I’m not sure how useful this will be because I’m in the UK but my mum was admitted to hospital 7 weeks ago with an infection related to her recent chemo/immunotherapy for breast cancer. She only 60, her oncologist was sure he could functionally “cure” her cancer and she was cognitively and emotionally sound, thus she didn’t make an advance directive (a form that expresses what medical interventions you do/don’t want in the future) or give my dad power of attorney. There was no need - she was just suffering the usual side effects of chemo, otherwise she was a normal fully functioning person.
Unfortunately she suffered a swift cognitive decline in hospital and began to refuse basic treatment (like antibiotics for the infection). She began to try leaving the hospital on her own. Once she became too weak to get out of bed she would refuse to be cleaned and changed, refused to eat, refused any tests, even X-rays. It was a really difficult situation because as the doctor put it, people are allowed to make “bad choices” when it comes to life saving health care (think Steve Jobs) but only if they are competent enough to fully understand the consequences of their decisions. My mum was deemed incompetent and because she didn’t make a power of attorney previously, we as her family didn’t have any legal standing.
In the UK we have the court of protection- the hospital can petition the court and ask for a separate court appointed third party to make the best medical decisions in mum’s interest. They like to use it as sparingly as possible and it’s stopped as soon as the patient is competent again. Before they petition the court though they try everything possible to get the patient to agree to treatment - cajoling, coaxing, bargaining etc. They take the slightest hint of agreement as permission to do whatever it is they need to do. Mum doesn’t really understand what’s going on anymore - or even where she is - but she trusts my dad and I and we’ve built a strong relationship with the doctors at the hospital. So far we haven’t needed to go to court. They give her morphine every two hours and lorazepam twice a day to reduce the pain of the changes etc and make her more compliant. Yesterday we started mirtazapine (an antidepressant) mainly to stimulate her appetite as she pulled out her NG tube again. We know that she wouldn’t want to take this drug if she was competent, but we also know she wouldn’t want to prolong her hospital stay by not eating if she was in her right mind.
It’s a horrible game of trying not to go against my mums wishes wherever we can, working out of she understands her decision, trying to “trick” her into taking essential drugs/complying with essential care etc. and then trying to explain and justify ourselves during her brief moments of semi-lucidity when she accuses us of wanting her to be ill/be stuck in hospital/to die. It’s absolutely awful for us and mum but I do think the overall guidelines set by the NHS/court of protection are a good way to manage a very difficult situation.
Thank you. It all happened so quickly and things got worse than I ever could have imagined, it doesn’t feel real. (Google Steven Johnson’s Syndrome/TENs if you like nightmare fuel.)
Medically she’s ready to be discharged to an inpatient physio centre now, but she just won’t eat or drink. I’ve just come back from my daily visit and she told me I was rude and condescending and that she used to love me but doesn’t anymore. She doesn’t have dementia or Alzheimer’s - this is just the effect of a fever on a very frail and weak older person who had very intensive chemo and immunotherapy.
I was only asking her to drink one sip of the high calorie drink. They’ll put her back on the nasal feeding tube if she doesn’t start eating again and then she will need to stay in the hospital. It’s so frustrating, incredibly upsetting and beyond exhausting. I was so tired today I just burst into tears when she started being nasty. Normally I can hide it, but it was too much today.
Without going into too much detail (because it isn’t really my story to tell) a close friend of mine recently went through something that was very similar. The woman has passed now but the impact on the individual family members and the relationships within the family continue to play out. Almost none of it is positive.
There were some very hard decisions to be made and disagreements about how delicate the situation was or wasn’t. People drifted in and out of the picture in the final months and several aren’t on speaking terms now that she’s passed.
Before the mental decline everyone’s assumption was that there would be fighting about money and inheritance. As it turned out the argument was about human decency more than anything.
Again, I’m sorry you have to experience it. I don’t have anything more to offer than encouragement to do right by yourself and your loved ones wishes. Make sure you can live with a clear conscience.
Thank you, I appreciate it. I’m sorry for dumping that on you, it was a bit cathartic after a horrible day!
Luckily (?) we’re pretty close to the bread line so there’s nothing to argue about RE her will. We had a weirdly similar situation with an extended family member inserting themselves into the discussions around my mums care with a completely different opinion than everyone else and they caused nothing but more upset and angst. I guess situations like this really can bring out the best and worst in people.
Thank you for the advice about listening to my conscience. When everything is so uncertain and confusing I guess it’s the only thing I can rely on. And I know in my heart that I’m doing everything that I can to help my mum and that if she were well she’d be grateful not hurtful.
I’m sorry you went through all of that, it sounds terrible.
