Hi there.
My mom is 80 and cognitively very strong. Has had some decline in health but was optimistic she could get better... and wants to get better.
She had been living in apt in siblings' home but was unhappy due for many reasons including unhealthy environment and behavior of sibling.
Some of us encouraged mom to move to other siblings' home but mom was worried this would cause more dispute. I mention this because sibling trying to make decisions for mom is the one mom has been unhappy living with. I won't get into all of the details of what this sibling has done, other than to say she can be quite unkind and volatile.
Mom was hospitalized with serious illness a while ago but pulled through and was released. At that point mom was really considering her environment not that healthy. Mom hospitalized again due to another serious condition probably due to inadequate care. This time in ICU. She again, starts to pull through and expressing she is ready to make the move to other sibling's home.
Mom has long said things like if something happens to her, she would want life saving measures. She has said it to several of us. During both hospital stays, she said she hopes doctor’s figure out what is wrong, so she can get better. When someone she once knew was on life support and family was considering taking them off, she did not agree. When fluid and nutrition discontinued, she firmly did not agree and felt it was morally wrong. Again, she had these conversations with several of us.
Now she is in a situation where medical staff are asking what her wishes are and some of us are saying one thing and others are saying opposite. ICU doc tried to ask my mom who she wanted for proxy ... she named one of her sons ... but honestly she was not clear headed enough for that to be legal I think (though I would have loved him to be proxy). Took a family vote and family voted someone we were most comfortable with ... however it was more of a majority rules thing so a couple not in agreement and it is not legally binding.
Mom's health is up and down as we are dealing with this challenging condition. It has pretty high mortality rate, but in general not always terminal and folks can recover ... though it is often a rough road. So far mom has demonstrated time and time again she is a fighter. She has responded well to most of the usual treatments and keeps, making it past hurdles a lot of younger people don't.
Of the times my mom is having good days, she is having near normal conversations and continues to say she wants to get better, though she is still in quite a weakened state. Hospital is still relying on family to make all decisions, but family cannot agree. Most of us going by what mom has said in the past and what she is saying now, but other members she is not clear headed enough to say what she wants. And are adamant about things like DNR and certain treatment and wanting to withdraw everything. Keep in mind ... MOM IS AWARE and talking.
Med team said if family does not agree, it would have to go to court.
My questions are:
1. If family does not agree on to treat or not to treat.... or withdraw all treatment including nutrition and fluids... where does the hospital fall legally until court can make a decision if it goes that far?
2. Does anyone have input on this type of situation?
Thank you.
Your Mom picked a proxy for this situation only. You can discuss her care between you but her proxy has the final say and that is the person the doctors should listen to.
I suggest that since this is the second time Mom has been hospitalized, that she is taken to a lawyer and POA for financial and Medical be assigned when she gets released. My Moms Advanced Directive read like a living will. There was no question about what Mom wanted. Each one of her doctors had a copy and a copy at the hospital she went to.
My State started the POLST about 10 yrs ago. I had a copy. There was a copy at the house for EMTs. Each doctor had her (or me as medical POA) sign one for their office and each facility had her sign one. But again, these are only used if the person wants no extreme measures taken. At 73 I would not have something like this in my records, unless, I was suffering from a terminal illness.
P.S. love your name and the numbers are the year I graduated fro High School.
Physicians Order for Life Sustaining Treatment.
This is VERY detailed in what the wishes are.
The range is from No administered fluids to administer for a time while recovery is possible to keeping administering fluids.
The same directive is given for Nutrition.
It also details instructions for CPR
It goes into other detail.
The POLST must be kept with the person and it should be in view in the home and it should be in the medical records.
If the person is taken to the hospital and the POLST form is not with them or on file then technically, legally it does not exist so medical staff with do what they have to do to save a life.
(This document goes by different names in some States so check your State for Physicians Orders. you should be able to Google it)
But this is a discussion you should have and while you may disagree your moms wishes are important.
