Nutrition, Eating, and Palliative CareNutrition, Eating, and Palliative Care
Ted St. Godard MA MDTed St. Godard MA MD
I.I. Psycho-social aspects of eating and not eatingPsycho-social aspects of eating and not eating ““starving,” “wasting,” some patientsstarving,” “wasting,” some patients
II.II. Approach to patients and familiesApproach to patients and families
III.III. Nutrition challenges in the gravely illNutrition challenges in the gravely ill
IV.IV. Cachexia versus Starvation (? Decreased PO = Cachexia versus Starvation (? Decreased PO = starvation)starvation)
V.V. Role for Artificial NutritionRole for Artificial Nutrition Yes, no, maybe so?Yes, no, maybe so?
VI.VI. ““Palliative Perspective”Palliative Perspective”
““Nothing would be Nothing would be more tiresome than more tiresome than eating and drinking eating and drinking if [they were not] a if [they were not] a pleasure as well as pleasure as well as a necessity.” a necessity.”
VoltaireVoltaire
Meals/eating highly “loaded”Meals/eating highly “loaded”celebrations, milestones, happy celebrations, milestones, happy
times, sad times, memoriestimes, sad times, memoriesMany or most patients with terminal Many or most patients with terminal
illness ultimately are unable to eat illness ultimately are unable to eat enough to avoid weight loss and enough to avoid weight loss and maintain activity levelsmaintain activity levels
PatientsPatientsBody image? Sexuality?Body image? Sexuality?Embarrassment, shame, guilt, Embarrassment, shame, guilt,
frustrationfrustrationWeaker and weaker, smaller and Weaker and weaker, smaller and
smallersmaller““I’m wasting away…”I’m wasting away…”
FamiliesFamiliesFrustration, anger Frustration, anger LO weaker, smaller, frailer, but LO weaker, smaller, frailer, but
“won’t eat”“won’t eat”Try harder, vicious circleTry harder, vicious circleConflict Conflict ““We can’t just let her/him starve…”We can’t just let her/him starve…”
““Starvation”Starvation”We live in a world where this ought We live in a world where this ought
not to happennot to happenUnconscionableUnconscionable
““Wasting”Wasting”Inefficient, shameful, immoral? Inefficient, shameful, immoral?
Nutrition is a basic animal needNutrition is a basic animal needIs feeding a fundamental Is feeding a fundamental
component of care? A right?component of care? A right?
38 male, metastatic esophageal Ca.38 male, metastatic esophageal Ca.Presented with pneumo-mediastinum Presented with pneumo-mediastinum PEGPEGCachectic, ate (copiously) for monthsCachectic, ate (copiously) for months
53 female, metastatic ovarian Ca., bowel 53 female, metastatic ovarian Ca., bowel obstructionobstructionObese, eating (copiously) around NGObese, eating (copiously) around NGIncreasing emesis… “How will we feed her Increasing emesis… “How will we feed her
now?”now?”
73 male, metastatic hepato-cellular Ca.,73 male, metastatic hepato-cellular Ca.,Frail, bedbound, cachectic, icteric Frail, bedbound, cachectic, icteric ““Doctor, he no eat. Make him eat”Doctor, he no eat. Make him eat”
53 female, metastatic breast Ca., bowel 53 female, metastatic breast Ca., bowel obstruction (multiple omental mets, abd/pelvic obstruction (multiple omental mets, abd/pelvic adenopathy)adenopathy)Looks well, ambulatingLooks well, ambulating““So now I just starve to death?”So now I just starve to death?”
Goals of CareGoals of Care
(Maintain quality of life; avoid prolongation of dying)(Maintain quality of life; avoid prolongation of dying)
WHO definition:WHO definition:Palliative care is an approach that improves Palliative care is an approach that improves
the quality of life of patients and their families the quality of life of patients and their families facing the problem associated with life-facing the problem associated with life-threatening illness, through the prevention and threatening illness, through the prevention and relief of suffering by means of early relief of suffering by means of early identification and impeccable assessment and identification and impeccable assessment and treatment of pain and other problems, treatment of pain and other problems, physical, psychosocial and spiritual.physical, psychosocial and spiritual.
WHO definition:WHO definition:……improves quality of life of patients improves quality of life of patients and their and their
families families …………prevention and relief of suffering prevention and relief of suffering ……..early identification,… assessment and ..early identification,… assessment and
treatment oftreatment of……. problems, physical, psychosocial and . problems, physical, psychosocial and
spiritual.spiritual.
