29 y/o plans her death for Nov 1st

[DesertPT]

Worse than this, there are some doctors who would ignore a properly executed advance directive and go with the family wishes even if they family admits that is not what the patient would want. I think it is very sad that someone can have their wishes disrespected in such a manner.

Have seen the same happen with organ donation and it just kills me.

People's willingness to betray the wishes of others in what I can only assume to be an attempt to force their own personal opinion to win out is saddening indeed.

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[dpmd]

I agree. Some people die with maximum intervention attempting to keep them alive until the bitter end because that is what they desire, but most don't. I certainly wouldn't want to go that way.

What I am trying to get at is that people are using the "death with dignity" catchphrase for two main reasons that I can think of: 1.) It has alliteration, and is therefore catchy. 2.) They insist on defining "dignity" as not requiring extensive care from others for an extended period of time before death.

Many posts (including yours, though I am in no way trying to bash you) are creating a dichotomy where you either die by physician-assisted suicide long before you need intense care and support, or you stay alive with every maximum intervention possible until the bitter end. I have had loved ones, however, who fought their disease until it was apparent that they were not going to win, and then chose to discontinue treatment and let their disease run its natural, un-manipulated course leading up until their death. Any care they received at that point was strictly to relieve discomfort and not to stop the progression of their disease or attempt to keep them alive longer.

None of us has any right to define dignity specifically as any one of these three particular circumstances (or any other circumstance for that matter).

I use the icu scenario because it is one i see repeated so ofren when people don't discuss end of life care. That is why i see no dignity in it. Because every person i have ever talked to about end of life wishes was absolutely clear that the icu scenario was not what the would want (even if they wanted to go through with their high risk surgery or with palliative chemo or whatever). Perhaps one day i will meet someone who actually does want to die that way but it hasn't happened yet. I never discounted hospice (and in fact talked about how it would be an important component during the waiting period for someone seeking a lethal prescription). The death with dignity site specifically defines it as death when the end of life care wishes of the patient has been respected. I think that is something we can agree on.

 

[dpmd]

People's willingness to betray the wishes of others in what I can only assume to be an attempt to force their own personal opinion to win out is saddening indeed.

I mean i get it. You are sad and you want your loved back how they were. It is our job as doctors to help you deal with those emotions and help you understand that isn't an option so respecting their wishes is the best way to proceed.

 

[DesertPT]

...when people don't discuss end of life care....

This is definitely a huge source of these complicated situations. I'm not surprised to hear you say nobody you talk to wants the ICU scenario voluntarily. But somehow it is thrust upon them, through any number of potential scenarios I suppose. It's just so hard to make decisions when emotions are running high.

 

[ImmunoLove]

Worse than this, there are some doctors who would ignore a properly executed advance directive and go with the family wishes even if they family admits that is not what the patient would want. I think it is very sad that someone can have their wishes disrespected in such a manner.

Have seen the same happen with organ donation and it just kills me.

Sadly true. Also, dead patient can't sue you, but family of dead patient can...At least that's the rationalization I've gotten in response... Strange world we live in.

 

[dpmd]

Sadly true. Also, dead patient can't sue you, but family of dead patient can...At least that's the rationalization I've gotten in response... Strange world we live in.

Well you don't just say F you i am going to do what i want. It is a discussion where you try to guide them in the right direction and using a multidisciplinary approach plus or minus ethics committee you can usually achieve the desired outcome. It is the docs that just roll over and take it instead of going through the trouble that irritate me.

 

[2Pints]

I mean i get it. You are sad and you want your loved back how they were. It is our job as doctors to help you deal with those emotions and help you understand that isn't an option so respecting their wishes is the best way to proceed.

Thank you for seeing it that way. The majority of the physicians I work with are really good at painting a realistic picture for families when the patient is circling the drain. There are a handful, however, that only discuss the best case scenario because that seems easier at the time and usually makes for a very difficult conversation for their colleagues later.

