God bless you in your care. When I experience stories like that of Kathi finding the DNR error, I wonder about what happens to "normal" people without knowledgeable loved ones.
In prior surgeries, I have received valium as an anxiolytic. I'm not sure if it has gone out of fashion, but I have found that taking 5mg about 30 minutes prior to surgery was effective.
George, Kathi and I talk about this all the time. The severity and complexity of my illness make me an unrepresentative case. But I am sure that people die every day because they do not have our "insider" understanding of medicine and the health care system.
Oh, Bill—what an ordeal! Bless you for redeeming the difficulties by sharing your experiences and offering helpful advice. (I thought it was “one and done” but I will remind friends to check the status of their wishes before each procedure!)
I guess you also gave feedback to the hospital? I’m glad your surgeon advocated for the best procedure but the team’s discussion in your presence was unprofessional and unhelpful, especially as it added to your stress.
Bill, as an internist with a decade of ICU experience, followed by 25 years as a hospice physician (my decision to switch careers was based in part on the horror I experienced over cases in the hospital like yours), I have comments about the care you received. 1) It's great your hospital responded so quickly to your DNR mixup. That never should have happened -- but it often does, because patients admitted for high-risk surgical procedures like yours may need quick intervention for bleeding, airway obstruction or other unforeseeable and potentially fatal complications during the procedure. These interventions are identical to those used in resuscitations that are entirely inappropriate for dying cancer patients, yet they're employed routinely -- but temporarily -- during procedures until the patient gets stabilized. Surgeons hate when staff are conflicted by DNR orders when sudden POTENTIALLY TREATABLE complications arise, so they often reverse DNR orders -- hopefully only for the procedure. Afterwards, when things are stable, the DNR orders should go back in place. I don't mean to imply there was no failure here -- there was! No one talked to you and Kathi about this when you were admitted. There is NO EXCUSE for that. 2) I can't tell you how many times I've seen disagreements among specialists -- particularly those who interface as closely as anesthesiologists and surgeons. But these differences should be worked out ahead of time. Hashing this out in front of the patient at the door to the OR is unconscionable. I would not blame this on understaffing or lack of time. There is ALWAYS time for coming to consensus on methods well in advance of the procedure. Once again, this is a failure of communication.
A deeper problem is that these were failures of empathy -- failures to FEEL what it must be like for a patient to experience these debacles. In my opinion, the ultimate failure of our medical system is its sole focus on CURING, on reversing or (in your case) bypassing the physical problem, while neglecting HEALING, which amounts to treating the whole human being, not just the body.
Empathic communication about your DNR order and your surgical team's approach might have helped turn a forbidding surgical procedure into a healing intervention -- or at least could have moved it in that direction.
I'm not convinced that the tracheostomy has been a healing intervention. It has improved my quality of life. It remains to be seen whether we can sustain this at home at a reasonable cost.
I am glad you got through that tough experience. Health care has gone backwards a few decades unfortunately. Staff shortages due to illness. Gee is COVID still around. Yes. Health care workers ignoring infection control measures. Now arguing in front of a patient. COVID has affected people's brains. I hope you are breathing easier now and having had this procedure will make you more comfortable. Many years ago I instructed a lawyer and his legal secretary about what was to be in my will etc. This included my wish that I wanted to be kept alive if there was any hope for me. The legal secretary questioned me on this despite her having no right to do so. The will was written with the complete opposite to my wishes. I diligently sat and read through the completed will despite pressure since it was near end of day. As such I found the error. The lawyer was red faced. I was awake during my caesarian section. When the doctors removed my baby daughter I felt cold. I had felt the pressure on my abdomen. A different scenario though when someone gets a child from the ordeal. Regarding the DNR: Perhaps someone thought you are an incredible and amazing person Bill and felt you should not leave us. Maybe it was a sign.
Bill, your ability to describe your experience and reflect on the extraordinary wider system problems and learning for services is just amazing. The whole things sounds awful, yet you are still able to thoughtfully, authentically and accurately describe what you are going through. you are educating us all, connecting with us and opening eyes. I just wish it was not happening to you, nor anyone. But thank you Bill.
1) As I mentioned to George Childs, it's important to keep in mind that my case is different. For many cancer patients, the standard 'first line' treatment succeeds. Every decision follows a well-established pathway.
2) Even when a mistake gets made, it often causes no harm, or redundancies in the system mean that the error is caught before harm can occur.
The upshot is that no one should read about my experience and infer that what's happened to me will necessarily happen to them.
I want to call out our hospital, The Ottawa Hospital, for the exemplary way they have responded to the DNR problem. The administrative leadership immediately launched an investigation of what happened; it's clear that they take it very seriously.
Thank you, Bill, for your ongoing reports.
God bless you in your care. When I experience stories like that of Kathi finding the DNR error, I wonder about what happens to "normal" people without knowledgeable loved ones.
In prior surgeries, I have received valium as an anxiolytic. I'm not sure if it has gone out of fashion, but I have found that taking 5mg about 30 minutes prior to surgery was effective.
