Question for US members about legal support for getting home if disabling stroke occurs after TAVar or SAVR

Hello Everyone,

I will likely need aortic valve replacement as my stenosis progresses.

I have taken advance health care directive classes and read about the process. I do not have confidence based on what I am reading that I can get discharged home instead of a SNF if a disabling stroke occurs as complication.
It seems that one's own choices can be ignored if doctor assesses one as not competent to make one's own decisions.

For me, losing control of my independence to live at home would be the worst possible nightmare. I would rather live a shorter lifespan but one that is within my control than a longer one in a SNF.

I would like to find legal support for my returning home if a major stroke occurs. Does anyone have any experience with the law or which type of lawyer to work with.and any success protecting their rights in this regard?

Thanks in advance.

CAG12345 said:

I have taken advance health care directive classes and read about the process. I do not have confidence based on what I am reading that I can get discharged home instead of a SNF if a disabling stroke occurs as complication.

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Do you have a trusted family member or good friend? When you took the advance directive classes, they should have told you about nominating a healthcare proxy using a Durable Power of Attorney, as part of the advanced directive. See info on this below and the link. My mom is not competent to make medical decisions for herself, due to severe dementia. Years ago, as part of her advance directive, she listed me as her health care proxy via durable power of attorney for such event. Basically, I am able to make medical decisions for her, and advocate for her, based on her wishes.

Durable power of attorney for health care: A durable power of attorney for health care is a legal document that names your health care proxy, a person who can make health care decisions for you if you are unable to communicate these yourself. Your proxy, also known as a representative, surrogate, or agent, should be familiar with your values and wishes. A proxy can be chosen in addition to or instead of a living will. Having a health care proxy helps you plan for situations that cannot be foreseen, such as a serious car accident or stroke. Learn more about choosing a health care proxy.
https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care#:~:text=Durable power of attorney for health care: A durable power,choosing a health care proxy.

I would not spend too much time worrying about this. Just get the advance directing and healthcare proxy squared away. The risk of suffering such a stroke during your procedure, while not impossible, is relatively low these days, with the methods that they have for reducing the risk of stroke. I believe that it is a bit higher for TAVR than SAVR, however.

Also, once you select your proxy and complete the advanced directive, give your proxy a copy of it and fully explain your wishes to them. I would not just tell them verbally, but I would put it in writting and sign it. The advance directive should cover this, as they would typically have many questions on the directive which you answer as part of completing it- such questions as whether you want to be on life support and at what point you want life support to be terminated. There should also be space where you can include any info on other specific issues which might not be included in the standard form, such as your desire to not be placed in a SNF (For those who don't know, SNF stands for Skilled Nursing Facility, not Sunday Night Football, at least in this context.)

Chuck C said:

Do you have a trusted family member or good friend? When you took the advance directive classes, they should have told you about nominating a healthcare proxy using a Durable Power of Attorney, as part of the advanced directive. See info on this below and the link. My mom is not competent to make medical decisions for herself, due to severe dementia. Years ago, as part of her advance directive, she listed me as her health care proxy via durable power of attorney for such event. Basically, I am able to make medical decisions for her, and advocate for her, based on her wishes.

Durable power of attorney for health care: A durable power of attorney for health care is a legal document that names your health care proxy, a person who can make health care decisions for you if you are unable to communicate these yourself. Your proxy, also known as a representative, surrogate, or agent, should be familiar with your values and wishes. A proxy can be chosen in addition to or instead of a living will. Having a health care proxy helps you plan for situations that cannot be foreseen, such as a serious car accident or stroke. Learn more about choosing a health care proxy.
https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care#:~:text=Durable power of attorney for health care: A durable power,choosing a health care proxy.

I would not spend too much time worrying about this. Just get the advance directing and healthcare proxy squared away. The risk of suffering such a stroke during your procedure, while not impossible, is relatively rare these days, with the methods that they have for reducing the risk of stroke.

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Thank you for your response

Chuck C said:

Do you have a trusted family member or good friend? When you took the advance directive classes, they should have told you about nominating a healthcare proxy using a Durable Power of Attorney, as part of the advanced directive. See info on this below and the link. My mom is not competent to make medical decisions for herself, due to severe dementia. Years ago, as part of her advance directive, she listed me as her health care proxy via durable power of attorney for such event. Basically, I am able to make medical decisions for her, and advocate for her, based on her wishes.

