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"Do you want to live?"

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My work is in palliative care and takes place in a hospital.

I get that nobody has time so to speak. All healthcare workers including physicians, nurses, aids and others have the same dilemma: More patients with more complex tasks with the same amount of staff or (more often) less staff = more tasks to complete with less time or more tasks than time available.

I understand that discussing code status and "options" is time intense and has gotten more complex and confusing. Furthermore, it seems to cause a lot of ambivalence and endless questions about possible scenarios that may or may not happen - which is why providers are not especially enthusiastic when they hear that the patient or family wish to discuss.

The fact that everybody - regardless of age and health status - by default is a "Full Code" with the potential for maximum treatments leads to a lot of misunderstandings for patients and their families when they are not aware of this. People need to know "what they are signed up for by default" when there is a chance that they are being subjected to resuscitation because of illness and/or age.

There is so much confusion around advanced care directives ! And it gets worse every year I feel because we are adding more biomedical "options", medications, and interventions.

The least meaningful "conversations" that I have overheard over time include sentences like

"Do you want to live?"

"Do you want us to do everything?"

"Do you want us to bring you back from the death?"

"Do you want us to break your ribs when we jump on your chest?"

"Do you want us to do everything or nothing?"

"Are you ready to give up the fight?"

You get the idea....

I mean, what kind of language is that????

When I asked about the reason for using "do you want to live?" outside of the patient's room the explanation was "I have to be time-efficient and this is what it comes down to. The patient said clearly she/he wants to live - that means full code because we will try everything to make it happen."

To be honest - I was speechless.

I totally get the time argument and with effort I can follow the "logic" but the patient for sure did not understand based on this conversation what resuscitation means.

Or the implications. Or if this is actually congruent with the patient's values /preferences/ wishes - because the physician does not know that without asking other questions.

Today, I also listened to this podcast that is about this kind of problem - I can highly recommend it :

Geripal Podcast Live with Laura Petrillo by GeriPal PodCasts | Free Listening on SoundCloud

Do your physicians/NPs/ PA use any specific format to discuss code status and advanced care planning?

Edited by tnbutterfly

MunoRN, RN

Specializes in Critical Care. Has 10 years experience.

I have worked with a couple of ED docs that were infamous for addressing imminent end of life questions with "do you want to live?", one faced a sentinel event investigation and no longer had privileges at the hospital (I'm not sure what happened with his license) after a patient presented to the ED with a clear POLST stating he didn't want to be intubated and if necessary would just be comfort measures only. The ED doc didn't like that and simply asked "do you want to live", which the patient replied "well, yeah but.." the doc cut him off and basically intubated him against his will stating he had agreed to it by saying he wanted to live. I've heard other ED docs pose the question the same or similar ways, it's not unheard of for us to just bring in another doc to clarify the issue, usually the intensivist.

We have a couple of hospitalists who are adamant about discussing code status. Those that are are very thorough and specific when talking to patients and families. Other physicians won't touch the subject with a 20 foot pole. This is something we ask as part of our admission process (as nurses), but I do wish everyone was more direct and thorough with status wishes...TV has done the biggest disservice to the realities of codes, and I think a lot of people have very unrealistic expectations of code outcomes, which is really sad.

I would love to education on code status begin in the pcp office and the documentation be clear in a medical record easily accessible to inpatient and outpatient facilities. If someone needs to be emergently intubated, that is the worst possible time to try to explain what the options are. I could see why the communication is lacking.

JBudd, MSN

Specializes in Trauma, Teaching. Has 40 years experience.

I had one admitting doc get very frustrated when confirming the patient's previous DNR; wife said no as he was still enjoying life, had been horse riding the day before, likely stroke now on top of dementia (many years ago). She thought if she agreed to remain DNR we wouldn't treat him. The doc was having trouble making her understand.... so when he left the room I explained DNR is not Do Not Treat, it just meant that if his heart stopped or he stroked out completely, we wouldn't do CPR and hook him up on all the life support; but in the meantime we would be doing everything possible to get him back home to his previous level.

