10 feeding tubes in same amount of

time

PEGs and economics


Tube-fed residents in nursing homes generate a

higher daily reimbursement rate from Medicaid,

but require less expensive care

Mitchell, Buchanan, Littlehale & Hamel 2003

Are PEGS cost-driven?


Nursing home industry reports that patients with

feeding tubes result in increased cost of care

Case law related to nutrition and

hydration


Karen Ann Quinlan

case – 1976

April 15, 1975 –July

11, 1985

A significant outcome

of her case was the

development of formal

ethics committees in

hospitals, nursing

homes and hospices

Cruzan- case law


Justices determined that the choice of a person in a persistent vegetative state to decline life support is a protected liberty interest under the 14th amendment, and that this right is exercisable by a lawful surrogate

Supreme Court determined that death after surrogate refusal of AHN is neither euthanasia nor assisted suicide, but simply the natural consequence of the exercise of the patient’s right to refuse unwanted treatment

Patient Self Determination Act


Took effect December 1, 1991

Direct result of Cruzan case

Requires all hospitals and nursing homes

receiving federal Medicare or Medicaid funding to

inform patients of their rights to provide advance

directives like living wills, healthcare surrogates,

and durable power of attorney.

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Advance directive


Legal, written statement of medical choices or the

way the patient wants medical choices to be

determined

Written prior to need for such decisions

Goes into effect when patient can no longer

decide for him/herself or can no longer tell others

of decision

Cannot be required to have advance directive

Living wills may include:


Directions that life-prolonging treatment not be

provided, or once started, that such treatment be

stopped

Directions that food (nutrition) and water (hydration)

not be provided through artificial means like tubes,

or once started, that they be stopped

A choice of one or more persons to act as your

surrogate and make decisions for you

Healthcare surrogate


Person you appoint in your living will or in another

written document to make medical decisions for

you if you are not able to speak for yourself

Durable power of attorney


Advance directive that lets you name someone

(attorney-in-fact) to make medical decisions for

you if you’re unable to speak for yourself

Similar to healthcare surrogate, but may also give

attorney-in-fact power to make decisions about

personal and financial affairs

Parental rightsEthics in Medicine- University of Washington School of Medicine

Parents have the responsibility and authority

to make medical decisions on behalf of their

children. This includes the right to refuse or

discontinue treatments, even those that may

be life-sustaining.

However, parental decision making should be

guided by the best interests of the child.

Decisions that are clearly not in a child's best

interest can and should be challenged.

What is the basis for granting medical

decision making authority to parents?

In most cases, a child's parents are the persons who care the most about their child and know the most about him. As a result, parents are expected to make the best medical decisions for their children.

Furthermore, since many medical decisions will also affect the child's family, parents can factor family issues and values into medical decisions about their children.

http://depts.washington.edu/bioethx/topics/termlife.html

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When can parental authority to make medical

decisions for their children be challenged?

Medical caretakers have an ethical and legal

duty to advocate for the best interests of the

child when parental decisions are potentially

dangerous to the child's health, imprudent,

neglectful, or abusive.

When satisfactory resolution cannot be attained

through respectful discussion and ethics

consultation, seeking a court order for

appropriate care might be necessary.

What if parents are unavailable and a child needs

medical treatment?

When parents are not available to make

decisions about a child's treatment, medical

caretakers may provide treatment necessary to

prevent harm to the child's health.

Should children be involved in medical decisions

even though their parents have final authority to

make those decisions?

Children with the developmental ability to

understand what is happening to them should be

allowed to participate in discussions about their

care. As children develop the capacity to make

decisions for themselves, they should be given a

voice in medical decisions.

