Mom's wishes and doctor's plan are very different. What is my role?

Once your mother is no longer able to make her own decisions as POA if your POA includes medical as well as financial. There us no question that making medical decisions for a loved one is difficult, but if she has her medical issues in writing let that be your guide. After all, it's not what your wishes are it's about her wishes.

Correct. As your mom's POA, you are morally, ethically and legally bound to honor her wishes.

Regardless what you and your mom decides, it is you who has to live with the decisions you make. Nobody can advise you in such a delicate matter.

If that's what you & your mom wants, put your mom on hospice and make funeral arrangements. Hospice has their own doctors and nurse practitioners so you won't need her primary doctor anymore, or have to deal with treatment other than comfort only.

Have only had a few minutes to skim through this while on the way to visit MIL in memory care. I apologize for the lengths of reply but hope it helps to understand why this question caught my attention. We are currently experiencing our 4th time down this road and have learned more each time. By sharing what we know now, hope it helps.

In 2007, my dad was diagnosed with what ended up being a terminal recurrence of his cancer and wanted to participate in the experimental option offered (even if he knew he would be in the placebo group) as he wanted to feel his life might help others. He and my mom made decisions with Hospice that wouldn't have been my choice but that I clearly understood were theirs and we respected these and helped as we were able.

Fast forward a few years to when one of kids was in med school and shared a reading assignment with us that was life changing. The book is "Being Mortal" by Dr. Atul Gawande (sp?). After reading this, and knowing that my mother was starting to show declining health, we were able to walk her through looking at her end-of-life planning with her attorney and make needed changes which were a Godsend when she had a life threatening illness and was later diagnosed with Alzheimer's. .... At this point, I want to strongly recommend you share information about this book with your loved one's doctors. After the care journey for my mom, her docs came back to me and asked what the books were that I had had kept recommending to them because they realized that the core training they received in medical school missed some critical knowledge (the other book is the 36 Hour Day - wouldn't have made it with any shred of mental health without these two books).

During my mom's last 2.5 years, my father-in-law was diagnosed with cancer and mother-in-law with frontal temporal lobe dementia. For the last year of my mom's life, both moms were in the same memory care facility which helped immensely.

When FIL's cancer recurred for the 3rd time he was still able to read, plan, and process choices about his care but wasn't being given information on any options except more surgery and debilitating treatment. We gave him a copy of this book and asked him to raise any questions he might have about his options with his caregivers. After reading it, he met with his legal and financial advisors to clean up gaps in his end of life care decisions that he didn't even realize were there or how these gaps could keep from having his and MIL's wishes respected.

Even now, we continue to see how even the most common sense decisions need to be thought about and put in writing. After losing both my mom and FIL within 10 days of each other during the summer of 2017, we are now the sole caregiver for MIL now on Hospice. We have discovered that antibiotics are still administered while on Hospice even when the end of life directives specify no treatment that will extend life because they fall under comfort care. So, we will be making sure to revise our end of life documents to address this for hubby and myself so that decision isn't going to be a "wonder what Mom/Dad wanted" decision for our kiddos.

We had talked about some of this but without the book, FIL never would have opened up (old school man takes care of his family, doesn't show emotion, doesn't want to be burden type) nor would we have had a framework for discussing the topic with our children.

Once we were in the midst of the mess with the parents, we felt totally helpless most of the time, but being able to do something where we felt we could control our decisions helped to keep us grounded.

My suggestion is to get Hospice Involved if you can. They will help a lot in having her live "peacefully". They will honor her wishes and take a load of things off you. Does she have a Living Will or Do Not recessitate? If not you might talk with her and help her get these in place for her peace of mind and added direction for all involved.

What do you FEEL is right? Choose the path of least resistance. Sending loving positive energy ... Bless you!

Unless your mother has been declared incompetent or is unconscious she is her own decision maker. POA becomes active when she can't make her own decisions. As her POA, yes you have to make sure her wishes are honored. I hope she has an advanced directive or even better a POLST if your state is using them. Since the issue of incompetence has been raised, has a competency evaluation been performed?

While I agree that one's decisions/wishes should be considered and dealt with IF the person is competent, I have concerns about OP's mother. Early dementia making these calls? Side effect of not getting diabetes treatments daily, aka befuddled thinking?