Durable power of attorney for health care: A durable power of attorney for health care is a legal document that names your health care proxy, a person who can make health care decisions for you if you are unable to communicate these yourself. Your proxy, also known as a representative, surrogate, or agent, should be familiar with your values and wishes. A proxy can be chosen in addition to or instead of a living will. Having a health care proxy helps you plan for situations that cannot be foreseen, such as a serious car accident or stroke. Learn more about choosing a health care proxy.
https://www.nia.nih.gov/health/advance-care-planning/advance-care-planning-advance-directives-health-care#:~:text=Durable power of attorney for health care: A durable power,choosing a health care proxy.

I would not spend too much time worrying about this. Just get the advance directing and healthcare proxy squared away. The risk of suffering such a stroke during your procedure, while not impossible, is relatively rare these days, with the methods that they have for reducing the risk of stroke.

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Thank you for your response. I do not have family or anyone to designate as a proxy. I am looking into someone I may be able to hire. But regardless of that, if the doctor says not safe to go home have to go to SNF, fear is that would occur and my life as I know it would be over. Unfortunately the stats I have been reading on disabling strokes in peer reviewed journals have been quite variable. Some up to the high thirties percentage wise within 1 year of the procedure, others considerably lower than that into single digits.

It's prudent to have a POA set up. I'm signing all that paperwork tomorrow actually as I have valve replacement on 10/16.

We had an excellent experience with a geriatric care consultant with my FIL. She came to the hospital and was a tireless advocate for his wishes and care, also super connected and knew all the discharge people at the hospital. In our case my hubs was still the medical POA, but for some of her other clients (solos like yourself who don't have an appropriate family member) she directly played that role. You don't happen to be on the north shore of Chicago do ya? It was not cheap ($160/hr) but also wasn't a lot of hours.

I would echo Chuck to not spend too much time worrying about this especially since you are in the "likely need" future space in terms of surgery, just get the advance directive and healthcare proxy squared away (might be easier said than done I know). Even aside from the heart valve issue, with your horror of SNF you may want pretty aggressive DNR settings in all circumstances. In addition to the medical POA there is another important form called the Polst form, which you complete together with your primary care doc and they sign it, I think then an annual task to update it (or more often if your wishes change). Each U.S. state has their own form. My understanding from the care consultant as well as my sister (a doctor and former hospitalist) is that the Polst is the most useful doc to have completed and incorporated into your actual medical records in order to drive care. Not that important if you want them to "do everything" (the default) but if you want to decline care in certain circumstances the Polst will speak for you.

dornole said:

It's prudent to have a POA set up. I'm signing all that paperwork tomorrow actually as I have valve replacement on 10/16.

We had an excellent experience with a geriatric care consultant with my FIL. She came to the hospital and was a tireless advocate for his wishes and care, also super connected and knew all the discharge people at the hospital. In our case my hubs was still the medical POA, but for some of her other clients (solos like yourself who don't have an appropriate family member) she directly played that role. You don't happen to be on the north shore of Chicago do ya? It was not cheap ($160/hr) but also wasn't a lot of hours.

I would echo Chuck to not spend too much time worrying about this especially since you are in the "likely need" future space in terms of surgery, just get the advance directive and healthcare proxy squared away (might be easier said than done I know). Even aside from the heart valve issue, with your horror of SNF you may want pretty aggressive DNR settings in all circumstances. In addition to the medical POA there is another important form called the Polst form, which you complete together with your primary care doc and they sign it, I think then an annual task to update it (or more often if your wishes change). Each U.S. state has their own form. My understanding from the care consultant as well as my sister (a doctor and former hospitalist) is that the Polst is the most useful doc to have completed and incorporated into your actual medical records in order to drive care. Not that important if you want them to "do everything" (the default) but if you want to decline care in certain circumstances the Polst will speak for you.

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Thank you for sharing your experience and perspective. I am wishing you the very be best for your surgery coming up soon!

CAG12345 said:

Hello Everyone,

I will likely need aortic valve replacement as my stenosis progresses.

I have taken advance health care directive classes and read about the process. I do not have confidence based on what I am reading that I can get discharged home instead of a SNF if a disabling stroke occurs as complication.
It seems that one's own choices can be ignored if doctor assesses one as not competent to make one's own decisions.

For me, losing control of my independence to live at home would be the worst possible nightmare. I would rather live a shorter lifespan but one that is within my control than a longer one in a SNF.

I would like to find legal support for my returning home if a major stroke occurs. Does anyone have any experience with the law or which type of lawyer to work with.and any success protecting their rights in this regard?

Thanks in advance.