For anyone reading from the US, the system is a little different there. Treatment decisions would default to a health care proxy if a person is not competent (and like this poster said, that means unable to understand, ask questions, and articulate choices, not making bad choices). A health care proxy is different from power of attorney (in the US), check your state for forms to pick one. It’s always a good idea to have one declared and paperwork with your doctor, however if you don’t have one selected on paper, then default health care proxy is closest relative (spouse, then adult kids, then parents, then siblings, usually). If no health care proxy can be found, only then would the court system get involved and appoint a guardian.
In regards to the original posters question, involuntary commitment for a mental health issue may involve a competency determination, but is much more involved and needs to involve courts very quickly. In general only a 72 hour hold can be placed by a doctor without a court getting involved. It’s less common too, most people in inpatient mental health situations are in voluntary stays.
In addition to the ED which is always available if needed as a last resort, check your local area for mental health crisis lines and support. These are often a local group such as through a county and may be affiliated with mental health providers, can often even make home visits and quickly connect people with resources and advice on how to go forward.
We kinda assumed my dad would be her proxy as he’s her next of kin (they’ve been married 42 years) but we don’t have the system here. My dad in particular was upset that a third party stranger would make the medical decisions for mum if it came to it, not him. The only thing they did let us decide was whether they’d employ “heroic measures” on the two occasions when she very nearly died. They accepted our request that she not go to intensive care or be resuscitated - that’s something we had spoken about before and we were certain it was mum’s wish.
I’ve made my dad promise to write his advanced directive when this is over. Speaking as a daughter going through this nightmare right now, I would implore anyone over 50 or with serious health issues to write your advanced directive now or whatever the equivalent is in your country - or just have a conversation with your nearest and dearest about what medical interventions you want to have if you’re too ill to speak for yourself, if nothing else. This would have been an awful awful experience either way, but if she’d written an advanced directive or arranged power of attorney before this happened, at least we wouldn’t have this agonising “are we doing the right thing” question hanging over us too.
ETA: the Terri Schiavo case from the US is an example of why I think the court of protection/independent third party system is better than the automatic next of kin/proxy system you guys have. Although it’s been awful and initially insulting to experience, I completely understand why “take my word for it” isn’t considered adequate for medical decision making here. Before things deteriorated so suddenly, mum was saying wildly different things to my brother, then me and then my dad. Save your family this heartache - write your intentions out now while you’re well enough to do so.
I’m not sure how useful this will be because I’m in the UK but my mum was admitted to hospital 7 weeks ago with an infection related to her recent chemo/immunotherapy for breast cancer. She only 60, her oncologist was sure he could functionally “cure” her cancer and she was cognitively and emotionally sound, thus she didn’t make an advance directive (a form that expresses what medical interventions you do/don’t want in the future) or give my dad power of attorney. There was no need - she was just suffering the usual side effects of chemo, otherwise she was a normal fully functioning person.
Unfortunately she suffered a swift cognitive decline in hospital and began to refuse basic treatment (like antibiotics for the infection). She began to try leaving the hospital on her own. Once she became too weak to get out of bed she would refuse to be cleaned and changed, refused to eat, refused any tests, even X-rays. It was a really difficult situation because as the doctor put it, people are allowed to make “bad choices” when it comes to life saving health care (think Steve Jobs) but only if they are competent enough to fully understand the consequences of their decisions. My mum was deemed incompetent and because she didn’t make a power of attorney previously, we as her family didn’t have any legal standing.
In the UK we have the court of protection- the hospital can petition the court and ask for a separate court appointed third party to make the best medical decisions in mum’s interest. They like to use it as sparingly as possible and it’s stopped as soon as the patient is competent again. Before they petition the court though they try everything possible to get the patient to agree to treatment - cajoling, coaxing, bargaining etc. They take the slightest hint of agreement as permission to do whatever it is they need to do. Mum doesn’t really understand what’s going on anymore - or even where she is - but she trusts my dad and I and we’ve built a strong relationship with the doctors at the hospital. So far we haven’t needed to go to court. They give her morphine every two hours and lorazepam twice a day to reduce the pain of the changes etc and make her more compliant. Yesterday we started mirtazapine (an antidepressant) mainly to stimulate her appetite as she pulled out her NG tube again. We know that she wouldn’t want to take this drug if she was competent, but we also know she wouldn’t want to prolong her hospital stay by not eating if she was in her right mind.
It’s a horrible game of trying not to go against my mums wishes wherever we can, working out of she understands her decision, trying to “trick” her into taking essential drugs/complying with essential care etc. and then trying to explain and justify ourselves during her brief moments of semi-lucidity when she accuses us of wanting her to be ill/be stuck in hospital/to die. It’s absolutely awful for us and mum but I do think the overall guidelines set by the NHS/court of protection are a good way to manage a very difficult situation.