One's wishes before dementia kicks in, if sensible, are fine. After, or if there is ANY concern in judgement, I would question it. Wishes, within reason, are fine. If my mother told me to take her out back and shoot her, that would be her wish, no? Would I comply? Not a chance! If she wanted to travel to FL for the winter, like she used to, would I let her? No. She can't possibly do that, not even with help!

Given that she delivered a letter stating her "wishes" and now doesn't recall it... I would question it. If there was any way to coax her into taking her medications, even if it is for her to be able to care for her dog, I would work on that - someone other than you might have to be the one to convince her. Often they don't listen to us or dismiss our concerns, but they will work with others. A visiting nurse? The doctor?

If she doesn't recall the letter and doesn't really understand the implications of not taking her medications, she could end up a lot worse off, being disabled, bed-ridden but still alive... hardly would be able to "live the rest of her time in peace."

I'm not a lawyer but in my eyes your mother is trusting YOU to do what she has asked YOU to do, that is why she appointed you as POA. She in her heart trusted you and felt you would do what she wanted. And in my eyes it's wrong when someone don't do what they have been asked and trusted to do. Because they feel differently no that's not right do as your mother wanted respect her wishes. That's her last wishes not yours not your place to change anything. I've seen where the last wishes wasn't meant because someone thought they knew better. It broke my heart that this special lady's last wishes didn't go as she asked and trusted the family member to do. It's our last wishes respect them and honor them. I hope this helps you. I pray I can find a person that I can truly trust that will do as I want.

As someone with a diabetic mom who wasn't always compliant throughout her life I can relate. I also know from experience that higher blood sugars become more acceptable in older patients and the balancing act becomes a bit different, not sure if that's where your at but it isn't your main question now so I won't go there. My first question to you is when she submitted this letter for her file what was the precipitates for it? Had she up until this point been good about managing her diabetes and just got fed up with it, was it medication for another issue that just got her fed up or was there something else? Was it something she had thought about and considered, discussed with you or was it an abrupt reaction of some sort?

Does she like and trust this doctor, is it her PC or her Endo that decided she was incompetent based on this letter? I ask because I agree with your instinct about honoring her wishes, it not only honors her but also protects you as hard as knowing and honoring that might be but this isn't as straight forward for many of the reasons mentioned below and I can tell you my family has found somewhat of a happy medium. It sure sounds to me like this letter is the primary reason this doctor has decided she is incompetent (you may have the opposite issue of so many others here who can't get a doctor to sign off on incompetence even when it is far more obvious) likely in large part to protect themselves and while this may be a godsend later it doesn't sound like you feel she is "incompetent" or frail. So while you do have some extra power if you will, which she gave you, it doesn't mean you need to exercise it in that way. Depending on some of the answers to my above questions, if I were you I would have a real discussion with mom. You actually are set up to be her "protector" and confidant even more here and have the perfect opening to a discussion. "Mom Dr X contacted me out of concern because you have decided to stop taking your medication and your blood sugars are getting to damaging levels. I told Dr X I would talk to you about your reasons because I feel like you must have a good reason, what made you decide to stop any medical intervention"? Then depending on her response of course I would tell her your fears for both of you if she makes this choice, would she prefer to have a stroke or have a major cardiac event than take some pills? Has she thought about the issues not taking her meds could cause (and I would present each independently) and chosen to live with those over taking her pills a couple times a day? If the answer is yes and you feel she is making that decision clearly... I would break this up into several conversations over days or weeks for my mom, giving her time to digest and think about each piece of the topic, when you dump it all on at once it's gets lumped together and feels so overwhelming she can't pick out the things she comprehends as negative, instead the whole topic is negative and throwing her hands in the air, washing her hands of it isn't a surprising reaction. I wonder if something like this was happening between your mom and the doctor.

My point being you can honor her wishes while watching out for her best interest too and it sounds to me like you are very in tune with both of those things so work with her, find out what's at the root of this move and see what solutions there might be that does both. Making sure she feels respected and heard, in control of her life and accepting your help will make a big difference to both of you. At least this has been our experience with mom and because of that she usually goes along with things she doesn't really want to do but knows she should because ultimately she trusts our judgment. We also find at times when we get the root of her reasons for refusing something it's because she has built up a whole misunderstanding about the topic and that often gets her into a tailspin of anxiety and denial so dissuading her fears helps all of us.