 

[ImmunoLove]

Well you don't just say F you i am going to do what i want. It is a discussion where you try to guide them in the right direction and using a multidisciplinary approach plus or minus ethics committee you can usually achieve the desired outcome. It is the docs that just roll over and take it instead of going through the trouble that irritate me.

I agree with you completely. Seems pretty straight-forward as far as ethics goes (the patient wished it, the rest be damned-- of course, try and help the family understand this, as you said, through a multidisciplinary approach), but I've not seen it practiced as such, unfortunately.

 

[Kahreek]

I think organ donation should be opt out like in all civilized european countries.

 

[deleted480308]

I think organ donation should be opt out like in all civilized european countries.

Nope, no one has a right to my organs without my express permission

 

[FIREitUP]

I think organ donation should be opt out like in all civilized european countries.

except some religions explicitly forbid this...

 

[dpmd]

except some religions explicitly forbid this...

What religions forbid people from indicating they don't want to donate organs? That is what they do in a opt out sort of setting. Anyone who has an objection to donating organs can do so. Benefit of an opt out rather than opt in system is that people who don't care one way or the other are more likely to end up donors in an opt out setting (because their family may not know what they want and may end up saying no in an opt in setting just because they don't want to be wrong). Then you would take out the issue where someone really wants to donate and has registered with donate life and everything but some family member decides to go against their wishes and block donation. Anyone who has religious or other objections would easily be able to opt out through a similar method we use for opting in in this country (donate life website and driver licensing)

 

[DesertPT]

What religions forbid people from indicating they don't want to donate organs?

I think he meant some religions forbid organ donation.

 

[FIREitUP]

What religions forbid people from indicating they don't want to donate organs? That is what they do in a opt out sort of setting. Anyone who has an objection to donating organs can do so. Benefit of an opt out rather than opt in system is that people who don't care one way or the other are more likely to end up donors in an opt out setting (because their family may not know what they want and may end up saying no in an opt in setting just because they don't want to be wrong). Then you would take out the issue where someone really wants to donate and has registered with donate life and everything but some family member decides to go against their wishes and block donation. Anyone who has religious or other objections would easily be able to opt out through a similar method we use for opting in in this country (donate life website and driver licensing)

it's conceivable that a person would forget to opt out and end up having their organs harvested even if their religion is opposed to it.

 

[dpmd]

it's conceivable that a person would forget to opt out and end up having their organs harvested even if their religion is opposed to it.

So you are telling me than someone with a deeply held religious belief that is important enough that they feel they will be affected by an action taken after their death would forget to opt out? Seems legit.

 

[FIREitUP]

So you are telling me than someone with a deeply held religious belief that is important enough that they feel they will be affected by an action taken after their death would forget to opt out? Seems legit.

The Jewish religion forbids this, and although the person may not have the strongest convictions, the family might. I think giving one's organs is an especially important decision in which a person should have to actively decide to opt in, but that's just my personal opinion.

 

[dpmd]

The Jewish religion forbids this, and although the person may not have the strongest convictions, the family might. I think giving one's organs is an especially important decision in which a person should have to actively decide to opt in, but that's just my personal opinion.

The only major religions that forbid donation are shinto and jehovah's witness. Christian scientists don't forbid it but getting a transplanted organ wouldn't really be in keeping with it. Other than that there are only some within the other religions that feel it is wrong, while many religious leaders in those faiths have come out in support of donation (with some rabbis going so far as to say donating should be considered fulfilling the duty to help those in need). The family's wishes shouldn't really play a role except as far as the person in question wishes to defer to their wishes (so if they wish to follow what their family would want they can go ahead and opt out). Many people wrongly think their religion forbids donation but when you investigate things you see the error.

 

[Mad Jack]

The Jewish religion forbids this, and although the person may not have the strongest convictions, the family might. I think giving one's organs is an especially important decision in which a person should have to actively decide to opt in, but that's just my personal opinion.

