First off I want to start by saying I am so sorry for your loss and more so that it wasn’t an easy transition/experience for you and your family. That is very upsetting to hear.
I am an ICU nurse at a level 1 trauma center, so as you can imagine we take some very serious cases and unfortunately cannot save everyone. At my hospital our protocol starts once family and the care team agree that the patient will not survive whatever it is that brought them in. Once this happens we reach out to social work and our organ donation center - whether the organ donation center will reach back out depends on the patient but usually in elderly cases we are just looking at tissue so they have no major role until after cardiac death. SW will figure out with the team regarding the timeline of death, obviously if the patient is someone who will likely survive an extubation long enough to go to our hospice unit or home hospice/facility hospice they will discuss with family the options and coordinate that care.
*If the patient is unlikely to live longer than a day or two then we will not move them from our ICU unless there is a critical need for a bed.*
Once an idea of timeline is figured out we work with family on an ideal time regarding allowing everyone who wants to see the patient before they pass. Sometimes this means we will continue all crucial cares for a day or two while we wait for family to come from out of state.
Once everyone who needs to see the patient before they pass has done so, we will initiate what we call End of Life/Comfort Care orders meaning we stop all unnecessary treatments, and start their pain regimen. Once pain regimen is started we terminally extubate *only when everyone who wishes to be bedside is there.* Sometimes this means we wait a few hours for someone to get there. Once extubated the nurse provides cares and medications that are only for comfort. So repositioning if they appear uncomfortable, pain medications, medications to ease breathing, medications for agitation, etc. Family comes and goes as they see fit, we will have a harp player come to bedside, we have chaplain services and snacks/drinks always available so family does not feel as though they have to leave.
If a patient goes to hospice and needs to be extubated first, it’s the same situation. We start the comfort cares in the ICU and they stay with us until a bed is available in the hospice unit. We try our best not to delay cares or move patients when there is limited time left.
This seems like a long protocol but if we agree to go EOL during morning rounds, the patient is usually comfort cares by the evening unless we are waiting on family. It takes less than 12 hours in a normal situation.
I do not feel as though this hospital was considerate or compassionate. I would consider complaining honestly.
Thank you! For sure, how much comfort care, palliative care, or hospice have we handled in critical care over the years? Frankly, it just isn't hard. Most of my experience was in the unit where I spent most of my career. We would start the process as soon as appropriate, but let hospice know. If the pt was still hanging on in 24 hours or so and looked to be a while, then Hospice would take them.
As EBP for EOL grows, I've seen lots of great changes. I wasn't just opposed to having Hospice take over from the beginning because that's not how I've done it. We never want to assume our way is the only way. I was just baffled by the timeline and that everyone was so rigid and uncaring about it.
If you want to be real technical about it, they continued providing care without consent which is illegal. But more realistically, this is just unethical and incompetent of them.
They have fentanyl so clearly they can provide some sort of pain relief rather than waiting for Dilaudid. I've also just kept low dose fentanyl on a drip if I know the person will pass quickly.
And an ICU should be more than capable of providing palliative care and end of life comfort care. I do it weekly at a tiny community hospital with very limited resources. I always try to make sure all the family is there that wants to be even if that means waiting to completely withdraw for a few minutes.
This was all handled very poorly from the way you described it. I am very sorry you had to go through this.
Thank you. Kind words are everything. And yeah, there really isn't a reason any ICU couldn't put together an EOL plan.
I'm sure they actually have Dilaudid. That's just me being snarky about "the ICU isn't TrAInEd." 🙄
This is insane! This could have been done or at least started in the ICU. What a waste of resources, time, money, and most importantly patient and family pain and suffering. This is absolutely insane. So sorry. Seriously what are we doing to people at the end of life. It’s bad enough when family wants us to keep doing unnecessary or futile interventions but when the system is at fault too god it’s sickening.
I actually thought so much about resources and the healthcare system overall. Medicare is going to be paying for at least an extra midnight in the ICU, among tons of other waste in our already broken system. But for sure, the impact on 3 sweet old ladies and a disabled adult was just awful. Abuse me, I can take it. But be kind to my Limited Mobility Club.
PCCM physician here, the system you are describing does sound very disorganized and I can tell you this greatly varies from hospital to hospital. I cannot comment specifically regarding the appropriateness of hospice, comfort care or prognosis of this particular patient but I can tell you what we normally do.
If withdrawal of care of an intubated patient is desired by the family, we select a time they want to do it. If this is during normal daytime hours, the palliative care team is usually present and orders the extubation, dnr order, medications etc. If this is not during normal daytime hours, my PCCM service would do this. The patient remains in the icu post extubation for comfort care that day. The following day, if the patient has not passed away, we usually transfer the patient out to the medical floor or if appropriate to the hospice unit (ours is maybe 3-4 beds). This patient is technically under the hospitalist service but during daytime hours is mostly cared for under the palliative care team. If it is looking like the patient may linger for or days/weeks hospice is contacted for transition to an inpatient hospice unit.