IMHO, you should honor your mother's wishes. BUT with blood sugar at 347, be aware that that is a medical emergency if she goes into a diabetic coma. As AlvaDeer says, is a death warrant, essentially.

Essentially, with sugars this high, your mother is entering a palliative care at least and hospice more likely situation. Essentially this is a death warrant, and the fact is that diabetes kills slowly and torturously. It is not often people die of the high sugar itself. It is more that it will slowly take out all major systems, likely starting with peripheral vascular, heart and kidneys. If you are certain that your mother understood that she was signing on for death (I might do the same) then you are free to carry out her plans and request palliative care and hospice. Wishing you good luck. A hard situation.

Wow is this timely! We took my frail 89 YO mom to the hospital yesterday.. multiple issues, but she is a retired RN and has had a DNR/DNI for years! While all the testing was going on,, the nephrologist ( I feel) bullied me into making her full code,, "for the time being and temporarily". I work in an ICU.. I KNOW how this goes,, once they are intubated you are screwed... So when we went in last night, in front of family and RN we asked her what she wanted. "None of that, just let me go" . Today in front of RN and 2 dear friends we addressed this again.. nope, she wants nothing. So the RN called the Dr and we had it changed. Mom was clear to her,, no dice! The Dr did agree then that with her smoking and her frailty she would not survive CPR, or ever come off the vent. So at least I feel like I am honoring her wishes, hard as it may be. Good luck!

I will agree that to some extent even those with dementia have a "right to refuse" medical treatment. At the time we needed to move mom to MC for her own safety/care, she was refusing to consider ANY kind of move (both brothers offered to take her in, not that it would have been a good idea...) EC atty told us we could not "force" her to move and suggested guardianship. Facility we chose said no committals! In the end, we had to use some "trickery" to facilitate the move.

Now that she is in MC, I have seen how some living there refuse medicine and/or necessary treatment (one was wound care.) The staff told me the residents do have the right to refuse. However, knowing that some of these medical treatments are necessary without being invasive, they use every trick they can to coax the person into agreeing. Usually they get it done without having to force anyone. Good care-givers have ways and persistence!

SonOutOfState said "Caregivers should respect their parents wishes. There is a huge difference between 'sustaining life' and 'prolonging death'. Suspect that most here would choose 6 months of quality time at the end vs. 6 years of 'existing' in a facility." 
This I wholly agree with. There IS a huge difference between maintaining current care without being invasive or going to herculean heights to "save" a life. When mom and dad did all their EC atty paperwork, one long form was regarding medical treatment, aka what interventions they did/did not want. Our mother takes BP meds, necessary antibiotics if/when she gets an infection, some OTCs for minor issues. These, to me, are not artificially extending life, just making the current existence sustainable. She also should have, as she always said, had her knees done long ago. Now, at 96 with dementia, no way would I even consider it, although it would eliminate the pain she sometimes experienced (we did try injection once.) She and dad had DNR and both declined major interventions on their forms, so I would go along with that. If it is something that is treatable with minimal impact, I would have it done (we continue her macular degeneration treatments to preserve her eyesight - with little/no hearing and now refusing to stand/walk on her own, she would end up unable to do much of anything, so we need to keep from losing her eyesight!)

I would lump diabetic treatments, so long as it doesn't require excessive intervention (such as hospitalization), in this same category. It isn't that invasive and it can prevent a whole host of nasty implications, many of which would likely be very cruel and painful! My uncle lost some toes (after he injured them dropping his weights on his foot!) and then his foot, to diabetes. Eventually he just wanted to let go, but he was in a pretty bad state - not "sassy", able to take care of himself and his finances, etc. He was already in a NH before this happened.

OP says "...you would never know that she's ill." and "She grocery shops, manages her finances, takes care of her dog, etc. She 4' 9", 90 lbs. and is full of sass."
She certainly sounds as if she can still manage a lot, but if she is in early stages of dementia, her brain will lie to her and she will think she is "fine." Since she has a dog, she most likely cares very much for it. I would try using him/her as a way to convince mom she needs to continue her own diabetes treatment. If you can provide documents that show what kind of impact diabetes can have when not treated, and then ask who will care for "Spot" if you are sick, hospitalized or die? Putting the focus on this poor dog's life might change her attitude (and might need reinforcement from time to time if she has dementia.) She will also have to see/know/acknowledge the diabetes somehow, if she is saying she doesn't have it!)

