I first started following Claire Wineland after her TED talk went viral many years ago. She is amazing and such an inspiration. She has always been so real, so authentic, and so open about facing life and death with cystic fibrosis . This past week she opened up about her declining health and decision to pursue a lung transplant. It is so refreshing to see someone talk so openly about the realities of having a transplant and her rational for choosing not to have one in the past. She offers a unique perspective as a patient who has probably witnessed many friends go through all the complications of lung transplant. And as always she is facing death with her eyes wide open. Love to you Claire!!
BARBARA KARNES DVD KIT
I was first introduced to Barbara Karnes in nursing school with her little blue book on the dying process. She is so inspirational! During mom's transition period, the hospice nurse provided us with another one of her little books, The Eleventh Hour. The most amazing little book that offered so much support in the days and hours leading to mom's transition out of this life. It really provided me with the words to help both myself and mom for her journey. Somewhere between work and school I'm going to purchase this DVD and start presenting in the community with a Q&A session.
May 22th, 2018
Too often palliative care is not discussed until days or weeks before death. Even in the hospital setting, it seems to be treated as hospice. "Palliative care is whole-person care that relieves symptoms of a disease or disorder, whether or not it can be cured. Hospice is a specific type of palliative care for people who likely have 6 months or less to live. In other words, hospice care is always palliative, but not all palliative care is hospice care". (AAHPM, 2018). I strongly believe palliative care should be discussed at the beginning of the cancer diagnosis and a relationship established with that team. The lovely Polly Samuel discusses her journey with the palliative care team and being completely present in her dying journey.
Legal information is not legal advice. I am not a lawyer. There are still many obstacles facing Arkansas families wishing to care for their own dead. I have done my best to provide the most accurate answers to the most common questions. I will update /modify answers as needed. If you encounter information that you believe to be incorrect, please notify me so I may research the issue. THANK YOU FOR YOUR SUPPORT!