““Active Active Treatment”Treatment”
Palliative Palliative CareCare
““Active Active Treatment”Treatment”
Palliative Palliative CareCare
Cure, restore function, prolong life, provide comfortCure, restore function, prolong life, provide comfort
Comfort alwaysComfort always
Prolong life Prolong life
Restore function Restore function
CureCure
Failure to achieve balanceFailure to achieve balance1.1. Decreased PO intakeDecreased PO intake
Anorexia, xerostomia, altered Anorexia, xerostomia, altered taste/smell, odyno/dysphagiataste/smell, odyno/dysphagia
2.2. Decreased absorptionDecreased absorption3.3. Altered energy utilizationAltered energy utilization
Inadequate ingestionInadequate ingestion
““Developed” countries: medical Developed” countries: medical reasons reasons
Worldwide: lack of foodWorldwide: lack of food
Anorexia (loss of appetite)Anorexia (loss of appetite)Multi-factorialMulti-factorial““Cytokines”: central (hypothalamic) Cytokines”: central (hypothalamic)
and peripheral (via vagus nerve) and peripheral (via vagus nerve) influencesinfluences
Huge frustration for families, source Huge frustration for families, source of much tensionof much tension
Anorexigenic Anorexigenic NeuropeptideNeuropeptide
NeurotensinNeurotensin
MelanocortinMelanocortin
CRFCRF
Orexigenic Orexigenic NeuropeptideNeuropeptide
GlucogonGlucogon
CCKCCKLeptinLeptin
Blood Brain BarrierBlood Brain Barrier
NPYNPY
AGRPAGRP
MCHMCH NeurotensinNeurotensin
MelanocortinMelanocortin
CRFCRF
GlucogonGlucogon
CCKCCKLeptinLeptin
NPYNPY
AGRPAGRP
MCHMCH
CNS CytokinaseCNS Cytokinase
CytokinaseCytokinase
CNTFCNTFIL-1IL-1
CNS CytokinaseCNS Cytokinase
CNTFCNTFIL-1IL-1
Food IntakeFood Intake
Energy ExpenditureEnergy Expenditure Food IntakeFood Intake
Energy ExpenditureEnergy Expenditure
SeratoninSeratonin
Blood Brain BarrierBlood Brain Barrier
IL-6IL-6
TryptophanTryptophan
GlucocorticoidsGlucocorticoids
ACTHACTH
Anorexigenic Anorexigenic NeuropeptideNeuropeptide
Orexigenic Orexigenic NeuropeptideNeuropeptide
IL-1IL-1IL-6IL-6
TNF-TNF-INF-INF-
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++
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++
++
++++
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++
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++
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AA BB
Approach:Approach:1.1. Symptom control (nausea, pain)Symptom control (nausea, pain)2.2. Meal selection, timing, Meal selection, timing,
portion/presentationportion/presentation3.3. Avoid/reduce conflict (eat, drink, be Avoid/reduce conflict (eat, drink, be
merry): “eat what, where, when, as merry): “eat what, where, when, as much/little as you want”much/little as you want”
Progestational agents: Progestational agents: MegestrolMegestrol
Corticosteroids: Corticosteroids: DexamethasoneDexamethasone
4. Pharmacology in anorexia T4. Pharmacology in anorexia Txx
?Metoclopromide?Metoclopromide ?Cannabinoids?Cannabinoids ?Melatonin (decrease TNF)?Melatonin (decrease TNF) ?NSAIDS (decrease ?NSAIDS (decrease
inflammatory mediators)inflammatory mediators)
4. Pharmacology in anorexia 4. Pharmacology in anorexia TTxx
Appetite stimulants may increase intake, Appetite stimulants may increase intake, body weight, and quality of life, but they body weight, and quality of life, but they do not affect prognosisdo not affect prognosis in the terminally ill in the terminally ill
Dy, M. “Enteral and Parenteral Nutrition in Dy, M. “Enteral and Parenteral Nutrition in Terminally Ill Cancer Patients: a Review of Terminally Ill Cancer Patients: a Review of the Literature.” the Literature.” American Journal of American Journal of Hospice and Palliative MedicineHospice and Palliative Medicine. 2006; 23 . 2006; 23 (5): 369-377(5): 369-377
NauseaNauseaEmesisEmesisDiarrheaDiarrheaSurgical/anatomical changesSurgical/anatomical changes
3. Altered energy metabolism3. Altered energy metabolism
Thomas, D. “Distinguishing Starvation from Cachexia.” Thomas, D. “Distinguishing Starvation from Cachexia.” Clinics Clinics in Geriatric Medicinein Geriatric Medicine. 2002; 18: 883-891. 2002; 18: 883-891
Starvation: pure protein/energy deficiency Starvation: pure protein/energy deficiency (under-nutrition)(under-nutrition)
Cachexia: cytokine-induced wasting of protein Cachexia: cytokine-induced wasting of protein and energy stores, and energy stores, caused by effects of diseasecaused by effects of diseaseMalignancy, COPD, ESRD, CHF, AIDS, RAMalignancy, COPD, ESRD, CHF, AIDS, RARemarkably resistant to hyper-caloric feedingRemarkably resistant to hyper-caloric feeding
Thomas, D. “Distinguishing Starvation from Cachexia.” Thomas, D. “Distinguishing Starvation from Cachexia.” Clinics Clinics in Geriatric Medicinein Geriatric Medicine. 2002; 18: 883-891. 2002; 18: 883-891
Biochemical markers represent nutritional status Biochemical markers represent nutritional status or illness severity?or illness severity?
