Download Artificial Nutrition and Hydration at End-of-Life

Artificial Nutrition and
Hydration at End-of-Life
Charlotte J. Molrine, PhD, CCC-SLP
Edinboro University of Pennsylvania
Speech, Language & Hearing Department
Introduction & Learning Expectations
 Identify pros and cons of artificial nutrition and
hydration (ANH).
 Differentiate burdens and benefits of terminal
hydration and starvation.
 Identify cultural differences of end-of-life and
prolongation of life.
Understanding Dysphagia
 Often elderly patients are diagnosed with dysphagia
in the hospital setting while dealing with other critical
illness (Sullivan, 2008).
 Speech-language pathologists (SLPs) are frequently
consulted to present recommendations for nutrition
and hydration management in such cases, as well as
in cases where dysphagia accompanies a
progressive terminal disease, or arises in the care of
persons who are dying.
The Role of the SLP
 In our SLP practice, we expect that dysphagia will be
present in a known percentage of patients with
progressive disease processes (e.g., PD, ALS).
 As the disease progression evolves, the symptom of
dysphagia is readily identifiable and managed
somewhat predictably, although decisions about
whether or not to initiative artificial nutrition and
hydration (ANH) will almost invariably arise.
The Role of the SLP
 “In circumstances that prevent an individual from
safely consuming an oral diet or sustaining
adequate nutrition and hydration, alternative
alimentation, such as tube feeding, is often
recommended” (Landes, 1999, p. 109).
 Patients may struggle to understand what is
happening to them because of accompanying
medical conditions or cognitive impairments.
The Role of the SLP
 Both the quality of care and the quality of life can be
influenced by the manner in which family caregivers
understand and comply with nutrition and hydration
strategies for the individual with dysphagia (Sullivan, 2008).
 SLPs have an important role in providing competent and
compassionate care and support to families and patients
coping with the handicap of dysphagia.
 Each person must be treated as an individual, and all
aspects of each situation must be considered before a
decision is made for or against supplemental feeding
(Leslie, 2008).
Artificial Nutrition & Hydration
 Originally, artificial nutrition and hydration (ANH)
were developed to provide short-term support to
patients who were acutely ill but expected to recover
from a disease and to resume eating and drinking.
 Unfortunately, these temporary measures have
come to be used as long term treatment, and in
these situations, ANH sometimes presents an ethical
dilemma (Gillik, 2006).
Artificial Nutrition & Hydration
 Decision-making about feeding tube placement for
continued nutrition and hydration is especially difficult
in diseases where no cure is available but death is
not imminent (e.g., dementia).
 Decisions must also be made about prolonging life
through ANH in an individual whose disease does not
have a cure and for which death is imminent (e.g.,
terminal cancer) (Brodsky, 2005).
Artificial Nutrition & Hydration
 For those patients who are cognitively impaired,
surrogate decision makers are expected to use
substituted judgment in determining how to proceed
(Gillik, 2006).
 Patients who are cognitively intact at the time they lose
the ability to eat and drink, including many individuals
with ALS or metastatic cancer, can participate in the
decision-making process.
 The decision maker must weigh the benefits and
burdens of intervention; and obtain factual information
about what ANH can and cannot achieve.
Artificial Nutrition & Hydration
 The choice to initiate, withhold, or discontinue ANH
should be made by a fully informed decision maker, be
it the patient or his/her surrogate (or proxy) decision
maker (Hanna & Joel, 2005; Sharp, 2005).
 Because ANH can be a life-sustaining treatment,
refusal by the patient or a surrogate decision-maker to
accept this recommendation can create discomfort for
some family members because they must recognize
that their loved one is in the dying process.
Potential Benefits of ANH
 The potential benefits of ANH vary depending on the
clinical scenario.
 For patients in a persistent vegetative state or who
have short bowel syndrome, ANH prolongs life.
 ANH may benefit patients requiring supplemental
nutrition, especially during chemotherapy or radiation
therapy, for some types of gastrointestinal cancers.
