3/17/2016€¦ · 3/17/2016 3 why do hospice & palliative care patients need rehabilitation? 13...
TRANSCRIPT
3/17/2016
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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, M.A., CCC-SLP, BCS-S2
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S3
Discuss ethical principles related to dysphagia,
palliative care and hospice
Describe principles of comfort measures
Need for palliative care
Nancy B. Swigert, M.A., CCC-SLP, BCS-S4
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S5
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S6
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S7
Management of symptoms:
Pain
Nausea
Fatigue
Psychosocial issues
Spiritual issues
The development of CBH* Palliative
Care Program (* Now called Baptist Health Lexington)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S8
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)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S9
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S10
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S11
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S12
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S13
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S14
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S15
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S16
Physical modalities for pain control
Provision of adaptive and assistive equipment
Environmental modification
Education on energy conservation
Exercise
Role of Occupational Therapy
Nancy B. Swigert, M.A., CCC-SLP, BCS-S17
ADLs
Work Tasks
Self-esteem
Role-related tasks
Recreation
Use of adaptive equipment
Role of the SLP (Pollens 2004)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S18
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S19
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S20
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S21
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S22
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S23
ASHA Code of Ethics
Principles of Biomedical Ethics
Case law
ASHA Code of Ethics
Nancy B. Swigert, M.A., CCC-SLP, BCS-S24
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S25
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S26
Autonomy
Non-maleficence
Beneficence
Justice
Autonomy
Nancy B. Swigert, M.A., CCC-SLP, BCS-S27
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S28
Above all, do no harm
Do not cause harm or impose the risk of harm
Closely tied to the principle of beneficence
Beneficence
Nancy B. Swigert, M.A., CCC-SLP, BCS-S29
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S30
Fairness
Equal access to health care
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Patient rights
Nancy B. Swigert, M.A., CCC-SLP, BCS-S31
Right to predetermine medical treatment limits
Right to discontinue or refuse treatment
Right to refuse to follow swallowing safety
recommendations
SLP ethical responsibilities
Nancy B. Swigert, M.A., CCC-SLP, BCS-S32
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)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S33
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S34
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S35
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S36
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S37
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S38
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S39
Nursing home industry reports that patients with
feeding tubes result in increased cost of care
Case law related to nutrition and
hydration
Nancy B. Swigert, M.A., CCC-SLP, BCS-S40
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S41
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S42
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S43
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:
Nancy B. Swigert, M.A., CCC-SLP, BCS-S44
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S45
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S46
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.
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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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S52
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S53
“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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S54
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S55
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S56
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S57
“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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S58
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S59
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S69
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S70
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S71
Pain at site of tube
Diarrhea
Nausea
Hematoma
Fistula
Peritonitis
Abdominal abscess
Loss of dignity
Plonk 2005
Poor prognostic factors for PEG
placement (Plonk)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S72
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S73
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S74
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S75
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)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S76
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)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S77
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)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S78
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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Improving Decision-Making for Feeding
Options in Advanced Dementia (Hanson et al
2011)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S79
Primary outcome was Decisional Conflict Scale
measured at three months
Other main outcomes: surrogate knowledge,
frequency of communication with providers and
feeding treatment use
Improving Decision-Making for Feeding
Options in Advanced Dementia (Hanson et al
2011)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S80
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
Improving Decision-Making for Feeding
Options in Advanced Dementia (Hanson et al
2011)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S81
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
Improving Decision-Making for Feeding
Options in Advanced Dementia (Hanson et al
2011)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S82
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
Improving Decision-Making for Feeding
Options in Advanced Dementia (Hanson et al
2011)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S83
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S84
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S85
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S86
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
Have the medical and legal communities
reached consensus?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S87
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
Have the medical and legal communities
reached consensus?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S88
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S89
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…
Nancy B. Swigert, M.A., CCC-SLP, BCS-S90
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)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S91
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)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S92
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S93
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
General strategies for optimizing oral
intake in persons with dementia
Nancy B. Swigert, M.A., CCC-SLP, BCS-S94
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
General strategies for optimizing oral
intake in persons with dementia
Nancy B. Swigert, M.A., CCC-SLP, BCS-S95
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
General strategies for optimizing oral
intake in persons with dementia
Nancy B. Swigert, M.A., CCC-SLP, BCS-S96
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S97
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S98
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S102
Information on terminally ill and eating
What can we learn from mentally alert patients
who are terminally ill?
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18
Is PO necessary in terminally ill
patients? (McCann et al 1994)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S103
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)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S104
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S105
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S106
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)
Nancy B. Swigert, M.A., CCC-SLP, BCS-S107
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S108
Roles
Relationships
Documentation
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19
Relationship with family
Nancy B. Swigert, M.A., CCC-SLP, BCS-S109
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
Relationship with family
Nancy B. Swigert, M.A., CCC-SLP, BCS-S110
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.
Relationship with family
Nancy B. Swigert, M.A., CCC-SLP, BCS-S111
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?
Relationship with family
Nancy B. Swigert, M.A., CCC-SLP, BCS-S112
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S113
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
Nancy B. Swigert, M.A., CCC-SLP, BCS-S114
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
Relationship with 3rd party payer
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
Relationship with 3rd party payer
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?
Nancy B. Swigert, M.A., CCC-SLP, BCS-S118
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.