end-of-life values statement

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bwatts849
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end-of-life values statement

Post by bwatts849 »

Lady Geek, not sure if this is appropriate for Bogleheads forum, but I feel it is an important part of estate planning, with significant financial overtones.

A patient's "Values Statement" helps doctors, nurses, and family when end-of-life issues are at hand. The Values Statement provides guidance for end-of-life decisions.

Here is my Values Statement that I have given to my estate planning attorney, and it will be incorporated into my will.

(Abbreviations: DNI/DNR = no artificial respiration, no CPR, "No Code". PEG = tube placed thru skin directly into stomach for artificial feeding. NG = nasogastric tube for feeding.

Above all, my dearest love is my wife, and I wish the end of my life to cause her the least amount of stress or sadness.

I wish to avoid excessive health care intervention at the end of my life or during my advanced age. Those making decisions about end of life should err on the side of less treatment, less care, less medication, and less surgery.

I strongly wish to avoid being a burden to my wife or family. Spending money on my grandchildren’s education is of more importance than providing for me an expensive “private room” in a care facility.

Decision makers in my health care conform to those listed in the (state law for end-of-life): (selected family members).

If, at any time, decision makers opine that my quality of life is poor for any reason (cancer, vascular disease, frailty), then initiate No Code, stop supportive meds (antibiotics), stop dialysis, and do not give IV fluid or artificial feeding. More specifically, food and fluid should not be given if I cannot feed myself, and no one should bring food to my mouth except for a few days during a temporary illness.

My primary value is maintenance of intellectual function. If and when intellectual function wanes, then there should be concomitant reduction of treatment. The latter includes reducing non-invasive treatments such as blood pressure and cholesterol meds or routine “monitoring” labs.

Several useful sources guide families on mental capacity (https://www.americanbar.org/groups/law_ ... mandments/).

With moderate intellectual compromise, initiate No Code status, and avoid all cardiac, thoracic, or aortic surgery. This especially pertains to emergency surgery. Example: I come to the ER with leaking aortic aneurysm or acute MI, then only medical therapy should be applied, in a non-ICU setting. No Code means DNI/DNR.

If advanced intellectual impairment occurs, then maintain No Code status, never transfer me to the hospital, and do not initiate any treatment except for pain meds and morphine. Give no antibiotics for pneumonia or UTI. I consider “Memory Care” the same as end-of-life care.

Large dominant hemispheric stroke, ruptured abdominal or thoracic aorta, major head trauma, are immediate end-of-life events.

Large non-dominant hemispheric stroke is a tragedy, because I may have some communication ability. Nevertheless, initiate No Code, DNI/DNR, no hospitalization for acute illness, no PEG feeding, no NG feeding, no ICU care.

Frailty is an accepted ICD 10 diagnosis, and if I develop frailty during advanced age, then limit care, even if intellectual function is maintained. Specifically, No Code, DNI/DNR, no ICU and no major surgery.

Withdrawal of futile care is equivalent to not starting futile care, and withdrawal of care is an important part of end-of-life decisions. If I am receiving treatment, including mechanical ventilation, that is deemed futile, then that treatment should be stopped, even if death might occur precipitately.

I have no religious persuasion, and theologians should not be part of my end-of-life experience.

If a family gathering occurs after my death, then (family member) should speak about my personal values.

I wish to be cremated as cheaply as possible. Dispose of my ashes any way family desires, but decision makers should not feel obligated to “bury my ashes at ...” or “bury my ashes at sea”, etc.

Comments?
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Re: end-of-life values statement

Post by Kookaburra »

No CPR?
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Re: end-of-life values statement

Post by Blue456 »

Kookaburra wrote: Mon May 03, 2021 12:30 amNo CPR?
DNR = no cpr.
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Re: end-of-life values statement

Post by galawdawg »

Most, if not all, states have standardized advanced directives for health care which is not only part of estate planning but often recommended early in adulthood and always in connection with medical procedures.

For example, here is the one Georgia uses: https://aging.georgia.gov/document/docu ... e/download

I recommend that the standardized format utilized by one's state of residence be used when possible. Those forms are prepared by attorneys based upon the laws of that state. Using such a document allows health care providers to readily locate and understand the patient's wishes without the need to "interpret" or seek clarity. It also ensures that a well-intentioned statement does not conflict with state law or with other provisions in a self-created document. I'm sure the last thing that most who prepare such a directive want is for a dispute or controversy arise in connection with treatment when they are unable to make and/or express their own decisions in the matter.

But if one prefers to create their own directive or "values statement", then I'd recommend that a trusted and qualified attorney review the document to ensure that it is sufficient and that there are no "unintended consequences."