She looked so relieved, and said in that case keep the DNR. Doc thanked me quite a bit for that, admitted he wasn't communicating well with the wife.

Good topic. A family member arrived at the ER by ambulance (Advance Directive already in the ER EMR), and as the work-up began, the doctor said: "What do you want us to do if your heart stops?" My family member is active, fully functional, enjoying their life, wishes to continue to live, and was very confused and upset by the question (I could see this). I told the doctor that my family member is active, enjoying their life, and wants to continue living, and explained what was written in my family member's Advance Directive, whereupon my family member looked relieved and told the doctor about their Advance Directive. The doctor moderated their approach and made my family member a Full Code. My family member told me they didn't understand the doctor's question and felt pressured by the doctor's approach. This situation shook both of us up, and made us both very wary of these type of questions from ER doctors in future.

On another occasion, a family member presented to the ER (Advance Directive already on the ER EMR). Virtually the first words from the hospitalist were: "What do you want us to do if your heart stops?", and "Do you want us to put a breathing tube in you?" As in the first scenario, my family member, who is normally active and enjoying their life, felt put on the spot and didn't know how to answer. I explained what my family member wanted and told the doctor I would be happy to discuss their Advance Directive with him/her. The doctor made my family member a Full Code, as my family member wished at that point in their care.

Obviously it is very important to discern the patient's wishes regarding resuscitation if their heart stops, but, in my opinion, spending a few moments more to phrase the question more clearly would be far superior, i.e. "If your heart stops would you like us to make every effort to resuscitate you so that if we are successful you will live, or would you prefer that we don't try to resuscitate you and allow you to die?" Then clarify what is written on the patient's Advance Directive (if they have one) with the patient/family.

Edited by Susie2310

Straight No Chaser, ASN, LPN

Specializes in Sub-Acute. Has 5 years experience.

I think its also important to attempt to explain what exactly "full code" means to some of these frail older folks and their families, especially. I have so many patients who are full codes (I work in LTC) If we did a better job explaining that DNR doesn't mean don't treat I think less people would choose full code.

blondy2061h, MSN, RN

Specializes in Oncology. Has 15 years experience.

I've usually seen the conversation brought up as "What do you want us to do if your heart stops ot you're no longer able to breath on your own?" Obviously there's more to goals of care discussion than that, but it's a decent starting point.

I agree that it would be most beneficial to have those conversations upstream with the physician who knows the patient best or most and who the patient trusts. And when something happens and the patients ends in the ER, it is more clear what the wishes are.

I have called PCP offices in the past for collaboration purposes and one NP told me "I know I should be doing this - but I see patients every 10 minutes and there is no time for it."

Medicare has billing codes now to reimburse for those discussions. This was the most common argument I heard in the past "I do not get paid for those long discussions", which is not true anymore. However, it does not seem that much has changed in general.

I had one admitting doc get very frustrated when confirming the patient's previous DNR; wife said no as he was still enjoying life, had been horse riding the day before, likely stroke now on top of dementia (many years ago). She thought if she agreed to remain DNR we wouldn't treat him. The doc was having trouble making her understand.... so when he left the room I explained DNR is not Do Not Treat, it just meant that if his heart stopped or he stroked out completely, we wouldn't do CPR and hook him up on all the life support; but in the meantime we would be doing everything possible to get him back home to his previous level.

She looked so relieved, and said in that case keep the DNR. Doc thanked me quite a bit for that, admitted he wasn't communicating well with the wife.

Nurses are the biggest patient advocates....

There is so much confusion and mistrust about advanced directives - good that you clarified.

Obviously it is very important to discern the patient's wishes regarding resuscitation if their heart stops, but, in my opinion, spending a few moments more to phrase the question more clearly would be far superior, i.e. "If your heart stops would you like us to make every effort to resuscitate you so that if we are successful you will live, or would you prefer that we don't try to resuscitate you and allow you to die?" Then clarify what is written on the patient's Advance Directive (if they have one) with the patient/family.

