1. The EPEC-O Curriculum is produced by the EPEC TM Project with major funding provided by NCI, with supplemental funding provided by the Lance Armstrong Foundation. Education in Palliative and End-of-life Care - Oncology The Project EPEC-O TM

2. EPECEPECOOEPECEPECOOO EPECEPECOOEPECEPECOOO Module 11 Withdrawing Nutrition, Hydration Module 11 Withdrawing Nutrition, Hydration EPEC - Oncology Education in Palliative and End-of-life Care - Oncology

3. Overall message Withholding or withdrawing a therapy, such as artificial nutrition or hydration, is ethical and legal in some circumstances

4. Objectives l Withholding or withdrawing therapy l Evidence base for artificial nutrition and hydration l Approach to discussing artificial nutrition and hydration l Features of artificial nutrition and hydration that favor use in spite of the evidence l Withholding or withdrawing therapy l Evidence base for artificial nutrition and hydration l Approach to discussing artificial nutrition and hydration l Features of artificial nutrition and hydration that favor use in spite of the evidence

5. Video

6. Role of the oncologist... l Help the patient and family Elucidate their values Understand the facts Dispel misconceptions l Establish goals of care l Facilitate decisions, reassess regularly l Help the patient and family Elucidate their values Understand the facts Dispel misconceptions l Establish goals of care l Facilitate decisions, reassess regularly

7. ... Role of the oncologist l Discuss alternatives Including palliative and hospice care l Document preferences, medical orders l Involve, inform other team members l Assure comfort, non-abandonment l Discuss alternatives Including palliative and hospice care l Document preferences, medical orders l Involve, inform other team members l Assure comfort, non-abandonment

8. Life-sustaining treatments l Resuscitation l Elective intubation l Surgery l Dialysis l Blood transfusions, blood products l Resuscitation l Elective intubation l Surgery l Dialysis l Blood transfusions, blood products l Diagnostic tests l Artificial nutrition, hydration l Antibiotics l Other treatments l Future hospital, ICU admissions

9. Enteral nutrition l NG, PEG, J tubes l Use GI tract l Temporary inability to eat l Neurological injury l UGI mechanical obstruction l NG, PEG, J tubes l Use GI tract l Temporary inability to eat l Neurological injury l UGI mechanical obstruction Shike M. Hematol Oncol Clin North Am, 1996.

10. Effect of enteral nutrition on survival l Higher mortality 50% dead at 12 months 60% dead at 18 months l No reduction in aspiration l No reduction in risk of pneumonia l No evidence of better symptom control l Higher mortality 50% dead at 12 months 60% dead at 18 months l No reduction in aspiration l No reduction in risk of pneumonia l No evidence of better symptom control Finucane TE, Christmas C, Travis K. JAMA, 1999.

11. Parenteral nutrition l Intravenous (central line) l No benefit in routine perioperative, ICU settings l Benefit in prolonged GI tract toxicity l Benefit in absence of GI tract function in otherwise healthy patient (short gut) l Intravenous (central line) l No benefit in routine perioperative, ICU settings l Benefit in prolonged GI tract toxicity l Benefit in absence of GI tract function in otherwise healthy patient (short gut) Mercandante S. Support Care Cancer, 1998.

12. Effect of parenteral nutrition on survival and response rates Odds ratio Control1.00 Survival0.81 p < 0.05 Tumor response 0.68 ACP Consensus Statement. Ann Int Med, 1989.

13. Evidence conclusion l When cancer is the cause of the anorexia and weight loss, prospective randomized studies have failed to show benefit of artificial nutrition ACP Consensus Statement. Ann Int Med, 1989.

14. Parenteral hydration l Intravenous l Subcutaneous (hypodermoclysis) Equally efficacious, less risk, less skill, less cost l Doesn’t relieve dry mouth l Intravenous l Subcutaneous (hypodermoclysis) Equally efficacious, less risk, less skill, less cost l Doesn’t relieve dry mouth McCann RM, Hall WJ, Groth-Juncker A. JAMA, 1994.

15. Common concerns l Legally required to ‘do everything’? l Is withdrawal, withholding euthanasia? l Are you killing the patient when you withhold or withdraw artificial nutrition and hydration? l Legally required to ‘do everything’? l Is withdrawal, withholding euthanasia? l Are you killing the patient when you withhold or withdraw artificial nutrition and hydration?

16. 7 steps to discuss nutrition & hydration... 1.Be familiar with policies, statutes Appropriate setting for the discussion 2.Ask the patient, family what they understand 3.Discuss general goals of care 1.Be familiar with policies, statutes Appropriate setting for the discussion 2.Ask the patient, family what they understand 3.Discuss general goals of care

17. ... 7 steps to discuss nutrition & hydration 4.Establish context for the discussion Discuss specific treatment preferences: will nutrition & hydration achieve goals? 5.Respond to emotions 6.Establish and implement the plan 7.Reassess and revise periodically 4.Establish context for the discussion Discuss specific treatment preferences: will nutrition & hydration achieve goals? 5.Respond to emotions 6.Establish and implement the plan 7.Reassess and revise periodically

18. Address misperceptions l Cause of poor appetite, fatigue l Relief of dry mouth l Urine output l Cause of poor appetite, fatigue l Relief of dry mouth l Urine output

19. Emotions l Not ‘fighting’ l Not ‘doing something’ l ‘Starving to death’ l ‘Dehydrating to death’ l Let nature take its course l Not ‘fighting’ l Not ‘doing something’ l ‘Starving to death’ l ‘Dehydrating to death’ l Let nature take its course McClement, et al. J Palliat Med, 2003.

20. Help family and staff l Identify feelings, emotions, need ‘to do something’ l Identify other ways to demonstrate caring Teach the skills they need l Identify feelings, emotions, need ‘to do something’ l Identify other ways to demonstrate caring Teach the skills they need

21. Normal dying l Loss of appetite l Decreased oral fluid intake l Artificial food / fluids may make situation worse BreathlessnessEdemaAscites Nausea / vomiting l Loss of appetite l Decreased oral fluid intake l Artificial food / fluids may make situation worse BreathlessnessEdemaAscites Nausea / vomiting Ganzini L, et al. N Engl J Med, 2003.

22. Discussing hospice care l Hospice care - present as a response to need vs. something to do when nothing left to do l Elicit patient and family understanding of situation l 10-15% of patients referred to hospice care disenroll (graduate) l Hospice care - present as a response to need vs. something to do when nothing left to do l Elicit patient and family understanding of situation l 10-15% of patients referred to hospice care disenroll (graduate)

23. EPECEPECOOEPECEPECOOO EPECEPECOOEPECEPECOOO Summary Withholding or withdrawing a therapy, such as artificial nutrition or hydration, is ethical and legal in some circumstances