Case law: Terry Schiavo


Schiavo case raised the question: should AHN be

considered medical therapy that lawful surrogate

can refuse based on preferences the patient had

expressed orally while competent

Arguments for distinguishing artificial nutrition and

hydration from other life-sustaining medical treatments


“Basic sustenance vs. medical procedure”

NG tubes “minimally invasive”

“Causation - dying of starvation rather than underlying disease process”

“Allowing physicians to withhold or stop AHN is step on slippery slope to euthanasia for devalued human lives”

Why those arguments don’t work


Artificial nutrition and hydration = medical procedure

Virtually every reported appellate case has rejected

these objections

Nutrition and hydration may be forgone according to

same standards as any other medical treatment

AMA classifies artificial nutrition and hydration as

“life-prolonging medical treatment”

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Medicare and Medicaid requirements


For long-term care facilities - recognize that

competent residents have unqualified right to

refuse treatment, including artificial nutrition and

hydration when state law permits

Cause of death is patient’s inability to eat,

brought about by disease or injury, and cannot be

characterized as starvation

Artificial nutrition and hydration carries own

set of risks, discomforts and drawbacks


Courts view PEG as highly intrusive

NG can contribute to progression of disease

Persistent vegetative state -- continuing artificial

nutrition and hydration denies dignity

Dehydration and starvation


“It may not result in more pain than the

termination of any other medical treatment”

In conscious patients, if adequate analgesic

medication is provided, death should be painless

In persistent vegetative state, will certainly be

painless

DeGrella Case


Mother of patient in vegetative state as result of

severe beating brought suit against guardian,

seeking court authorization to order medical

personnel to discontinue nutrition and hydration by

tube

Supreme Court upheld that mother could order life-

sustaining treatments d/c

irreversible

patient’s prior statement

State statutes and appellate cases Sieger,

et al 2002


Twenty-seven states (39%) have one or more explicit statutory provisions delineating a separate and more stringent standard for ANH refusal with a higher evidentiary standard Requirement for specific preauthorization

Qualifying medical conditions

Second medical opinion

Judicial review, etc

Professional malpractice

“Delivery of patient care that falls below the

standard expected of ordinary reasonable

practitioners of the same profession acting under

the same or similar circumstances” Scott, 1994, p.

20

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Professional malpractice

Now more broadly defined to include:

Potential for liability if there is a breach of patient-

clinician contractual promise

Liability for defective treatment-related products that

cause harm to the patient

Liability for abnormally dangerous treatment

activities

Criteria that must be met to be found

guilty of malpractice (Ohliger, 1996)

Existence of duty of care

Agreement by the clinician to enter a patient/client

relationship

Not bound to provide care to every patient, but once

patient is accepted, clinician has duty to protect the

patient from foreseeable harm

Legal implications

Standard of care

healthcare providers have duty to exercise “the

reasonable degree of skill, knowledge, and care

ordinarily possessed and exercised by members of

the same profession under the same or similar

circumstances”

May be compared to peers not in the same

community

Legal implications

Foreseeable harm

If reasonable clinician could not have foreseen that

harm would have resulted from actions, no liability

for negligence

e.g. patient placed on pureed + thick liquids secondary to

aspiration; SLP gives patient glass of water

probably considered below standard of care, and found

liable for negligence

Legal implications

Causation

Clinician’s actions must be the “cause in fact” of the

injury

have to show that “but for” the health care provider’s

actions, the injury would not have occurred

Proximate cause

was there an intervening act not reasonable foreseen *

Legal implications

Proximate cause (e.g. Huckabee & Pelletier, 1999)

SLP instructs nursing assistant to supervise

patient and NOT give water

Assistant leaves patient unattended and

unexpectedly, family member visits and gives

water

Would this be considered foreseeable?

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Informed consent to treat

Providing patient with sufficient information about

proposed treatment and its reasonable

alternatives to allow patient to make a knowing,

intelligent, and unequivocal decision regarding

whether to accept or reject the proposed

treatment (Scott, 1994, p. 219)

Informed consent to treat should

include:

Description of

diagnosis and

evaluation, proposed

treatment, presented

to patient in terms

they can understand

Discussion of

“material” risks

Reasonable

alternatives

Expected benefits and

prognosis

Solicit questions from

the patient about

proposed treatment

plan

Risk of aspiration with tubes


Aspiration pneumonia most common cause of

death after PEG placement

Feeding tubes (NG & PEG) actually increase the

risk of aspiration pneumonia

GERD?

