ethical principles autonomy beneficence nonmaleficence · v ganzini l, goy e r, miller l l, harvath...

© ESPEN 2003. For personal use only. 1

ESPEN Congress Cannes2003

Organised by the Israel Society for ClinicalNutrition

Session: Nutrition and Palliative Care

Ethical Issues: Refusal to Eat in the Elderly

Doctor Esther Lee Marcus and Professor Elliot M. BerryJerusalem, Israel

email [email protected]

Education and Clinical Practice Programme

v AutonomyAutonomyvv BeneficenceBeneficencevv NonmaleficenceNonmaleficencevv Justice Justicevv Sanctity of Life Sanctity of Life

Ethical Principles Ethical Principles


““The principle ofThe principle ofpatient patient autonomyautonomyrequires thatrequires thatphysicians respect thephysicians respect thedecision to forgo decision to forgo life-life-sustaining treatmentsustaining treatmentof a patient whoof a patient whopossesses decision-possesses decision-making capacity.making capacity.””

American Medical AssociationAmerican Medical AssociationCode of Medical EthicsCode of Medical Ethics

““Life-sustaining treatmentLife-sustaining treatment is any is anytreatment that serves to prolongtreatment that serves to prolonglife without reversing thelife without reversing theunderlying medicalunderlying medicalconditioncondition……..may include..may include……mechanical ventilationmechanical ventilation…….and.andartificial nutrition and hydrationartificial nutrition and hydration..””

American Medical AssociationAmerican Medical AssociationCode of Medical EthicsCode of Medical Ethics


““November 1998: Iris November 1998: Iris wonwon’’t eat, is barelyt eat, is barelydrinkingdrinking……....I try a method that has always workedI try a method that has always workedbefore before –– putting little pieces or spoonfuls in her putting little pieces or spoonfuls in hermouth. Now she doesnmouth. Now she doesn’’t push them away, but hert push them away, but hermouth remains closedmouth remains closed…….Without bother or fuss,.Without bother or fuss,as if someone she trusted had helped her to comeas if someone she trusted had helped her to cometo a decision, to a decision, she stopped eating andshe stopped eating anddrinking.drinking. Gentle pressure from those kind nurses, Gentle pressure from those kind nurses,but no insistence. No horror of but no insistence. No horror of being put on abeing put on adripdrip”” John John BayleyBayley, Iris and Her Friends, 2000, Iris and Her Friends, 2000

Iris Murdoch &Iris Murdoch &John John BayleyBayley

The grandfather, 81,The grandfather, 81,one day one day ““removedremovedhis false teeth andhis false teeth andannounced that heannounced that hewas was no longerno longergoing to eat orgoing to eat ordrinkdrink. Three weeks. Three weekslater, to the day, helater, to the day, hedied...to die was died...to die was aadecision his innerdecision his innerforceforce had obviously had obviouslydecided upon.decided upon.””

Jury M, Jury D.Jury M, Jury D.GrampGramp..


Is Tube feedingIs Tube feeding

medical treatmentmedical treatment

or basic care ?or basic care ?

vv Food is essential for life Food is essential for life

vv Cultural, religious and Cultural, religious andsymbolic meaning of foodsymbolic meaning of food

vv Healthcare Healthcareprofessionals areprofessionals arereluctant to deny theirreluctant to deny theirpatients food and fluid.patients food and fluid.

vv Family members do not Family members do notwant their loved ones to diewant their loved ones to diefrom hungerfrom hunger

Tube feeding Tube feeding –– Basic care Basic care


vv InvasiveInvasive

vv Requires skilled medical, nursing Requires skilled medical, nursing

and nutritional expertise and nutritional expertise

vv Associated with complications Associated with complications

vv Consent of a competent patient Consent of a competent patient

must be given must be given

Tube feeding - MedicalTube feeding - Medicaltherapytherapy

What do What do appleapplepiepie and andmotherhoodmotherhoodhave to do withhave to do withfeeding tubesfeeding tubesand caring forand caring forthe patient?the patient?

