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Palliative Care, Hospice, The PCHETA Bill in the Senate

Hope for the Caregiver / Peter Rosenberger
The Truth Network Radio
September 23, 2019 12:33 am

Palliative Care, Hospice, The PCHETA Bill in the Senate

Hope for the Caregiver / Peter Rosenberger

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September 23, 2019 12:33 am

"It's a very short step from 'I don't want to live like that' to 'No one should live like that.' We need more protection for people." - Nancy Valko (www.nancyvalko.com)

Palliative and Hospice care continue to confuse so many caregivers. While some programs offer amazing and beneficial services to families, others seem to be detrimental.

Involving the Govt. seems to give a stamp of approval of something ...but is it what it says it is?How can we know?

Nancy Valko called HOPE FOR THE CAREGIVER on Sirius XM's Family Talk Channel (131) to discuss this. 

 

Transcript of the Show:

[Music]

Peter:             Welcome to Hope for the Caregiver, here on the family talk channel Sirius XM 131. I am Peter Rosenberger.

This is the nation's number one show for the family caregiver.

  • For those who are putting themselves between a vulnerable loved one and even worse disaster. Somebody who is back and forth to the hospital.
  • Back and forth the doctor's office.
  • Stayed up late at night doing the laundry.
  • Working with special needs children.
  • Taking care of an aging parent.
  • Has an addict or alcoholic in their life.
  • Traumatic brain injury.

There’re all kinds of different impairments, and wherever there's a chronic impairment, guess what? There's caregiver.

How do you help the caregiver? What does it look like to help the caregiver? Why should you help the caregiver? There are 39,480 hours of programming every week on Sirius XM, but this is the one hour that is dedicated to the family caregivers. I'm really glad you're here with us. I'm really glad that Family Talk is doing this show, because there are 65 million people out there right now serving as a family caregiver. Actually, I think that's a low number. 65 million people who are doing this, and they're doing it without pay. You’ve heard a lot about the deficit we have with China every year. Well, guess what? That's $500 billion. That's how much unpaid labor that caregivers are providing every single year. Think about that. They're doing it all the time. I mean, nobody's making them do it, they get up and do it for someone. Sometimes we do it begrudgingly, sometimes we do it swearing under our breath, sometimes we do it with tears flowing down our face, but we still do it.

How are you feeling? If this is where you are, you’ve got an aging parent, or you got a child with special needs or you've got a family member or loved one that you are watching suffer and struggle, and all these kinds of things, and you're standing between them and a cliff. How are you holding up? That's what the show is for.

If you want to be a part of the show, 877-655-6755, 877-655-6755. We are live, and we're thrilled to have you along with us. Speaking along with us, here's the long guy, he's the tall man. He's the man who's never seen a sunset, he's so tall. He is the baron of the board, the Sultan of the sound, the earl of engineering, the man who put the word care on the carry-on luggage. He is John Butler, the Count of Mighty Disco!

[Music]

John:              Hey Peter, how you doing today?

Peter:             I'm just precious. It is a spectacular day. We got a very, very intense show lined up John.

John:              Do we now? Does it involve carry-on luggage? Because I'm not checking these bags. Man, I’m not paying for that.

Peter:             Not checking these bags.

Peter:             Well, I've got a very special guest on, and I'm going to give her as much time as she wants to take. I don't do this often, but I was requested to do this specifically by my wife. It's my show, so I'm going to do what Gracie wants me to do.

John:              Because you're a wise and good individual.

Peter:             This is a very important topic that I have struggled with, and I am not alone in this as a caregiver, and we hear a lot of stuff coming at us, and we don't know where solid ground is sometimes. We're going to talk about palliative care, hospice care, the new bill that's up in front of the Senate, when's it right to die; all those kinds of things that are being thrown at us as caregivers as we go into this world, and it's hard to know kind of where solid footing is. So, I've got a very, very, very special guest on, who has a lengthy amount of experience on this. I'm just going to introduce her right now.

Her name is Nancy Valko. Nancy has been working as a critical care, hospice home health, oncology, dialysis and other specialties as a nurse for 45 years. She is now working as a Legal Nurse Consultant. She also cared for her mother that Alzheimer's who passed away with terminal cancer, as well as her daughter, who also passed away - she had Down syndrome. Nancy's got some real understanding of the caregiving world, both professionally and personally, and so I wanted to spend a lot of time with her today and let's talk about these things that are going on, particularly this new bill that's in front of the Senate. Nancy, how are you feeling? You with me?

