Make a living will and think through a DNR, so that you are not kept alive against your wishes for a care facility's income stream (or even in the case of well meaning caregivers) against your quality of life interests.
I'm serious, by they way. Almost everyone on this forum (over the age of 18 in the US) should consider getting a relatively inexpensive living will drawn up with advanced medical directives.
Really good advice to get a Will + DNR. This can be performed by a law firm that specializes in "elder law".
Another reason for visiting with an elder law firm is that there are serious financial implications when someone ends up in a skilled nursing facility for the rest of their life. Private pay is, not joking, more than $10K per month. If you want to use medical assistance (medicaid) you will have to "spend down" your savings until you qualify.
Elders who want to give their assets/money to their children need to do so 5 years before they enter a facility. If they transfer assets and enter a nursing facility in less than 5 years, the children who received those assets will need to cover the cost until the "spend down" is done. This look-back period used to be 2 years, but because of the "Deficit Reduction Act of 2005" signed by George "Dubya" Bush, it is now 5 years. This is the kind of trap that wipes out the finances of entire middle class families-- how's that for reducing the deficit with cruelty? To avoid this trap, the family needs to handle transfer of assets like property and savings very carefully under the advice of lawyers who specialize in this field.
Thank you so much for giving the fuller explanation. I figured anyone that would look into it would be advised of those considerations. You might even run into issues staying in a preferred facility for your entire life based on your ability to pay privately vs medicaid/medicare.
You could literally be not lucid, be repeatedly resuscitated (when you might otherwise might want to die a natural death), and have that all happening while burning through your entire life savings or financially harming your loved ones if you did not specify this beforehand.
If you don't word it right, it seems to me you could also be facing a short-term reversible condition - someone elses mistake even - and they would be legally bound to let you go. Which would be equally devastating to my family:
>"...Upon transfer to the ward, the patient was inadvertently given hydromorphone instead of morphine. Shortly thereafter she was found not breathing. Resuscitation was not performed because of a do-not-resuscitate order on her medical record." [1]
... A narcan dose would reverse the above in about 20 seconds, but instead the patient died.
... this is why I asked GP about how these things are drawn up - I have to imagine it is scenario based?
"A 90-year-old woman lived independently, despite a history of stroke, congestive heart failure, emphysema, osteoporosis and hypothyroidism. After a fall in her residence during the winter, she presented to the emergency department of her local hospital where she was given long-acting morphine orally to control pain in her chest wall. With a diagnosis of pneumonia and renal failure, the patient was transferred to a ward, where the morphine was discontinued and hydromorphone was ordered in its place. Unfortunately, the patient received both analgesics. Two days after admission to the ward, she was found unrousable. Narcotic overdose was considered. After a single bolus dose of naloxone intravenously, the patient became alert; however, left alone for a few minutes, she was then found without vital signs. No further attempt at resuscitation was attempted because a do-not-resuscitate order had been previously entered in her chart at her request."
It isn't a simple case of an otherwise healthy person not given narcan because of a DNR. They were very ill, injured, and coded after an inital nalaxone treatment. Honestly, if it were me, I might want to shake the hand of the person that gave accidental overdose. Regardless, that is great link and both cases are very ethically complicated.
You should look into it more yourself, but for example, one might want to withdraw life sustaining treatment (food/water) if they are in a persistent vegetative state for a certain period of time. Based on other circumstances they might want a hard DNR. It is important and people should educate themselves about end of live decisions and options.
edit: I just realized you were referring to case #2. That is also complicated ethically.
1) are you advocating getting a flat out DNR order in your advanced directives / living will (do not ressus, period)? or just having advanced medical directives which say when you should be a DNR case?
If the former then I think that is a more nuanced discussion than just "good advice", considering you might be facing a reversible drug overdose for instance [2].
2) Do these the law firms typically walk through all the hypothetical scenarios to say under which one you should be DNR? The reversible overdose etc. case is one which I would be interested in vs. long-term vegetative state, etc. - I would understandably want to clarify there.
1) DNR "rules" are covered (in my family's case) in a document called "Health Care Directives". It has a number of options and the options are selected by initialing. YMMV depending, I think, on state laws.
2) The firm I used had a meeting where the family members sat down and discussed everything with a lawyer. We were able to ask detailed questions and get answers. It was helpful and very worth the expense, because we used that knowledge later on to transfer property "the right way" so that it would stay in the family rather than being used entirely for medical-assistance spend-down.