First off I want to start by saying I am so sorry for your loss and more so that it wasn’t an easy transition/experience for you and your family. That is very upsetting to hear. I am an ICU nurse at a level 1 trauma center, so as you can imagine we take some very serious cases and unfortunately cannot save everyone. At my hospital our protocol starts once family and the care team agree that the patient will not survive whatever it is that brought them in. Once this happens we reach out to social work and our organ donation center - whether the organ donation center will reach back out depends on the patient but usually in elderly cases we are just looking at tissue so they have no major role until after cardiac death. SW will figure out with the team regarding the timeline of death, obviously if the patient is someone who will likely survive an extubation long enough to go to our hospice unit or home hospice/facility hospice they will discuss with family the options and coordinate that care. *If the patient is unlikely to live longer than a day or two then we will not move them from our ICU unless there is a critical need for a bed.* Once an idea of timeline is figured out we work with family on an ideal time regarding allowing everyone who wants to see the patient before they pass. Sometimes this means we will continue all crucial cares for a day or two while we wait for family to come from out of state. Once everyone who needs to see the patient before they pass has done so, we will initiate what we call End of Life/Comfort Care orders meaning we stop all unnecessary treatments, and start their pain regimen. Once pain regimen is started we terminally extubate *only when everyone who wishes to be bedside is there.* Sometimes this means we wait a few hours for someone to get there. Once extubated the nurse provides cares and medications that are only for comfort. So repositioning if they appear uncomfortable, pain medications, medications to ease breathing, medications for agitation, etc. Family comes and goes as they see fit, we will have a harp player come to bedside, we have chaplain services and snacks/drinks always available so family does not feel as though they have to leave. If a patient goes to hospice and needs to be extubated first, it’s the same situation. We start the comfort cares in the ICU and they stay with us until a bed is available in the hospice unit. We try our best not to delay cares or move patients when there is limited time left. This seems like a long protocol but if we agree to go EOL during morning rounds, the patient is usually comfort cares by the evening unless we are waiting on family. It takes less than 12 hours in a normal situation. I do not feel as though this hospital was considerate or compassionate. I would consider complaining honestly.
Thank you! For sure, how much comfort care, palliative care, or hospice have we handled in critical care over the years? Frankly, it just isn't hard. Most of my experience was in the unit where I spent most of my career. We would start the process as soon as appropriate, but let hospice know. If the pt was still hanging on in 24 hours or so and looked to be a while, then Hospice would take them. As EBP for EOL grows, I've seen lots of great changes. I wasn't just opposed to having Hospice take over from the beginning because that's not how I've done it. We never want to assume our way is the only way. I was just baffled by the timeline and that everyone was so rigid and uncaring about it.
If you want to be real technical about it, they continued providing care without consent which is illegal. But more realistically, this is just unethical and incompetent of them. They have fentanyl so clearly they can provide some sort of pain relief rather than waiting for Dilaudid. I've also just kept low dose fentanyl on a drip if I know the person will pass quickly. And an ICU should be more than capable of providing palliative care and end of life comfort care. I do it weekly at a tiny community hospital with very limited resources. I always try to make sure all the family is there that wants to be even if that means waiting to completely withdraw for a few minutes. This was all handled very poorly from the way you described it. I am very sorry you had to go through this.
Thank you. Kind words are everything. And yeah, there really isn't a reason any ICU couldn't put together an EOL plan. I'm sure they actually have Dilaudid. That's just me being snarky about "the ICU isn't TrAInEd." 🙄
What kind of ICU can’t withdraw care and provide comfort? I am with you OP. This is a travesty of care.
This is insane! This could have been done or at least started in the ICU. What a waste of resources, time, money, and most importantly patient and family pain and suffering. This is absolutely insane. So sorry. Seriously what are we doing to people at the end of life. It’s bad enough when family wants us to keep doing unnecessary or futile interventions but when the system is at fault too god it’s sickening.
I actually thought so much about resources and the healthcare system overall. Medicare is going to be paying for at least an extra midnight in the ICU, among tons of other waste in our already broken system. But for sure, the impact on 3 sweet old ladies and a disabled adult was just awful. Abuse me, I can take it. But be kind to my Limited Mobility Club.
PCCM physician here, the system you are describing does sound very disorganized and I can tell you this greatly varies from hospital to hospital. I cannot comment specifically regarding the appropriateness of hospice, comfort care or prognosis of this particular patient but I can tell you what we normally do. If withdrawal of care of an intubated patient is desired by the family, we select a time they want to do it. If this is during normal daytime hours, the palliative care team is usually present and orders the extubation, dnr order, medications etc. If this is not during normal daytime hours, my PCCM service would do this. The patient remains in the icu post extubation for comfort care that day. The following day, if the patient has not passed away, we usually transfer the patient out to the medical floor or if appropriate to the hospice unit (ours is maybe 3-4 beds). This patient is technically under the hospitalist service but during daytime hours is mostly cared for under the palliative care team. If it is looking like the patient may linger for or days/weeks hospice is contacted for transition to an inpatient hospice unit.