Continued prayers,
George
George, Kathi and I talk about this all the time. The severity and complexity of my illness make me an unrepresentative case. But I am sure that people die every day because they do not have our "insider" understanding of medicine and the health care system.
Oh, Bill—what an ordeal! Bless you for redeeming the difficulties by sharing your experiences and offering helpful advice. (I thought it was “one and done” but I will remind friends to check the status of their wishes before each procedure!)
I guess you also gave feedback to the hospital? I’m glad your surgeon advocated for the best procedure but the team’s discussion in your presence was unprofessional and unhelpful, especially as it added to your stress.
I continue to pray for you.
Bill, as an internist with a decade of ICU experience, followed by 25 years as a hospice physician (my decision to switch careers was based in part on the horror I experienced over cases in the hospital like yours), I have comments about the care you received. 1) It's great your hospital responded so quickly to your DNR mixup. That never should have happened -- but it often does, because patients admitted for high-risk surgical procedures like yours may need quick intervention for bleeding, airway obstruction or other unforeseeable and potentially fatal complications during the procedure. These interventions are identical to those used in resuscitations that are entirely inappropriate for dying cancer patients, yet they're employed routinely -- but temporarily -- during procedures until the patient gets stabilized. Surgeons hate when staff are conflicted by DNR orders when sudden POTENTIALLY TREATABLE complications arise, so they often reverse DNR orders -- hopefully only for the procedure. Afterwards, when things are stable, the DNR orders should go back in place. I don't mean to imply there was no failure here -- there was! No one talked to you and Kathi about this when you were admitted. There is NO EXCUSE for that. 2) I can't tell you how many times I've seen disagreements among specialists -- particularly those who interface as closely as anesthesiologists and surgeons. But these differences should be worked out ahead of time. Hashing this out in front of the patient at the door to the OR is unconscionable. I would not blame this on understaffing or lack of time. There is ALWAYS time for coming to consensus on methods well in advance of the procedure. Once again, this is a failure of communication.
A deeper problem is that these were failures of empathy -- failures to FEEL what it must be like for a patient to experience these debacles. In my opinion, the ultimate failure of our medical system is its sole focus on CURING, on reversing or (in your case) bypassing the physical problem, while neglecting HEALING, which amounts to treating the whole human being, not just the body.
Empathic communication about your DNR order and your surgical team's approach might have helped turn a forbidding surgical procedure into a healing intervention -- or at least could have moved it in that direction.
Thanks, Brad. Your insights are so valuable.
I'm not convinced that the tracheostomy has been a healing intervention. It has improved my quality of life. It remains to be seen whether we can sustain this at home at a reasonable cost.
Excerpts from In Praise of Air, by John O'Donohue:
Let us bless the air,
Benefactor of breath,
Keeper of the fragile bridge
We breathe across. ...
Air, home of memory where
Our vanished days secretly gather,
Receiving every glance, word, and act
That fall from presence,
Taking all our unfolding in,
So that nothing is lost of forgotten. ...
Air: kingdom of spirit
Where our departed dwell,
Nearer to us than ever,
Where the gods preside. ...
In the name of the air,
The breeze,
And the wind,
May our souls
Stay in rhythm
With eternal
Breath.
I am glad you got through that tough experience. Health care has gone backwards a few decades unfortunately. Staff shortages due to illness. Gee is COVID still around. Yes. Health care workers ignoring infection control measures. Now arguing in front of a patient. COVID has affected people's brains. I hope you are breathing easier now and having had this procedure will make you more comfortable. Many years ago I instructed a lawyer and his legal secretary about what was to be in my will etc. This included my wish that I wanted to be kept alive if there was any hope for me. The legal secretary questioned me on this despite her having no right to do so. The will was written with the complete opposite to my wishes. I diligently sat and read through the completed will despite pressure since it was near end of day. As such I found the error. The lawyer was red faced. I was awake during my caesarian section. When the doctors removed my baby daughter I felt cold. I had felt the pressure on my abdomen. A different scenario though when someone gets a child from the ordeal. Regarding the DNR: Perhaps someone thought you are an incredible and amazing person Bill and felt you should not leave us. Maybe it was a sign.
Bill, your ability to describe your experience and reflect on the extraordinary wider system problems and learning for services is just amazing. The whole things sounds awful, yet you are still able to thoughtfully, authentically and accurately describe what you are going through. you are educating us all, connecting with us and opening eyes. I just wish it was not happening to you, nor anyone. But thank you Bill.
Thank you, Ann.
Two more points:
1) As I mentioned to George Childs, it's important to keep in mind that my case is different. For many cancer patients, the standard 'first line' treatment succeeds. Every decision follows a well-established pathway.
2) Even when a mistake gets made, it often causes no harm, or redundancies in the system mean that the error is caught before harm can occur.
The upshot is that no one should read about my experience and infer that what's happened to me will necessarily happen to them.
Hi Everyone,
I want to call out our hospital, The Ottawa Hospital, for the exemplary way they have responded to the DNR problem. The administrative leadership immediately launched an investigation of what happened; it's clear that they take it very seriously.
Christe Eleison!
Bill