Potential Benefits of ANH
 ANH may provide enhanced nutrition for some groups,
such as post acute stroke, and a limited trial of ANH
may be particularly helpful in situations where the
prognosis is uncertain.
 A patient who has had a major stroke with concomitant
dysphagia could be maintained with ANH for a period of
weeks to determine whether or not he/she will recover
enough neurological function to eat and want to
continue treatment.
Potential Benefits of ANH
 Even at the end of life, ANH can be justified to allow for
“unfinished business,” the resolution of which can
produce peace of mind for both patient and caregivers.
 Similarly, ANH can be made to prolong dying if the
patient needs time for a relative to arrive, financial
affairs to be concluded, or an important event, such as
the birth of a grandchild to occur (Fordyce, 2000).
Potential Benefits of ANH
 Certain religious and cultural values may influence the
choice to prolong life with ANH.
 There are a few studies to date that have begun to
examine preferences about long-term tube feeding at
end of life in culturally diverse populations, including
Japanese Americans and Japanese (Matsumura, Bito,
Liu, Kahn, Fukuhara, Kagawa-Singer, & Wenger,
2002); African Americans (Farrow, McCallum, &
Messinger-Rapport, 2004); and different religious
groups (Kahn, Lazarus, & Owens, 2003; and Shapiro &
Friedmann, 2006).
Potential Benefits of ANH
 Whether the result of cultural and/or religious
preferences, many people want assurances that their
loved one is being cared for, and ANH symbolizes
caring.
 Although ANH is unlike conventional eating, it is often
seen as nurturing, an extension of offering food and
drink to a person as part of basic, humane care (Gillick,
2006).
Potential Burdens of ANH
 There is frequent misunderstanding regarding the
natural course of a life ending illness.
 Often times, the choice to insert a feeding tube is to
avoid having the patient “starve to death.”
 The underlying thought seems to be that to withhold
nutrition will cause undue pain (Hanna & Joel, 2005).
 However, the benefits of ANH are not clearly defined
when a terminal illness is involved.
Potential Burdens of ANH
 Patient reports of thirst and hunger in the dying
process are a useful source of information for SLPS
participating in discussion about ANH decisionmaking.
 McCann, Hall, and Groth-Juncker (1994) found that
terminally ill patients did not experience hunger, and
complaints of thirst and dry mouth were relieved with
mouth care and sips of liquids in amounts far less
than those needed to prevent dehydration.
Potential Burdens of ANH
 During the dying process, there is a generalized
breakdown of the body’s regulating mechanisms so
decline continues even when the individual is
provided with adequate calories and nutrients
(Chouinard, Lavigne, & Villeneuve, 1998).
 This generalized breakdown, through the process of
catabolic metabolism, leads to natural terminal
dehydration and starvation and occurs whether or not
food and fluids are provided by mouth, by tube, or by
IV (Cline, 2006).
Potential Burdens of ANH
 Therefore, ANH in end stage advanced dementia and
terminal illness does not always ensure comfort.
 If the metabolism has already slowed, the feedings
may cause bloating, distension, diarrhea, or
aspiration (Cline, 2006).
 Additional fluid intake raises the risk of overload,
leading to increased secretions and congestion,
which make breathing more difficult.
Terminal Starvation & Dehydration
 Loss of appetite naturally occurs in terminally ill
patients and is part of the body’s “shutting down” in
preparation for death (Critchlow & Bauer-Wu, 2000).
 Calorie deprivation from terminal starvation results in
a partial loss of sensation, adding to the patient’s
comfort during the dying process (Brody, Campbell,
Faber-Langendoen, & Ogle, 1997).
 Dehydration in terminally ill patients has been found
to be beneficial and to improve the quality of an
individual's last few days of life.
Terminal Starvation & Dehydration
 Anesthesia, reduced urine, decreased
gastrointestinal fluids, and decreased pulmonary
congestion have been reported as well as fewer
episodes of nausea and vomiting, less coughing and
chest congestion, and reduced sensations of
drowning and choking (Critchlow and Bauer-Wu,
2000; Taylor, 1995).