Thanks OP for posting as many folks do not realize the importance of such directives or neglect to give consideration to what their wishes would be in such a situation.
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Re: end-of-life values statement

Post by Stinky »

galawdawg wrote: Mon May 03, 2021 5:46 am Most, if not all, states have standardized advanced directives for health care which is not only part of estate planning but often recommended early in adulthood and always in connection with medical procedures.

For example, here is the one Georgia uses: https://aging.georgia.gov/document/docu ... e/download

I recommend that the standardized format utilized by one's state of residence be used when possible. Those forms are prepared by attorneys based upon the laws of that state. Using such a document allows health care providers to readily locate and understand the patient's wishes without the need to "interpret" or seek clarity.
I absolutely agree with this comment.

To the extent that OP wants to provide additional instructions for his family about things like burial, I’d suggest a second, shorter document that deals with “non-medical” items directly.
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Re: end-of-life values statement

Post by jebmke »

Didn’t read, not actionable for me wrt you. Most relevant feedback should be from family and whoever is your medical POA recipient as well as your doc. Agree with post about standard formats. Providers will be very familiar with them.
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Re: end-of-life values statement

Post by RickBoglehead »

+1000 on using a state's standardized form. Free-form is not a great idea.

Most forms I've seen allow for adding specifics.

I can tell you that we have experience with two people near end of life, and with both we experienced strong resistance from the medical establishment.

For one, they needed a medical procedure done that MIGHT stop the heart. The resident said "in that case, we'll resuscitate". We said "no, read your paperwork, DNR". It took 15 minutes of argument, with me having to say "do I need to call my attorney?" before she acquiesed.

For another person, hospice took over, and we were assured that a) nothing would be done outside what they outlined and b) their physician was in charge. Came to visit the person (who was at hospital), and found them on IV. Asked why, ordered by primary physician (not hospice physician). Called primary physician, asked what was going on, he said "I ordered it because I thought he would be more comfortable". Gave him a tongue lashing ("why didn't you call us first"), and ordered it immediately disconnected. Contacted hospice management, and they were clueless.

No matter what's in writing, every patient needs a strong advocate.
Last edited by RickBoglehead on Mon May 03, 2021 10:56 am, edited 1 time in total.
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Re: end-of-life values statement

Post by JoeRetire »

These are nice statements of your values and your wishes. I could imagine they will aid others in their considerations.

But they cannot be confused with directives.

If you actually want specific actions (or inactions) to take place, use the formal, lawyer-approved forms proper for your state. If instead you just want an informal writing about your feelings, this is very nice.
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Re: end-of-life values statement

Post by Sgal8713 »

I would find this very beneficial if a patient presented it. I think the state forms are woefully lacking with too much gray area. This is well thought out with clear examples of situations to decrease/halt care. It is however appropriate to complete the state forms to be sure. More information is always better.

I would be careful with "frailty". It can be attached with mild weakness or weight loss and is in the symptoms based "R" codes of ICD-10. I would investigate the malnutrition codes (E43-E44) for a definitive diagnosis code. I would also discuss with your primary doctor what end-of-life medications might be (roles of anxiety meds, secretion meds, nausea meds instead of just pain medications.
Last edited by Sgal8713 on Mon May 03, 2021 12:19 pm, edited 2 times in total.
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Re: end-of-life values statement

Post by camden »

This should not be used as a substitute for whatever the legally vetted end of life directive exists in your state, but I think it is a very valuable supplement to it.

Medical professionals are often confronted by families whose members are in conflict about decisions regarding such issues, and in my experience a minority, or even one outspoken member, of a family who holds a “do everything possible to prolong life” mindset regardless of circumstances often dominate the majority who feel otherwise. Having a written, clear statement of YOUR wishes, prepared well in advance, would go far in preventing this problem.
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Re: end-of-life values statement

Post by bwatts849 »

Thanks to all respondents. Complex issue. My Values Statement was started because I was re-writing my will with my attorney, and I wasn't satisfied with the usual boilerplate documents regarding end-or-life.

Camden is spot on about family conflict in the ICU: The ICU is where decades of family discord come to a head at 2 AM.

I agree with Sgal that current forms are woefully inadequate, hence, my effort at my Values Statement

JoeRetire, agree, values statement is not a directive. However, the formal documents (Living Will, Power of Att'y) often don't include the details of a patient's preferences. Hospitals often include "value statement" in the end-of-life folder.

RickBoglehead, your experiences are too common. It is amazing that, in our current culture, how often we have to fend off the aggressive medical-industrial-legal complex.

Galawdawg, thanks for the link. In Part 2 section 8 of the Georgia document, there is a section for personal preference. That is where I would see my values statement. Good link, very detailed. The site discusses the complex and confusing issues of overlapping documents.

