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?
Kookaburra
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Re: end-of-life values statement

Post by Kookaburra »

No CPR?
Blue456
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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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galawdawg
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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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RickBoglehead
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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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JoeRetire
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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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Sgal8713
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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.
camden
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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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bwatts849
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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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Murgatroyd
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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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Katietsu
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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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bwatts849
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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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bwatts849
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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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