SlomkaSlomka J. Arch Intern Med 1995; 155: 1258-1263 J. Arch Intern Med 1995; 155: 1258-1263..


v AutonomyAutonomy

vv BeneficenceBeneficencevv NonmaleficenceNonmaleficencevv JusticeJusticevv Sanctity of LifeSanctity of Life

Ethical Principles Ethical Principles

v Prolonging lifeProlonging life

vv Improving health Improving health

vv Preventing disease Preventing disease

vv Improving quality of life Improving quality of life

vv Palliating terminal illness Palliating terminal illness

Objectives of therapyObjectives of therapy


EvidenceEvidence

vv StrokeStroke

vv ALS ALS

vvCatabolic StatesCatabolic States

No evidenceNo evidence

vvTerminal dementiaTerminal dementia

vvTerminally-ill cancer patientsTerminally-ill cancer patients

BeneficenceBeneficence

Gillick M RGillick M R


v AutonomyAutonomyvv Beneficence Beneficencevv NonmaleficenceNonmaleficencevv JusticeJusticevv Sanctity of Life Sanctity of Life

Ethical PrinciplesEthical Principles

v Complication of tube feedingComplication of tube feedingvv Lack of enjoyment of food Lack of enjoyment of foodvv Prolongation of suffering Prolongation of sufferingvv Need to restrain the patient Need to restrain the patientvv Death from starvation - Death from starvation - ““good deathgood death””

GanziniGanzini L et al. Nurses' experiences with L et al. Nurses' experiences withhospice patients who refuse food and fluids tohospice patients who refuse food and fluids tohasten death. N hasten death. N EnglEngl J Med 2003;349:359-65. J Med 2003;349:359-65.

NonmaleficenceNonmaleficence


v AutonomyAutonomyvv Beneficence Beneficencevv NonmaleficenceNonmaleficencevv JusticeJusticevv Sanctity of LifeSanctity of Life


v Elderly patients should haveElderly patients should haveequal access to treatmentequal access to treatmentregardless of age.regardless of age.

vv Percutaneous gastrostomy Percutaneous gastrostomy(PEG) is sometimes inserted(PEG) is sometimes insertedfor administrative reasons tofor administrative reasons tofacilitate discharge of patientsfacilitate discharge of patientsor to reduce nursing burden.or to reduce nursing burden.

vv This may not necessarily be This may not necessarily bein the interests of the patient.in the interests of the patient.

JusticeJustice


v AutonomyAutonomyvv Beneficence Beneficencevv NonmaleficenceNonmaleficencevv Justice Justicevv Sanctity of LifeSanctity of Life


The preservation of lifeThe preservation of lifetakes precedence overtakes precedence overall other considerations.all other considerations.

Sanctity of lifeSanctity of life


India IndiaThe The ““naturalnatural”” death while not death while noteating: a type of palliative care ineating: a type of palliative care inBanaras, India.Banaras, India.

Justice C. J Palliat Care 1995; 11: 38-42. Justice C. J Palliat Care 1995; 11: 38-42.

Cultural Differences in theCultural Differences in theAttitude Towards FoodAttitude Towards Food

Refusal and Tube FeedingRefusal and Tube Feeding

EnglandEnglandFluid given by a tube is regarded byFluid given by a tube is regarded bylaw as medical treatmentlaw as medical treatment

LennardLennard-Jones J E. Ethical and legal aspects of-Jones J E. Ethical and legal aspects ofclinical hydration and nutritional support. Aclinical hydration and nutritional support. Areport for the British Association for report for the British Association for ParenteralParenteraland and EnteralEnteral Nutrition, 1998. Nutrition, 1998.

.




Greece GreeceThe milk and the honey: ethics ofThe milk and the honey: ethics ofartificial nutrtition and hydrationartificial nutrtition and hydrationof the elderly on the other side ofof the elderly on the other side ofEurope.Europe. Garanis-Papadatos T. J Med Ethics 1999; 25: 447-450Garanis-Papadatos T. J Med Ethics 1999; 25: 447-450..



Spain SpainEthical problems of artificial nutritionEthical problems of artificial nutritionwithdrawal: reflections from thewithdrawal: reflections from theperspective of Mediterranean cultureperspective of Mediterranean culture

Gomez Rubi J A. Nutr Hosp 2000: 15:169-174. Gomez Rubi J A. Nutr Hosp 2000: 15:169-174. ..




Israel Israel

Unlimited human autonomyUnlimited human autonomy- a cultural bias?- a cultural bias?

Glick S M. N Glick S M. N EnglEngl J Med 1997; 336: 954-956 J Med 1997; 336: 954-956..

.