Several respondents emphasized the importance of "legal documents", a valid opinion. However, if anyone feels end-of-life issues have been adequately taken care of with a DPOA and Living Will, I believe they would find those documents "woefully inadequate".

Thank you all!! Many health professionals and attorneys on this site, which is why I posted.
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Re: end-of-life values statement

Post by LadyGeek »

This thread is now in the Personal Finance (Not Investing) forum (estate planning).

The OP is following the guidance of an attorney, which is key to allowing this discussion to continue. Please stay focused on the personal finance aspects and avoid anything which delves into a detailed medical discussion.

Here's the Pennsylvania Orders for Life Sustaining Treatment (POLST) form:DOH POLST Form
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Re: end-of-life values statement

Post by Murgatroyd »

OP, my FIL left a directive similar to yours. He had a bad case of COPD and basically was allergic to everything. He researched every condition he could find that might take him down and penned a very specific DNR. He also left a lifestyle statement that was unequivocal in terms of any short or long term decisions that would affect his quality of life.

We (his daughters and brother) were forced with an either-or treatment decision that required considering his quality of life statement. We shared it with his doctors and had a frank conversation. The doctors were highly interested and all agreed they’d never seen anything like it.

Bottom line, without his lifestyle statement a decision would have been made that he would not have appreciated. He made the hard decision easier on his family.
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Re: end-of-life values statement

Post by earlyout »

I think the best use of a "values statement" such as this is to use it as the basis for a series of discussions with family members and the person selected as your DPOA for healthcare. If partners, siblings, or children have only a cursory knowledge of your value statement there could still be some very unwanted decisions made in the ER at 2:00 am. The mere existence of the document accomplishes very little at a critical time if those advocating for the patient are unfamiliar with the content and implications of a value statement, a DNR, a healthcare directive, a POLST, whatever.
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Re: end-of-life values statement

Post by Katietsu »

I think it is wonderful that you were able to write and prepare such a document. I am surprised that you said it would be incorporated into your will.

Based on my experience with end of life decision making, I would expect this to be a document discussed and provided to your medical POA’s. I would then trust my medical decision makers. Having a roadmap is wonderful but the journey does not always go as envisioned.
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Re: end-of-life values statement

Post by FIREchief »

Katietsu wrote: Mon May 03, 2021 5:17 pm I am surprised that you said it would be incorporated into your will.
Does a will have any meaning prior to death?
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Re: end-of-life values statement

Post by Katietsu »

FIREchief wrote: Mon May 03, 2021 7:54 pm
Katietsu wrote: Mon May 03, 2021 5:17 pm I am surprised that you said it would be incorporated into your will.
Does a will have any meaning prior to death?
I am thinking that it is just part of an estate planning package, not actually part of a will?

Personally, I would not want it part of my official end of life directives unless I did not have faith in my medical POAs.
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Re: end-of-life values statement

Post by Goldwater85 »

FIREchief wrote: Mon May 03, 2021 7:54 pm
Katietsu wrote: Mon May 03, 2021 5:17 pm I am surprised that you said it would be incorporated into your will.
Does a will have any meaning prior to death?
Surely OP meant ‘living will’. Setting directives re when the plug should be pulled is an important part of end-of-life planning and a document any estate lawyer will put in front of a client.

Someone will end up with the durable power of attorney. I guess you could give them additional, nuanced instructions in case they end up making judgments in gray zone.
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Re: end-of-life values statement

Post by bwatts849 »

Respondents bring up a good point. The Values Statement will not in our will. It will be in end-of-life documents held by our estate planning attorney.

One last note: too many times I've seen doctors come out of a patient's ICU room, shaking their head and muttering, "never let them do this to me."

BTW, these end-of-life issues can have last minute importance. Correct me if I am wrong, but distribution of inherited IRAs can be an urgent last minute strategic decision if death occurs very close to the last day of the year.
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Re: end-of-life values statement

Post by marcopolo »

camden wrote: Mon May 03, 2021 10:41 am This should not be used as a substitute for whatever the legally vetted end of life directive exists in your state, but I think it is a very valuable supplement to it.

Medical professionals are often confronted by families whose members are in conflict about decisions regarding such issues, and in my experience a minority, or even one outspoken member, of a family who holds a “do everything possible to prolong life” mindset regardless of circumstances often dominate the majority who feel otherwise. Having a written, clear statement of YOUR wishes, prepared well in advance, would go far in preventing this problem.
I can tell you from experience that a outspoken "do everything possible" person can even over ride a well written advance directive.
For whatever reason, we found that some in the medical profession seem to also want do everything possible, and if they can get a family member to say that, the advance directive can go right out the window.
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Re: end-of-life values statement

Post by desiderium »

bwatts849 wrote: Mon May 03, 2021 12:05 am Lady Geek, not sure if this is appropriate for Bogleheads forum, but I feel it is an important part of estate planning, with significant financial overtones.

