Four Difficult EOL Cases Francis Dominic Degnin M.P.M., Ph.D. Clinical Ethicist, WFHC of Iowa Associate Professor of Philosophy University of Northern Iowa

Case 1: No Decision Maker Your patient is a 93 y/o woman with dementia, kidney failure, heart problems, and multiple other issues. She was transferred from a long term care facility with respiratory distress due to pneumonia. She is able to speak for herself. The question raised with the Ethics Committee is whether we should place a feeding tube or move her to comfort care and send her back to the home.

Additional Facts She has not been decisional in years. Family have not visited in years. If any are alive, the home doesn’t know how to contact them. She has no advanced directives nor any known living friends.

Key Questions What is her quality of life at the home? Is there anything she might have said during her years there which might give us guidance? As a last resort, what would most reasonably prudent persons want if in her situation? (Best interest standard)

Who Decides? A Decisional Hierarchy 1. Does the patient have decisional capacity? If yes, she/he decides. 2. Is the condition likely to be temporary or permanent? If temporary, can we wait until the patient regains decisional capacity? If not: 3. Are there any written advanced directives? 4. Are there person(s) who both: ◦ know the patient's wishes, and ◦ are willing and able to speak for those wishes? (Substituted Judgment) 5.Are there person(s) who know the patient's values and are willing to speak for those values?

Who Decides? Prudent Person Standard 6. What would a reasonably prudent person in our society be likely to choose? (Also called the best interest standard.) ◦ Would most persons consider the likely benefits of a particular treatment as proportionately greater than its likely harms? ◦ Are there safer, less invasive treatments which promise a comparable benefits? ◦ How does a particular treatment fit into the overall goals of care? 7. The “Best Interest” or “Reasonably Prudent Person” standard also operates as a touchstone on all previous levels. i.e., The further a decision is be outside the range of this standard, the more carefully the decision maker needs to be evaluated.

In this case… What is her quality of life at the long term care facility? If she still appears to experience some joy and interaction with life, then in the absence of more information, we have a certain bias towards keeping people alive. But if all she does is stare at a wall most days, with little or no awareness or interaction or joy, then most reasonably prudent persons would probably say to just keep them comfortable and pass on the feeding tube.

What actually happened…. Further questioning revealed that, a number of years previously, she had acted as decision maker for her sister who was at the time in a similar condition. She had decided to let her sister pass rather then keeping her alive in a condition bereft of quality of life.

However This does not necessarily mean that she would choose that for herself—she may have been acting purely on knowledge of her sister’s wishes. So while the situation helps, we are really still left to fall back on the reasonably prudent person standard.

Conclusion The feeding tube was not placed. She was sent back to the home with comfort measures.

Case 2: Long Distance Dumping Pt is a 63 y/o gentleman on long term vent support. He came to us via a small community hospital, where he was sent due to respiratory distress from a long term ventilator home. Pt suffered from pneumonia and klebsiella (antibiotic resistant) and borderline kidney failure. Pt’s history included multiple strokes, anoxic brain injury, Parkinson’s, coronary artery disease, and multiple other problems. Pt is in a clenched position with a wound on his back, positioning for a code or even dialysis will be extremely challenging. Pneumonia and klebsiella are resolving, but the pt is going to need dialysis, even though he is not a good candidate for long term (for example, cannot sit up.) The Patient’s decision maker is his wife, who is Greek but speaks passable English. She lives in FL.

Case 3: The Marrying Man You get a call from a about a patient who is unconscious and on a ventilator with end stage COPD. He is not expected to wake. He has two ex wives and both sets of children present. He also has a sister who holds his financial and medical powers of attorney. One of the ex wives has come to you and asked for a letter to the county clerk explaining that the patient is too ill to leave the hospital. She explains that she has been taking care of him and that they had planned to remarry, but that this final episode has come on suddenly. They have a minister who will come to the hospital, but without a letter from the doctor, the county clerk will not issue the license. Do you give her the letter?

Case 4: An Alert and Incompetent Self (Hastings Center Reports) 73 y/o woman presents to ER with shortness of breath. She undergoes a major blood episode, suffers an anoxic brain injury, vent. dependent. Able to watch TV, respond to simple questions, ruled incompetent, not expected to improve. Friends (no family) and primary care physician indicate that she has been very clear that she would never want to live in this state. Not in pain, appears to enjoy her limited interactions, when asked, indicates that she does not want the ventilator removed.