Nancy:            I’m just fine. Yes, I’m right here.

Peter:             Thank you for being here. Let's jump right into this. Can you give me a glossary of some of these terms that we're throwing about here; hospice, and palliative and all this stuff, just kind of run us through it. Because some people have been in this world for a while, some people are just now getting into this world, and we don't necessarily know these things. So, I think these are all important things for us to know as caregivers. I would imagine you would agree with that?

Nancy:            Absolutely, and it wasn't until like I said, I'm not a volunteer in all of this. I'm a drafty. I graduated from nursing school 50 years ago, the next month, we're celebrating our 50th year, and I've seen things change. I grew up in the golden age of nursing as I call it. In medicine, we Marcus Welby, M.D. For those of you who are older like I am, you might remember that Medical Center and there were all these wonderful doctors, and I wanted to be a nurse so badly, and I did achieve my dream. I was on my favorite job, what is now a level one trauma, working with the hardest of the hardest, and we took care of people. Our ethics were very simple; we did not harm a patient, we would do nothing to hasten dying, everything was understood. It was not a big deal.

I saw things start to change. What really got me was when I had my daughter, Karen, in 1982. Now, that was the year that we had the Baby Doe case. That was a little boy born with Down syndrome, who had a small hole between his food pipe and his windpipe. Then not an uncommon birth defect and routinely taken care of and the baby can eat and drink. However, in this case, the parents refused the surgery. They said their obstetrician told them that Down’s kids were just nothing more than blobs.

The pediatricians were very upset, and they went to a judge and like would normally happen, expected the judge to say, “Yes, he must have the surgery.” But this was a watershed case, and got national attention. The judge ruled for the parents saying that they had a right to make any decision of treatment or non-treatment they wanted to. The case was being taken up the line, appeal to different courts and lawyers were actually flying to the US Supreme Court and emergency when the little boy died. He died of starvation and dehydration at a week old.

We had heard about that. My husband was a doctor, and of course, I was a nurse. We had to Children, and I was expecting a third. We heard about it. We were just outraged. We said, “Well, we'll adopt the baby.” The parents refused all offers of adoption. They didn't want their other children to know there was a brother out there. I was so upset by him. We said, “What happened to ethics?”

I had been out for a while working with my children and volunteering at church and other places, and I was so upset about it. Someone said, “Well, what would you do?” And I said, “Well, of course, I'd operate.” She said, “You don't know, and you can't say until you've been there.” Well, a couple months--

Peter:             Yeah, and now you’ve been there.

Nancy:            Yep, a couple months after Baby Doe, I had my daughter Karen, and she had Down syndrome. What I was told at first was an inoperable heart defect, which was a shock. They said, “We'll take her home. We think she'll die in two weeks to two months, but you can come back for an appointment in three weeks.” I went home. This is the days before the internet. I got hold of the Down syndrome Association, I did research, I did all sorts of stuff, and by the time I went back to the doctor, he said, “Well, she looks pretty good.” I said, “Well, I've been researching this.” He did some tests, and he says, “Hey, she's got an 80 to 90% chance with one open heart surgery. It's not as bad as we thought.” But then he said, “But I'll do whatever you want.” I said, “Excuse me.” And I hope you decide not to do surgery. I let loose. I said, “This is discrimination against my daughter. She has to be treated as any other child would with the same heart condition. Her Down syndrome is irrelevant. If you can't do it, you can't be her doctor.” And he did say, “Oh, no, I'll do everything for her.”

That's when I thought, “Oh my gosh,” When my daughter was admitted for different tests, I question every doctor and nurse that came in, and I found some really bad attitudes. One doctor, since my husband was a doctor, he said, “People like you shouldn't be saddled with a child like this.” They said, “Then who should?” One nurse was so bad. I slept under my baby's crib, because I just didn't trust her. My trust was gone.

When she was four months old, she had to be admitted to the hospital for pneumonia. That's when I found out what choice really means. I was tipped off by somebody at the hospital that I worked at. He told me that my daughter was made a Do Not Resuscitate against my express wishes, and didn't tell me. I was stunned. I said, “Why?” They said, “Because she says you are quote too emotionally involved with that retarded baby.” That's when I knew that choice could so easily turn into no choice.

Unfortunately, we did lose her despite all care when she was five and a half months old, but the head of Cardiology at the Children's Hospital started Down syndrome clinic. I got very involved with the Down syndrome Association, worked with the Reagan Administration on Baby Doe Reg talks all over trying to get help for these children. We wanted something up there that these children have a right to be treated; any child with a disability.