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Please, be positive with OPS. For many of us know the risks and rather take on the risk to live. I had a eye stroke a few years ago. It did damage to the eye. But I am still alive, despite not taking my meds like I should have and also am a Diabetic type 2, which is a risk factor also for eye stroke and stroke.
But you cannot live in the what if, for many times, it will never happen. I still live alone at home and there are always risks in the land of the living. Heart attack or stroke but is lessened by taking care of yourself.
I worried a bit about dying on the table when I was getting ready for my Aortic Valve replacement in 2001 at 36 years of age. But when it was over, I was alive and kicking. It is good to get the one's affairs in order before surgery if you are married and have children.
Just live your life. Don't sweat the bad stuff. It happens, it happens.

Have a nice day and weekend and live life.

carolinemc said:

Please, be positive with OPS. For many of us know the risks and rather take on the risk to live. I had a eye stroke a few years ago. It did damage to the eye. But I am still alive, despite not taking my meds like I should have and also am a Diabetic type 2, which is a risk factor also for eye stroke and stroke.
But you cannot live in the what if, for many times, it will never happen. I still live alone at home and there are always risks in the land of the living. Heart attack or stroke but is lessened by taking care of yourself.
I worried a bit about dying on the table when I was getting ready for my Aortic Valve replacement in 2001 at 36 years of age. But when it was over, I was alive and kicking. It is good to get the one's affairs in order before surgery if you are married and have children.
Just live your life. Don't sweat the bad stuff. It happens, it happens.

Have a nice day and weekend and live life.

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Thank you sharing your experience and the encouragement. For me while a stroke that is not completely incapacitating is a concern, I am mostly concerned about one which could threaten my independence and could result in my being institutionalized. That is not an end of life path I am willing to risk. So researching my rights legally as well as putting work into advanced healthcare directives and trying to arrange for an advocate. If cannot guarantee ability to be at home until passing, would likely not risk a procedure. I am wanting to live as long as I can but with the quality of life that for me is at home. Again, hoping to find I can establish a plan to support a return home.
Thanks again.

CAG12345 said:

I am mostly concerned about one {stroke} which could threaten my independence and could result in my being institutionalized.

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Write down a plan for the case of a debilitating stroke. Discuss this with a patient advocate who agrees to follow your plan; then assign them your medical power of attorney.

To gain great rewards we all must take risks. The key is to manage the risks and ensure that they are proportional to the rewards. When we apply this rule to heart surgery, the reward of a healthy life after heart surgery is GREAT; but there are some risks. For the vast majority of us who are in reasonably good health outside of our heart issue, the risks are pretty small. We need to focus on how to manage the risks. Healthcare directives, an advocate who understands us, setting up our home for our recovery, etc. are tools to manage these risks.

I think the chance of a serious complication from heart surgery is perhaps 1 in 500 if your overall health is good. I worry more about driving on a freeway during a blizzard.

3mm said:

Write down a plan for the case of a debilitating stroke. Discuss this with a patient advocate who agrees to follow your plan; then assign them your medical power of attorney.

To gain great rewards we all must take risks. The key is to manage the risks and ensure that they are proportional to the rewards. When we apply this rule to heart surgery, the reward of a healthy life after heart surgery is GREAT; but there are some risks. For the vast majority of us who are in reasonably good health outside of our heart issue, the risks are pretty small. We need to focus on how to manage the risks. Healthcare directives, an advocate who understands us, setting up our home for our recovery, etc. are tools to manage these risks.

I think the chance of a serious complication from heart surgery is perhaps 1 in 500 if your overall health is good. I worry more about driving on a freeway during a blizzard.

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Thank you.

dornole said:

It's prudent to have a POA set up. I'm signing all that paperwork tomorrow actually as I have valve replacement on 10/16.

We had an excellent experience with a geriatric care consultant with my FIL. She came to the hospital and was a tireless advocate for his wishes and care, also super connected and knew all the discharge people at the hospital. In our case my hubs was still the medical POA, but for some of her other clients (solos like yourself who don't have an appropriate family member) she directly played that role. You don't happen to be on the north shore of Chicago do ya? It was not cheap ($160/hr) but also wasn't a lot of hours.

I would echo Chuck to not spend too much time worrying about this especially since you are in the "likely need" future space in terms of surgery, just get the advance directive and healthcare proxy squared away (might be easier said than done I know). Even aside from the heart valve issue, with your horror of SNF you may want pretty aggressive DNR settings in all circumstances. In addition to the medical POA there is another important form called the Polst form, which you complete together with your primary care doc and they sign it, I think then an annual task to update it (or more often if your wishes change). Each U.S. state has their own form. My understanding from the care consultant as well as my sister (a doctor and former hospitalist) is that the Polst is the most useful doc to have completed and incorporated into your actual medical records in order to drive care. Not that important if you want them to "do everything" (the default) but if you want to decline care in certain circumstances the Polst will speak for you.