Oropharyngeal colonization?

Plonk, 2005

Aspiration and tubes


Non-randomized prospective study

Orally fed patients with dysphagia had fewer major

aspiration events than those tube fed

Non-randomized, retrospective observation of

SNF residents found no survival advantage with

tube feeding

Reported in Finucane et al 1999

Burdens and complications of PEG


Pain at site of tube

Diarrhea

Nausea

Hematoma

Fistula

Peritonitis

Abdominal abscess

Loss of dignity

Plonk 2005

Poor prognostic factors for PEG

placement (Plonk)


Older than 75 years

Male

Diabetes Mellitus

COPD

Advanced cancer

Previous aspiration

NPO x 7 days

UTI

Low BMI

Hospitalized

Bedridden

Pressure sores

Confusion

Cardiac disease

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Number of patients who can’t eat will

increase


Council on Bioethics (2005) warned that number

of patients with Alzheimer’s, estimated then at 4.5

million, will triple in the next 45 years

How do families make decisions?


Families of individuals with dementia engage in

choices about feeding more often than any other

treatment, but report quality of decision-making is

poor Givens et al 2009

Decision aids


Provide patients and families with structured

information about a clinical choice

Used to enhance clinical decision-making

Present balanced, evidence-based information

about risks, benefits, and alternatives to a

particular decision

Elwyn, O’Connor, Stacey, et al 2006

A Decision Aid for Long-Term Tube Feeding

in Cognitively Impaired Older Adults (Mitchell,

Tetroe & O’Connor 2001)


Substitute decision-makers for 15 cognitively

impaired inpatients being considered for

placement of PEG

Questionnaires used to compare the decision-

makers’ knowledge, decisional conflict and

predisposition regarding feeding tube placement

before and after exposure to the decision aid

A Decision Aid for Long-Term Tube Feeding

in Cognitively Impaired Older Adults (Mitchell,

Tetroe & O’Connor 2001)


Results: Increased their knowledge and

decreased their decisional conflict regarding long-

term tube feeding after using the decision aid

Impact of the decision aid on predisposition

toward the intervention was greatest for those

who were unsure of their preferences at baseline

Improving Decision-Making for Feeding

Options in Advanced Dementia (Hanson et al 2011)


Randomized, Controlled Trial

24 nursing homes in NC

Residents with advanced dementia and feeding

problems and their surrogates

Surrogates received audio or print decision aid on

feeding options

Controls received usual care

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Options in Advanced Dementia (Hanson et al

2011)


Primary outcome was Decisional Conflict Scale

measured at three months

Other main outcomes: surrogate knowledge,

frequency of communication with providers and

feeding treatment use



2011)


Surrogates in both groups experienced the same

level of decisional conflict at time of study

enrollment

After three months, surrogates who received the

decision aid had significantly lower scores on

each subscale



2011)


After review of the decision-aid, intervention

surrogates had higher mean knowledge scores

than controls and expected fewer benefits from

the tube feeding

Over the next 3 months, surrogates in

intervention group were more likely than controls

to have discussed feeding treatments with MD,

APRN,PA



2011)


Decisional regret was low and satisfaction high at

3 months for both groups

After 3 months, residents in the intervention

group:

had greater use of some assisted oral feeding

techniques than those in the control group

Were more likely to receive a dysphagia diet

Trend towards greater use of specialized assistance

for feeding

Mortality similar for both groups



2011)


At 3 months, explicit choices for or against tube

feeding were rare, so performed chart review at 9

months:

3 controls vs. 1 intervention resident had feeding

tube

2 control vs. 4 intervention residents had orders not

to tube feed

Weight loss less common at 9 months for

intervention group

Decision aid


Making Choices: Long Term Feeding Tube

Placement in Elderly Patients

Mitchell, Tetroe, O’Connor, Rostom, Villeneuve, Hall

(2001; 2008)

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Resources for professionals


Several organizations have developed position

statements on ANH

American Academy of Hospice and Palliative

Medicine Statement on Artificial Nutrition and

Hydration Near the End of Life

American Dietetic Association: Ethical and Legal

Issues in Nutrition, Hydration, and Feeding

AMA Statement on End-of-Life Care

American Society for Parenteral and Enteral

Nutrition Statement on Ethics of Withholding and/or

Withdrawing Nutrition Support Therapy

Have the medical and legal communities

reached consensus?