A patient's "Values Statement" helps doctors, nurses, and family when end-of-life issues are at hand. The Values Statement provides guidance for end-of-life decisions.

Here is my Values Statement that I have given to my estate planning attorney, and it will be incorporated into my will.

(Abbreviations: DNI/DNR = no artificial respiration, no CPR, "No Code". PEG = tube placed thru skin directly into stomach for artificial feeding. NG = nasogastric tube for feeding.

Above all, my dearest love is my wife, and I wish the end of my life to cause her the least amount of stress or sadness.

I wish to avoid excessive health care intervention at the end of my life or during my advanced age. Those making decisions about end of life should err on the side of less treatment, less care, less medication, and less surgery.

I strongly wish to avoid being a burden to my wife or family. Spending money on my grandchildren’s education is of more importance than providing for me an expensive “private room” in a care facility.

Decision makers in my health care conform to those listed in the (state law for end-of-life): (selected family members).

If, at any time, decision makers opine that my quality of life is poor for any reason (cancer, vascular disease, frailty), then initiate No Code, stop supportive meds (antibiotics), stop dialysis, and do not give IV fluid or artificial feeding. More specifically, food and fluid should not be given if I cannot feed myself, and no one should bring food to my mouth except for a few days during a temporary illness.

My primary value is maintenance of intellectual function. If and when intellectual function wanes, then there should be concomitant reduction of treatment. The latter includes reducing non-invasive treatments such as blood pressure and cholesterol meds or routine “monitoring” labs.

Several useful sources guide families on mental capacity (https://www.americanbar.org/groups/law_ ... mandments/).

With moderate intellectual compromise, initiate No Code status, and avoid all cardiac, thoracic, or aortic surgery. This especially pertains to emergency surgery. Example: I come to the ER with leaking aortic aneurysm or acute MI, then only medical therapy should be applied, in a non-ICU setting. No Code means DNI/DNR.

If advanced intellectual impairment occurs, then maintain No Code status, never transfer me to the hospital, and do not initiate any treatment except for pain meds and morphine. Give no antibiotics for pneumonia or UTI. I consider “Memory Care” the same as end-of-life care.

Large dominant hemispheric stroke, ruptured abdominal or thoracic aorta, major head trauma, are immediate end-of-life events.

Large non-dominant hemispheric stroke is a tragedy, because I may have some communication ability. Nevertheless, initiate No Code, DNI/DNR, no hospitalization for acute illness, no PEG feeding, no NG feeding, no ICU care.

Frailty is an accepted ICD 10 diagnosis, and if I develop frailty during advanced age, then limit care, even if intellectual function is maintained. Specifically, No Code, DNI/DNR, no ICU and no major surgery.

Withdrawal of futile care is equivalent to not starting futile care, and withdrawal of care is an important part of end-of-life decisions. If I am receiving treatment, including mechanical ventilation, that is deemed futile, then that treatment should be stopped, even if death might occur precipitately.

I have no religious persuasion, and theologians should not be part of my end-of-life experience.

If a family gathering occurs after my death, then (family member) should speak about my personal values.

I wish to be cremated as cheaply as possible. Dispose of my ashes any way family desires, but decision makers should not feel obligated to “bury my ashes at ...” or “bury my ashes at sea”, etc.

Comments?
Wonderful. This echoes my personal sentiment and a document I wrote. Filing it with your will is fine, but more importantly, share it with your close family members and doctors now. Take the time to explain it to them, and let them understand that your preferences, while perfectly acceptable, do not always represent the path of least resistance in the situations you describe.
bwatts849 wrote: Mon May 03, 2021 1:57 pm Several respondents emphasized the importance of "legal documents", a valid opinion. However, if anyone feels end-of-life issues have been adequately taken care of with a DPOA and Living Will, I believe they would find those documents "woefully inadequate".
In my medical specialty I have been involved in shepherding people through countless end of life decisions over the past 35 years. Other than settling the DPOA for health care decisions (very important on a practical level), I can think of only a one or two examples where the legal aspect of advanced directives was ever enforced or attorneys were ever involved. These documents rarely provide any practical direction and are uncommonly even consulted. I am not discounting the need for the attorney language, only that your "values statement" is truly what everyone (using their own values) should consider doing. I can't emphasize enough how much easier it is for family members to make difficult decisions when they have had the benefit of this type of clear and intimate communication. Thank you for sharing this post.
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Re: end-of-life values statement

Post by bwatts849 »

Thank you, Desiderium, great response.