Acute-phase cytokine responseAcute-phase cytokine responseStrong inverse correlation between IL-2R and Strong inverse correlation between IL-2R and
albumin, pre-albumin, cholesterol, Hgbalbumin, pre-albumin, cholesterol, HgbCommon pathway to reduction in albumin, etc. Common pathway to reduction in albumin, etc.
may be cytokine induction, rather than absence may be cytokine induction, rather than absence of nutrientsof nutrients
Starvation Cachexia
Appetite Late suppression Early suppression
BMI Not predictive of mortality Predictive of mortality
Albumin Low in late phase Low in early phase
Cholesterol May remain normal Low
Total lymphocyte count
Low, responds to re-feeding
Low, no response to re-feeding
Cytokines Little data Elevated
Inflammation Usually absent Present
With re-feeding Reversible Resistant
Thomas, D. “Distinguishing Starvation from Cachexia.” Thomas, D. “Distinguishing Starvation from Cachexia.” Clinics Clinics in Geriatric Medicinein Geriatric Medicine. 2002; 18: 883-891. 2002; 18: 883-891
Ethical PrinciplesEthical PrinciplesAutonomyAutonomyBeneficenceBeneficenceNon-maleficenceNon-maleficenceInformed consentInformed consent
Beauchamp and Childress. Beauchamp and Childress. Principles of Biomedical Ethics. Principles of Biomedical Ethics. New New York: Oxford University Press. 1994 (4York: Oxford University Press. 1994 (4thth Ed.) Ed.)
Informed consent. Patient/surrogate:Informed consent. Patient/surrogate:Is able to communicate consistent preferenceIs able to communicate consistent preferenceUnderstands risks, benefits, and alternativesUnderstands risks, benefits, and alternatives““Appreciates” the informationAppreciates” the informationUses rational thinking to arrive at decisionUses rational thinking to arrive at decision
Beauchamp and Childress. Beauchamp and Childress. Principles of Biomedical Ethics. Principles of Biomedical Ethics. New New York: Oxford University Press. 1994 (4York: Oxford University Press. 1994 (4thth Ed.) Ed.)
Nutrition is a basic animal needNutrition is a basic animal needIs feeding a fundamental Is feeding a fundamental
component of care? A right?component of care? A right?
Artificial, specialized nutritional support is no Artificial, specialized nutritional support is no different from any other life sustaining medical different from any other life sustaining medical therapy that supports bodily function, such as therapy that supports bodily function, such as antibiotics, oxygen therapy, or dialysis.antibiotics, oxygen therapy, or dialysis.
Not offering it is ethically acceptable if benefits Not offering it is ethically acceptable if benefits do not outweigh the risks for a particular do not outweigh the risks for a particular individual.individual.