Does Mom have a living will? If not, make one post-haste.

I helped my father with his living will and even took him to the bank and had every single page notarized.

Thankfully, he was still in his right-mind when he decided to stop dialysis and we called in Hospice. Hospice did an evaluation and could see that I was trying to allow my father to make his own decisions.

No repercussions.

I think it sad that people like Cetude would completely disrespect their parents, abuse their POA, override their parents wishes and prolonging their parent suffering, forcing them to live with pain in suffering in a condition they made it clear they didn’t ever want to live in. All for their own selfish needs.

Your role is to make sure mom's wishes are honored and to assist in keeping her healthy. Taking oral medications is not usually considered extreme interventions - like ventilators or machines to keep blood flow going - but prudent medical necessities. Better to take her to her doctor to investigate treatment for depression.

Durable Healthcare POA or not, a patient has the right to decline treatment.
As her DH-POA, your responsibility is to make sure her desires are fulfilled.

If there is a question about competence, get an attorney:

National Academy of Elder Law Attorneys
https://www.naela.org/findlawyer
<[email protected]>
NAELA Council of Advanced Practitioners
1577 Spring Hill Rd., Suite 310
Vienna, VA 22182 
703-942-5711
<[email protected]>

Call in hospice and get a palliative care consult.

So what's the doctor's plan? What does the doctor want to do that is at odds with your mother's stated wishes?

Making sure her wishes are honored no matter what... it's more yes, but. When people draw up their advance directives and similar, while it is true that they are of sound mind it is equally true that they cannot know how they will feel about challenges such as pain, breathlessness, anxiety, and - not to put too fine a point on it - fear of death when those challenges come.

Yes honor your mother's wishes, but do leave her some wriggle room.

I am surprised at many of the answers provided here. I am approaching 70 and this past year I sat down with my attorney and revised my will, poa designations, etc. In the past 10 years, I sat on the sidelines because my older brother did not have these instruments. He experienced 8 years of dying one day at a time in a nursing facility, hating every minute of it. He was lucid most days but the facility insisted that he was mentally incompetent to change his medical decisions, and refused to share his 'condition' with us based on privacy issues.

Mom has ALZ. She constantly talks about being ready to die, ready to leave this world she no longer recognizes.

The idea that someone is potentially going to ignore my desires when my time comes is infuriating. There is a reason many Americans incur 80% or more of their lifetime medical cost in their last years...doctors and facilities make their livelihood keeping them alive.

Caregivers should respect their parents wishes. There is a huge difference between 'sustaining life' and 'prolonging death'. Suspect that most here would choose 6 months of quality time at the end vs. 6 years of 'existing' in a facility.

Will there be consequences? Yes. But as you described your mom, I am fairly certain, she knew that when she assigned her POA/medical directive. Ignore the 'advice' from some here to keep mom alive and do what she trusted you to do.

Prayers that she goes peacefully.

If she made her choice at a time when she was competent. It has to stand. In most, states you can't change a competent statement of last wishes even if you have a medical power of attorney.

A person has the right to refuse treatment; however, she should be evaluated if she is mentally competent since daily blood sugar, as you stated, are in the 300's which is nearly incompatible for life. It's a matter of time she will go into diabetic ketoacidosis (DKA) which is a life-threatening emergency, and may even go into a coma requiring an insulin drip. High sugars may also contribute to confusion. All it takes is one single urinary tract infection (UTI) to cause DKA. An upper respiratory infection will also cause it. She is highly prone to UTIs and other infections due to high sugars--bacteria also loves sugar. Being an old person she is even MORE vulnerable to infections, thus DKA -- like most diabetics she probably has gum disease too.

If that were my mom I would have confronted her about this, and insist she get treatment immediately--or call 911 for such a Baker Act if she adamantly refuses. You are talking about your mom's life, and you don't even know if she is competent. Maybe she is clinically depressed which can be treated..or she may be confused from high sugars. You need to fight for her if she is unable to do so herself. That is what I would do if that were my mom.

