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

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

What do you say when asked… Doctor, shes loosing so much weight. Do you think we should put in a tube or something… You cant just let her starve to death! Hes aspirating. Well need a PEG tube. Hes aspirating. Well need a PEG tube.

Objectives Cite evidence for and against the use of tube feeding in certain situations 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 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 List possible advantages and disadvantages to hydration at the end of life By the end of this session you will be able to…

Artificial Nutrition and Hydration Difficult Decisions…

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

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

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

Who gets PEG tubes? Top three categories – Top three categories – Organic, neurologic/dementia 28.6% Organic, neurologic/dementia 28.6% Stroke 18.9% Stroke 18.9% Head and neck cancer 15.7% Head and neck cancer 15.7% Procedural complication rate 4% Procedural complication rate 4% Short-term mortality 23.5% died during hospitalization Short-term mortality 23.5% died during hospitalization Median survival 7.5 months 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): N = 7369

Prospective Cohort Study on Dementia Tube Placement Tube Placement 50% received a new tube 50% received a new tube 31% left without a tube 31% left without a tube 17% came and left with a tube 17% came and left with a tube Mortality Mortality 85% discharged alive 85% discharged alive Median survival: 175 days Median survival: 175 days No survival advantage to tube feeding p=.90 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): N=99 Of 99 patients hospitalized with advanced dementia…

? Major Predictors for Tube Placement? African American ethnicity (odds ratio 9.43 CI ) African American ethnicity (odds ratio 9.43 CI ) Residence in nursing home (odds ratio 4.9 CI ) Residence in nursing home (odds ratio 4.9 CI )

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

What about Quality of Life? Limited data… 70% no improvement in functional status, nutritional status, quality of life 70% no improvement in functional status, nutritional status, quality of life 50% mortality at one year 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): N=150 Community Prospective Cohort Study

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

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

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

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

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?

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

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 patients condition

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

SUMMARY Decisions regarding artificial nutrition and hydration are difficult for clinicians, patients and families 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 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 Decision making should incorporate patient and family values as well as informed consent regarding potential benefits, burdens and alternatives