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I thought spouse's were able to make these types of decisions without power of attorney. One of the reasons I married my wife was because I knew she would do what I wanted (ie: pull the plug, cremation) unlike my parents who would want to keep me alive on a machine forever which is my worst nightmare. She knows exactly what I want and wants the same things for herself, so I don't worry about her getting cold feet. We have our parameters set on when certain measures are to be taken. Do I have to have actual power of attorney drawn up? I thought the marriage covered me.

SatoriFround said:

I thought spouse's were able to make these types of decisions without power of attorney. One of the reasons I married my wife was because I knew she would do what I wanted (ie: pull the plug, cremation) unlike my parents who would want to keep me alive on a machine forever which is my worst nightmare. She knows exactly what I want and wants the same things for herself, so I don't worry about her getting cold feet. We have our parameters set on when certain measures are to be taken. Do I have to have actual power of attorney drawn up? I thought the marriage covered me.

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That's a good question. I think spouses are the next in line after the patient to make decisions. I don't have a spouse or other family.

SatoriFround said:

I thought spouse's were able to make these types of decisions without power of attorney. One of the reasons I married my wife was because I knew she would do what I wanted (ie: pull the plug, cremation) unlike my parents who would want to keep me alive on a machine forever which is my worst nightmare. She knows exactly what I want and wants the same things for herself, so I don't worry about her getting cold feet. We have our parameters set on when certain measures are to be taken. Do I have to have actual power of attorney drawn up? I thought the marriage covered me.

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It varies from state to state in the US, and I'm sure from country to country. In my state (Minnesota, US) spouses DO NOT automatically get health care power of attorney.

In your case, even if you're in a state that theoretically grants automatic spousal POA for health care -- if there's ANY chance your parents would show up and argue with your wife, you're a person who needs a POA and health care directive the most so that your wishes are crystal clear. Imagine how stressful it would be for your wife to have to argue with your parents at a time when she's experiencing a lot of sadness and grief about your ill health . . . or worse endure the stress and cost of your parents taking legal action against her to keep you on a machine. And meanwhile you're left in limbo hooked up for months or years while the gears of justice slowly turn? Not to mention the stress on the hospital staff. It sucks for them when there's conflict, and if there's no POA they're going to default to "do everything" because they don't have legal cover.

Meet with a lawyer and get a health care directive and medical POA in place . It's not a difficult form or process and since you and your wife are both on the same page, it shouldn't be emotionally difficult either. The one I just signed today has an attachment that outlines my wishes for hubs' benefit and clarity to the medical team and any potential "debaters," but he retains the ultimate and sole decision-making authority should I be incapacitated. We plan to update these instructions and preferences annually or more often as needed (can do that informally with an attachment, at least in MN - it is not required to have any written instructions, but it provides guidance and cover for your agent/POA). Your lawyer might even be able to explicitly exclude your parents from your end of life discussions if you feel that's necessary? Maybe they are not still living -- I just wanted to point out what can happen for the benefit of others even if it no longer applies to you.

You have nothing to lose but some time and money by getting a health care directive and POA in place. Everything to gain in terms of control and freedom.

Some basic info here:

https://bluenotary.us/is-your-spouse-automatically-your-medical-power-of-attorney/

It is unrealistic to think that if you have a stroke and aren't able to take care of your daily needs, either because of physical or mental deficits, they are going to send you home without someone there to take care of you. There aren't enough pieces of paper in the world for a physician or social worker to open themselves up to malpractice or charges of neglect.

dornole said:

It varies from state to state in the US, and I'm sure from country to country. In my state (Minnesota, US) spouses DO NOT automatically get health care power of attorney.

In your case, even if you're in a state that theoretically grants automatic spousal POA for health care -- if there's ANY chance your parents would show up and argue with your wife, you're a person who needs a POA and health care directive the most so that your wishes are crystal clear. Imagine how stressful it would be for your wife to have to argue with your parents at a time when she's experiencing a lot of sadness and grief about your ill health . . . or worse endure the stress and cost of your parents taking legal action against her to keep you on a machine. And meanwhile you're left in limbo hooked up for months or years while the gears of justice slowly turn? Not to mention the stress on the hospital staff. It sucks for them when there's conflict, and if there's no POA they're going to default to "do everything" because they don't have legal cover.

