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?
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.
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.
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.
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.
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.
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.
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 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.
See All Answers