Medical Principles for Decision Making Nutritional Management of the Terminally Ill

1
Medical Principles for Decision
MakingNutritional Management of the Terminally
Ill

• Melanie P. Stapleton MD FRCPC
• June 2, 2007

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Outline

• Prognosis why it matters so much
• Benefits and limitations of nutrition support
• Informed consent
• Disease-specific cases
• ALS
• Advanced dementia

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What is Nutrition Support?

• Range of interventions
• Dietician and/or SLP consultation
• Oral dietary changes and supplementation
• Enteral nutrition (EN) support (NG or PEG)
• Parenteral nutrition (PN)

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Why is Prognosis so Important?

• No benefits from very short term nutrition
  support
• Days, weeks, or months
• Available treatment options and likelihood of
  success
• Patient/family beliefs about nutrition support

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What Symptoms are We Treating?

• With no oral intake (food or fluid)
• Death from dehydration in days
• Death from starvation 30-60 days
• Subjective hunger and thirst
• Unintentional weight loss

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Hunger and Thirst

• How common are hunger and thirst at the end of
  life?
• 32 competent, aware adult patients on a
  palliative care ward
• Assessed for hunger, thirst, dry mouth as well as
  amount of oral intake needed to relieve
• 20 (64) had no hunger 11 (34) had some hunger
  initially
• 20 (64) had no or only initial thirst
• Small amounts of food, oral fluid provided relief

McCann RM, Hall WJ, Groth-Juncker A. JAMA 1994
Oct 26 272(16) 1263-6
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What About Unintentional Weight Loss?
Morley JE, Thomas DR, Wilson MMG. Am J Clin Nutr
2006 83(4) 735-43
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What About Unintentional Weight Loss?
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What About Unintentional Weight Loss?
Morley JE, Thomas DR, Wilson MMG. Am J Clin Nutr
2006 83(4) 735-43
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Can we Treat Unintentional Weight Loss?

• Increased body weight and body fatness on EN or
  PN
• 35-55kcal/kg
• Neither EN nor PN shows any improvement in any
  of
• Morbidity
• Mortality
• Hospital length of stay

Bozetti F. JPEN 1989 July-Aug 13(4) 406-20
Mercadante S. Support Care Cancer 1998 Mar
6(2) 85-93
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What Other Limitations?

• EN Complications
• Patient and RN/MD acceptance
• Tube migrations
• Diarrhea
• Tube obstruction
• Esophagitis with NG/OG/large bore
• Nasal erosions/otitis media/sinusitis
• Tracheoesophageal fistula
• Aspiration
• Refeeding syndrome

• PN Complications
• CVC related
• Catheter sepsis
• Metabolic incl. Refeeding
• Cholecystitis
• Gastroparesis
• Hypertriglyceridemia
• Cholestasis/cirrhosis
• Metabolic bone disease
• Renal failure and renal calculi

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Informed Consent

• Informed consent is the process by which a fully
  informed patient can participate in choices about
  his or her health care
• the nature of the decision/procedure
• reasonable alternatives to the proposed
  intervention
• the relevant risks, benefits, and uncertainties
  related to each alternative
• assessment of patient understanding
• the acceptance of the intervention by the patient

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Amyotrophic Lateral Sclerosis (ALS)

• 55 year old man
• Diagnosis 2 years ago based on arm and leg
  weakness, shortness of breath, and new onset
  dysphagia
• Usual body weight is 76kg now 67kg

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Amyotrophic Lateral Sclerosis (ALS)

• Progressive neurodegenerative disorder
• Incidence is 2/100,000 prevalence 6/100,000
• Painless weakness and bulbar symptoms, including
  dysphagia
• Life expectancy at diagnosis is 3-5 years

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Amyotrophic Lateral Sclerosis (ALS)

• He had been told that his swallowing would worsen
  over time at the time of diagnosis, he declined
  placement of a PEG tube
• He now returns asking for an enteral tube to be
  placed
• His FEV1 now is lt20 of expected

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Amyotrophic Lateral Sclerosis (ALS)

• When asked why he changed his mind about a PEG
  tube, he says that he would like to live longer,
  as he is embroiled in a legal battle with his
  estranged spouse
• His daughter supports his decision his son says
  that he is being irrational and shouldnt be
  allowed to get the PEG placed

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Amyotrophic Lateral Sclerosis (ALS)

• Diagnostic imaging has refused to place the tube
• If the tube is placed surgically, he will require
  a few days in the ICU on a ventilator
• Should the tube be placed? Is this informed
  consent?

