I promise it is a total coincidence that this coincides with the day after Thanksgiving. "Maybe the decision they made was the right one and I still can’t see it."
Dec 12, 2022·edited Dec 12, 2022Liked by Adam Cifu, MD
Adam: Thanks for sharing this narrative. As an ethicist who has been involved in hundreds of family meetings, I strongly disagree that the meeting you described went "off the rails." From a process perspective it is a textbook example of a GOOD family meeting.
1. You solicited AD's (wife's) view and offered your honest opinion based on your assessment of WD's prognosis and your knowledge of his values.
2. When AD explained why she couldn't shoulder the burden of this decision by herself (surrogates are often compromised by competing obligations and defer/partially defer to others), you appropriately widened the discussion to include WD's family.
3. You began the meeting by acknowledging the family's emotional burdens but also stressed the ethical importance of first & foremost basing their decision on their knowledge of the patient's wishes & values.
4. Although it was not the decision you were hoping for and was based more on the family's religious viewpoint than the patient best interests, you nevertheless honored your earlier commitment to WD's wife to support whatever decision was made.
As you reflected later, six more weeks of life (albeit of very poor quality) perhaps allowed for the closure this family needed. In any event it did allow WD to regain enough capacity to state his wishes to you clearly ("Dr. Cifu, let me die."). I feel confident that if a second family meeting had been required, you would have conducted it differently based on WD's verbal directive.
You wrote: "If I took away anything, it was an illustration of how powerless we, as physicians, can be. Sometimes we are powerless against an illness. Sometimes we are powerless to convince people to accept our counsel." Ethically speaking, your job was not to convince. Your job was to engage a surrogate and her family in making a very difficult decision in the moment. And you did that inclusively & compassionately. You controlled what was yours to control.
After being a lead in several dozens of this kinds of catastrophic family meetings I resonate with this text so much that I don't know if I fell anger or sadness. Probably both.
I am angry at general population that never took the opportunity of sitting down with their loved ones thinking of mortality and explaining clearly what they want and what they do not want. I am angry at this religious zealots who pretend they know what God wants. I am angry at idiotic consultants who appear "Deus ex machina" with even more idiotic solutions without having in mind big picture. I am angry and frustrated by my impotence to stop this.
I am sad that patients get thru all this. I am ashamed that someone who get sick and tries to exit peacefully is declined that natural right but tortured by good intentions and hope to the epic proportions. Actually I am so ashamed that I don't think I will ever work in US system.
I always enjoy reading your reflections. My biggest regret was sending my husband to the hospital when he caught COVID. He was already dying slowly as Type 1 Diabetes was taking away his quality of life, but COVID took him quickly. He would have been much better off dying peacefully in his chair at home than going through that horror at the hospital. But we did not know he had COVID and people always have hope. However, he was able to talk to his friends for a last time and facetime my daughter for one last time while at the hospital. Also, his sister was able to come down to say good-bye to him when we finally told them to turn off the machines, so that was good. They just should have had the palliative care guy speak with us much sooner than they did.
I feel like this a lot.. I constantly have to tell myself “it’s not my journey“ it doesn’t make it less painful for my soul to see people suffer, but it does take away the feeling of helplessness of watching them go through it. I try to make their journey comfortable as I can in the 12 hour shift I have them.
I'm glad I took the time to read this. The last few years have convinced me that there are essentially no decent humans left who practice medicine. It's good to be reminded that there are at least a few.
Thanks for a wonderful story of a caring physician and the pitfalls of end of life decisions.
I’m not too impressed with “WD”‘s family. It is certainly a difficult ask to know what someone else would want for themselves in these situations, when they cannot speak for themselves. But I would hazard a guess those family members failed miserably as surrogates for WD’s wishes, and were masters of transference of their own. Esp the preacher. If there is a lesson here beyond the value of having a caring physician, it’s to have a legal and enforceable living will, advance directive, or representation agreement, depending on what such a document is called in your jurisdiction.
Just because you can, doesn’t mean you should - are words I live by in my practice every day.