Your mother would not be the first diabetic to be non compliant with medication and/or diet, mentally competent or not. It makes me so cross when it is a disease which can be mostly controlled so well.
My husband is diabetic, drug compliant, but food? Although he always takes his meds three times a day, he skips meals, stocks up on junk food and snacks when I go away for a few days, and ignores the healthy food choices I leave in the fridge. He has a trade certificate in catering so he knows full well how to cook. The annoying thing is he is well within weight range and his bloods are always good.
In tbe early years of diagnosis the diabetes nurse used to read the riot act ... the dangers to heart, limb, teeth, eyesight et al, but it was water off a ducks back. When none of those things happen I guess it gives patients a false sense of security. Sounds like your mother might be in that category.
I have enough health issues of my own, so I decided years ago that it is his body, his life, his choice, his responsibility. He knows not to complain to me when something is slow to heal, or he is having a hypo....although I must admit I do jump to attention when that happens. But no empathy from me. I suspect the diabetes nurse educators he sees all these years later are similarly inclined.
I live in another country, our bloods are obviously described differently so I have no idea just how off the scale your mother might be. If your mother is not insulin dependant, just takes tablets like my husnand, she might get away with not looking after herself properly. She certainly sounds spritely enough. In which case is it worth while antagonising her, especially when she sounds lime she ignores advice anyway?

You are correct! As others have said, her wishes MUST be honored. The problem is that her wishes might change, and the fact that she has dementia does not necessarily mean that she is not competent to honor her wishes. Legal competence is tricky and it can go back and forth, at least for a while until severe cognitive loss rules all.

It is ethical to discontinue meds and testing if that is your mom's wishes and the doctor must honor those. YOU are your mother, for legal purposes, once you have her PoA. It's not about prolonging her days but making her comfortable and helping her feel at peace. Good luck with all this.

Is her blood sugar ever in the 90 to 160 range? If is, ask her about this then, when her brain is at peak efficiency. The problem with not treating diabetes is all the horrible complications, which could develop remarkably quickly: vision problems, nerve damage, and even amputations. If she's ready to die soon, that's one thing. If she's ready to lose both feet and her vision, and live for another twenty years, that's quite another problem.

Does your mom have periods where she is lucid and could talk about her wishes? If so, I suggest that you have a copy of the paperwork and ask her to go over it with you. Perhaps have someone with you as a witness, or record the conversation.....
Tell her that you want to make sure you are properly following her wishes and go over the POA item by item. Share with her what people here have said - that going without certain measures could leave her in pain, and let her know that you don’t want to see that happen to her. You need some wiggle room so that you can make adjustments to her care in order to make her life more comfortable - not heroic measures, but little things so that she is not in pain.... tough, I know.

I think what is meant here is that the POA is worded so that it starts when LO is determined not to be competent. And the doctor has made that declaration. She certainly sounds pretty functional so not sure she is incompetent just because she is refusing treatment although the elevated blood sugar could cause altered mental status and possibly depression. The question is does the POA designee follow the LO wishes no matter what? You have been designated to act as they would act if they could. But what does that mean? My FIL did his documents 20 years ago. Decisions he would have made then are different than what he would make now. My husband is POA but as the “family nurse”, I am really guiding the process. I feel the POA is to make good decisions for him, not just do whatever he wants. Your mother says she wants to be left alone in peace. Really? She likely will not go that peacefully. She may lose her vision, develop kidney failure, lose circulation and develop gangrene, all due to elevated blood sugar. So are you prepared to reject dialysis if her kidneys fail or to reject surgery if she had not circulation in her feet? Grim? Yes. But untreated diabetes leads to lots of nasty complications. Managing chronic disease is a constant reminder that the person is aging and sick. That may well make her depressed. You might not know she is sick but just developing diabetic retinopathy will cause her to lose her independence. You cannot make her take her medication but as POA, her lack of treatment will leave you to deal with the consequences. My FIL lived in his house with my MIL until he was 92. They moved to independent living first although they really needed more supervision but that was where we started. In the 15 months since he moved, his dementia progressed, she broke hip and has now died, he can not longer stand and is in a wheelchair and he often thinks he and Helen went downtown on the bus to get a corned beef sandwich yesterday. This life is never what he wanted. As POA, my husband has to do what is best for him now. We cannot do what he wanted. Not going to be pleasant probably.

As long as she is not suffering you are doing the right thing. It's a little late to be filling out POLST et al. As POA you plan her end; she selected you because she trusts you...follow your gut and don't complicate it. Work with her doc and let her have her fun in her last whatever it's going to be.

Oh; most "independent" places allow the residents their time. Let's not kid ourselves, and moving her is not a good idea, will only confuse her unless the house wants her gone.

Keep it simple...