I have really appreciated your interviews with Dr. Gawande particularly because he touches on the gap in Western med as well as our society...reticence to address not just death but DYING, or more accurately, living a quality of life while seriously chronically ill and/or terminal no matter your age. I watched his Frontline doc, Being Mortal, and purchased his book of same title. My sister has Stage IV terminal Inflammatory Breast Cancer. Her "care" has been appalling (outside of some excellent palliative care nurses). At the Seattle Cancer Center when she had a blood clot from her ankle to thigh due to cancer and/or treatment, it took them 2 weeks to respond to her. She went months without an oncologist when her's left practice. All of them have been only interested in her if she opts to do radical treatments. Nobody wants to treat her if she opts out and wants to focus on what's left of her life. For me, I'm chronically seriously ill with Progressive MS, RA, CVID. The MS has now impacted my autonomic system (heart, blood pressure, etc.) and weakened my diaphragm in addition to motor skills, bowel and bladder. I'm in a wheelchair. Both my sister and I have still tried to live full lives but our med care has made us feel abandoned as we are "complex". It makes it very hard to make important decisions about our lives. I was so encouraged by the work of Dr. Gawande. The only sad and frustrating part is that his book is 8 years old and sadly his colleagues don't seem to be listening as not much has changed on this important subject. It is actually getting much worse . The work that you both are doing to bring these sort of topics to a broader audience is significant, but I wish we could find a way for patients like myself and my sister to advocate with insightful physicians like you. How we communicate together in the process of treating and healing should be based on the common realistic goal of how patients like us can live the best life in our circumstances not undue pressure on you to provide miraculous cures. And definitely should not be based on dictates from private annuities who do not share your expertise and compassion, nor the fact that the patient is the one who lives or dies with the consequences.
As a bedside RN and a mother with a kid who has long Covid I couldn’t agree more. Viral and post-viral complications aren’t something that we factor into acute or even routine medical care like we need to in a “post-covid” healthcare world.
I have really appreciated your interviews with Dr. Gawande particularly because he touches on the gap in Western med as well as our society...reticence to address not just death but DYING, or more accurately, living a quality of life while seriously chronically ill and/or terminal no matter your age. I watched his Frontline doc, Being Mortal, and purchased his book of same title. My sister has Stage IV terminal Inflammatory Breast Cancer. Her "care" has been appalling (outside of some excellent palliative care nurses). At the Seattle Cancer Center when she had a blood clot from her ankle to thigh due to cancer and/or treatment, it took them 2 weeks to respond to her. She went months without an oncologist when her's left practice. All of them have been only interested in her if she opts to do radical treatments. Nobody wants to treat her if she opts out and wants to focus on what's left of her life. For me, I'm chronically seriously ill with Progressive MS, RA, CVID. The MS has now impacted my autonomic system (heart, blood pressure, etc.) and weakened my diaphragm in addition to motor skills, bowel and bladder. I'm in a wheelchair. Both my sister and I have still tried to live full lives but our med care has made us feel abandoned as we are "complex". It makes it very hard to make important decisions about our lives. I was so encouraged by the work of Dr. Gawande. The only sad and frustrating part is that his book is 8 years old and sadly his colleagues don't seem to be listening as not much has changed on this important subject. It is actually getting much worse . The work that you both are doing to bring these sort of topics to a broader audience is significant, but I wish we could find a way for patients like myself and my sister to advocate with insightful physicians like you. How we communicate together in the process of treating and healing should be based on the common realistic goal of how patients like us can live the best life in our circumstances not undue pressure on you to provide miraculous cures. And definitely should not be based on dictates from private annuities who do not share your expertise and compassion, nor the fact that the patient is the one who lives or dies with the consequences.
As a bedside RN and a mother with a kid who has long Covid I couldn’t agree more. Viral and post-viral complications aren’t something that we factor into acute or even routine medical care like we need to in a “post-covid” healthcare world.