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Case Presentation: Palliative Care in PAH
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Sandra Lombardi, RN, discusses the case of a patient with end stage idiopathic pulmonary hypertension, which highlights some of the issues surrounding end of life treatment for patients. Filmed at the 2016 CHEST Annual Meeting.

This transcript is software driven, please understand there may be errors.  Should any inaccuracies or omissions be found, please notify for correction.

Hello, my name is Sandra Lombardi, and I'm going to do a case presentation, hopefully to make people think about palliative care. Patient is a 48 year old male with end stage idiopathic pulmonary hypertension. He was a functional class four admitted to the ICU for massive volume overload. He's currently on triple therapy. At the time of his admission, he was being worked up for transplant. Given his poor nutritional status, the transplant team turned him down.

Hospice care was ordered, but was denied because patient refused to go off Flolan. He wanted to go home and see his kids, and say goodbye to family and friends. Palliative care team consulted, referral was sent to every home health agency that does palliative care within 100 miles. After five days of trying to get it approved, it was determined that his current insurance, which was Medicare, would not cover home palliative care.

The patient and family were requesting discharge, although his elderly parents were going to be taking care of him, and they didn't know if they could manage. The patient really required full care 24 hours a day due to poor functional class. The family had to mix and change his Flolan cassette; there was tube feedings, central line care and major assistance with his ADL. Patient has reported to the office that he was developing bed sores about day five after discharge.

Twenty five days after discharge, the patient died. Patient's family reported it was a horrible experience, that the patient did not die peacefully. I had real frequent chats with this family, and it broke my heart. It made me think of the reason why we don't order palliative care, and I couldn't come up with any reason.
I would like to send you home with these questions. Would Medicare dollars have been saved if patient would have been discharged the first day of palliative care was ordered, versus an extra five days in the ICU? I think if we look back, that probably is the case. Since Medicare is all about saving money, I think we could have saved money here. What would have the cost, I have 28 on here, but it should be 25 days for home palliative care, I can bet it was a lot cheaper than those five days in the ICU.

Is it really fair for a patient to have to make the choice to DC or continue his Flolan because the system says if you want care at the end of life, you have to follow our rules? I think this is a lot to think about. My answer would be, "It's not fair." I think it should be the right to die comfortably, if at all possible. For those of you that say, "Well, why didn't we just take the Flolan off?"

The man lived two hours from UCSD, he was quite sick and he was concerned if he turned it off, he wouldn't make it home. He had two kids that he wanted to speak to and talk to and have them comfortable with end of life issues. He was willing to turn Flolan off, but he wanted it on his terms. I hope that you will think a little bit about this, and thank you very much.