McClave , S., Ritchie, C. “The Role of Endoscopically McClave , S., Ritchie, C. “The Role of Endoscopically Placed Feeding or Decompression Tubes.” Placed Feeding or Decompression Tubes.” Gasteroenterology Clinics of North AmericaGasteroenterology Clinics of North America. 2006; 35: 83 - . 2006; 35: 83 - 100100
There is no ethical or legal difference There is no ethical or legal difference between withholding a … feeding tube between withholding a … feeding tube versus placing the feeding tube and then versus placing the feeding tube and then later removing itlater removing it
Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Ethics and Evidence.” Palliative and Supportive CarePalliative and Supportive Care. 2006; 4: . 2006; 4: 135 - 143135 - 143
Several Groups of Potential Several Groups of Potential BeneficiariesBeneficiaries1.1. Malignant diseaseMalignant disease2.2. Acute CVAAcute CVA3.3. DementiaDementia4.4. Neurodegenerative diseasesNeurodegenerative diseases
Two Potential BenefitsTwo Potential Benefits1.1. Prolong lifeProlong life2.2. Palliate: improve comfort, enhance Palliate: improve comfort, enhance
quality of life (for patients and their quality of life (for patients and their care-givers/loved ones)care-givers/loved ones)
1.1. Patients with MalignanciesPatients with MalignanciesDespite increased nutrient delivery, trials Despite increased nutrient delivery, trials
show disappointing results in improving show disappointing results in improving clinical outcomeclinical outcome
Improvements in biochemical markers Improvements in biochemical markers inconsistently correlate with objective inconsistently correlate with objective clinical benefitsclinical benefits
Thomas, D. “Distinguishing Starvation from Thomas, D. “Distinguishing Starvation from Cachexia.” Cachexia.” Clinics in Geriatric MedicineClinics in Geriatric Medicine. . 2002; 18: 883-8912002; 18: 883-891
1.1. Patients with MalignanciesPatients with Malignancies?survival benefit if PEG in early head ?survival benefit if PEG in early head
and neck cancers (tolerate treatments and neck cancers (tolerate treatments better)better)
Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Ethics and Evidence.” Palliative and Supportive CarePalliative and Supportive Care. 2006; 4: . 2006; 4: 135 - 143135 - 143
Dy, M. “Enteral and Parenteral Nutrition in Terminally Ill Cancer Dy, M. “Enteral and Parenteral Nutrition in Terminally Ill Cancer Patients: a Review of the Literature.” Patients: a Review of the Literature.” American Journal of American Journal of Hospice and Palliative MedicineHospice and Palliative Medicine. 2006; 23 (5): 369-377. 2006; 23 (5): 369-377
1.1. Patients with MalignanciesPatients with MalignanciesLittle evidence was found for benefits Little evidence was found for benefits
from enteral or parenteral nutrition in from enteral or parenteral nutrition in terminally ill cancer patients, terminally ill cancer patients, other than other than for those with mechanical for those with mechanical gastrointestinal tract obstructiongastrointestinal tract obstruction
Hunger Hunger Often not notedOften not notedAmeliorated usually with small amounts Ameliorated usually with small amounts
food/drinkfood/drink
Dy, M. “Enteral and Parenteral Nutrition in Terminally Ill Cancer Dy, M. “Enteral and Parenteral Nutrition in Terminally Ill Cancer Patients: a Review of the Literature.” Patients: a Review of the Literature.” American Journal of American Journal of Hospice and Palliative MedicineHospice and Palliative Medicine. 2006; 23 (5): 369-377. 2006; 23 (5): 369-377
2.2. Acute CVA with DysphagiaAcute CVA with Dysphagia↑ ↑ SurvivalSurvival↓ ↓ Morbidity Morbidity
Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Ethics and Evidence.” Palliative and Supportive CarePalliative and Supportive Care. 2006; 4: . 2006; 4: 135 - 143135 - 143
2.2. Acute CVA with DysphagiaAcute CVA with DysphagiaRCT compared tube feeds within 7 days of RCT compared tube feeds within 7 days of
admission versus no tube feeding for more admission versus no tube feeding for more than 7 daysthan 7 days
Early tube feeding associated with NS Early tube feeding associated with NS reduction in risk of death (ARR 5.8 %)reduction in risk of death (ARR 5.8 %)
↑ ↑ Survival ? offset by 4.7 % excess of Survival ? offset by 4.7 % excess of survivors who had poorer outcomessurvivors who had poorer outcomes
Dennis, Lewis, Warlow, C. “Effect of Timing and Method of Dennis, Lewis, Warlow, C. “Effect of Timing and Method of Enteral Tube Feeding for Dysphagic Stroke Patients.” Enteral Tube Feeding for Dysphagic Stroke Patients.” LancetLancet. . 2005; 26 (365): 764 - 7722005; 26 (365): 764 - 772
