YES. As an oncology PA I see the “goals of care discussion” crammed into a 15 minute pre-chemo visit and I am not okay with that. I really agree with the perspective of a primary care provider being the one to talk a patient through end of life goals, cares, plans. Continuity, trust, individualized care — so vital, but increasingly rare. Thank you so much for sharing!
I'm reading this from the (soon to be) perspective of that patient with the kiddos. One more round of chemo? And I don't really have an opinion. I hear what you're saying - the values-based conversations and the human-to-human connection around the emotionally taxing decisions, you want those conversations to stay with the doctors who have been treating you this whole time, rather than it going to a whole other branch of people, which then potentially creates another barrier for communication. Did I get it?
I can see it - the outsourcing creates more disconnection rather than connection.
I also have benefited from having one more compassionate person to talk to on the palliative care team. Like another brain thinking about things with me and letting me know my options. I've had the experience of my "medical village" getting larger, if that makes sense.
Anyway, I'm thinking out loud. I really appreciated this piece. The candid conversations are refreshing.
Do you know of anyone on substack writing about hospice?
I also do love my multidisciplinary team. I work with palliative care every day and in so many ways would be lost without them. It’s hard to know how much of that is because I have too many competing responsibilities in a failing system, but that “village” you talk about is real. Definitely don’t want it to be undervalued. Im thinking aloud here too and really appreciate your sharing
I so appreciate this perspective and thank you so much for sharing. I think that balance of autonomy vs guidance has really shifted in a way that isn’t always helpful. Sometimes we abdicate responsibility under the guise of uncertainty and autonomy in a way that isn’t consistent with our role as doctors.
This is something that resonates, though: The response of physicians and providers has been logical: to hedge our bets, to couch our guidance in uncertainty, and to place an increasing burden of decision-making on the patient and their family. It is both legally and emotionally protective to shift responsibility away from one's own medical decision-making and into the hands of the patient.
Rebekah, unfortunately many physicians are unable to tell patients and their families the truth. So, palliative care physicians do that for them. Sad, but true. In neonatology, younger physicians throw technology at all the problems, and rarely share the truth with families.
I think that’s true, and hope there’s a way to change how we teach and practice medicine, especially when it comes to medically complex children ( my perspective is as a pediatric hospitalist who sees exactly what you say)
Hospitalist here. I was so ready to not like this post because of the headline. What do you mean they shouldn't exist- they help me out so much in the hospital! But your thesis is solid. Whenever a nurse asks me to consult palliative care, I always say "I'll talk to them first." I never jump straight to a palliative care consult because I can talk to my patient. But, there are times when my list is so full I can't dedicate a solid chunk of time to gather family and have a nuanced prolonged conversation.
The other note I'd mention is that primary care is not being supported enough. Where I work, a lot of them are leaving because their appointment times are being shortened, they have endless charting, and they're doing uncompensated work. If we had robust primary care, a lot of things would be better, including end-of-life care.
It’s definitely a provocative headline but ultimately I couldn’t agree more, they are my absolute favorite consult service and I couldn’t be more appreciative of them. But the investment in primary care is what’s needed! Primary care doctors *want* to do this work, but it takes time and resources!
As a patient, palliative care, or care with a palliative intent came as a slap in the face because of the connotations of this overloaded terminology. I equated palliative to end of life, to a last ditch effort to make a patient comfortable before death.
I’ve learnt a lot since then, and I always appreciated my team’s dedication to preserving as high of a quality of life as possible and having the hard discussions with me about pros and cons of each treatment with regards to it versus “reward” (i.e. treatment effectiveness and aggressiveness)
Thank you for posting, there’s a lot to think through in this article!
Thank you so much for adding this perspective and sharing. You bring up a really good point of how part of the gap in palliative care education for doctors is understanding what it truly means. It’s an evidenced based approach that actually increases survival rates and improves outcomes. We definitely don’t teach that enough
Love this article. I literally brought my mother in law home with my ultra strong wife for hospice. As a former chronic pain and addiction therapist, I feel completely opposite of pain and comfort needs for end of life. (I’m not a fan of opiates for chronic non cancer pain or lifetime ORT for addiction). I’ve posted on the initial experience here: Not trying to get a follow, just wanted to support your thoughts so well shared.
The burden for most doctors is really the amount of work, the BS that surrounds the work, and the dehumanization that occurs when we can't be the kind of uber doctors we aspire to be. I feel this way with funerals, and even when failing to call patients who are struggling when I would like to do so... but there are 100 other calls/messages in the queue before them, and my allotment of family time awaits at home.
Thanks for sharing and adding this insight. My residents and coattendings talk all the time about how the moral injury comes from the system failures more than even the most emotionally challenging patient situations
YES. As an oncology PA I see the “goals of care discussion” crammed into a 15 minute pre-chemo visit and I am not okay with that. I really agree with the perspective of a primary care provider being the one to talk a patient through end of life goals, cares, plans. Continuity, trust, individualized care — so vital, but increasingly rare. Thank you so much for sharing!
Thanks for this perspective!
