Do doctors generally have opinions on this or try to sway one way or another?
My mom’s new PCP asked about her advanced directive, living will, etc., and I told her both my parents and I had discussed this pre her dementia and she wanted all life-sustaining options available to her. She then asked my mom, “Who do you want to make decisions for you in case you couldn’t?” and Mom pointed to me. I also told the doctor she and my dad always told me that, and I was their durable power of attorney.
For a while after that, the doctor kept bringing up situations — that no one lives forever, possibility of being on ventilator, etc., etc. I felt she wanted me to disagree with my mom and my dad and agree to something against their wishes — as I should know better and make the “right” decision.
Is this something doctors are trained to do? Is there a way, even if the doctor disagrees, to just shut down the conversation and commit to what my parents want even if it doesn’t make sense to her without it being uncomfortable?
I think doctors are obligated to keep people alive. At all costs. Disregarding negative outcomes.
They are also obligated to inform their patients of all the options available to them and allow the patient to make their own informed decision. If your mother is able to listen, comprehend, and give direction regarding her care, then the doctor is doing the right thing by informing her of the benefits and potential discomforts.
If, at any time, your mother is unable to speak for herself, then you will make decisions for her care as she has directed you to do.
If the doctor was directing this discussion to you, then the same applies. It is her duty to inform you of the positive benefits and potentially negative consequences of any treatment, and perhaps to gently remind you that no one will be kept alive forever.
If you feel uncomfortable with this doctor, or with any doctor, you are free to select another doctor who meets your approval.
I will say, I find it funny that my cousin, a religious person, wants all available life-saving measures because she says God would want her to stay alive, and my aunt, a religious person, wants to be allowed to die without intervention, because she says God would want her to cross over.
My late husband and I weren't blessed with chiildren (so no grandchildren). My sisters are my POAs and my advanced directive clearly states always do everything, If they cannot handle that, it's not my problem. I wouldn't want them there if they won't advocate for me and do everything possible to keep me alive. I've prepaid my funeral expenses and will be cremated and my urn will be buried beside his casket. I will need my date of death carved into the headstone where I'll be buried, I've already written my obituary and the funeral home who will handle my cremation will publish it in two newspapers. I've given written instructions to our priest about readings from Sacred Scripture, suggestions for lectors, extraordinary ministers of the Eucharist, and hymns for my Requiem Eucharist. if nothing else, one of our priests will be there to give me Last Rites and probably witness my death,
CPR. And I will say these are my opinion...
Works great if you are young and healthy. On an older frail person there is a good chance that ribs will be broken. Painful and difficult to recover from and a good chance that pneumonia will result. (difficulty breathing deeply and clearing fluid)
Feeding tubes. May be fine short term (and there is an option for that) but as a person is dying the body will no longer process foods so the food supplied my result in causing problems.
IV's again find short term but again after a certain point the body will not process fluids and the addition of fluids that are not needed can be problematic.
If you have her advanced directives IN WRITING provide a copy to her doctor for her medical record. Keep a copy with you at all times. Make sure a copy is posted where first responders can see it if they are called.
If you don't have her advanced directives in writing get them written and provide copies to medical staff.
Asking about advanced directives is now a common part of almost any doctor visit and I think there is now even a Medicare billing code for it.
And while it is NOT required anyone on Hospice is asked if they would sign a POLST and most will indicate that they want NO extraordinary measures taken.
It’s your family’s decision to make, but I would NEVER condemn my mother to a needless life of suffering because she said something once most likely not thinking about getting something horrific like dementia.
In case you were wondering, yes, I decided to remove my brother from life support which ended his life.
death is not the worst thing that can happen.
Making that decision can be the most compassionate thing we ever do in our lives. It can also be the hardest decision we will ever make. God bless you for being willing to stand in that gap.
Those who think they want all life-sustaining options open to them often have no idea what they're asking. I think about my friend's husband. She's an RN. She was determined to keep him alive way beyond what made sense. For over two years, she fed him through a stomach tube. Just poured the stuff into the tube however many times a day it took. He seemed miserable. I think of my mother, who died of dementia. At the end, and for quite a long time, she lay curled into fetal position, unable to walk, talk or eat solids. Her hair was mostly gone. She screamed. Her muscles had withered away. Her skin was like paper. Who would ever want to live in such a condition? She had not wanted extreme measures taken to keep her alive, so she didn't get them. Yet she ended up like this. I would have given anything for her to have died before she became a mindless less-than-human husk of a creature, but there was nothing we could do for her except watch her breathe. Finally her breathing stopped, which was a blessing.
If dad is able and adamant about full code, he needs to put this in writing for himself, a good certified elder law attorney can get this taken care of and then you file that with the medical facilities and they will do everything they can to keep his body alive.
I would suggest and encourage you to find some CPR videos, watch them with dad and decide from there if full code is really the way to go.
My dad was a big guy, 350 pounds, had a heart attack, CPR performed and he had cracked ribs. He was 68, still worked a physical job, so he was not frail in any way. I can not imagine what would happen if he was a frail, elderly senior and had CPR, it is violent and damaging to our bodies.
I know how hard this is for you. My dad wanted full code until he died. It was a hard time for him in the end and nothing the doctors did could ultimately save his life, they just made his last months bed bound in a hospital bed or a rehab bed. I believe it was his choice, so I was and am okay with the way it turned out.