Percent of nurses who would feedPercent of nurses who would feeda terminally-ill competent 75-year olda terminally-ill competent 75-year old

woman with cancer who refuses to eatwoman with cancer who refuses to eat

00101020203030404050506060707080809090

100100

Arizona

ArizonaAustralia

AustraliaC

alifornia

California

Canada

CanadaChina

ChinaFinland

Finland

IsraelSw

eden

Davidson B & al.Davidson B & al.Cancer NursCancer Nurs1990;13: 286-292.1990;13: 286-292.


Percent of Nurses who would FeedPercent of Nurses who would Feeda Severely Demented Patienta Severely Demented Patient

001010

2020303040405050

6060707080809090

100100

Arizona

Arizona

Australia

Australia

California

California

Canada

Canada

China

China

FinlandFinland

IsraelIsraelS

weden

Sw

edenNorberg A & al.Norberg A & al.Nurs EthicsNurs Ethics1994; 1: 3-13.1994; 1: 3-13.

v AutonomyAutonomyvv Beneficence Beneficencevv NonmaleficenceNonmaleficencevv Justice Justicevv Sanctity of Life Sanctity of Life

Ethical ConflictEthical Conflict

When ethical principles implyWhen ethical principles implydifferent care actions, the problemdifferent care actions, the problemcan be solved & ethical dilemmascan be solved & ethical dilemmashandled by giving priority to one orhandled by giving priority to one ormore of these considerations.more of these considerations.


vvPatientPatientvvFamilyFamilyvv Staff Staff

Open DiscussionOpen Discussion

There is no one answer !There is no one answer !

““Go the way, eat thyGo the way, eat thybread with joy andbread with joy anddrink thy wine withdrink thy wine witha merry hearta merry heart”” Ecclesiastes 9,7lesiastes 9,7

““.. and the years drew.. and the years drewnigh, when thou nigh, when thou shaltshaltsay say ‘‘I have no pleasure inI have no pleasure inthemthem’”’”

Ecclesiastes 12,1Ecclesiastes 12,1


v Angus F, Angus F, BurakoffBurakoff R. The R. The percutaneouspercutaneous endoscopicendoscopic gastrostomygastrostomy tube: medical and ethical issues in placement. tube: medical and ethical issues in placement. Am J Am J GastroentrolGastroentrol 2003; 98: 272-277. 2003; 98: 272-277.vv AschAsch D A, Faber- D A, Faber-LangendoenLangendoen K, K, SheaShea J A, Christakis N A. J A, Christakis N A. The sequence of withdrawing life-sustaining treatment from The sequence of withdrawing life-sustaining treatment from patients. Am J Med 1999; 107: 153-156. patients. Am J Med 1999; 107: 153-156.vv Council of Ethical and Judicial Affairs. American Medical Council of Ethical and Judicial Affairs. American Medical Association. Opinion E.220: Withholding or withdrawing life- Association. Opinion E.220: Withholding or withdrawing life- sustaining medical treatment. In: Code of medical ethics: sustaining medical treatment. In: Code of medical ethics: current opinion with annotations. Southern Illinois University current opinion with annotations. Southern Illinois University School of Law. Chicago: American Medical Association, School of Law. Chicago: American Medical Association, 2002-2003. 2002-2003.vv Davidson B, Vander Davidson B, Vander LaanLaan R, Davis A, et al. Ethical reasoning R, Davis A, et al. Ethical reasoning associated with the feeding of terminally ill elderly cancer associated with the feeding of terminally ill elderly cancer patients. An international perspective. Cancer patients. An international perspective. Cancer NursNurs 1990; 1990; 13: 286-292. 13: 286-292.vv Fergusson A. Letting vegetative patients die. BMJ Fergusson A. Letting vegetative patients die. BMJ 1992; 1992; 305: 1506. 305: 1506.