Sorry you have to experience this.
Thank you. It all happened so quickly and things got worse than I ever could have imagined, it doesn’t feel real. (Google Steven Johnson’s Syndrome/TENs if you like nightmare fuel.)
Medically she’s ready to be discharged to an inpatient physio centre now, but she just won’t eat or drink. I’ve just come back from my daily visit and she told me I was rude and condescending and that she used to love me but doesn’t anymore. She doesn’t have dementia or Alzheimer’s - this is just the effect of a fever on a very frail and weak older person who had very intensive chemo and immunotherapy.
I was only asking her to drink one sip of the high calorie drink. They’ll put her back on the nasal feeding tube if she doesn’t start eating again and then she will need to stay in the hospital. It’s so frustrating, incredibly upsetting and beyond exhausting. I was so tired today I just burst into tears when she started being nasty. Normally I can hide it, but it was too much today.
Without going into too much detail (because it isn’t really my story to tell) a close friend of mine recently went through something that was very similar. The woman has passed now but the impact on the individual family members and the relationships within the family continue to play out. Almost none of it is positive.
There were some very hard decisions to be made and disagreements about how delicate the situation was or wasn’t. People drifted in and out of the picture in the final months and several aren’t on speaking terms now that she’s passed.
Before the mental decline everyone’s assumption was that there would be fighting about money and inheritance. As it turned out the argument was about human decency more than anything.
Again, I’m sorry you have to experience it. I don’t have anything more to offer than encouragement to do right by yourself and your loved ones wishes. Make sure you can live with a clear conscience.
Thank you, I appreciate it. I’m sorry for dumping that on you, it was a bit cathartic after a horrible day!
Luckily (?) we’re pretty close to the bread line so there’s nothing to argue about RE her will. We had a weirdly similar situation with an extended family member inserting themselves into the discussions around my mums care with a completely different opinion than everyone else and they caused nothing but more upset and angst. I guess situations like this really can bring out the best and worst in people.
Thank you for the advice about listening to my conscience. When everything is so uncertain and confusing I guess it’s the only thing I can rely on. And I know in my heart that I’m doing everything that I can to help my mum and that if she were well she’d be grateful not hurtful.
Thank you again for the kind wishes and advice 💕
I’m sorry you went through all of that, it sounds terrible.
For anyone reading from the US, the system is a little different there. Treatment decisions would default to a health care proxy if a person is not competent (and like this poster said, that means unable to understand, ask questions, and articulate choices, not making bad choices). A health care proxy is different from power of attorney (in the US), check your state for forms to pick one. It’s always a good idea to have one declared and paperwork with your doctor, however if you don’t have one selected on paper, then default health care proxy is closest relative (spouse, then adult kids, then parents, then siblings, usually). If no health care proxy can be found, only then would the court system get involved and appoint a guardian.
In regards to the original posters question, involuntary commitment for a mental health issue may involve a competency determination, but is much more involved and needs to involve courts very quickly. In general only a 72 hour hold can be placed by a doctor without a court getting involved. It’s less common too, most people in inpatient mental health situations are in voluntary stays.
In addition to the ED which is always available if needed as a last resort, check your local area for mental health crisis lines and support. These are often a local group such as through a county and may be affiliated with mental health providers, can often even make home visits and quickly connect people with resources and advice on how to go forward.
We kinda assumed my dad would be her proxy as he’s her next of kin (they’ve been married 42 years) but we don’t have the system here. My dad in particular was upset that a third party stranger would make the medical decisions for mum if it came to it, not him. The only thing they did let us decide was whether they’d employ “heroic measures” on the two occasions when she very nearly died. They accepted our request that she not go to intensive care or be resuscitated - that’s something we had spoken about before and we were certain it was mum’s wish.
I’ve made my dad promise to write his advanced directive when this is over. Speaking as a daughter going through this nightmare right now, I would implore anyone over 50 or with serious health issues to write your advanced directive now or whatever the equivalent is in your country - or just have a conversation with your nearest and dearest about what medical interventions you want to have if you’re too ill to speak for yourself, if nothing else. This would have been an awful awful experience either way, but if she’d written an advanced directive or arranged power of attorney before this happened, at least we wouldn’t have this agonising “are we doing the right thing” question hanging over us too.
ETA: the Terri Schiavo case from the US is an example of why I think the court of protection/independent third party system is better than the automatic next of kin/proxy system you guys have. Although it’s been awful and initially insulting to experience, I completely understand why “take my word for it” isn’t considered adequate for medical decision making here. Before things deteriorated so suddenly, mum was saying wildly different things to my brother, then me and then my dad. Save your family this heartache - write your intentions out now while you’re well enough to do so.