Thank you for this beautiful essay and for sharing your experience. I was surprised to find myself crying at the end. As an ICU nurse I have been at many of these meeting, although I never run them, and they can go so many ways. I have been touched by how much grace family's can exhibit under the worst of circumstances, and also been frustrated and morally distressed by family decisions that were in extreme conflict with the choices I would make, and what I thought was right. All I can do is gently try to remind families to really consider what made life worth living for their loved one and not necessarily what they themselves want or need...and then I live and work with their decision for better or worse, and try to do so from a place of love without judgement.
Trust me- as an End of Life Doula, you had a powerful conversation that while did not land as you'd hoped, reflected your honest efforts to offer a real choice for this family. The not so hidden backdrop reflected the cultural, embedded, well entrenched "hope" of medicine of which you are a representation; A mighty force!!
It seems IF Western culture could begin to acknowledge that there is a point where we will all no longer exist, we might be able to have conversations that acknowledge this fact early on....and impact common decisions and plans earlier than and to include, the final months and days of a life ending. A softer landing is possible.. just a mighty lift for the enlightened, whole-hearted physician who is attempting these conversations when the hope for continued lifespan, not health span, is placed inadvertently by the patient, on his or her shoulders.
Are families ever made aware of the "error" of their decisions? Especially when they then see how much the patient is suffering because they want him to live or because "God hasn't decided yet"? People are still so scared of death and of taking responsibility to stop the suffering taking the person to death. It has always saddened me.
This is really good as always. People often fail to consider the emotional impact. Living people think that trying to hold on to life is the best thing to do. While I'm not a huge fan of medical assistance in dying, I do think in scenarios like you just put forward, such a situation makes sense.
Thanks for the story. When my 91 yr old mother had 6 strokes to her brainstem at one time and entered the hospital my siblings (one who lived 100 miles away) wanted to move her into a nursing home (with a feeding tube too!!) on discharge. My mother made me (the youngest) medical POA and had made me promise to never put her in a nursing home. My father had been in one for 15+ yrs and until the week of the strokes my mother faithfully visited him. The sibling that lived 100 miles away said she would come and take care of my Mother even though she rarely went to the nursing home to visit my Father. I had to follow my Mother's wishes. Hardest decision I ever had to make but it was for the best.
Maybe the bigger swaths of human experience, such as connection, growth together in hardships, and truly loving each other, seeing and attempting to feel another’s perspective even if painful...is the “success” if there must be such a thing.
The concept of death as failure, or even a “good” death has never fit for me in medicine, and human life really. We all are born, live, and die. Yes, most could be more thoughtful and intentional about their own death, the passing of legacy to loved ones...most could be more educated about the physical process, but we all understand the impact of loss for those left behind. The million decisions needed to be made during a time of heart-breaking grief...the emotional tsunamis that as of yet don’t fit into our Western cultural narrative.
There is no playbook for living or dying with dignity, in love, other than the stories - like yours - that we share with vulnerability and openness to grow together. No “right” answer, other than the knowing in another’s eyes that we are connected and more whole together.
Your story is it’s own success, Dr. Cifu, imo. Your words share your heart and soul, and those of the family and patient you shared them with.
The heart and soul of beautiful WD, and the grace and beauty he and his lovely wife cultivated in their own family.
Nov 25, 2022·edited Nov 25, 2022Liked by Adam Cifu, MD
Adam, This is pithy and elegant...and fundamentally underscores the "down" side of being a doctor. In my experience, most families will always vote for "do everything" because they are dealing with their own guilt/mortality more than the patient's. Fully understandable, and it does give them more time to deal with the inevitable, I suppose. Almost always worse for the patient (except, of course, when it is not, because every patient is their own science experiment -- a line I utter at virtually every visit...amazing how few people understand this.)
The underlying thread is that all of us are pretty committed to doing the best thing we can for each patient -- one by one. Unfortunately, lacking omnipotence, for us it is often just a guess/feeling that we hope is correct. Often, decades later, we are still not sure. Every good physician carries these feelings with them forever.
I am going to share this with the medical students with your permission. I often speak about this, but it is seldom so succinctly illustrated.
In this season of Thanks, we are thankful you take the time to pen these pieces. They matter.
