Artificial Nutrition and Hydration at End of Life

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Artificial Nutrition and Hydration at End of Life
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True or False?

• Withholding or withdrawing artificial fluids and
  nutrition from terminally ill or permanently
  unconscious patients is illegal.

3

• Like any other medical treatment, fluids and
  nutrition may be withheld or withdrawn if the
  patient refuses them or, if in the case of an
  incapacitated patient, if the appropriate
  surrogate decision-making standard is met.
• (Meisel, Snyder and Quill, JAMA 284 (19),
  2495-2501, Nov 15, 2000)

4

• Ethical consensus and appellate court decisions
  view artificial nutrition and hydration (ANH) as
  medical treatment that can be refused like other
  treatments.
• However, advance directive statutes may produce
  obstacles for refusal of ANH, as distinct from
  other life-sustaining treatments, in patients who
  lack capacity.
• (JAGS, 2002. 50544-550)

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Objectives

• Consider the indications and prevalence of
  enteral feeding in vulnerable populations
• Recognize the potential benefits, burdens and
  complications of PEG insertion and feeding via
  PEG tube
• Identify the barriers of using of alternative
  feeding methods
• Describe the ethical principles involved in
  withholding or withdrawing clinical nutritional
  support
• Consider elements of conversation re ANH with
  patient and family

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Hunger, Thirst, and Taste

• Hunger
• Arises primarily in the stomach
• Decreases with decreased blood flow to
  gastrointestinal tract
• Taste
• Arises primarily in the mouth
• Dependent upon sense of smell
• Negatively impacted by age, medication, disease
  process
• Thirst
• Arises primarily in the mouth
• Persists
• Implications to optimal care

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Artificial Hydration and Nutrition Overview

• Intravenous
• Total Parenteral Nutrition (TPN)
• Tube Feeding
• Nasogastric Tube
• Gastrostomy Tube
• Percutaneous Endoscopic Gastrostomy (PEG)
• Conventional Gastrostomy

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History

• Ancient Egyptians reeds animal bladders,
  wine/broth/eggs
• Ancient Greeks nutritional enemas
  (ineffective)
• 1568 Capivaceus of Venice used a tube to
  deliver nutrition into the esophagus
• 1617 Aquapendente used a NG tube made of
  silver
• 1646 Von Helmont made a NG tube from leather

• 1790 John Hunter fed a person with a hollow
  catheter into the stomach
• 1810 First stomach pump
• 1860 Lister develops the aseptic technique
• 1900s 1980 Feeding tubes placed surgically
• 1950s 1960s Dow Corning tests efficacy of
  silicone for medical products
• 1980 Ponsky Gauderer devise the endoscopic
  percutaneous technique (local anesthetic) PEG

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WHY NOW? Impact of PEG

• Market Forces
• Nursing assistant can hand-feed two patients or
  hang 10 PEG feedings per hour
• Aging Population
• PEG is easier, less risk, shorter recovery than
  standard feeding tube
• Fear of Liability
• Its available, you didnt offer it, etc..
• Economic Inducements (Insurance payments)
• (Kansas LIFE Project, December 13, 2005)

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Indications for Enteral Nutrition in Vulnerable
Patients

• Neuromuscular disease affecting swallowing and
  gag reflex
• Malnutrition due to hypermetabolism or cachexia
• Unable to eat (vent-dependent, post-op, upper GI
  tumors)
• Dysphagia with frequent aspiration post CVA

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Potential Benefits and Burdens of Feeding Tube
Patients with Severe Dementia (Quill)

• Biomedical
• Improve hydration.
• Improve nutrition.
• Careful monitoring of metabolic state
• Potential to prolong life
• Psychosocial
• Do everything possible.
• Provide basic sense of care and feeding.
• Prevent perception of starvation.
• Make feeding quick and efficient.

• Biomedical
• Monitoring of metabolic status
• Maintenance of tube
• Primary focus on technical care
• Potential to prolong the dying process
• Psychosocial
• Potential to prolong poor quality of life
• Focus on technical aspects of care
• Lose smell/taste of real food
• Lose human contact of feeding

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Benefits of NOT using Artificial Hydration in a
Dying Patient

• Less fluid in the lungs less congestion, making
  breathing easier
• Less fluid in the throat less need for
  suctioning
• Less pressure around tumors less pain
• Less urination less need to move the patient for
  changing the bed and less risk of bedsores
• A natural release of pain relieving chemicals as
  the body dehydrates (mild euphoria) suppresses
  appetite and causes a sense of well-being
• Less fluid retained in the patients hands, feet
  and the whole body

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Hand Feeding Challenges

• Assisting with oral intake is the most
  time-intensive activity
• Thorough, expert assessment of swallowing
  ability meticulous attention to detail
• 45 of nursing home residents need varying
  degrees of assistance with meals
• Poor data (75 of dementia care given at home)
• Convenience of tube feeding versus inconvenience
  of oral feeding
• Time hours for feeding and mouth care
• Human resources more efficient for facility,
  not necessarily the resident
• Skill unlicensed, untrained personnel
• Fiscal incentive Medicaid pays higher daily
  rate for tube-fed versus hand-fed residents

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Benefits of Hand Feeding Maintaining Mealtime

• Mealtime means more than just nutrition
• All cultures have rituals regarding meals
• Food Rite of passage
• The social component of a meal may be as
  important as what is served!

