James Hallenbeck, MD Director, Palliative Care Services VA Palo Alto HCS

1. TUBE FEED OR NOT TO FEED? A Palliative Care Physician’s perspective on artificial hydration and nutrition James Hallenbeck, MD Director, Palliative Care Services VA Palo Alto HCS

2. A) Complete esophageal obstruction due to esophageal cancer in a patient with hunger. B) A patient with advanced Alzheimer’s disease and recurrent aspiration pneumonia C) A patient with Parkinson’s disease, living at home, who needs to be fed and yet takes a very long time to feed. D) A patient with stroke a week ago, who cannot eat without choking. Pre-Test For which of the following conditions would you advice PEG tube placement? What reason would you give and what evidence supports your recommendation?

3. What do you say when asked… “Doctor, she’s loosing so much weight. Do you think we should put in a tube or something…” “ He’s aspirating. We’ll need a PEG tube.” “You can’t just let her starve to death!”

4. Objectives By the end of this session you will be able to… • Cite evidence for and against the use of tube feeding in certain situations • Discuss potential benefits and burdens with a patient or family, incorporating this evidence • List possible advantages and disadvantages to hydration at the end of life

5. Artificial Nutrition and HydrationDifficult Decisions… What 'ingredients' go into making these decisions?

6. Relevant Factors • Effect on life expectancy • Effect on quality of life Values/Belief systems: • Patients (may or may not be known) • Family • Clinical staff (physicians, nurses, speech therapists etc.) • Social/cultural belief systems • Healthcare system • Effect on workload • Effect on reimbursement • Fear of recrimination • Ethical/Legal/Policy Concerns

7. Life Prolongation – What is the Evidence? Strongest Weakest Advanced, terminal illness – Dementia, Cancer Acute, catabolic illness

8. Life Enhancement – What is the Evidence? Weakest Strongest Patients with no hunger, poor base-line functional status, terminally ill Patients with hunger, good functional status, mechanical barrier to eating

9. Who gets PEG tubes? N = 7369 • Top three categories – • Organic, neurologic/dementia 28.6% • Stroke 18.9% • Head and neck cancer 15.7% • Procedural complication rate 4% • Short-term mortality 23.5% died during hospitalization • Median survival 7.5 months Rabeneck, L., N. P. Wray, et al. (1996). "Long-term outcomes of patients receiving percutaneous endoscopic gastrostomy tubes." J Gen Intern Med 11(5): 287-93.

10. Prospective Cohort Study on Dementia N=99 Of 99 patients hospitalized with advanced dementia… • Tube Placement • 50% received a new tube • 31% left without a tube • 17% came and left with a tube • Mortality • 85% discharged alive • Median survival: 175 days • No survival advantage to tube feeding p=.90 Meier, D. E., J. C. Ahronheim, et al. (2001). "High short-term mortality in hospitalized patients with advanced dementia: lack of benefit of tube feeding." Arch Intern Med 161(4): 594-9.

11. ? Major Predictors for Tube Placement? • African American ethnicity (odds ratio 9.43 CI 2.1-43.2) • Residence in nursing home (odds ratio 4.9 CI 1.02-2.5)

12. ? Tube Placement Helpful for Preventing Aspiration Pneumonia • In predicting aspiration in next 6 months • Sensitivity 65% • Specificity 67% • No statistically significant change in aspiration rates – tubed or not tubed • No statistical difference in mortality Croghan followed 22 dementia patients who underwent videofluroscopy Croghan, J., E. Burke, et al. (1994). "Pilot study of 12-month outcomes of nursing home patients with aspiration on videofluroscopy." Dysphagia 9: 141-146.

13. What about Quality of Life?Limited data… N=150 Community Prospective Cohort Study • 70% no improvement in functional status, nutritional status, quality of life • 50% mortality at one year Callahan, C. M., K. M. Haag, et al. (2000). "Outcomes of percutaneous endoscopic gastrostomy among older adults in a community setting." J Am Geriatr Soc 48(9): 1048-54.

14. Cancer and Artificial Nutrition Two separate issues: Mechanical blockage or inability to eat Cancer cachexia/anorexia syndrome

15. Mechanical Blockage/Difficulty Eating in Cancer • Early disease states • High functional status • Hunger and thirst present • Temporary problem (ex. Severe esophagitis due to chemotherapy and radiation Bypassing obstruction appears indicated especially in…

16. Cancer Anorexia/Cachexia Syndrome • Mediated by tumor-associated cytokines (TNF), IL-1, IL-6 and LIF) • Body shifts to catabolic state • Significant physiologic differences from starvation • Little evidence enteral feeding (or TPN) effective in: • Improving functional status • Other quality of life measures • Prolonging life

17. Ethical/Legal Concerns • Artificial feeding and hydration - medical interventions that can be refused by a competent patient or duly appointed and informed surrogate • States vary in their laws regarding tube feeding • Recent California case • In “non-terminally ill’, brain damaged, but not comatose patients clear and convincing evidence of prior wishes now required. • Tube insertion requires informed consent!

18. Talking with Patients and Families about possible Artificial Nutrition Key Principle of informed consent: Decision maker informed about potential benefits and burdens and possible alternatives. For something like tube-feeding, are the only relevant benefits and burdens (risks) those related to the procedure?

19. So, How are Clinicians doing in Obtaining Informed Consent? • 1/154 documented procedure-specific discussion of benefits, burdens and alternatives. • 12/33 definitely or probably competent patients signed consent form • Surrogate signed additional 21 (despite pt being competent) • One year mortality: 50% Retrospective chart review of 154 tube placements Brett, A. S. and J. C. Rosenberg (2001). "The adequacy of informed consent for placement of gastrostomy tubes." Arch Intern Med 161(5): 745-8.

20. Talking with Families Families often advocate for loved-ones using our language What is the sub-text of a request for artificial nutrition – usually a desire to nurture If recommending against artificial nutrition/hydration, be prepared to offer an alternative means of nurturing that is appropriate for the patient’s condition

21. Hydration in Terminal Illness • Arguments for: • Minimum standard of care • ? Greater comfort with hydration • ? Less confusion, restlessness, neuromuscular irritability • Not clear actually prolongs life significantly • Arguments against: • ? Prolong dying • Less discomfort due to decreased urine output, GI secretions/nausea, pulmonary secretions with pneumonia • Decreased fluids act as natural anesthetics for the CNS, natural sedation, less suffering

22. SUMMARY • Decisions regarding artificial nutrition and hydration are difficult for clinicians, patients and families • The evidence base for tube feeding in advanced, terminal illness is weak for both prolongation of life and improved quality of life • Decision making should incorporate patient and family values as well as informed consent regarding potential benefits, burdens and alternatives