Adam: Thanks for sharing this narrative. As an ethicist who has been involved in hundreds of family meetings, I strongly disagree that the meeting you described went "off the rails." From a process perspective it is a textbook example of a GOOD family meeting.
1. You solicited AD's (wife's) view and offered your honest opinion based on your assessment of WD's prognosis and your knowledge of his values.
2. When AD explained why she couldn't shoulder the burden of this decision by herself (surrogates are often compromised by competing obligations and defer/partially defer to others), you appropriately widened the discussion to include WD's family.
3. You began the meeting by acknowledging the family's emotional burdens but also stressed the ethical importance of first & foremost basing their decision on their knowledge of the patient's wishes & values.
4. Although it was not the decision you were hoping for and was based more on the family's religious viewpoint than the patient best interests, you nevertheless honored your earlier commitment to WD's wife to support whatever decision was made.
As you reflected later, six more weeks of life (albeit of very poor quality) perhaps allowed for the closure this family needed. In any event it did allow WD to regain enough capacity to state his wishes to you clearly ("Dr. Cifu, let me die."). I feel confident that if a second family meeting had been required, you would have conducted it differently based on WD's verbal directive.
You wrote: "If I took away anything, it was an illustration of how powerless we, as physicians, can be. Sometimes we are powerless against an illness. Sometimes we are powerless to convince people to accept our counsel." Ethically speaking, your job was not to convince. Your job was to engage a surrogate and her family in making a very difficult decision in the moment. And you did that inclusively & compassionately. You controlled what was yours to control.
After being a lead in several dozens of this kinds of catastrophic family meetings I resonate with this text so much that I don't know if I fell anger or sadness. Probably both.
I am angry at general population that never took the opportunity of sitting down with their loved ones thinking of mortality and explaining clearly what they want and what they do not want. I am angry at this religious zealots who pretend they know what God wants. I am angry at idiotic consultants who appear "Deus ex machina" with even more idiotic solutions without having in mind big picture. I am angry and frustrated by my impotence to stop this.
I am sad that patients get thru all this. I am ashamed that someone who get sick and tries to exit peacefully is declined that natural right but tortured by good intentions and hope to the epic proportions. Actually I am so ashamed that I don't think I will ever work in US system.
I am probably weak. I do admire your strength!
Love
I always enjoy reading your reflections. My biggest regret was sending my husband to the hospital when he caught COVID. He was already dying slowly as Type 1 Diabetes was taking away his quality of life, but COVID took him quickly. He would have been much better off dying peacefully in his chair at home than going through that horror at the hospital. But we did not know he had COVID and people always have hope. However, he was able to talk to his friends for a last time and facetime my daughter for one last time while at the hospital. Also, his sister was able to come down to say good-bye to him when we finally told them to turn off the machines, so that was good. They just should have had the palliative care guy speak with us much sooner than they did.
I feel like this a lot.. I constantly have to tell myself “it’s not my journey“ it doesn’t make it less painful for my soul to see people suffer, but it does take away the feeling of helplessness of watching them go through it. I try to make their journey comfortable as I can in the 12 hour shift I have them.
I'm glad I took the time to read this. The last few years have convinced me that there are essentially no decent humans left who practice medicine. It's good to be reminded that there are at least a few.
Thanks for a wonderful story of a caring physician and the pitfalls of end of life decisions.
I’m not too impressed with “WD”‘s family. It is certainly a difficult ask to know what someone else would want for themselves in these situations, when they cannot speak for themselves. But I would hazard a guess those family members failed miserably as surrogates for WD’s wishes, and were masters of transference of their own. Esp the preacher. If there is a lesson here beyond the value of having a caring physician, it’s to have a legal and enforceable living will, advance directive, or representation agreement, depending on what such a document is called in your jurisdiction.
Just because you can, doesn’t mean you should - are words I live by in my practice every day.
