This is an important and very real account. The part that stands out most is how the systems assume families can advocate in crisis, when in reality they are overwhelmed, tired, and grieving in real time. The “do-over” point is exactly right, healthcare gives you one chance, and you only realize the questions you should have asked after you’re already past the decision.
The clarity on the DNR is especially valuable. People are told “you can revoke it,” but they are rarely told that they will be asked to re-confirm it at the most emotionally unbearable moment of their life. That is not informed consent, that is a communication gap that can be fixed.
Your suggestion that families should have an independent advocate is the key. Hospitals have billing specialists, risk officers, and legal counsel, but the patient and family have no one dedicated to their understanding. If the system expects families to make clinical decisions, the system needs to provide guidance for that role.
Thank you for sharing this, it will help others recognize situations they cannot see clearly while they are inside them.
Thanks for reading. This is such a great summary of the issues! I especially appreciate this point about how the system has all these advocates built in for billing, risk, etc but we're so much thinner on patient advocates. I agree!
Thanks for this! The interview format put flesh, bones and reality on DNR struggles. It makes me wonder if a friend with medical expertise (eg retired nurse) might be a good advocate?
I'm glad to hear you liked the interview format. I think peer advocates or someone like a retired nurse or other health professional is always a good idea!
Its so hard to navigate the healthcare as a patient (and family) for all the reasons she said - it's your first time and you don't know what you don't know. We got an almost do-over with my dad as he had a partial Laryngectomy and then full Laryngectomy in the same year. Because we knew what to expect, we were able to advocate better for his care, which made his stay in the hospital and recovery so much easier. I love the idea of a patient advocate - is this the role social workers are meant to play? Unfortunately, as badly as the system needs it, I could see that as a something you would need to pay out of pocket for. Grateful for these conversations!
So glad to hear you got a partial do-over with your dad! There is a real learning curve to some of this business. I think that is part of the role of social workers, yes-- but I also think you're right that the system is strapped financially and so these resources are not always available. That's one reason I'm trying to help people learn more about how to advocate for themselves. Thanks for being here!
This is an important and very real account. The part that stands out most is how the systems assume families can advocate in crisis, when in reality they are overwhelmed, tired, and grieving in real time. The “do-over” point is exactly right, healthcare gives you one chance, and you only realize the questions you should have asked after you’re already past the decision.
The clarity on the DNR is especially valuable. People are told “you can revoke it,” but they are rarely told that they will be asked to re-confirm it at the most emotionally unbearable moment of their life. That is not informed consent, that is a communication gap that can be fixed.
Your suggestion that families should have an independent advocate is the key. Hospitals have billing specialists, risk officers, and legal counsel, but the patient and family have no one dedicated to their understanding. If the system expects families to make clinical decisions, the system needs to provide guidance for that role.
Thank you for sharing this, it will help others recognize situations they cannot see clearly while they are inside them.
Thanks for reading. This is such a great summary of the issues! I especially appreciate this point about how the system has all these advocates built in for billing, risk, etc but we're so much thinner on patient advocates. I agree!
99% red tape for profits, 1% is for er... ''hey whats this 1% doing kicking around'' ''no thats the patient'' ''oh right, yeah, them''
A patient advocate is a brilliant idea!
Thanks for this! The interview format put flesh, bones and reality on DNR struggles. It makes me wonder if a friend with medical expertise (eg retired nurse) might be a good advocate?
I'm glad to hear you liked the interview format. I think peer advocates or someone like a retired nurse or other health professional is always a good idea!
Its so hard to navigate the healthcare as a patient (and family) for all the reasons she said - it's your first time and you don't know what you don't know. We got an almost do-over with my dad as he had a partial Laryngectomy and then full Laryngectomy in the same year. Because we knew what to expect, we were able to advocate better for his care, which made his stay in the hospital and recovery so much easier. I love the idea of a patient advocate - is this the role social workers are meant to play? Unfortunately, as badly as the system needs it, I could see that as a something you would need to pay out of pocket for. Grateful for these conversations!
So glad to hear you got a partial do-over with your dad! There is a real learning curve to some of this business. I think that is part of the role of social workers, yes-- but I also think you're right that the system is strapped financially and so these resources are not always available. That's one reason I'm trying to help people learn more about how to advocate for themselves. Thanks for being here!