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Symbolism, Distortions Sloganism

• Food Powerful symbolism of
• Love
• Nurturing
• Culture/Religion/Ritual
• Distortion EN/PN viewed as food
• Starvation killing, letting die, torture

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ComplicationsSurgically Placed Feeding Tubes

• Local
• Mechanical
• Metabolic
• GI
• Pulmonary
• Other

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Complications Local

• Pain
• Skin excoriation
• Infection cellulitis of the abdominal wall,
  peritonitis, abscess, hematoma
• Bleeding from the site
• Closure or stenosis of stoma

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Complications Mechanical

• Tube leakage/blockage/malfunction
• Displacement
• Erosion of bumper into abdominal wall
• Buried bumper syndrome (BBS) migration of
  internal bumper through or into abdominal wall
  (Anagnostopolous et al 2003)
• Perforation

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Complications Metabolic

• Risks diabetics, malnourished, alcoholics, high
  caloric density formulae
• Hyperosmolar diarrhea
• Glucose intolerance/hyperglycemia
• Hypercapnea
• Electrolyte abnormalities
• Refeeding syndrome

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Refeeding Syndrome

• Initially seen in POWs in WWII
• Commence high calorific feeding to previously
  malnourished pt. ? insulin release ?
  transcellular shift of electrolytes
• Administration of nutrients ? cellular demand for
  phosphorous, glucose, potassium and water
• Fluid shift ? edema ? volume overload ? cardiac
  failure, neurological dysfunction, death
• Prevention close monitoring of electrolytes,
  especially phosphorous

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Complications Gastrointestinal

• Flatulence, nausea, vomiting
• Diarrhea
• Factors osmolality of formulae, rate of
  delivery, H2 blockers, antibiotics, fiber content
  of formula
• Ileus
• Reflux
• Gastric mucosal erosion with bleeding
• PERFORATION most dangerous
• (Sasaki et al 2004)

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Complications Pulmonary

• Aspiration (gastric contents/oral secretions)
• Pneumothorax
• Bronchopleural fistula due to erosion of tube
  into pleural cavity
• 40 death associated with tube feedings from
  aspiration pneumonia
• (Ciocon et al 1998)

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Complications Other

• Anorexia
• Fluid overload
• Infectious/noninfectious diarrhea
• Nectrotizing fasciitis
• Agitation
• Self-extubation
• Use of restraints, sedatives
• Loss of social aspects of feeding
• (Haddad, R. Enteral Nutrition and Tube Feeding,
  Clinics in GM, 2002)

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Does tube feeding prevent the consequences of
malnutrition?

• Cohort study 40 chronically tube-fed patients
• Poor functional and cognitive status
• No improvement in wt. loss, severe depletion of
  lean and fat body mass, micronutrient
  deficiencies
• Pressure sores in 65
• Despite administration of apparently adequate
  formula, micronutrient deficiencies and marasmic
  malnutrition exist in chronically ill patients.
• (Henderson, 1992)

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If we seek a different answer, we MUST ask a
different question

• What else can we offer this patient?
• What is the goal of each proposed intervention?
• What is the likelihood the desired goal will be
  achieved with the intervention?
• What are the risks (benefits)?
• For whom are we doing this?
• Who is suffering here?
• WHAT IS THE GOAL?

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Withholding/Withdrawing Treatment Is there an
ethical difference?

• Intended or expected outcome
• Progression of disease
• Patient autonomy and dignity
• Professional obligation
• The morals of action vs. inaction

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Differences Between Withholding and Withdrawing

• From moral, ethical, medical, legal and most
  religious viewpoints, there is no difference
  between withholding and withdrawing.
• Emotionally, there is often a HUGE difference.

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Attitudes of Physicians

• 360 physicians, house staff, med students survey
  with case vignettes
• 76 consider WH/WD passive euthanasia
• 51 would accede to patients refusal for
  treatment
• 77 disturbed by active euthanasia
• 16 would accede to request for assistance
• 68 agreed assistance may be morally justified
• 6 would actively terminate life

(Hammons, C. Crit Care Med. 1992 20(5)683-90)
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Attitudes of Nurses and Physicians in the UK and
USA

• 759 US nurses/687 US doctors
• 469 UK nurses
• Accept double effect
• Accept medical futility
• Distinction between heroic/ordinary
• Distinction between WH/WD
• These concepts disparaged by some bioethicists
  as rationalistic andambiguous(Dickenson,
  D. J Med Ethics 2000 26 254-260)

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Ethical and Legal Climate

• Doctor vs. Patient before 1970
• Generally recognized role of the doctor to act
  unilaterally for the patient (paternalism model)
• Patient and family followed orders
• Limited treatment choices
• Patients tended to die at home
• Patient vs. Doctor today
• Courts generally do not recognize the right of
  physicians to act unilaterally to end treatment
• Courts generally protect the patients unilateral
  right to maintain or discontinue treatment

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Conflict in End-of-Life Care

• Defining the patients good
• Defining futility
• Philosophical/religious
• Cultural/ethnic
• Physicians multiple roles
• Defining quality of life
• Economics
• Who decides?

