Artificial Nutrition and Hydration at EndofLife

1
Artificial Nutrition and Hydration at End-of-Life

• Charlotte J. Molrine, PhD, CCC-SLP
• Edinboro University of Pennsylvania
• Speech, Language Hearing Department

2
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.

3
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.

4
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.

5
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.

6
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).

7
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).
• 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).

8
Artificial Nutrition Hydration

• 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).
• 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.
• For those patients who are cognitively impaired,
  surrogate decision makers are expected to use
  substituted judgment in determining how to
  proceed (Gillik, 2006).

9
Artificial Nutrition Hydration

• The decision maker must weigh the benefits and
  burdens of intervention and obtain factual
  information about what ANH can and cannot
  achieve.
• 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.

10
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.
• 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.

11
Potential Benefits of ANH

• 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.
• 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).

12
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).

13
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).

14
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.

15
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
  decision-making.
• 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.

16
Potential Burdens of ANH

• During the dying process, there is a generalized
  breakdown of the bodys 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).

17
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.

18
Terminal Starvation Dehydration

• Loss of appetite naturally occurs in terminally
  ill patients and is part of the bodys 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 patients 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.

19
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.

20
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.
• Fluid overload can stress the pulmonary system
  and increase patient discomfort.

21
Terminal Starvation Dehydration

• 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.
• 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.

22
Terminal Starvation Dehydration

• With a decline in respiratory tract secretions,
  the patient will have less coughing, choking, and
  shortness of breath.
• The drowning, suffocating sensation may resolve.
  
• 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.

23
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.

24
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

25
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.

26
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.
• Individuals experiencing terminal starvation may
  have fluid requirements almost fully met by water
  produced through fat metabolism (Sullivan, 1993).

27
Benefits of Terminal Starvation

• Unfortunately, feeding even small amounts can
  prevent ketonemia and prolong the sense of hunger
  (Cline, 2006).
• 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).

28
Benefits of Terminal Dehydration

• The only limited discomfort associated with
  terminal dehydration is dry mouth.
• 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.

29
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).

30
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.

31
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.

32
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
  clinicians 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).
  

33
Right to Refuse Medical Treatment

• A clinician who counters a patients 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.

34
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.

35
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.

36
Resources

• Brodsky, M. B. (2005). Ethics and quality of
  life Opposing ideals? Perspectives on Swallowing
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• Brody, H., Campbell, M., Faber-Langendoen, K.,
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• 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,
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• Fordyce, M. (2000). Dehydration near the end of
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• Gillik, M. R. (2006). The ethics of artificial
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• Hanna, E., Joel, A. (2005). End-of-life
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37
Resources

• Critchlow, J., Bauer-Wu, S. (2002). Dehydration
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• Fairrow, A., McCallum, T., Messinger-Rapport,
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• Kahn, M., Lazarus, C., Owens, D. (2003).
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38
Resources

• Leslie, P. (2008). Food for thought How do
  patients with ALS decide about having a PEG?
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• Matsumura, S., Bito, S., Liu, H., Kahn, K.,
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• Moynihan, T., Kelly, D., Fisch, M. (2005). To
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39
Resources

• Sharp, H. (2005). When patients refuse
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  Perspectives on Swallowing and Swallowing
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• Taylor, M. (1995). Benefits of dehydration in
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