I should have added, "If death is imminent on Dec. 31, try to delay until early hours of Jan. 1, so inherited IRA/Roth RMDs can be delayed a year." Hard boiled? Of course! My final farewell to the Tax Man!
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Re: end-of-life values statement

Post by Lee_WSP »

I think this is an excellent supplement to the standard DNR form and should absolutely be kept in the same folder. Perhaps with instructions to your MPOA that the letter is meant to supplement or give specific examples.

I am unsure of the value or implications of referencing it if the state form or MPOA does not include a section for a free hand explanatory statement. So, I'm not going to comment on that.
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Re: end-of-life values statement

Post by VictoriaF »

I have just started looking into end-of-life documents and have some questions:
1. I live in Northern Virginia but my primary care physician is in D.C. If I fill out a VA Advance Directive (AD) form would it be honored in DC? Should I fill out forms for both VA and DC, or it would create confusion?
2. While my general preference is to get minimum care, I don't understand some terminology. Is there a good book or other sources that describe in detail what different measures mean, what are their consequences, and why one may want or not want to accept them.
3. Upthread, Sgal8713 mentioned "mild weakness or weight loss and is in the symptoms based "R" codes of ICD-10" and "malnutrition codes (E43-E44)". Do I need to be familiar with these codes to make meaningful choices in my AD?

Thank you in advance,
Victoria
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Re: end-of-life values statement

Post by rick51 »

I began my post with a personal account of a parent’s death, but I deleted that. Let me just make a plea to all those that may have adult children that are in the dark as to their parent’s end-of-life wishes. Try and let them know with as much detail as you can. A medical directive may not provide enough.
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Re: end-of-life values statement

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VictoriaF wrote: Thu May 06, 2021 1:39 pm 2. While my general preference is to get minimum care, I don't understand some terminology. Is there a good book or other sources that describe in detail what different measures mean, what are their consequences, and why one may want or not want to accept them.
3. Upthread, Sgal8713 mentioned "mild weakness or weight loss and is in the symptoms based "R" codes of ICD-10" and "malnutrition codes (E43-E44)". Do I need to be familiar with these codes to make meaningful choices in my AD?

Thank you in advance,
Victoria
2. A book won't help, as real-world experience with my late husband's directives have shown that medical personnel (doctors, nurses, etc.) who are treating the patient will have very different interpretations than you. The best approach is to sit down with someone experienced with end-of-life situations and ask for help to fill out the forms.

3. There are a LOT of diagnosis codes, you can google them. Ignore those codes, they won't be used for anything in the context of an advanced health care directive. For billing the insurance company, yes. For use in treating patients, no.
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Re: end-of-life values statement

Post by humblecoder »

Honestly, I think what the OP posted was great. It clearly spells out his/her wishes and values without any of the legal mumbo-jumbo. A family member can easily understand and execute on this. Hopefully this also includes a conversation with one's family above and beyond just penning this statement, in order to clarify any questions or concerns.

Related to this, when we were setting up a Supplemental Needs Trust for my daughter, our lawyer suggested writing a similar statement about my daughter, her likes and dislikes, what activities she enjoys and which ones she doesn't, etc. She said that when my wife and I pass and a successor trustee takes over who might not know her as closely as we do as parents, this will give them some guidance on how to use the money to best enhance her quality of life.
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Re: end-of-life values statement

Post by VictoriaF »

LadyGeek wrote: Thu May 06, 2021 2:50 pm 2. A book won't help, as real-world experience with my late husband's directives have shown that medical personnel (doctors, nurses, etc.) who are treating the patient will have very different interpretations than you. The best approach is to sit down with someone experienced with end-of-life situations and ask for help to fill out the forms.
Thank you, LadyGeek,

I wish I could discuss this with you in person. In the mean time, I'll fill out a standard VA's AD.

Victoria
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Re: end-of-life values statement

Post by desiderium »

VictoriaF wrote: Thu May 06, 2021 1:39 pm I have just started looking into end-of-life documents and have some questions:
1. I live in Northern Virginia but my primary care physician is in D.C. If I fill out a VA Advance Directive (AD) form would it be honored in DC? Should I fill out forms for both VA and DC, or it would create confusion?
2. While my general preference is to get minimum care, I don't understand some terminology. Is there a good book or other sources that describe in detail what different measures mean, what are their consequences, and why one may want or not want to accept them.
3. Upthread, Sgal8713 mentioned "mild weakness or weight loss and is in the symptoms based "R" codes of ICD-10" and "malnutrition codes (E43-E44)". Do I need to be familiar with these codes to make meaningful choices in my AD?

Thank you in advance,
Victoria
Five Wishes is a plain language approach that is very useful for communication with friends, family and your doctors: https://fivewishes.org.
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Re: end-of-life values statement

Post by celia »

I suspect some of what you wrote is contrary to law in your state. Medical professionals will need to follow the law and take different things into account. They probably won't withhold food or medicine just because your "qualify of life" is poor (whatever that means). And I doubt the cost of your care (compared to education???) will factor into any decisions, since even if you don't have any money, you would still be entitled to some care.