 Hydrating the dying person has been associated with
complications such as increased pain, respiratory
congestion, and swelling.
Terminal Starvation & Dehydration
 The combined effects of starvation and dehydration
cause body chemistry changes which stimulate the
production of natural endorphins.
 The resultant mild euphoria may also act as a natural
anesthetic to the central nervous system, blunting
pain and other symptoms, so the need for narcotics
may be reduced (Huffman & Dunn, 2002).
 At end of life, gradual renal, circulatory, and other
organ dysfunction occurs.
Terminal Starvation & Dehydration
 Fluid overload can stress the pulmonary system and
increase patient discomfort.
 Because terminal dehydration decreases total body
water, it can have potential beneficial effects and thus
facilitate a peaceful death.
 Dehydration may decrease brain swelling and reduce
the discomfort of associated headaches and
confusion.
Terminal Starvation & Dehydration
 Basic mental function is generally preserved up to the
last few days of life, when coma may occur.
 Dehydration can also reduce cardiopulmonary
problems such as congestive heart failure and
pulmonary edema.
 With a decline in respiratory tract secretions, the
patient will have less coughing, choking, and
shortness of breath.
 The drowning, suffocating sensation may resolve.
Terminal Starvation & Dehydration
 There may be diminished need for repeated,
unpleasant suctioning.
 With dehydration, gastrointestinal fluid production
can fall reducing the chance of bloating, nausea,
vomiting, aspiration, and diarrhea.
 The patient has less need to void and a reduction in
urinary incontinence prevents the need for a urinary
catheter.
Terminal Starvation & Dehydration
 Many times chronically and terminally ill patients
may lose peripheral IV access.
 Central access, whether short- or long-term, can be
painful and limit patient mobility.
 Mobility can also be restricted by restraints used to
keep the invasive tubes and lines from inadvertent or
purposeful removal by the patient.
 Removing IVs and tubes can permit discontinuance
of restraints, allowing increased mobility, comfort,
and dignity.
Terminal Starvation & Dehydration
 IVs can also produce a technical distraction.
 Their removal allows attention to be directed to other
forms of support such as personal care or
conversation.
 Death from terminal dehydration and starvation
usually occurs within one to three weeks (Quill, Lee,
& Nunn, 2000).
 It may result from changes in several mechanisms:
Terminal Starvation & Dehydration
 a reduction in white cell function associated with protein
deficit may permit the development of sepsis leading to
death;
 arrhythmias related to myocardial degeneration or to
electrolyte imbalance can cause cardiac arrest; and
 weakness from muscle protein catabolism may lead to
inadequate clearing of chest secretions and subsequent
pneumonia caused by depressed respiration.
Benefits of Terminal Starvation
 With change in body metabolism at end of life, the
body uses fat as the predominant energy source, and
ketones build up.
 The result is ketonemia, a condition that produces a
euphoric state that actually increases comfort.
 A byproduct of the conversion of body fat to energy is
water.
Benefits of Terminal Starvation
 Individuals experiencing terminal starvation may
have fluid requirements almost fully met by water
produced through fat metabolism (Sullivan, 1993).
 Unfortunately, feeding even small amounts can
prevent ketonemia and prolong the sense of hunger
(Cline, 2006).
Benefits of Terminal Starvation
 Indeed hunger rapidly reappears when ketosis is
relieved by ingesting small amounts of carbohydrate
or when intravenous mixtures of 5% dextrose and
water cause this metabolic shift (Sullivan, 1993).
 The only limited discomfort associated with terminal
dehydration is dry mouth.
Benefits of Terminal Dehydration
 Comfort can be provided by family members and
other caregivers by gently cleansing the mouth with a
soft tooth brush, relieving dry mouth with ice chips or
oral swabbing, and frequently applying a water-based
lip balm (Dahlin, 2004).
 Drying skin can also be moisturized with lotion.