Living will is fine and good and everyone should have one. The problem is that dementia, by itself, is not a direct cause of death. You can live for years with severe dementia but be otherwise completely healthy. Two members of my family lived out their last years like that.
My wife and I are moving to a state that allows assisted suicide after our kids are out of the house. Neither of us want to live like that or be remembered like that.
Here in europe, for what I know, there is a serious problem for getting assisted suicide (in the states that legalized it) for something like dementia because when you have still few effects related to it they can't accept to eutanize you because you are not in a quality of life threating condition, and once the sympthomes are more brutal you cannot get eutanized either because you are no more legally considered capable of making conscious decisions and you must be capable of it _at the moment_ of the procedure, it's not valid to give the authorization before.
In context: “when you have still few effects related to it they can't accept to eutanize you because you are not in a quality of life threating condition”
All people over 75 (and, probably, way earlier) are slowly losing their mind. Early stage dementia isn’t that different from ‘just’ aging in that.
The ethical dilemma with living wills is that they always state a past opinion. It also is well-known from various studies that opinions on when you deem your life worth it shift tremendously over time.
With dementia, locked-in syndrome, etc, that’s a catch-22, as there’s no way to ask you about your opinion, or even to know whether there is someone to have an opinion anymore.
So, that you say “If I get wheelchair-bound/bedridden/don’t know my name anymore, I don’t want to live anymore” now doesn’t imply at all that you will think the same if it were to happen to you.
⇒ If you have a living will, be sure to regularly acknowledge or update it.
Also if you do manage to commit suicide no one pays out on life insurance or pension.
Best option I think is to start with nothing and end with nothing. The above problem is void then. That fortunate bit in the middle needs to be distributed to your children then if they need it.
Nah I’m good. Just watched a couple of people suffer unnecessarily for the sake of a life insurance contract. Figured it was worth checking out before I threw the cash into one.
>>>My wife and I are moving to a state that allows assisted suicide after our kids are out of the house. Neither of us want to live like that or be remembered like that.
Same - but even in places where assisted suicide is legal, it's often not available for cases of dementia. In my jurisdiction you must be terminally ill and of sound mind at the time you request medically assisted death; you can't set something up in advance, can't give power of attorney to another, can't qualify based on dementia alone, and if you happen to have, say, dementia and cancer, probably can't request it because of your dementia specifically.
It's a tough problem to be sure, and I hope it gets well sorted out before I hit old age.
I also want something like a Turing test to determine if I should be kept alive.
The best criteria I've come up with so far is: able to use toilet, able to maintain hygiene, aware of self (name, age), aware of world (rough calendar knowledge, recognize friends and family).
--
We had two family members warehoused in a long term facility who were not allowed to die. As in stopped eating, so were given feeding tubes. Extraordinary efforts to keep them alive. Their DNRs were ineffective. They became vegetables with bank accounts.
Their executor (my mother) got nutty about the whole thing. Her own dementia made her totally irrational, whereas had been very humane just a decade earlier.
And the facility and various care providers were only too happy to keep them alive. (One of the other inmates had been there 11 years. Not a single outside contact. Complete vegetable. How is that right?)
(Were the two victims still lucid, they'd be livid about pointless life extension at great suffering and expense.)
I told my kids to not ever, ever let me end up like that. I've had an amazing run. The end will suck, sure, but no sense getting fussy about it.
Let me pass with some dignity, while I can still say goodbye to everyone properly. Don't waste my money. Don't let me suffer.
You may be confusing living will with a last will and testament.
It may be helpful to think of a living will as "health care directives". So that now, while you don't have dementia, you can spell out your wishes and who has the authority to act on said wishes, when you can no longer make decisions.
Which state? Oregon has an assisted suicide law but it doesn't cover dementia. I'd love to hear about which ones do as I also formed this plan after seeing my father go through it.
A lot of folks don't appreciate the black & white nature of a DNR. At my mother's group home, the head nurse told me a story of a man who started choking on his breakfast. They were unable to clear his airway, called 911, and EMTs were able to get him breathing again. She got into trouble for violating his DNR. My neighbor shared with me his doctor's comment that their mother's DNR would preclude antibiotics to treat pneumonia.
I went over my own mother's DNR papers several times, but there was never any chance at nuance with this legal document. I held off signing her DNR until it made sense — the point where a hospital admission could not possibly result in an eventual release. Many life-threatening complications require better judgement than a single page of blindly copy-pasted instructions.