The opinions of family members are completely irrelevant in organ donation situations, unless we've got a person who's brain dead and they've got no declared wishes. If you make organ donation opt-out, the lack of declaration becomes a non-issue.

 

[Ismet]

The Jewish religion forbids this, and although the person may not have the strongest convictions, the family might. I think giving one's organs is an especially important decision in which a person should have to actively decide to opt in, but that's just my personal opinion.

Organ donation is not forbidden in the Jewish religion. I believe there are some customs that may have to be taken into consideration/worked around, like timing of the burial, but it's not forbidden. It is permitted in the sense that it is saving someone else's life.

 

[ImmunoLove]

it's conceivable that a person would forget to opt out and end up having their organs harvested even if their religion is opposed to it.

In our current opt in system, It's also conceivable that a person who wanted to donate would forget and will end up not having organs harvested even though they believed for them it was the right thing to do. Or, perhaps more commonly, in our current opt in system, even a patient who has opted in may not be able to donate their organs because of the wishes of living relatives who object to the donation/harvesting. Point being, in either scenario--opt in or opt out-- some wishes are likely not to be followed. I think in an opt out setting, The wishes of those who feel strongly one way or another will likely be executed more frequently.

 

[ImmunoLove]

The only major religions that forbid donation are shinto and jehovah's witness. Christian scientists don't forbid it but getting a transplanted organ wouldn't really be in keeping with it. Other than that there are only some within the other religions that feel it is wrong, while many religious leaders in those faiths have come out in support of donation (with some rabbis going so far as to say donating should be considered fulfilling the duty to help those in need). The family's wishes shouldn't really play a role except as far as the person in question wishes to defer to their wishes (so if they wish to follow what their family would want they can go ahead and opt out). Many people wrongly think their religion forbids donation but when you investigate things you see the error.

Technically, for Jehovah's Witnesses, only blood transfusions are explicitly forbidden. Logically (implicitly via induction) this ought to extend to solid organ donation. However, religion, As with many things, is often personal, and open to interpretation. What really matters are the beliefs of the individual patient, and not those of the religion to which that patient subscribes (they are not necessarily the same, which is yet another argument in favor of the opt in -error- I meant opt out--system).

Just ask our Jehovah's Witness recipients: kidney? Yes! potentially life-saving blood transfusion? No, that's against the religion.

Not quite certain I understand the rationale in that, but okay. More interestingly is whether or not organs should be allocated to an individual who is not willing to accept blood transfusions (or other necessary treatment) which may be lifesaving (but of course, others cellSaver and 1 million other things). It's interesting to think about where the line ought to be with these things.

 

[dpmd]

Technically, for Jehovah's Witnesses, only blood transfusions are explicitly forbidden. Logically (implicitly via induction) this ought to extend to solid organ donation. However, religion, As with many things, is often personal, and open to interpretation. What really matters are the beliefs of the individual patient, and not those of the religion to which that patient subscribes (they are not necessarily the same, which is yet another argument in favor of the opt in system).

Just ask our Jehovah's Witness recipients: kidney? Yes! potentially life-saving blood transfusion? No, that's against the religion.

Not quite certain I understand the rationale in that, but okay. More interestingly is whether or not organs should be allocated to an individual who is not willing to accept blood transfusions (or other necessary treatment) which may be lifesaving (but of course, others cellSaver and 1 million other things). It's interesting to think about where the line ought to be with these things.

The JW thing is interesting because many transplants absolutely can't be done without blood. However, since we are talking about donation and they have no problem with losing blood I can see that I was incorrect and they would be allowed to donate organs.

The fact that people believe things their religion doesn't actually say is a great reason for an opt out system I would argue. This way people who think their beliefs are based on their religion can seek guidance from their religious leaders (and perhaps realize they are incorrectly interpreting things) prior to opting out if they want, while those whose beliefs aren't religious would still be free to opt out.