Some religious groups have actively challenged

living wills that call for patients to die without

having a tube placed

Agudath Israel case re: Lee Kahan

February 2005 New York State Supreme Court

Judge ordered patient’s daughter to keep her

mother alive as long as medically possible

Note: living will was incomplete


reached consensus?


Some groups treat the PEG as an issue similar to

stem-cell research and abortion

Burke Balch, director of National Right to Life

Committee’s Robert Powel Center for Medical

Ethics:

Their interest in end-of-life care is equivalent to its

concern over abortion


reached consensus?


Lawmakers in dozens of states have sought

changes that would make it harder to remove

feeding tubes

Right to Life Committee has won sponsors in

more than 10 states for legislation requiring

courts to presume a mentally handicapped

patient would want to live

Why is oral feeding a challenge in

advanced dementia for patients in SNFs?


Lack of attention to

individual food

preferences,

especially related to

ethnic choices

Dysphagia is

common, and instead

of feeding slowly,

residents are fed

quickly

Dysphagia

complicated by poor

oral health and ill-

fitting dentures

Placed on pureed

diets which are

unappealing

Inadequate staffing

and lack of

supervision

Poor oral intake leads to…


Weight loss

Malnourished state

Placement on pureed, unappealing diet

Commercial supplements added

May decrease appetite for regular food

Unable to express food preferences

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Careful Hand Feeding: A Reasonable

Alternative to PEG Tube Placement in

Individuals with Dementia(DiBartolo, 2006)


What the nurse or family member needs to know in

order to safely feed the patient

General strategies for optimizing oral intake in

persons with dementiaFrom: Alzheimer’s Association 2004; Amella (2004) Robnson, Spencer and

White 2002)


Adapt to the Person’s Food Preferences and Reduce mealtime confusion Regular schedule of mealtimes Preserve rituals (e.g. blessing; who sits where) Memory aids (e.g. clocks, bulletin board) Eyeglasses and hearing aids Calm environment Simplify (e.g. one food item on plate, one utensil) Avoid patterned plates, placemats Solid and contrasting colors Appropriate cueing (e.g. speak slowly, clear directions) Patience! Don’t criticize eating habits or urge to eat

faster

General strategies for optimizing oral

intake in persons with dementia


Encourage independence

Serve finger foods or sandwiches

Have snacks available and within reach

Use modified utensils (e.g. spoons with large

handles)

Use cups or mugs with lids to prevent spills, straws

that bend, fill glasses half full

Use hand-over-hand technique to initiate self-

feeding




Experiment with solutions to decreased appetite

Serve preferred foods

Foods with strong flavors, temperature differences

Plan for several small meals

Increase physical activity

Consider food supplements (e.g. yogurt,

milkshakes, egg nog)

Use vitamin supplements only on recommendation

of physician




Minimize problems with chewing and swallowing

Remind frequently to chew, eat slowly, swallow

Position upright

Don’t return patient immediately to supine

Serve appropriate foods (e.g. bite size, soft foods)

Avoid foods that are choking hazards (e.g. nuts,

popcorn, raw vegetables)

Moisten foods with gravy, broth if person has

trouble chewing




Other tips

Check for properly fitting dentures

Be sure foods served are not too hot

Check for pocketing of food in mouth

Place damp washcloth under plate/bowl to keep it

from sliding

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Careful hand feeding – other

considerations


Small bites

Monitor to be sure patient has swallowed before

offering another bite

If person holds food in mouth, offering an empty

spoon may cue patient to swallow

Many creative programs used in long

term care facilities


Silver spoons

Second seating

Happy hour

Clock reminders

Social meals

Touch, verbal and musical encouragement

Feeding assistants

Advice to families Be encouraging and accepting of the amount

of food the patient feels like eating. Don’t try to bargain to eat just one more bite. The body is saying what the limit is and eating just to please you may cause discomfort and negate any benefits or pleasure received from the small amount of food eaten.