I agree that there are many barriers to addressing advanced directives in a way that is accepted by patients, their families, the governing entities and clinicians alike.

What I want to point out is that when we talk about "attempt to resuscitate" that it has to be made clear that it is an attempt and there is no guarantee that we would be able to restore circulation and/or that the outcome could result in a less functional state, hooked up to machines etc depending on the baseline problems. In my opinion, it is important to establish informed consent - meaning the person understands what they are deciding for or against.

There can be a lot of provider bias in the way that it is discussed as well.

RNperdiem, RN

Has 14 years experience.

Some people refuse to talk about death, dying and plans for the end. Talking about these things means making decisions and admitting that we all die.

I am dealing with some of this now with my father in his last days. After some major terminal agitation, hospice started my father on a strong regimen of pain meds and sedation to deal with the pain and agitation.

My brother from out of town (why is it always the out of town relatives?) is unsettled. He wants to have Dad fully awake and ask him if he is ready for the end. I told him that even at his healthiest, avoidance of the issue was his baseline. When he became sick, he refused to talk about what he wanted for end of life, plans etc. with anyone. Refusing to face facts was how he dealt with difficult issues.

What I want to point out is that when we talk about "attempt to resuscitate" that it has to be made clear that it is an attempt and there is no guarantee that we would be able to restore circulation and/or that the outcome could result in a less functional state, hooked up to machines etc depending on the baseline problems. In my opinion, it is important to establish informed consent - meaning the person understands what they are deciding for or against.

There can be a lot of provider bias in the way that it is discussed as well.

Informed consent for choosing to be a Full Code or DNR? I think most patients/family know there are no guarantees as to the outcomes of resuscitation attempts, and I think it is obvious to most patients/family that choosing not to be resuscitated in the case of one's heart stopping will result in one's death. But if you are referring to questions of whether the patient has the legal capacity and legal competence to make their own end of life decisions, then that is a much more complex discussion and my understanding is that usually these determinations are made by the physician. Also, state laws vary as to Advance Directives, and I believe case law is important too.

I agree that there can certainly be a lot of provider bias in these discussions.

I agree that it would be most beneficial to have those conversations upstream with the physician who knows the patient best or most and who the patient trusts. And when something happens and the patients ends in the ER, it is more clear what the wishes are.

I have called PCP offices in the past for collaboration purposes and one NP told me "I know I should be doing this - but I see patients every 10 minutes and there is no time for it."

Medicare has billing codes now to reimburse for those discussions. This was the most common argument I heard in the past "I do not get paid for those long discussions", which is not true anymore. However, it does not seem that much has changed in general.

Having a conversation about end of life wishes with the PCP ahead of ending up in the ER with serious medical problems is not something everyone wishes to do, and patients often have very good reasons for not initiating/participating in these discussions with their PCP. I think if this is what patients want to do it may be beneficial for them, but if a patient chooses not to do this, I think that is fine too. We all have different values and preferences.

As I see it, and in my own experience, the difficulty with this situation is that one is attempting to make decisions about possible future situations concerning their own body and their own life, which may be imminent or in the distant future, or may not happen at all, and some people prefer not to bind themselves to a future course of action that is documented by their PCP and that may be subject to provider bias (which we know exists) both in documentation and interpretation, as no-one can know with certainty what the future circumstances will be, or what their wishes as a patient will be at that time. However, I think having an Advance Directive is very important, and that appointing a highly trusted person as one's Agent to make health care decisions for one in the event that one is unable to do this for oneself is very important.

Edited by Susie2310

brownbook

Has 36 years experience.

The whole "death panel" and can PCP's bill medicare for sitting in their office and talking with patients about end of life care didn't help the whole situation. I did a quick Google search and it implied that doctors can bill medicare (it didn't seem like very much reimbursement?) to talk about end of life decisions, but very few doctors were doing it.