End of Life Patients and Dysphagia
 The end-of-life (EOL) population includes patients
who are seriously ill and those who have other
underlying conditions, such as advanced age,
progressive disease, or advanced dementia.
 A specialized skill set is required for EOL patients
with dysphagia and their families.
 SLPs must be able to adapt treatment plans to
reduce risk and emphasize enhanced comfort and
choice and they must facilitate patient/family
communication (Levy et al., 2004).
End of Life Patients and Dysphagia
 SLPs must optimize function related to dysphagia
symptoms and minimize potential complications from
continued oral feeding;
 SLPs must work to improve patient comfort and
eating satisfaction; and
 They must promote positive feeding interactions for
family members.
EOL Patients with Dysphagia and
Choice
 Patients may choose to forego instrumental
diagnostic testing (e.g., VFSS), especially if the
examination would not change the clinical outcome.
 Patients may choose to refuse a prior
recommendation for NPO status or choose not to
initiate the use of ANH.
 Families or patients may choose foods or food
textures based upon cultural or familial significance.
Right to Refuse Medical Treatment
 For patients with severe, unrelieved suffering and
advanced, incurable illness, cessation of eating and
drinking is considered part of the right to refuse
treatment.
 Voluntary cessation of eating and drinking is, by
definition, a patient decision and the clinician’s role is
one of continued care and support (Quill & Byock,
2000).
 It is the fundamental right of competent patients to
refuse medical treatment and to be free of unwanted
bodily intrusion (Miller & Meier, 1998).
Right to Refuse Medical Treatment
 A clinician who counters a patient’s decision by
forcing food or ANH risks committing assault.
 Because it typically takes several days to a few
weeks for death to occur by this means, the patient
who seeks death by terminal dehydration and
starvation retains an opportunity to change his/her
mind.
 Moreover, pain and suffering caused by the
underlying disease can be treated by standard
palliative measures, including administration of
sedation.
Right to Refuse Medical Treatment
 The right to forego food and water, whether by mouth
or by artificial means, is a method of voluntary death.
 The distinction must also be made between the
decision of the patient who has no underlying
condition that interferes with normal appetite,
digestion, or absorption of water and essential
nutrients, but nevertheless intends to end his/her
own life by not eating and drinking.
Palliative Care & ANH
 Palliative care does not include or exclude any
specific type of therapy, such as ANH.
 Instead palliative care seeks to provide relief from
symptoms caused by the terminal process.
 Palliative care neither seeks to hasten or postpone
death, but to relieve suffering (Moynihan, Kelly, &
Fisch, 2005).
 So if ANH is withheld, it does not mean that the
patient as been abandoned.
 At end of life, reducing physical discomfort and
maintaining patient dignity are paramount.
Resources
Brodsky, M. B. (2005). Ethics and quality of life: Opposing ideals? Perspectives on Swallowing
and Swallowing Disorders, 14(3), 7-12.
Brody, H., Campbell, M., Faber-Langendoen, K., & Ogle, K. (1997). Withdrawing intensive lifesustaining treatment: Recommendations for compassionate clinical management. NEJM,
336, 652-657.
Chouinard, J., Lavigne, E., & Villeneuve, C. (1998). Weight loss, dysphagia, and outcome in
advanced dementia. Dysphagia, 13, 151-155.
Cline, R. D. (2006). Nutrition issues and tools for palliative care. Home Health Care Nurse, 24(1),
54-57.
Fordyce, M. (2000). Dehydration near the end of life. Annals of Long Term Care, 8(5), 29-33.
Gillik, M. R. (2006). The ethics of artificial nutrition and hydration—A practical guide. Practical
Bioethics, 1, 5-7.
Hanna, E., & Joel, A. (2005). End-of-life decision making, quality of life, enteral feeding, and the
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13-18.
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Resources
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Matsumura, S., Bito, S., Liu, H., Kahn, K., Fukuhara, S., Kagawa-Singer, M., & Wenger, N.
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