This resonated a lot. I teach communication skills to our students and trainees, and most recently, I wrote about “primary palliative care” last week, focusing on the need for all of us to have the basic skills to help in decision-making. Here is the article. https://open.substack.com/pub/mclllc/p/post-15-primary-palliative-care?utm_campaign=post&utm_medium=web
We also need to understand the questions being asked and learn to answer them clearly and concisely in a language that patients understand.
Thanks so much for sharing
I'm reading this from the (soon to be) perspective of that patient with the kiddos. One more round of chemo? And I don't really have an opinion. I hear what you're saying - the values-based conversations and the human-to-human connection around the emotionally taxing decisions, you want those conversations to stay with the doctors who have been treating you this whole time, rather than it going to a whole other branch of people, which then potentially creates another barrier for communication. Did I get it?
I can see it - the outsourcing creates more disconnection rather than connection.
I also have benefited from having one more compassionate person to talk to on the palliative care team. Like another brain thinking about things with me and letting me know my options. I've had the experience of my "medical village" getting larger, if that makes sense.
Anyway, I'm thinking out loud. I really appreciated this piece. The candid conversations are refreshing.
Do you know of anyone on substack writing about hospice?
I also do love my multidisciplinary team. I work with palliative care every day and in so many ways would be lost without them. It’s hard to know how much of that is because I have too many competing responsibilities in a failing system, but that “village” you talk about is real. Definitely don’t want it to be undervalued. Im thinking aloud here too and really appreciate your sharing
I so appreciate this perspective and thank you so much for sharing. I think that balance of autonomy vs guidance has really shifted in a way that isn’t always helpful. Sometimes we abdicate responsibility under the guise of uncertainty and autonomy in a way that isn’t consistent with our role as doctors.
This is something that resonates, though: The response of physicians and providers has been logical: to hedge our bets, to couch our guidance in uncertainty, and to place an increasing burden of decision-making on the patient and their family. It is both legally and emotionally protective to shift responsibility away from one's own medical decision-making and into the hands of the patient.
Couldn’t agree more.
Rebekah, unfortunately many physicians are unable to tell patients and their families the truth. So, palliative care physicians do that for them. Sad, but true. In neonatology, younger physicians throw technology at all the problems, and rarely share the truth with families.
I think that’s true, and hope there’s a way to change how we teach and practice medicine, especially when it comes to medically complex children ( my perspective is as a pediatric hospitalist who sees exactly what you say)
Hospitalist here. I was so ready to not like this post because of the headline. What do you mean they shouldn't exist- they help me out so much in the hospital! But your thesis is solid. Whenever a nurse asks me to consult palliative care, I always say "I'll talk to them first." I never jump straight to a palliative care consult because I can talk to my patient. But, there are times when my list is so full I can't dedicate a solid chunk of time to gather family and have a nuanced prolonged conversation.
The other note I'd mention is that primary care is not being supported enough. Where I work, a lot of them are leaving because their appointment times are being shortened, they have endless charting, and they're doing uncompensated work. If we had robust primary care, a lot of things would be better, including end-of-life care.
It’s definitely a provocative headline but ultimately I couldn’t agree more, they are my absolute favorite consult service and I couldn’t be more appreciative of them. But the investment in primary care is what’s needed! Primary care doctors *want* to do this work, but it takes time and resources!
Agreed! And nice work on the headline :)
As a patient, palliative care, or care with a palliative intent came as a slap in the face because of the connotations of this overloaded terminology. I equated palliative to end of life, to a last ditch effort to make a patient comfortable before death.
I’ve learnt a lot since then, and I always appreciated my team’s dedication to preserving as high of a quality of life as possible and having the hard discussions with me about pros and cons of each treatment with regards to it versus “reward” (i.e. treatment effectiveness and aggressiveness)
Thank you for posting, there’s a lot to think through in this article!
Thank you so much for adding this perspective and sharing. You bring up a really good point of how part of the gap in palliative care education for doctors is understanding what it truly means. It’s an evidenced based approach that actually increases survival rates and improves outcomes. We definitely don’t teach that enough
Love this article. I literally brought my mother in law home with my ultra strong wife for hospice. As a former chronic pain and addiction therapist, I feel completely opposite of pain and comfort needs for end of life. (I’m not a fan of opiates for chronic non cancer pain or lifetime ORT for addiction). I’ve posted on the initial experience here: Not trying to get a follow, just wanted to support your thoughts so well shared.
https://open.substack.com/pub/jimryser/p/dying-scratch-that-living-with-dignity?r=15g3mk&utm_campaign=post&utm_medium=web
Thanks for sharing I appreciate it!
Well said! Palliative care is crucial but I think it is a core competency for all physicians
Absolutely, 100% agree.
The burden for most doctors is really the amount of work, the BS that surrounds the work, and the dehumanization that occurs when we can't be the kind of uber doctors we aspire to be. I feel this way with funerals, and even when failing to call patients who are struggling when I would like to do so... but there are 100 other calls/messages in the queue before them, and my allotment of family time awaits at home.
https://www.doximity.com/articles/280824bd-7a7b-4578-bb9d-3290d5641115
Thanks for expressing this so well, I feel seen ;)
Thanks for sharing and adding this insight. My residents and coattendings talk all the time about how the moral injury comes from the system failures more than even the most emotionally challenging patient situations