BUT that said she should know that when a person is at EOL (End of Life) the body does not use food and does not require fluids as we do. To give a person at EOL that refuses food and fluids either can do more harm than good and can cause problems. The body is "busy" keeping brain functioning, lungs breathing and heart pumping that it does not have time or energy to digest food or fluids. Food will remain in the gut, fluids will leak out and find the lower part of the body, or will travel between the muscles and skin and that can cause the skin to swell and split. (I don't mean this to be real graphic but it is important to know)
Just a note on "withdrawing nutrition and fluids" that's not a thing you do to someone who can eat and drink. I think you can refuse IV nutrition and fluids but if you're talking about someone saying "I'm thirsty" and the hospital saying "too bad" that's not what happens at all. It's only at the end of life when the body physically can't process food/water that they don't force it on the patient. Fluid forced on a dying patient often ends up collecting around the heart and lungs just making everything worse.
Mom's proxy stands to do the things she wishes on her WRITTEN advanced directive and to carry forward her wishes as he or she understands them when Mom is unable to act.
If the Advance Directive is not done you are way late on that one. It should have been done some time ago, and it is still not too late to do one if your Mom is, as you say, competent to make her own decisions. OTHERWISE the proxy will make decisions without written wishes of your Mom. And the proxy is the one who will do that, no matter the arguments going on around it.
From the sounds of this, both Mom and some of the family have a fairly unreaistic idea (magical thinking, hopes) regarding what is the likely outcome of what is happening. And I am certain that the doctors are attempting to be realistic with the family. Do know it is time now to call in the Social Services so that there can be meetings. You can also require meetings of the ethics committee of the hospital.
In a court battle the appointed proxy will win as that was the person appointed, and especially in the absence of a CLEAR advance directive. Mine is already, at my age of 80, clear in that I do NOT wish to have extensive treatments, CPR, and that I am ready to do what we all inevitably WILL do not matter how much nor how good the treatment--die.
This is a good warning for people to make their wishes clear in writing. The Advance Directive my system sends at our request in California is 14 pages long. That is to say, it says it ALL. Everyone should have one, no matter what their age.
And do know, that in the end, a hospital may need to inform family that they have done all that is reasonable to sustain someone's life and that there is no further hope that treatment will do anything but proglong the inevitable.
As others say, listen to what the doctors say, I had been told for my father that there was a very small chance of surviving and the actions they would need to take would be very invasive. I was also told that he would never be independent and his standard of life would be greatly impacted. He would require care, probably 24 hour, for the rest of his life. I knew I couldn't provide that and I also knew he wouldn't want care from others or to go to a facility.
It was a hard decision but ultimately the right thing to do. When making the decision, ensure you have a plan for long term, hands on care if you want to continue to provide life saving/heroic measures as this will almost certainly be the outcome.
Unless clear, recent, legal directive stating otherwise.
Eg DNR, Advance Care Directive or Medical Directive (document names can vary).
But as MJ said, actual available choices can & do overrule what people sign or want.
MJ1929 is correct in that CPR would most likely crush her ribs and puncture her lungs, and all the other "life saving" horrors that may end her up bedridden in one of your homes, requiring very expensive 24/7 care (FYI which will exceed the annual cost of a good facility). Quality of life is what should matter to her...and the burden she will inflict on her family. No one likes to think of their dear parent as a burden, but please read other posts on this forum to understand that caregiver burnout is real, as it family chaos and anger. Go into this with your eyes wide open.
Second, heroic measure such as CPR on an elderly person will result in broken ribs and possible punctured lungs. It isn't pretty, and there's a reason why medical professionals are hesitant to do it.
I would assume that if the issue had to go to court, the hospital would continue treatment until told otherwise. However, if she's actively dying, giving her fluids and force-feeding her isn't going to happen no matter what anyone wants. Doing that can kill her, too.
I realize Mom is a fighter and that's admirable, but when it comes down to it, neither Mom nor the family are doctors and you can't demand a doctor continue treating her when she can no longer be treated. I advise you and your siblings to really pay attention to the people who know and understand your mom's condition and listen to their recommendations. They aren't in it for the money, and if she dies, they won't make any anyway, so don't make assumptions about the intentions of the medical professionals.
If you all actually pay attention to what they say, the you'll realize that what Mom wants is ultimately going to be secondary, because if there's no viable treatment available, then that's the end of the decision-making.
Just be realistic and don't tear the family apart over this.