Your will also is not the place where this belongs, since that doesn't take affect until after death. What you wrote should be part of your Medical Power of Attorney or Advanced Directive. You also don't want a list of people who can make decisions, unless you put them in descending order with the decision resting with a specific person (say, after consultation with at least two doctors). If you leave it to two people to jointly agree, you could be lying there for a while until they finish arguing over what your wishes meant.

I also am one to recommend you start with a standard form and modify it as needed. There are likely other important facets that you aren't considering while talking about some things that won't be possible to do. At least read the Five Wishes to see what issues should be address. What is nice about the Five Wishes is that it is like a form with check boxes, parts you can cross out, and blank lines for you to write new comments, while it addresses several areas of care you haven't mentioned. Our doctors' offices had them in the office for anyone to use, so we know our doctors are already on board with them. You could also ask your doctor what form they usually recommend.
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Re: end-of-life values statement

Post by ncbill »

Sgal8713 wrote: Mon May 03, 2021 7:37 am I would find this very beneficial if a patient presented it. I think the state forms are woefully lacking with too much gray area. This is well thought out with clear examples of situations to decrease/halt care. It is however appropriate to complete the state forms to be sure. More information is always better.

I would be careful with "frailty". It can be attached with mild weakness or weight loss and is in the symptoms based "R" codes of ICD-10. I would investigate the malnutrition codes (E43-E44) for a definitive diagnosis code. I would also discuss with your primary doctor what end-of-life medications might be (roles of anxiety meds, secretion meds, nausea meds instead of just pain medications.
The reason you use the state model health care POA form here in the U.S. is that your wishes might be moot without it.

IIRC, there's at least one U.S. state out there that requires one health care form for "regular" medical decisions but also another if you want to refuse "life-sustaining" treatments, e.g. ventilator, feeding tube, antibiotics.

Personally, I watched a parent lie in bed for the better part of a decade as a result of the progression of their dementia.

They were relatively young (50s) with a non-Alzheimer's form of dementia that strikes as early as one's 40s.

What kept them alive was regular administration of oral antibiotics since they suffered recurring infections once bed-bound.

Given the enormous expense of the above (paid out of pocket) in order to at least try to avoid being a financial burden on my family my health care POA refuses anything but palliative care in the event I am diagnosed with any terminal illness, including dementia.

And the health care agent I appoint is the only one who has the legal authority to make decisions on my behalf, not any medical personnel.
Last edited by ncbill on Fri Jun 04, 2021 1:25 pm, edited 3 times in total.
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Re: end-of-life values statement

Post by bwatts849 »

OP here, jumping back in.

Celia, tx for your response. I've worked close to this area for a number of decades, and it is amazing how rarely "legal issues" enter in to the picture. Part of the reason for this in my progressive Northwest state is the presence of Hospice services and Palliative Care.

In my own case, my Values Statement guides my family. If they feel the end of my life is "near", and that quality is poor, and that "Dad wouldn't want this", then Hospice service will likely be called in. With Hospice and Palliative Care, I believe everything I outlined in my Values Statement" would legally be OK. (I'm not a lawyer, however!).

To Celia and all respondents, I goofed when I said this was "part of my will". It is part of my end-of-life documents, which includes my Living Will. Also, tx for the Five Wishes link. I wasn't familiar with this.

The reason I posted my Values Statement on Bogleheads Forum is because these issues have huge economic overtones. As some of the respondents have tragically noted, being kept alive in a decrepit state can plow through enormous amounts of $$$. Money is important to me when it comes to my wife and family, and I don't want to spend it on futile health care.

I've also instructed my family to be in active contact with our accountant regarding IRA inheritance issues. I believe timing around the very end of the year is important.

Also, as many respondents have said, the Value Statement augments the No Code or POLST (Physician's Orders for Life Sustaining Treatment) form. The Values Statement in itself is not a No Code form.
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Re: end-of-life values statement

Post by 1210sda »

OP, well done!!

I will use this thread as motivation to get started on my own statement.

Granted that these statements are personal, as such I will adapt to my needs using yours as my "format".

Thanks again for being the catalyst!!
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Re: end-of-life values statement

Post by bengal22 »

I was a little surprised by how end of life decisions were made for both of my parents. I live in Ohio. I had conversations with my Mom so I knew that she did not want any extraordinary efforts to prolong life. Both parents had a generic living will but it was pretty worthless and the hospital did not use it. Dad went first. It was pretty much Mom telling them how to code Dad and they merely put in the computer. When mom passed it was handled the same way except I told them with their consultation how to code mom.