Meet with a lawyer and get a health care directive and medical POA in place . It's not a difficult form or process and since you and your wife are both on the same page, it shouldn't be emotionally difficult either. The one I just signed today has an attachment that outlines my wishes for hubs' benefit and clarity to the medical team and any potential "debaters," but he retains the ultimate and sole decision-making authority should I be incapacitated. We plan to update these instructions and preferences annually or more often as needed (can do that informally with an attachment, at least in MN - it is not required to have any written instructions, but it provides guidance and cover for your agent/POA). Your lawyer might even be able to explicitly exclude your parents from your end of life discussions if you feel that's necessary? Maybe they are not still living -- I just wanted to point out what can happen for the benefit of others even if it no longer applies to you.

You have nothing to lose but some time and money by getting a health care directive and POA in place. Everything to gain in terms of control and freedom.

Some basic info here:

https://bluenotary.us/is-your-spouse-automatically-your-medical-power-of-attorney/

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Thank you for this. While now that my mom has passed, I lean towards believing my dad wouldn't get involved in the medical decision, we are going to get this done ASAP, just in case. I love my parents, but they are/were (in the case of my mom since she's no longer here) conservative, pro-life Christians, and I don't want to risk it. I have zero desire to have my body kept alive for years in a vegetative state. I am very science based, and would believe a doctor if he said there was no chance of me ever recovering. LOL Luckily my wife and I are 100% on the same page, and I know she will stand strong for me in this regard, as I would for her, although she has no one left to fight me on any decisions, unless her adult children wanted to fight it. They know her wishes though and none of them have any weird fundamentalist beliefs that would cause them to want to fight the issue.

Lisa from LJ said:

It is unrealistic to think that if you have a stroke and aren't able to take care of your daily needs, either because of physical or mental deficits, they are going to send you home without someone there to take care of you. There aren't enough pieces of paper in the world for a physician or social worker to open themselves up to malpractice or charges of neglect.

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Yeah, I was sort of assuming there was someone there. It is probably a good idea to have a care plan put together should this happen if you want to stay home and have no in-home support currently. Provisions for their care at home should something bad happen. I mean, obviously no matter what the medical directive says they can't send you home if there is no one there to take care of you and you are unable to even feed yourself. I mean what happens, an ambulance drives you home, puts you in your bed and leaves you to die? That isn't going to happen. I guess it all comes down to level of disability.

Just to lighten things up a little bit. It is probably not a good idea to follow Kramer's lead in preparing an Advance Directive. And, definitely, under no circumstances, appoint Elaine as your durable power of attorney:

SatoriFround said:

Yeah, I was sort of assuming there was someone there. It is probably a good idea to have a care plan put together should this happen if you want to stay home and have no in-home support currently. Provisions for their care at home should something bad happen. I mean, obviously no matter what the medical directive says they can't send you home if there is no one there to take care of you and you are unable to even feed yourself. I mean what happens, an ambulance drives you home, puts you in your bed and leaves you to die? That isn't going to happen. I guess it all comes down to level of disability.

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Truth. And 24/7 home care requires hiring 5 people. If you simply can’t get to the bathroom unassisted — 24/7 care. In-home care beyond a little homemaking is an extreme luxury item. Using family caregivers is rough too — both my FIL and BIL had heart attacks from trying to care for my MIL 24/7. It’s very eye opening to go through.

Lisa from LJ said:

It is unrealistic to think that if you have a stroke and aren't able to take care of your daily needs, either because of physical or mental deficits, they are going to send you home without someone there to take care of you. There aren't enough pieces of paper in the world for a physician or social worker to open themselves up to malpractice or charges of neglect.

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Good point. If it is going to be home care for such a situation, there has to be a plan in place for how that is going to work.

Every state is different, but in Texas, there are at least 6 forms that you should have:

Durable Power of Attorney (mostly financial stuff)
Medical Power of Attorney
Medical Directive
In hospital DNR
Out of hospital DNR

And the 6th one that most people don't know about is a Psychiatric Advance Directive.

My mother had Alzheimer's and was put into a facility to figure out meds that would keep her calm and somewhat happy. At first it was an involuntary hold and then they were able to keep her on a voluntary commitment. We didn't know that the Medical Power of Attorney wasn't valid there until I happened to be in her room when the nurse came by and asked for her signature on some document. She was in the beginning of the severe state of the disease and had no idea what she was signing, but was still able to (mostly) sign her name. I asked the nurse about it and she's the one who told me that the MPOA didn't work there. Legally speaking, we didn't have access to her medical record and the doctor wasn't supposed to share medical information with us as long as she was in that facility. Fortunately, the doctor ignored that fact.

Why do I need a psychiatric advance directive? I don't have a mental health issue and don't show any signs of Alzheimer's? I am not about to get committed to a psychiatric facility, I am about to have heart surgery.