End-of-Life Decision Making: Case 1

Mrs. Doe is conserved because of her severe dementia and has been a nursing home patient on Medi-Cal for more than five years. She has no family and left no written instructions about her health care wishes. In the past two years, she has become unable to walk or to follow any simple commands. She has not spoken in months. During the past year, she has required spoon-feeding, and she has been taking progressively longer to eat each meal. Because of episodes of coughing and possibly choking, her diet has been changed to puree with thick liquids. She still seems to prefer some foods, and the staff can tell you which foods she will usually spit out. She has been hospitalized twice for pneumonia in the past year but has recovered without needing ICU treatment.

One Saturday evening, Mrs. Doe is congested. She begins running a fever, and her breathing seems labored. The nursing home staff calls 911 and sends the patient to the hospital. The emergency room physician consults with the internist and the pulmonologist, and the patient goes to the intensive care unit. She is intubated and put on a ventilator. After two days of antibiotics and vigorous suctioning, she seems to be breathing better, but she has required restraints to keep her from pulling out the breathing tube and sedatives so she does not try to hit the ICU staff.

You come to see Mrs. Doe in the ICU on Monday afternoon. On your way to see her, you get a message that the nursing home has just called you to see if Mrs. Doe will have a feeding tube placed while she is in the hospital. They point out that she has been losing weight and takes so long to eat a meal that it is impacting the staff's ability to get other jobs done. When you arrive in the ICU, the patient is still on the ventilator, and each wrist has a binder that secures her to the bed frame. Although she is somewhat sedated, she seems uncomfortable, and there is still an aura of panic that penetrates her drug haze.

The ICU physician is glad to see you because he has lots of questions about what happens next with the patient.

• Is she is "full code"? Should they "do everything"? - i.e., should she be resuscitated if she suffers a cardiac arrest?
• Do you give permission for them to continue to restrain her arms so that she does not pull out the tubes?
• Can the nursing home do IV antibiotics?
• Will the nursing home accept her back if she overstays her seven-day bed hold?
• Will she be transferred back to the hospital again for her next bout of pneumonia?

Elizabeth Menkin is a physician in geriatric and internal medicine at Kaiser-Permanente San Jose/Santa Teresa. She is the founder of Coda Alliance, a Silicon Valley community coalition for end-of-life care.