"Do you want to live?"

[nutella]

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?

[Susie2310]

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.

[Susie2310]

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.

[brownbook]

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.

[JKL33]

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.

[Susie2310]

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.

[Susie2310]

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.

[JKL33]

Are you making a distinction between having an Advance Directive and having a conversation with a PCP (during which, having an Advance Directive is usually encouraged)? I'm seriously trying to understand here. Is it that you agree with the idea of advance planning but feel that some people may prefer to not involve the PCP in such?

I don't mean to not understand what you're saying about all of this; perhaps I am just not thinking outside the box. Working in the ED I witness a fair number of these discussions and situations, and I can't say I've ever seen an ED provider misrepresent someone's stated wishes, and it seems like they try very hard not to misinterpret them, too. Is this concern more frequent with PCPs?

[Susie2310]

Are you making a distinction between having an Advance Directive and having a conversation with a PCP (during which, having an Advance Directive is usually encouraged)? I'm seriously trying to understand here. Is it that you agree with the idea of advance planning but feel that some people may prefer to not involve the PCP in such?

I don't mean to not understand what you're saying about all of this; perhaps I am just not thinking outside the box. Working in the ED I witness a fair number of these discussions and situations, and I can't say I've ever seen an ED provider misrepresent someone's stated wishes, and it seems like they try very hard not to misinterpret them, too. Is this concern more frequent with PCPs?

In my post I was referring to having an Advance Directive and having an end of life conversation with a PCP as two separate events. Yes, you are correct that I agree with advance planning i.e. an Advance Directive, and I know that some people prefer to not involve the PCP in the drawing up of their Advance Directive. Some people do this and some people don't.

I think the majority of providers make a sincere effort to correctly represent patients stated wishes and to avoid misinterpreting them. However, misunderstandings occur, and personal bias can also influence events.

I used the example of the PCP when I initially replied to nutella's post where he/she had referred to having end of life conversations with the physician who knows the patient best or most and whom the patient trusts. I don't have any reason to think that PCP's are more prone to misunderstanding or bias than any other provider.

[JKL33]

Gotcha. Thanks for the reply.

[Susie2310]

Gotcha. Thanks for the reply.

Thank you for the good conversation.

[Steffy44]

I ask, as part of the admission process. Most understand what I'm asking but some are not sure what DNR/DNI means. I check yes or no after I explain basics of what it is. Our hospitalists go more in depth. The ones I've observed have been very gentle in their explanations without trying to scare them to death. It's a frank discussion we must have. The patients wishes must be known because if they can't tell us when "it" hits the fan and families don't always want to honor their 98 year old moms wishes.

[Palliative Care, DNP]

Goals of Care conversations are part of my daily routine. Patients typically do not understand that DNR does not mean we stop treating the illness. I typically advise them that all measures continue unless/until their heart were to stop. I describe what a CODE would be like for someone in their condition. We have CPR pamphlets with statistics advising the odds of CPR being successful. We always address Advanced Care Plans (ACP) as it is imperative to appoint someone to make decisions should you be unable to do so. Not every patient wants to appoint their spouse as he/she may struggle to make choices the patient would want. Most patients are grateful to have had all of the facts and information given to them to make the best decisions in regards to their care. Many hospitalists that I work with struggle with these conversations and often leave patients confused.