Find out from the patient what sounds good and keep a variety of easy to prepare snacks on hand. (Pudding, Jell-O, etc.)

Advice to families As appetite declines, only small amounts will be

tolerated by the patient. Some patients enjoy the taste of liquid nutritional supplements. Caregivers sometimes feel better when they know the patient is taking in something with nutritional value.

Keep the mouth fresh and clean between meals.

Advice to families

Provide an appealing setting for meals, away

from the “sick room” if the patient is able to move.

Avoid unpleasant smells in the room.

Make every calorie count. Encourage the patient

to have snacks that are high in calories and

nutrition (ice cream, puddings, milk shakes, etc.)

Dementia as terminal illness


Information on terminally ill and eating

What can we learn from mentally alert patients

who are terminally ill?

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Is PO necessary in terminally ill

patients? (McCann et al 1994)


Objective. —To determine the frequency of

symptoms of hunger and thirst in a group of

terminally ill patients and determine whether

these symptoms could be palliated without forced

feeding, forced hydration, or parenteral

alimentation.

Is PO necessary in terminally ill

patients? (McCann et al 1994)


Setting. —Ten-bed comfort care unit in a 471-bed long-term care facility. Participants.—Mentally aware, competent patients with terminal illnesses monitored from time of admission to time of death while residing in the comfort care unit.

Main Outcome Measures. —Symptoms of hunger, thirst, and dry mouth were recorded, and the amounts and types of food and fluids necessary to relieve these symptoms were documented. The subjective level of comfort was assessed longitudinally in all patients.

Results McCann et al


Of the 32 patients monitored during the 12 months of study, 20 patients (63%) never experienced any hunger, while 11 patients (34%) had symptoms only initially.

20 patients (62%) experienced either no thirst or thirst only initially during their terminal illness.

In all patients, symptoms of hunger, thirst, and dry mouth could be alleviated, usually with small amounts of food, fluids, and/or by the application of ice chips and lubrication to the lips.

Comfort care included use of narcotics for relief of pain or shortness of breath in 94% of patients.

Conclusions re: terminally ill


Patients terminally ill with cancer generally did not

experience hunger and those who did needed

only small amounts of food for alleviation.

Complaints of thirst and dry mouth were relieved

with mouth care and sips of liquids far less than

that needed to prevent dehydration.

Food and fluid administration beyond the specific

requests of patients may play a minimal role in

providing comfort to terminally ill patients.

Risk of dehydration? (Gillick 2000)


Many elderly have impaired thirst mechanism

In terminal phase of Alzheimer’s disease,

dehydration minimizes discomfort

Hydration without nutrition causes discomfort

because it prolongs process of dying

Increases production of urine and sputum

What is the SLP’s Role?


Roles

Relationships

Documentation

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Relationship with family


Document discussions with the family regarding

treatment options and the family’s reaction to

those options

Disclose to the family the risks involved in all

treatment options, including the family’s desired

options



Document the risks and the disclosure, as well as

the family’s choice to decline treatment and their

reasons for declining or desiring certain

treatment.

Document family’s understanding of the risks

involved in all these options.



Document instructions given to the family, including

specific safety precautions.

Instructions should be written and included in the

medical record.

Document family’s response to instructions.

Did they understand reasoning behind the

instructions?

Do they need further instruction/training?



Document recommendations and clinical opinions about treatment options, including safety concerns regarding the various treatment choices.

Document physician conferences concerning treatment options, family choices, and pressures. Include physician’s response to family concerns.

Is physician leaning toward family’s choices even though these are inappropriate?

Relationship with physician


Document the presence of conferences with

physician

Clearly document the difference of opinion with

the physician and the physician’s stated reasons

for his or her opinion.