I started researching; how in the world do we get to this point? I said--

Peter:             Let me cut in real quick. For those who just joined, we're talking with Nancy Valko. This is Hope for the Caregiver. We're talking about some ethics issues that are facing us right now as a society, and it particularly affects us as caregivers. Let's fast forward from the Baby Doe to Governor of Virginia. We're still dealing with the same subject matter here that's going on behind the scenes. This is what Nancy's addressing. By the way, if you want to weigh in on this, the number is 877-655-6755. 877-655-6755. This is Hope for the Caregiver. Nancy, I'm sorry to interrupt on that, but every so often, I just want to let people know kind of what's going on, because we have people joining in and out that kind of thing.

Nancy:            Okay, thank you. That’s fine, because I started seeing things, and my husband unfortunately, became very ill and I was supporting the family. I went back to nursing in the 80s. I was surprised to find out it was more business oriented than anything else, and it was quite different. I also saw how the ethics are changing. One thing I learned, that the year I graduated from nursing school was the year a lawyer called Lewis Kutner up in Chicago, published an article called Due Process of Euthanasia; The Living Will a Proposal. I went, “Oh my goodness.” I started looking into it, and what am I state of Missouri, they were talking about having a living will.

I talked to the people who are going to be pushing it. I said, “This is a problem, and they're actually taking feeding tubes out of brain injured people in the East. Paul, Brophy and Claire Comrie,” and they said, “Oh well, but this is only for people who actually dying.” I said, “It doesn't say that.” That's one thing I've learned and why actually got into--

Peter:             Nancy, let me cut it there. One of the things I've always thought about that particular phrase, we're all dying. None of us is getting out of this thing alive here, and the mortality rate still at 100%. I've always struggled with that, “Well, they've only got six months.” And so why six months? Why is it not “seven months and three days” that kind of thing? Why do they always round it off to numbers that make sense to people, as opposed to factual data? That's always surprised me. “This is only for people who are dying.” Well, show me somebody who isn't.

Nancy:            Six months is an educated guess. When I worked in hospice, we would discharge about 15% of our patients, because they live longer. Then we had palliative care, which at the time, and I was doing home health and hospice, we could then keep the patients longer and take care of them, which was great. Because they still needed home health. I thought this was--

Peter:             I'm sorry, I keep jumping in on you, Nancy. I like to explain some things, because I don't want to assume that everybody's tracking with us. Palliative care, what is that before we go any further, what is that?

Nancy:            That's what we thought. When I worked in oncology, and worked in hospice, there were palliative treatments, and particularly in oncology. That might be the easiest way to explain it. It's supposedly to help distressing symptoms, to relieve terrible symptoms, give help to the person and all, but in those days, we didn't have palliative care physicians per se. Instead of someone had a lot of pain, we call it a pain specialist. If they had trouble breathing, or they had a psychological problem, we would call on the experts for that. The palliative care thing really didn't start until later, which is why this has been a problem. Because with the living will that started and the six months, which is an educated guess anyway, became, well, just terminally ill.

Now in Oregon, which just passed the first assisted suicide bill, they've always said, “We have stringent protections, including, there has to be a 15-day waiting period and all that.” They've gotten rid of that already. That's what's happened with all of it. It went from the living will to taking food and water from people with brain injuries. We saw this here in Missouri. Even though the right to die people, which is what the euthanasia Society of America eventually became, they said, with the living will, “Oh no, we're not talking about taking away food and water.” And once it passed, they introduced another bill and said, “Don't use the first one, and it would allow the family members even to make that decision.”

Peter:             Let me go back to Oregon for a minute. Give me a quick definition of the word palliative care. What does that mean?

Nancy:            Basically, the relief of the distressing symptoms, and taking care of the whole person. Like as in hospice, in Cicely Saunders started that, is caring for the whole person physically, emotionally, psychologically, making death. We never hasten to cause death, but we wanted to take it as the whole process, and these people will be supported in every possible way, and that was--

Peter:             Last year in August, a 28-year old woman shot and killed her special needs child, and then turn the gun on herself, but she was unsuccessful at killing herself, and then she was charged with homicide, I believe. How does that reconcile with what you're telling me and all these other things? Why would they charge her if they're allowing it to go on in other areas? What’s the difference?