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Amyotrophic Lateral Sclerosis (ALS)

• Enteral feeding does not prolong survival in ALS
• Decrease anxiety related to eating
• Increased ease of access to nutrition and
  hydration
• Insertion of tube is associated with 30 day
  morbidity and mortality of 9.6 and 4.1

Mitsumoto H et al. Amyotroph Lateral Scler Other
Motor Neuron Disord 20034(3)177-85.
Strong MJ, Rowe A, Rankin RN. J Neurol Sci
1999169(1-2)128-32.
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Amyotrophic Lateral Sclerosis (ALS)

• If a patient has ALS, when should enteral access
  be considered?
• Risk of tube placement increases if FEV1 is less
  than 50 of predicted because of respiratory
  muscle weakness

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Amyotrophic Lateral Sclerosis (ALS)

• Southern Alberta Home Enteral Nutrition Program
• Nurse Educator meets with patients newly
  diagnosed through the multi-disciplinary ALS
  clinic in Calgary
• Approximately 50 of patients with ALS elect to
  have an enteral tube placed
• Some patients with a tube elect to not use them

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Amyotrophic Lateral Sclerosis (ALS)

• How do you approach the decision?
• Talk about it early, while safe placement of a
  tube is still an option
• Be clear about how an enteral device will be
  placed
• Be realistic about the lack of impact on survival
• Be accepting of their decision
• May be based on religious or cultural beliefs
  that you do not share or are unaware of
• Emphasize that their decision will not impact
  comfort care at the end of life

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Amyotrophic Lateral Sclerosis (ALS)

• Is he making an informed decision about nutrition
  support? Do his family members opinions matter?
• Can diagnostic imaging decline to place a tube?
  Can (or should) ICU decline him a bed?
• Do his reasons for changing his mind influence
  our opinions?

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Dementia

• 88 year old woman with advanced dementia
• Multiple other medical problems
• Hypertension
• 2 strokes
• Type II diabetes
• Osteoarthritis
• Two hip replacements
• 3 pneumonias in 9 months

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Dementia

• You are asked to see her in hospital during her
  most recent pneumonia admission to recommend
  enteral nutrition to prevent further pneumonias
• Her adult daughter (who has authority to make
  medical decisions) wants to know how this will
  improve her health and longevity before consenting

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Dementia

• Can nutrition support
• Prevent aspiration?
• Delay or prevent malnutrition better than oral
  nutrition?
• Provide comfort without reversing the underlying
  disease?
• Prevent death?

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Dementia

• Aspiration pneumonia
• Where do the bacteria come from?
• Gastric contents are relatively sterile
• Oropharyngeal flora cause most infectious
  aspiration pneumonias

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Dementia

• Non-randomized prospective trial
• Orally fed adults with oropharyngeal dysphagia
  had fewer aspiration episodes than those fed by
  tube
• Jejunostomy tubes do not result in less
  aspiration pneumonia than gastric tubes

Fienberg MJ et al. Dysphagia 1996 11 104-109
Lazarus BA et al. Arch Phys Med Rehabil 1990
71 46-53
Fox KA et al. Am J Surg 1995 170 564-566
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Dementia

• Is survival improved?
• Careful hand feeding by caregivers has similar
  mortality to tube feeds
• Tube placement can cause mortality
• Baseline mortality in people with dementia is
  very high makes comparison difficult

Franzoni S et al. J Am Geriatr Soc 1996 44
1366-1370
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Dementia

• Review has shown
• No improvement in bedsores
• No improvement in infections
• No improvement in functional status
• No improvement in patient comfort

Finucane TE, Christmas C, Travis K. JAMA 1999
282(14) 1365-1370
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Dementia

• How can a decision be made?
• Availability of hand feeding and one-on-one care
• Understanding of natural history of underlying
  illness
• Be clear about benefits/limitations of enteral
  feeding

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Can These Conclusions be Generalized?

• Prognosis is of primary importance
• Malignancy or non-malignancy
• Presence or absence of symptoms
• Hunger, thirst
• Effects of intervention
• Oral, Enteral, Parenteral
• Complications associated with intervention
• Realistic evaluation of effect on morbidity and
  mortality