So they both needed zero statements or documents to handle. But caregivers should know what the care receivers wishes are.
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Re: end-of-life values statement

Post by desiderium »

bengal22 wrote: Fri May 07, 2021 2:33 pm I was a little surprised by how end of life decisions were made for both of my parents. I live in Ohio. I had conversations with my Mom so I knew that she did not want any extraordinary efforts to prolong life. Both parents had a generic living will but it was pretty worthless and the hospital did not use it. Dad went first. It was pretty much Mom telling them how to code Dad and they merely put in the computer. When mom passed it was handled the same way except I told them with their consultation how to code mom.

So they both needed zero statements or documents to handle. But caregivers should know what the care receivers wishes are.
Thats how it goes almost all the time. After appropriate discussion, If the patient is compos mentis, they state their preference not to be resuscitated and it is entered as an order in the record. If they are not able to make the decision, the spouse or other family representative acts in the same capacity. Health care power of attorney is something that is only discussed infrequently. Documents are even less commonly consulted, unless disagreements are voiced. In my experience families suffer much less making these decisions when these discussions have taken place.
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Re: end-of-life values statement

Post by VictoriaF »

celia wrote: Fri May 07, 2021 6:30 am Medical professionals will need to follow the law and take different things into account. They probably won't withhold food or medicine just because your "qualify of life" is poor (whatever that means).
Hi Celia,

I have just started looking into these issues and I was under impression that a person can't receive food or medicine against his will. Please correct me if I am wrong.

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Re: end-of-life values statement

Post by LadyGeek »

Please avoid legal issues that are not related to finances / estate planning. Remember that you can always send a private message to discuss.
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Re: end-of-life values statement

Post by celia »

VictoriaF wrote: Sat May 08, 2021 9:00 am
celia wrote: Fri May 07, 2021 6:30 am Medical professionals will need to follow the law and take different things into account. They probably won't withhold food or medicine just because your "qualify of life" is poor (whatever that means).
Hi Celia,

I have just started looking into these issues and I was under impression that a person can't receive food or medicine against his will. Please correct me if I am wrong.

Victoria
Hi Victoria, I think this is state-specific. Look up your state laws online.

But as long as the patient can speak for themselves, that would override anything they put in a Medical Directive. And if they object to anything being done to/for them, there would be no need to even be in the hospital. The hospital would discharge them.


As far as the original post, I think most of it was in a "gray zone". I know it's hard to be specific when you don't know what future circumstances will be. Here are two examples that stood out to me as being "gray":
bwatts849 wrote: Mon May 03, 2021 12:05 am Above all, my dearest love is my wife, and I wish the end of my life to cause her the least amount of stress or sadness.
This statement could easily contradict everything else the OP wrote. What if OP writes down to not give him food but his wife thinks otherwise?
More specifically, food and fluid should not be given if I cannot feed myself, and no one should bring food to my mouth except for a few days during a temporary illness.
What if OP had surgery on both wrists and they are immobilized for a month?

Again, I know it is difficult to make a decision about a future unknown set of circumstances. I think you basically need to choose a decision maker who knows you well and is not afraid to make a decision that might be different from what they would want for themself. I know about a local lawyer who has a couple, for whom he just created Medical Directives or Medical Power of Attorney, turn to each other holding hands, look them in the eyes, and tell the other spouse that even though their wishes are different from each other, they want the spouse to honor their wishes, thus giving them "permission" to do something different than what they would choose for themself.
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Re: end-of-life values statement

Post by BarbBrooklyn »

rick51 wrote: Thu May 06, 2021 2:21 pm I began my post with a personal account of a parent’s death, but I deleted that. Let me just make a plea to all those that may have adult children that are in the dark as to their parent’s end-of-life wishes. Try and let them know with as much detail as you can. A medical directive may not provide enough.
My mother talked to endlessly about how she didn't want to live like many other elderly relatives, with dementia and the increasing indignity of incontinence and lack of intellectual and physical abilities.

But she didn't appoint me sole decision maker and she was never declared incompetent. So she was asked at 93 with dementia if she wanted a pacemaker and she said yes.

On the medication thing, please don't indicate "least amount " when it comes to psych drugs.
Last edited by BarbBrooklyn on Mon May 10, 2021 1:45 pm, edited 1 time in total.
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Re: end-of-life values statement

Post by earlyout »

After all is written and included in end-of-life documents what happens while you are dying still comes down to treatments that you select or deny. If you are incapable of making decisions then you need to have identified a single individual designated to make such decisions. I haven't seen it mentioned here, but The Conversation Project, https://conversationproject.org, provides a very nice guide for discussing end of life decisions with your family and/or healthcare agent. There is also a version of the Conversation Project specifically for the care you want to receive should you suffer from dementia.
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Re: end-of-life values statement

Post by JoeRetire »

bwatts849 wrote: Mon May 03, 2021 1:57 pm JoeRetire, agree, values statement is not a directive. However, the formal documents (Living Will, Power of Att'y) often don't include the details of a patient's preferences. Hospitals often include "value statement" in the end-of-life folder.
"I like red" is a value statement.
"I want to be buried in a red casket" is more directive, and has a better chance of being fulfilled.