Having a conversation about end of life wishes with the PCP ahead of ending up in the ER with serious medical problems is not something everyone wishes to do, and patients often have very good reasons for not initiating/participating in these discussions with their PCP.

What would be the reasons? I'm not trying to play ignorant here, I just can't think of much of an upside to taking a chance that you won't be well enough to make any decision when the time comes.

As I see it, and in my own experience, the difficulty with this situation is that one is attempting to make decisions about possible future situations concerning their own body and their own life, which may be imminent or in the distant future, or may not happen at all, and some people prefer not to bind themselves to a future course of action that is documented by their PCP and that may be subject to provider bias (which we know exists) both in documentation and interpretation, as no-one can know with certainty what the future circumstances will be, or what their wishes as a patient will be at that time. However, I think having an Advance Directive is very important, and that appointing a highly trusted person as one's Agent to make health care decisions for one in the event that one is unable to do this for oneself is very important.

If one plans to defer important decisions such as this until the time a decision is needed, and then plans to be well enough to make that decision at that time, then wouldn't s/he also be well enough to not be bound to a previously made decision?

You're saying that it's okay to defer if your reason for doing so is that you don't want to be bound to a decision. But, when the time comes you're either well enough to change your previous decision, or you won't be well enough to make ANY decision.

Can you elaborate on the "future course of action that is documented by their PCP and that may be subject to provider bias (which we know exists) both in documentation and interpretation"? I'm not sure what you mean by that.

What would be the reasons? I'm not trying to play ignorant here, I just can't think of much of an upside to taking a chance that you won't be well enough to make any decision when the time comes.

What would be the reasons for a patient not initiating or participating in an end of life discussion with their PCP? I can think of many, as I'm sure you can. Some examples:

1. Personal preference.

2. Lack of confidence in their PCP.

3. Lack of confidence in the health care system.

If a patient has drawn up an Advance Directive and designated an Agent to act for them if the situation arises where they are unable to make health care decisions for themself as I mentioned above and stated I believe this is very important to do, then they won't be taking a chance that they won't be able to make any decision when the time comes.

If one plans to defer important decisions such as this until the time a decision is needed, and then plans to be well enough to make that decision at that time, then wouldn't s/he also be well enough to not be bound to a previously made decision?

You're saying that it's okay to defer if your reason for doing so is that you don't want to be bound to a decision. But, when the time comes you're either well enough to change your previous decision, or you won't be well enough to make ANY decision.

Can you elaborate on the "future course of action that is documented by their PCP and that may be subject to provider bias (which we know exists) both in documentation and interpretation"? I'm not sure what you mean by that.

1. In reply to your first paragraph, I didn't suggest deferring important decisions such as end-of-life decisions; I actually stated that I think it is important to draw up an Advance Directive and designate an Agent to act for one if the situation arises where one is unable to make health care decisions for oneself.

2. In reply to your second paragraph, I didn't suggest that it is ok to defer one's end-of-life discussion with one's PCP if one's reason is that one doesn't want to be bound to a decision. Please read what I wrote again.

3. In reply to your third paragraph, by "future course of action that is documented by their PCP and that may be subject to provider bias (which we know exists) both in documentation and interpretation" I was referring to the PCP's documentation on the patient's medical record of the end-of-life discussion and the patient's stated wishes - this is the future course of action in regard to the patient's end of life health care. When I said that the recording of this discussion may be subject to provider bias both in documentation and interpretation, I meant that in regard to the act of documentation human beings tend to interpret the words of others according to their own frames of reference, and are influenced by their own experiences and prejudices even if they do their best to remain neutral, and in regard to interpretation of the documented discussion I meant that at a later date the possibility of these biases exist for the provider interpreting the meaning of what is documented by the original PCP re the patient's end of life wishes.

Hope this clarifies my post.