Thank you for this beautiful essay and for sharing your experience. I was surprised to find myself crying at the end. As an ICU nurse I have been at many of these meeting, although I never run them, and they can go so many ways. I have been touched by how much grace family's can exhibit under the worst of circumstances, and also been frustrated and morally distressed by family decisions that were in extreme conflict with the choices I would make, and what I thought was right. All I can do is gently try to remind families to really consider what made life worth living for their loved one and not necessarily what they themselves want or need...and then I live and work with their decision for better or worse, and try to do so from a place of love without judgement.
Trust me- as an End of Life Doula, you had a powerful conversation that while did not land as you'd hoped, reflected your honest efforts to offer a real choice for this family. The not so hidden backdrop reflected the cultural, embedded, well entrenched "hope" of medicine of which you are a representation; A mighty force!!
It seems IF Western culture could begin to acknowledge that there is a point where we will all no longer exist, we might be able to have conversations that acknowledge this fact early on....and impact common decisions and plans earlier than and to include, the final months and days of a life ending. A softer landing is possible.. just a mighty lift for the enlightened, whole-hearted physician who is attempting these conversations when the hope for continued lifespan, not health span, is placed inadvertently by the patient, on his or her shoulders.
Are families ever made aware of the "error" of their decisions? Especially when they then see how much the patient is suffering because they want him to live or because "God hasn't decided yet"? People are still so scared of death and of taking responsibility to stop the suffering taking the person to death. It has always saddened me.
This is beautiful. I feel for you. Thank you for sharing. You did not fail; you simply had no control over the situation.
This is really good as always. People often fail to consider the emotional impact. Living people think that trying to hold on to life is the best thing to do. While I'm not a huge fan of medical assistance in dying, I do think in scenarios like you just put forward, such a situation makes sense.
Thank you for sharing this 🌹
Thanks for the story. When my 91 yr old mother had 6 strokes to her brainstem at one time and entered the hospital my siblings (one who lived 100 miles away) wanted to move her into a nursing home (with a feeding tube too!!) on discharge. My mother made me (the youngest) medical POA and had made me promise to never put her in a nursing home. My father had been in one for 15+ yrs and until the week of the strokes my mother faithfully visited him. The sibling that lived 100 miles away said she would come and take care of my Mother even though she rarely went to the nursing home to visit my Father. I had to follow my Mother's wishes. Hardest decision I ever had to make but it was for the best.
Beautifully written and cuts to the core of our work as healers.
Thank you
Maybe the bigger swaths of human experience, such as connection, growth together in hardships, and truly loving each other, seeing and attempting to feel another’s perspective even if painful...is the “success” if there must be such a thing.
The concept of death as failure, or even a “good” death has never fit for me in medicine, and human life really. We all are born, live, and die. Yes, most could be more thoughtful and intentional about their own death, the passing of legacy to loved ones...most could be more educated about the physical process, but we all understand the impact of loss for those left behind. The million decisions needed to be made during a time of heart-breaking grief...the emotional tsunamis that as of yet don’t fit into our Western cultural narrative.
There is no playbook for living or dying with dignity, in love, other than the stories - like yours - that we share with vulnerability and openness to grow together. No “right” answer, other than the knowing in another’s eyes that we are connected and more whole together.
Your story is it’s own success, Dr. Cifu, imo. Your words share your heart and soul, and those of the family and patient you shared them with.
The heart and soul of beautiful WD, and the grace and beauty he and his lovely wife cultivated in their own family.
There is no greater gift.
Adam, This is pithy and elegant...and fundamentally underscores the "down" side of being a doctor. In my experience, most families will always vote for "do everything" because they are dealing with their own guilt/mortality more than the patient's. Fully understandable, and it does give them more time to deal with the inevitable, I suppose. Almost always worse for the patient (except, of course, when it is not, because every patient is their own science experiment -- a line I utter at virtually every visit...amazing how few people understand this.)
The underlying thread is that all of us are pretty committed to doing the best thing we can for each patient -- one by one. Unfortunately, lacking omnipotence, for us it is often just a guess/feeling that we hope is correct. Often, decades later, we are still not sure. Every good physician carries these feelings with them forever.
I am going to share this with the medical students with your permission. I often speak about this, but it is seldom so succinctly illustrated.
In this season of Thanks, we are thankful you take the time to pen these pieces. They matter.