ReferencesReferences


v GanziniGanzini L, Goy E R, Miller L L, L, Goy E R, Miller L L, HarvathHarvath T A, Jackson A, T A, Jackson A, DeloritDelorit M M A. Nurses' experiences with hospice patients who refuse food A. Nurses' experiences with hospice patients who refuse food and fluids to hasten death. N and fluids to hasten death. N EnglEngl J Med 2003; 349:359-365. J Med 2003; 349:359-365.vv Garanis-PapadatosGaranis-Papadatos T, T, KatsasKatsas A. The milk and the honey: ethics A. The milk and the honey: ethics of artificial nutrition and hydration of the elderly on the other of artificial nutrition and hydration of the elderly on the other side of Europe. J Med Ethics 1999; 25: 447-450. side of Europe. J Med Ethics 1999; 25: 447-450.vv GillickGillick M R. Rethinking the role of tube feeding in patients with M R. Rethinking the role of tube feeding in patients with advanced dementia. N advanced dementia. N EnglEngl J Med 2000; 342: 206-210. J Med 2000; 342: 206-210.vv Glick S M. Unlimited human autonomy - a cultural bias? N Glick S M. Unlimited human autonomy - a cultural bias? N EnglEngl J Med 1997; 336: 954-956. J Med 1997; 336: 954-956.vvGomez Gomez RubiRubi JA. Ethical problems of artificial nutrition JA. Ethical problems of artificial nutrition withdrawal: reflections from the perspective of Mediterranean withdrawal: reflections from the perspective of Mediterranean

culture. culture. Nutr Hosp 2000: 15:169-174Nutr Hosp 2000: 15:169-174..vv Huang Z-B, Huang Z-B, AhronheimAhronheim J C. Nutrition and hydration in J C. Nutrition and hydration in terminally ill patients: an update. terminally ill patients: an update. ClinClin GeriarGeriar Med 2000; Med 2000; 16: 313-325. 16: 313-325.vv Hughes N, Neal RD. Adults with terminal illness: a literature Hughes N, Neal RD. Adults with terminal illness: a literature review of their needs and wishes for food. J Adv review of their needs and wishes for food. J Adv NursNurs 2000; 32 : 1101-1107. 2000; 32 : 1101-1107.vv Justice C. The Justice C. The ““naturalnatural”” death while not eating: a type of death while not eating: a type of palliative care in palliative care in BanarasBanaras, India. J , India. J PalliatPalliat Care 1995; 11: 38-42. Care 1995; 11: 38-42.


vvLennardLennard-Jones J E. Ethical and legal aspects of clinical-Jones J E. Ethical and legal aspects of clinical hydration and nutritional support. A report for the British hydration and nutritional support. A report for the British Association for Association for ParenteralParenteral and and EnteralEnteral Nutrition. 1998. Nutrition. 1998.vvLennardLennard-Jones J E. Giving or withholding fluid and nutrients:-Jones J E. Giving or withholding fluid and nutrients: ethical and legal aspects. J R ethical and legal aspects. J R CollColl Physicians Physicians LondLond 1999; 33: 39-45. 1999; 33: 39-45.vv Marcus E- L, Berry E M. Refusal to eat in the elderly. Marcus E- L, Berry E M. Refusal to eat in the elderly. NutrNutr Rev Rev 1998; 56: 163-171. 1998; 56: 163-171.vv NorbergNorberg A, A, HirschfeldHirschfeld M, Davidson B, et al. Ethical reasoning M, Davidson B, et al. Ethical reasoning concerning the feeding of severely demented patients: an concerning the feeding of severely demented patients: an international perspective. international perspective. NursNurs Ethics 1994; 1: 3-13. Ethics 1994; 1: 3-13.vv Quill T E, Quill T E, ByockByock I R. Responding to intractable terminal suffering: I R. Responding to intractable terminal suffering: the role of terminal sedation and voluntary refusal of food and the role of terminal sedation and voluntary refusal of food and fluids. ACP-ASIM End-of-Life Care Consensus Panel. American fluids. ACP-ASIM End-of-Life Care Consensus Panel. American College of Physicians College of Physicians –– American Society of Internal Medicine. American Society of Internal Medicine. Ann Intern Med 2000; 132: 408-414. Ann Intern Med 2000; 132: 408-414.vv SkellySkelly R H. Are we using R H. Are we using percutaneouspercutaneous endoscopicendoscopic gastrostomygastrostomy appropriately in the elderly? appropriately in the elderly? CurrCurr OpinOpin ClinClin NutrNutr MetabMetab Care Care 2002; 5: 35-42. 2002; 5: 35-42.vv SlomkaSlomka J. What do apple pie and motherhood have to do with J. What do apple pie and motherhood have to do with feeding tubes and caring for the patient? Arch Intern Med 1995; feeding tubes and caring for the patient? Arch Intern Med 1995; 155: 1258-1263. 155: 1258-1263.


ethical principles autonomy beneficence nonmaleficence · v ganzini l, goy e r, miller l l, harvath...

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