You might wish to tighten up the language in your statement, perhaps aided by a legal professional.
Value statements like the following can be interpreted in many different ways:
- the least amount of stress or sadness
- excessive health care intervention
- avoid being a burden
- quality of life is poor for any reason

If you just want to express feelings, these are all fine. If you want to direct the actions of others once you are gone, they may not be actionable, and may not come out the way you prefer.

It's hard to control others when you aren't around. The reality is that the living will actually make the decisions. The good thing is that you won't know if your desires aren't followed.
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Re: end-of-life values statement

Post by bwatts849 »

OP back in again. Thanks for the responses by all.

I think it is accurate to say the conclusion is heavily nuanced for each individual. The Value Statement in my case is just a guide for my family. Since a Values Statement could not cover every exigency, it could be contradicted in some situations --- as some respondents have noted.

BTW, if it comes to fore that I can be "kept alive" for a day or so through the New Year with minimal fuss, by all means go for it, so as to benefit from another year of tax free growth for my IRA. My family knows I am a miser, and they understand this wish.
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Re: end-of-life values statement

Post by neverpanic »

I've got extremely limited, but recent experience with this and it turned out to be a joke. I had to laugh as I shook my head. Nothing went as planned in part because the actual end of life was in a different state from the deceased's residence.

That won't be the case for most people, but ultimately, one of the major things you want to ensure or hope for is that if you are in a care facility and not passing peacefully in your home, the person or persons closest to you will be fierce, dogged advocates for what you want. Best wishes.
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Re: end-of-life values statement

Post by VictoriaF »

celia wrote: Sat May 08, 2021 1:56 pm Again, I know it is difficult to make a decision about a future unknown set of circumstances. I think you basically need to choose a decision maker who knows you well and is not afraid to make a decision that might be different from what they would want for themself. I know about a local lawyer who has a couple, for whom he just created Medical Directives or Medical Power of Attorney, turn to each other holding hands, look them in the eyes, and tell the other spouse that even though their wishes are different from each other, they want the spouse to honor their wishes, thus giving them "permission" to do something different than what they would choose for themself.
Thank you, Celia, you are making good points.

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Re: end-of-life values statement

Post by Carefreeap »

neverpanic wrote: Mon May 10, 2021 1:37 pm That won't be the case for most people, but ultimately, one of the major things you want to ensure or hope for is that if you are in a care facility and not passing peacefully in your home, the person or persons closest to you will be fierce, dogged advocates for what you want. Best wishes.
That was certainly the case for my father. Although he had taken the time and effort to do the "estate" documents when he got dragged into skilled nursing for the third time after breaking more bones he was delerious and in no shape to make any kinds of decisions. He was also effectively blind and deaf. He answered "yes" to every question on the intake form which meant he agreed to EVERY form of intervention including feeding tubes et cetera. When he transitioned into Medicaid paid custodial care he was also diagnosed with dementia. As he declined in the next few months and his oxigen levels dropped sharply I was able to convince the staff that he would not have agreed to extra ordinary care had he been in his right mind. Fortunately the staff was cooperative and accepted his DNR and Advance Care Directive documents which had been prepared some 15 years earlier.

I anticipated some resistance from my brother, however my father had "disowned" him when he wrote up the estate documents. I had facilitated a reapproachment between the two of them and I really hoped that wasn't going to be a problem. Over the next few months my brother's attitude went from having Dad live as long as he can to understanding the quality of life issue. I'll always be grateful for that.
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Re: end-of-life values statement

Post by FoolStreet »

marcopolo wrote: Mon May 03, 2021 10:09 pm
camden wrote: Mon May 03, 2021 10:41 am This should not be used as a substitute for whatever the legally vetted end of life directive exists in your state, but I think it is a very valuable supplement to it.

Medical professionals are often confronted by families whose members are in conflict about decisions regarding such issues, and in my experience a minority, or even one outspoken member, of a family who holds a “do everything possible to prolong life” mindset regardless of circumstances often dominate the majority who feel otherwise. Having a written, clear statement of YOUR wishes, prepared well in advance, would go far in preventing this problem.
I can tell you from experience that a outspoken "do everything possible" person can even over ride a well written advance directive.
For whatever reason, we found that some in the medical profession seem to also want do everything possible, and if they can get a family member to say that, the advance directive can go right out the window.
Even an, “anything is possible” statement can throw the family into inaction despite written end of life instructions.
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