Depending on the prognosis, what you describe is a feature, not a bug. Pneumonia and aspiration of food (often these are causally linked) is one of the more likely causes of death in advanced dementia. If well-meaning staff are running interference here (hello, feeding tube!) you can wind up living considerably longer in a state where you no longer recognize anyone, are bedfast, incontinent and have no real ability to communicate.
I looked into getting a tattoo as a DNR (in case I couldn't communicate), and there's a lot of problems with the idea. Firstly, emergency room staff aren't looking for tattoos - they're trying to ensure breathing, stopping bloodloss, and so on. And if they do happen to look for a tattoo, there's no standard location or design of them, so if they see one, they may just assume it's artistic and not a legally-enforceable DNR (or even a hint to look for DNR paperwork).
There was a reddit thread talking about that, and someone pointed out that there's no way a medical professional would be willing to treat a random tattoo on someone's body as a valid indication of their current consent. What if you got the tattoo and then changed your mind, but never got the tattoo removed?
Here's an interesting medical case where an unconscious man was admitted to the ER with a tattoo reading "Do Not Resuscitate" and the hospital staff was faced with the decision of whether to honor it.
Literally just hung up the phone (within the last five minutes) on a call with my parents who wanted to tell me they were changing doctors (I am now responsible for their affairs). Their current (until tomorrow) doctor told them that as they each have a DNR in place he didn’t see why he should bother treating them.
Well I wasn't there but given that my mum is an M.D and both she and the doctor are Indian I consider it likely accurate. Especially as they went to the effort of finding a replacement.
Living wills and advanced medical detectives are good, but DNRs for healthy persons are extraordinarily rare. And for good reason: healthy people are much more likely to recover from needing resuscitation with reasonable or normal quality of life.
I mean, sure, think it through, I guess. But it's a weird thing to encourage.
I disagree. There certainly circumstances in which a normally healthy person can be left in a permanent vegetative state (see Terry Schiavo[0].)
Regardless of the rarity of such occurrences, it’s always good to have clear communication around how you want to be treated in such a terrible situation. If there’s a clear medical opinion that my quality of life could not be restored to a fully functionally independent state, I’d rather just go.
You disagree about what? That getting a DNR would be a mistake for the vast majority of healthy people?
The existence of rare bad outcomes is not a good reason to decline a big class of medical treatments. You would not recommend against vaccination because every once in a while a vaccine kills someone.
You do not need a DNR to have clear communication! That's why I specifically mentioned having advanced medical directives. A DNR is standing blanket order to not perform CPR or other live-saving resuscitation in case your heart stops or you stop breathing for any reason.
You're confusing living wills in general with a DNR order. Every sane adult should have a living will which clearly lays out what they want in case they can't communicate it at the time. A living will need not include a DNR order: in fact you can request the opposite.
An advanced directive is a legal document indicating a person's preferences and transferring legal authority. A DNR is an order to medical personnel for emergency situations. Only the DNR is effectively binding on medical personnel in such situations because they can't be expected to know of all legal documents.
Advanced directives can include DNRs, and will often do so for patients who have a bad prognosis. But healthy people do not normally include DNRs in their advanced directive!
Oh, I see. I assumed that an advanced directive is a more comprehensive DNR, since even if you’re healthy, you can still suddenly become unable to communicate, at which point you can’t make a DNR, so it doesn’t make any sense to wait until you’re unhealthy to make a DNR.
You can have instructions in your advanced directive about the conditions under which you want DNRs created on your behalf. (Even in the absence of advanced directives, a family members of a patient who cannot make decisions for themselves is often awarded medical power of attorney, in which case that family member can order a DNR for the patient. Needless to say, this is not ideal because the family member is often unsure exactly what the patient would want if they were of sound mind, and tend to err on the side of providing intensive care even with a bleak prognosis.)
I was actually speaking to an older cohort there. I can see how it was wording badly.
I think young people should consider a living will with advanced medical directives for things like pvs, and older/terminally ill people should consider the impact of DNRs, but not lightly.
It's still some great advice - and if you're speaking with a counsel specialized in elder care they'll probably walk you through options around dementia as well.
You can specify that you want every extraordinary measure that is medically possible in your advanced directives. If you don't specify it, your wishes may not be followed either way.
I'm serious, by they way. Almost everyone on this forum (over the age of 18 in the US) should consider getting a relatively inexpensive living will drawn up with advanced medical directives.