3.3. DementiaDementia 34 % pts. with dementia or cognitive 34 % pts. with dementia or cognitive
impairment have PEGsimpairment have PEGs Prevent aspiration, heal/preven skin Prevent aspiration, heal/preven skin
ulcers, prolong lifeulcers, prolong life Evidence equivocal at best on all countsEvidence equivocal at best on all counts
McClave , S., Ritchie, C. “The Role of Endoscopically Placed McClave , S., Ritchie, C. “The Role of Endoscopically Placed Feeding or Decompression Tubes.” Feeding or Decompression Tubes.” Gasteroenterology Clinics of Gasteroenterology Clinics of North AmericaNorth America. 2006; 35: 83 - 100. 2006; 35: 83 - 100
3.3. DementiaDementia Patients with dementia who are so Patients with dementia who are so
disabled as to stop eating have poor disabled as to stop eating have poor prognosis even with PEGprognosis even with PEG
PEG in demented patients huge risk PEG in demented patients huge risk factor for restraintsfactor for restraints
Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Ethics and Evidence.” Palliative and Supportive CarePalliative and Supportive Care. 2006; 4: . 2006; 4: 135 - 143135 - 143
4.4. Neurodegenerative diseaseNeurodegenerative disease ALSALS
Cognition usually sparedCognition usually spared 10 – 20 % 5-year survival without artificial 10 – 20 % 5-year survival without artificial
ventilation and nutritionventilation and nutrition With support, lifespan can be extended With support, lifespan can be extended
“indefinitely”“indefinitely”
Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Ethics and Evidence.” Palliative and Supportive CarePalliative and Supportive Care. 2006; 4: . 2006; 4: 135 - 143135 - 143
4.4. Neurodegenerative diseaseNeurodegenerative disease PEG in ALSPEG in ALS
Improves nutritionImproves nutrition Makes “eating” easier (lessens fatigue)Makes “eating” easier (lessens fatigue) Decreases time spent feedingDecreases time spent feeding Allays fears of chokingAllays fears of choking ? Improved QOL? Improved QOL
Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Ethics and Evidence.” Palliative and Supportive CarePalliative and Supportive Care. 2006; 4: . 2006; 4: 135 - 143135 - 143
4.4. Neurodegenerative diseaseNeurodegenerative disease PEG in ALSPEG in ALS
Mortality benefit?Mortality benefit? Survival increased only in patients where PEG Survival increased only in patients where PEG
inserted earlyinserted early FVC < 50 % predicted increases risk mortalityFVC < 50 % predicted increases risk mortality
Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ganzini, L. “Artificial Nutrition and Hydration at the End of Life: Ethics and Evidence.” Ethics and Evidence.” Palliative and Supportive CarePalliative and Supportive Care. 2006; 4: . 2006; 4: 135 - 143135 - 143
Several Groups of Potential BeneficiariesSeveral Groups of Potential Beneficiaries1.1. Malignant diseaseMalignant disease2.2. Acute CVAAcute CVA3.3. DementiaDementia4.4. Neurodegenerative diseasesNeurodegenerative diseases
Two Potential BenefitsTwo Potential Benefits1.1. Prolong lifeProlong life2.2. Palliate: improve comfort, enhance quality of Palliate: improve comfort, enhance quality of
life (for patients and their care-givers/loved life (for patients and their care-givers/loved ones)ones)
Issues surrounding eating and Issues surrounding eating and nutrition come to play a very nutrition come to play a very significant role in the lives of people significant role in the lives of people with most end stage illnesseswith most end stage illnesses
Often more difficult for families than Often more difficult for families than patientspatients
Potential source of much conflictPotential source of much conflict
Decreased PO intake, and altered ability Decreased PO intake, and altered ability to metabolize nutrients effectively is to metabolize nutrients effectively is etiologically complexetiologically complex
Depending on goals of care, there Depending on goals of care, there sometimes is a role for medication and/or sometimes is a role for medication and/or artificial nutritionartificial nutrition
““Treatment” must always and everywhere Treatment” must always and everywhere take into considerations of goals of caretake into considerations of goals of care
Edible: “Good to eat and Edible: “Good to eat and wholesome to digest; as wholesome to digest; as a worm to a toad, a toad a worm to a toad, a toad to a snake, a snake to a to a snake, a snake to a pig, a pig to a man, and pig, a pig to a man, and a man to a worm.” a man to a worm.”
Ambrose Bierce Ambrose Bierce