Document the SLP’s safety concerns regarding

the physician’s proposed options.

Relationship with physician


Document the SLP’s specific recommendations to

the physician and reasons for these

recommendations.

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Relationship with 3rd party payer

SLP should provide all relevant information to the

payer, whether requested or not

SLP should verify exact basis for the utilization

review/denial

SLP should articulate to the payer the risks and

dangers of failing to provide the requested

treatment


SLP should insist on review of the decision by

another SLP

SLP should inform the patient of the SLP’s

recommendations, the payer’s response, and the

risks of not providing treatment

SLP should request the payer reconsider the

denial, and use any available formal appeals

process


SLP should submit updated patient information to

the payer

SLP should consider expedited court relief

SLP should resolve all doubts in favor of patient

safety

SLP should remember the “golden rule”:

document, document, document!!

Questions? Discussion?


Myths and realitiesfrom: Kansas City Hospice

Some of these myths and realities may be

helpful in educating patients and families

Myth: Artificial feeding prolongs life.

Reality: Patients with advanced disease do not necessarily live longer with artificial feeding and may, in fact, suffer more as a result of the feeding. Artificially feeding the body often brings medical complications. This is more likely to be true if the illness is cancer, chronic lung disease, dementia, kidney failure, chronic heart disease or cirrhosis. Additionally, there is some evidence that cancer grows faster with extra nutrition. This is possibly because, in late-stage disease, the nutrients may “feed the tumor” rather than the body. Artificial feeding is most likely to extend life for patients with neurologic disorders like stroke or coma.

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Myth: If the patient doesn’t eat, he will die of

starvation.

Reality: Patients who stop eating because they

have end-stage disease die of their illness, not a

lack of food. Patients can live for months on a few

bites of food and a few sips of fluid a day.

Myth: Without nutrition, the patient will suffer more.

Reality: When the body no longer needs or

benefits from the nutrition being offered, there

seems to be a mechanism that “turns off ” the

appetite and the desire for food. At the same

time, the body seems to compensate for the

lack of food by producing a chemical that acts

as a buffer preventing the hunger healthy

people would experience if they stopped

eating.

Myth: Dehydration causes suffering

Reality: While dehydration can be a serious

condition in a healthy person, we have learned that in

the end stages of life the body simply can’t process all

those fluids. Research has shown that many patients

are actually more comfortable when the body does

not have to struggle with fluid overload. If a patient

has a dry mouth or feels thirsty, ice chips and drops of

water can address those symptoms to keep the

patient comfortable. Mouth swabs to help clean and

moisten the mouth can be helpful. Putting fluids into

an IV will not prevent a dry mouth and may cause

fluid overload.

Myth: Artificial feeding is just like eating, but the

nutrition is given another way

Reality: Artificial feeding differs from eating and drinking in many ways, and should not be considered natural. When patients have a feeding tube in their stomachs, they lose the pleasure of eating. The pleasure of eating comes from the flavor of the food and from sharing a meal, neither of which occurs with tube feedings. Many patients are distressed by the change in their body image or by having to be hooked up to a machine. In addition, when food and fluids are given through a stomach tube or into an IV, the body cannot regulate the amount of intake relative to the amount it can handle. This can lead to problems with excess fluid in the system. Intravenous feeding requires very close monitoring through blood tests and can lead to bloodstream infections.

Myth: Patients will be stronger if they are fed

artificially

Reality: Patients are rarely stronger if they

receive artificial feeding or fluids.

Myth: Tube feeding prevents pneumonia in

patients who have swallowing problems

Reality: Patients who receive their feeding

through a tube into the stomach still are at risk for

pneumonia, which occurs in approximately 50

percent of cases. Sometimes the feeding solution

travels back up the esophagus and goes into the

lungs.

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Myth: Tube feeding prevents bedsores and

other problems due to malnutrition

Reality: Tube feeding has not been shown to

prevent bedsores, and having a tube may make it

harder for the patient to move around, causing

more risk of bedsores.

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