I pray you have the answers you need if and when the time comes. But, seriously, get dad to put his choice in writing then you don't have to make decisions for him.
I did have to tell a few doctors, "He is FULL CODE" that term seemed to put a stop to any questions to me, the POA. It wasn't my choice and my actions were governed by law. It does help with any feelings of guilt. You have no decisions to make when it is in writing.
I pray you never have to make decisions for your mom.
You as POA have decisions to make if your elder cannot.
You should know all of the fact.
I was an RN, and only wish that people who insist on resuscitation of the elder had to be there while we do CPR, why we place ventilation tubes.
They should speak with you intensively and if you have one who WILL then you are lucky, because most don't bother to tell you about the torment for no good outcome.
If they feel that your attitude toward to demise coming for your elder is injurious to that elder and causing them pain in a situation they cannot survive, they may call in the ethics committee. It isn't OK to torment people who no longer can say "let me go now" just because their family remains in denial over their ability to survive.
I have been present in situations where families allow what truly is torture and torment, only to be met with the fact that despite all that, their elder's systems WILL FAIL and they WILL die. I thank god for any MD who will explain in minute detail what happens in these cases.
mental capacity, no questions needed, just do it” - how does one proceed? It may not make one bit a difference but Im sure part of my parents’ decision (even before my mom’s dementia) is based on a deep distrust of the medical community. Doctors won’t try as hard to save you if you’re on the way out - so to speak.
So - not sure what to do practically - inform my dad he’s not fully aware of what he and my mom were asking for, that he’s not making the best decision, that he would change his mind if he knew more?? Encourage him to change his mind?
They are entitled to make the decision to have all life saving measures given to them and it is your responsibility to uphold those wishes.
I do not believe you should sway their wishes. However, if there comes a time where your parents need life sustaining support they will receive it. If there is no progress in their recovery you, as POA and Healthcare proxy, will need to make the choice to withhold support due to them not being able to answer in there care. And, this will be a difficult decision that you will need to reconcile with the fact that you have to make the choice in the best interest of the health of your loved one.
I would have that discussion with your parents that due to their decision to have life support and there is no chance for recovery that their child will need to decide for them because of your responsibilities. That is why it really is important they they make their choice knowing all the consequences.
Wishing you peace and strength with this difficult issue.
It is not uncommon for the doctor to make sure they are understanding the persons wishes with direct and blunt questions. More so if another person is speaking for the patient. And, the doctor needs to feel comfortable knowing that the one speaking for the patient isn't projecting their beliefs, views and wishes onto the patients directives.
To be honest and rather blunt: for an elderly person (I do not know the age of your parents) with an incurable disease to wish for often painful life saving measures is rare.
Perhaps it's not the doctors questions that made you "uncomfortable" but the fact that your mom is now at the point in her life where the end is closer than before.
Because as I'm sure you are well aware of by now, dementia itself is a death sentence, and there's no changing that fact.
And why would anyone want to prolong the life of someone who is going to die anyway from dementia and have to continue to suffer in their altered state? To me personally it makes no sense.
My late husband died with vascular dementia, and I have to say that I am grateful that he had the most aggressive of all the dementias so that he didn't have to suffer as long as some other folks that I know who had loved ones go for years and years with this horrific disease.
No one likes to see their loved ones suffering and no one should want to prolong that suffering either.
It's hard, but sometimes we have to just let go, and be at peace with that.
Wishing you peace as you proceed down this very difficult road with your mom.
Here's why - ALL LIFE SUSTAINING MEASURES - includes things like CPR...during which ribs and other bones can be broken in order to save the person. These life sustaining measures can cause pain and suffering - all in an effort to potentially extend a life that may not have much longer. Other "life sustaining" measures can be incredibly invasive.
And all too often people think they want all life sustaining measures because they think that they will get back to baseline quality of life, and they may not.
I think many doctors know that in many cases going full code on a patient that is 90 years old- who wouldn't survive surgery for example to repair broken bones - is not in their best interests.
I know it is not real - but it is a pretty good example. I watch the show "The Pitt" on Max. Medical community weigh ins have suggested that in many ways it may be the most accurate tv representation possible. There was an elderly patient brought in and brother and sister shared POA equally. You could tell brother was ready to let dad rest. Sister wanted ALL life saving measures. They even asked what the patient, who could not speak for himself, would want. It was pretty obvious. But we watched the hospital and doctors do every life saving intervention, including intubating and sedating.
Believe me - I know it's TV. But frankly if you think about it - you HAVE to weigh how helpful it will actually be with how much pain and damage it may cause to your loved one.
I KNOW this is hard. And if your parents true wishes were for all life sustaining measures - that is your prerogative to enforce now. But I often don't think that people really understand what they are saying when they make that decision, because they don't know all of the ramifications of those interventions on an elderly, compromised body.
I can’t recall where I read or heard it recently. My dad (no dementia) referred me to a recent news report where the patient was alive or had brain activity or something like that but the doctors and family thought they did not and took them off life support?? Anyone heard of this - it was either a study, a few medical situations?? Once he heard that!
So is it ok to cross that bridge when/if I need to and review later? Something feels “off” about knowingly going against their wishes now.
I empathize with your concerns. BUT...at least for me, with my mom, with dementia, there came a time where I KNEW that she would not want to "exist" (not live) in the condition she was in and would prefer to die without anxiety or pain. I think perhaps Mom's doc is trying to prepare you for the end game.
((((hugs))))). This is a tough road.