Difficult Discussions are More Difficult When You Can’t Have Them

I’m writing this several days after an initially frustrating palliative care consult. Just as the talks have been heating up about “death panels,” and what the new legislation may mean, I sat in the ICU staring at Tom, through the ICU window that separates us. He was struggling with every breath while on the maximum amount of oxygen possible without being intubated. The problem is that Tom is an 89 year old man who has advancing Parkinson’s Dementia and he can no longer make decisions for himself. He has no wife because he was never married and he has no children. He only has a niece that hasn’t seen him for more than 5 years and the last thing she heard him say was that he didn’t want his life prolonged by artificial means. Prior to entering the hospital the patient was residing at a nursing home and he developed respiratory distress due to his worsening congestive heart failure. The niece was being contacted by telephone and didn’t want to be responsible for any decisions for this patient. The day prior she reluctantly gave a DNR order so that he wouldn’t be resuscitated. The doctors and nurses were confused as what to do next for the patient. The attending physician felt comfort measures were appropriate but was reluctant to initiate them because there was no guidance as what to do next. The patient had severe anemia and needed a transfusion, he also was not eating and was only being given IV fluids. The question was whether to place a gastric tube for artificial feeding. Going back to my initial statement, I sat there and thought how different and less confusing this situation would be if Tom would have had the chance to sit down and have an advanced care planning discussion with his doctor. Too bad he didn’t have conversations about goals for his life and how he would want to live the remaining portion including what he would want at the end of life. I sat there with my heart going out to Tom thinking he may undergo many things during this hospitalization that he may have been horrified by only 5 years earlier. Luckily, after gentle urging on my part to come and see the patient, the niece decided to come and see the patient. I received a call that she was coming to visit in 15 minutes. I got to the ICU to see the niece and her husband visiting with the patient. It appeared that they were uncomfortable in the room seeing him in his condition and realizing the gravity of the situation. I doubt they could hardly be there 5 more minutes seeing the patient in his condition and they seemed relieved to leave the room. We had a discussion in a conference room and after answering all of their questions, the niece decided to assist with decisions since she did have a brief discussion with the patient 5 years earlier. After seeing him in this condition she didn’t feel he would want to continue prolonging his life in this condition. She felt that comfort measures were appropriate and I subsequently wrote the orders. How many Tom’s are out there? How many geriatric patients still don’t have advanced directives or their wishes stated on paper? How many patients will suffer because difficult decisions haven’t been made ahead of time? May Tom rest in peace!

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2 thoughts on “Difficult Discussions are More Difficult When You Can’t Have Them

  1. Many thanks for writing this important post. It rings sad bells for me.

    My father has advanced Parkinson’s Disease. I so wish for an advance care plan, and am gently trying to broach the subject with my parents. It is difficult, but best done now, as your post clearly highlights.

    Regards, L (in Australia)

    • Thank you for your comment. It is difficult for some families to talk about Advanced Care Planning but your courage in broaching this subject will be to everyone’s benefit in the future. One document that I like, but definitely opinions vary, is “5 Wishes.” It’s a much more complete document than most generic Advanced Care Directive paperwork. Here’s the link: http://www.agingwithdignity.org/five-wishes.php

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