 

[Kahreek]

The opinions of family members are completely irrelevant in organ donation situations, unless we've got a person who's brain dead and they've got no declared wishes. If you make organ donation opt-out, the lack of declaration becomes a non-issue.

doesnt work like that, family can refuse organ donation of the deceased, in some situations, even if the deceased was opted in.

 

[dpmd]

doesnt work like that, family can refuse organ donation of the deceased, in some situations, even if the deceased was opted in.

Mad jack knows this, but he was talking about the fact that family wishes should be irrelevant in an opt in or opt out scenario (the only thing you need to know from family in an opt in system is what the PATIENT would have wanted, but too often the family inserts their own wishes into the conversation leaving the procurement agency in a tough situation). It is the same as with withdrawal of care. You have to approach things very carefully so that you get an idea of what the patient's wishes would be, not just what the family wants. In my state there is no set pecking order in terms of who makes medical decisions which is nice (it is supposed to be the person closest to the patient, related or not) leaving me free to ignore the family member who hasn't seen the patient in years and doesn't know the patient's wishes, while listening to the friend they have lived with for the past 10 years and who has had conversations regarding end of life care with the patient before (obviously I don't just ignore the family member, I get everyone together to talk and explain how we have to do what the patient would have wanted-getting ethics involved if the family member won't listen to reason).

 

[ImmunoLove]

The JW thing is interesting because many transplants absolutely can't be done without blood. However, since we are talking about donation and they have no problem with losing blood I can see that I was incorrect and they would be allowed to donate organs.

The fact that people believe things their religion doesn't actually say is a great reason for an opt out system I would argue. This way people who think their beliefs are based on their religion can seek guidance from their religious leaders (and perhaps realize they are incorrectly interpreting things) prior to opting out if they want, while those whose beliefs aren't religious would still be free to opt out.

Er, I meant in favor of opt out system. The fact that patient beliefs deviate from religion is another argument in favor of the opt out system. My bad!

Personally, I'm in favor of the opt out system. I think we are on the same page, but talk about a critical error (in vs out) on my part! Oops.

 

[Mad Jack]

doesnt work like that, family can refuse organ donation of the deceased, in some situations, even if the deceased was opted in.

From DC's OPO service:

Can my family override my decision to donate?

Once you sign up with the Donate Life DC registry, your donor designation grants authorization for organ and tissue recovery. Should you be in the position to donate, your next of kin will be presented with documentation of your registration but will not have the power to override your decision. It is important to tell your next of kin or healthcare power of attorney of your wishes so that they may be prepared to cooperate with the health care team about your medical history.

 

[dpmd]

From DC's OPO service:

Can my family override my decision to donate?

Once you sign up with the Donate Life DC registry, your donor designation grants authorization for organ and tissue recovery. Should you be in the position to donate, your next of kin will be presented with documentation of your registration but will not have the power to override your decision. It is important to tell your next of kin or healthcare power of attorney of your wishes so that they may be prepared to cooperate with the health care team about your medical history.

I applaud them having this stance. Wonder if they have the balls to stick by it when it comes down to it.

 

[ImmunoLove]

I applaud them having this stance. Wonder if they have the balls to stick by it when it comes down to it.

Courage can be disappointingly hard to come by in (some of) medicine. Too "risk averse" for its own sake.

 

[Mad Jack]

I applaud them having this stance. Wonder if they have the balls to stick by it when it comes down to it.

We had to a couple times where I used to work. When it's literally life or death for the organ recipients and the person's got their wishes spelled out plainly, we were standing our ground. Legally, they don't have a leg to stand on, and we had the resources for any lawsuits that might arise.

 

[DermViser]

I applaud them having this stance. Wonder if they have the balls to stick by it when it comes down to it.

The Jahi McMath case, in which a lawyer can actually contest being brain dead by a neurologist from Stanford, tells me that no matter what, ANYTHING can be changed.

 

[deleted480308]

The Jahi McMath case, in which a lawyer can actually contest being brain dead by a neurologist from Stanford, tells me that no matter what, ANYTHING can be changed.

Or lung transplant policy for minors