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The Ethical DilemmaGood Ethics ALWAYS Begin with
Good (Correct) Information

• What are the clinical facts?
• Is the diagnosis correct?
• Prognosis (has lived 13 years)
• Is feeding rehabilitation possible? Is it futile
  treatment?
• What are the ethical questions?
• What would the patient want? (Autonomy)
• Is the surrogate valid?
• What conflicts exist?
• Husband, family, caregivers, providers, courts
• What options are available?
• Ethical arguments, pro and con
• Beneficence, nonmaleficence, autonomy, justice
• What should be done for this patient?

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Todays Moral Climate of Limiting Treatment

• The patient has a limited right to choose or
  refuse treatment.
• The patients right to choose is grounded in the
  moral complexity of the provider-patient
  relationship.
• Futility is a melding of evidence and values.
• Personal values are easily (and erroneously)
  transmitted as scientific facts
• WH and WD are ethically similar but morally
  distinct.
• Personal beliefs and bias are unavoidable.
• Be aware of them know your lens.

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Having the Conversation

• WHAT is the goal?
• WHO is the decision maker(s)?
• For WHOM are we doing this?
• WHY are we recommending/doing this?
• WHEN does the decision have to be made?
• WHERE will the patient need to be for ongoing
  care?
• HOW will success be measured?

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Having the ConversationCore Principles

• GOAL
• Achieve consensus about
• Diagnosis and prognosis
• Benefits and burdens of different treatment
  options
• Meaning of emotionally charged terms (e.g.,
  starvation, suffering, quality of life, feeding,
  and dying)
• DECISIONS
• Based upon
• Patients preferences
• Balance of burdens and benefits

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Having the ConversationCore Principles

• Structure decision-making as a consensus-
  building process grounded in DIALOGUE among
  proxy, other close family members, physician, and
  immediate care givers.
• Palliative care should be offered whether
  life-prolonging measures are initiated or the
  patient is treated with comfort measures only.

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Helping Families with the Decision to W/H or W/D
Life-Sustaining Treatment

• Focus the family on what the patient would want,
  not what the family members want.
• If LST is to be W/D, emphasize that
• LST cannot reverse the underlying disease
  process.
• W/D of LST allows the natural course of the
  disease to occur.
• Aggressive palliative care will be used to ensure
  patient comfort.

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Helping Families with the Decision to W/H or W/D
Life Support

• Give families time to adjust to W/D LST.
• Educate the family about what will likely happen
  when LST is W/D.
• Discuss the likely time to death, as well as
  variability and uncertainty.
• Discuss agonal respirations and myoclonus
• Elicit family preferences, re plans
• Mention organ donation, when appropriate

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Reframing Requests for AHN(Hallenbeck)
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Reframing Requests for AHN(Hallenbeck)
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Reframing Requests for AHN(Hallenbeck)
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Making Preparations Prior to Discussion

• Review previous knowledge of patient/family.
• Review previous knowledge of patients attitudes
  and reactions.
• Review your knowledge of the disease
• Especially prognosis and treatment options
• Examine your own feelings, attitudes, biases,
  grief.
• Plan specifics.
• Advance discussion with family, re who should be
  present

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Holding a Discussion About Withholding/Withdrawing
Treatment(s)

• Introduce everyone present.
• Set the tone (non-threatening).
• Determine what those present understand.
• Ascertain what they want to know.
• Be aware/acknowledge that some do not want to
  discuss withholding/withdrawing treatment.
• Discuss prognosis frankly.

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Holding a Discussion About Withholding/Withdrawing
Treatment(s)

• Do not discourage all hope.
• Avoid temptation to give too much medical detail.
• Make it clear that W/H LST is NOT W/H caring.
• Use repetition to show you understand what the
  patient or family is saying.
• Acknowledge strong emotions.
• Tolerate silence.

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Finishing a Discussion of Withholding/Withdrawing
Treatment(s)

• Achieve common understanding of the disease and
  treatment issues.
• Make a recommendation, re treatment plan.
• Ask if there are any questions.
• Provide basic follow-up plan and make sure
  patient and/or family know how to reach you for
  questions.

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Summary

• Decision making, re optimal nutritional support
  at end of life, is often complex and
  challenging.
• Accurate information, re the benefits and
  burdens of ANH, is essential to ethical decision
  making.
• Withholding and/or withdrawing food, fluids, and
  nutrition at EOL can be emotionally challenging.
• Understanding the ethical principles involved is
  a prerequisite to optimal support of those making
  decisions.
• Well prepared health care professionals can
  facilitate decision making and provide education
  and support to family decision makers.

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Questions

• For future assistance, contact
• Norma Hirsch, MD, FAAP
• Chief Medical Director
• Hospice of Central Iowa
• [phone] or [phone]
• www.hospiceofcentraliowa.org

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