Nancy:            Well, it’s not a medical person. When assisted suicide was passed, and when all the sudden we had living will that allowed food and water and everything else be taken away possibly in the future or any kind of tubes, everything changed. If you're not a medical person, then you go to court. The funny thing is though now, we've seen this here in Missouri, these cases are rarely prosecuted. Here in Missouri, we actually had a nurse who without a doctor's order overdose a patient who wouldn't stop breathing after a stroke when she was taken off a ventilator. She gave an overdose of morphine, and a sedative such as the pain of all, which were used too. Anyway, the woman died, and the nurse felt guilty and did say something to another nurse, who reported to administration who then sent it to the county prosecutor. But the son thought she had done a wonderful thing. It was merciful. His mother probably would never be the same again.

The prosecutor for two years, I've written about it on my blog, for two years sat on it, and then finally decided to offer probation. The nursing board said, “Well, she's got this probation, and there was no other punishment for it.” She lost her job, and she was put on probation. When we don't enforce people killing people, we basically allowed it. I think case after case happening like that. A doctor in Holland recently tried to perform euthanasia on a patient was fighting him. They charged him. Well, it was only to make it feel a little harder, because they said, “Oh, no, that's okay.” And they wouldn't convict him of anything--

Peter:             But a man in Montreal earlier this year was sentenced to five years for smothering his wife who had severe symptomatic of Alzheimer, and dimension, so forth and she was in bad, bad, bad shape. He reached the end of his rope and he smothered her, and then he gets five years in prison.

Nancy:            It's entirely different. We had a case in Missouri where a family took their mom and was on the parent’s 50th wedding anniversary if I remember right, and she had a terminal illness. They went there and they gave her an overdose and she died. The prosecutor in this little small Missouri town, with operation wanted to prosecute, but there was so much pushback from the community. He said, “I couldn't get a jury to even hear it, and had to drop all the charges.”

We are having de facto legalization. There are some cases where they do come down hard on someone, but all these laws about homicide, whatever, it shouldn't make a difference whether the person is terminally ill or black or white or whatever. You don't kill another human being, but what they have done, since the ethics changed, like this one nurse put it, she said it changed from do no harm to relieve all suffering. Things started coming in that we hadn't had before.

In fact, a few years ago, I was almost fired for refusing to increase morphine drip on a man who was taken off the ventilator. They didn't quite know what was wrong with him, but they thought his brain was probably fried. There was no reason to think that, but that's what they thought, and I argued about that. When they took them off the ventilator, and he didn't stop breathing, that happens a lot. The doctor ordered a morphine drip. The nurse who gave me report said, “he said to increase it until the man stops breathing. With 30 milligrams right now.” I said, “I won't do it. That's euthanasia.”

I went up the chain of command. I talked to the doctor who had done the original surgery says I don't want to get involved. I went to supervisors who said, “Well, that's a normal oncology dose.” I spent eight years in oncology. There's no such thing. This is ridiculous. I went up to supervisors everything, and I turned the morphine off. The nurse who said, “The doctor said to increase morphine until he stops breathing.” She said I covered your. I wrote morphine for comfort, no limit. I followed the order turn the morphine off.

At the same time at another patient on a ventilator that was waking up. We took her taking her off sedation, we were going to wean off the ventilator the next day after her surgery, who had a lot of pain. I said, “Are you having pain?” She nodded. “Yes.” I said, “I'll call your doctor.” I said, “Sir, could I give her like one milligram of morphine IV? She's so uncomfortable.” And he said, “What are you trying to do? Kill her?” Both were equally stupid.

Anyway, I tried to wake him up and as a respiratory therapist was all unhappy about it, too. They didn't even give him oxygen. They just popped him off the ventilator. I went home, and there was no other nurse to cover for me, but I absolutely refuse and let them all know what up the chain of command. I went home, two days later, I came back, and he was dead, which I figured would happen. Because a lot of people were mad about it. I was called in the office, and they said the doctor wants you fired. I said I did nothing wrong.

They said, “Well, you're good nurse. How about if we just say we reprimanded you?” I said, “I will not accept that.” They said, “How about if we say we educated you on end of life issues?” I said, “I lecture on end of life issues. No.” And actually, I follow the order. He was not uncomfortable. So, there was no reason for him to have the morphine. They said, “We'll go home. We'll try to figure it out.” And some nurses got around our hospital. This was interesting. I figured I'd be harassed out of a job. I was a single parent with three children, so it was not an easy decision. Some nurses thought it was euthanasia, some thought I overreacted, it didn't make that big a difference, but on one floor, the nurses had similar case, and they came up and they said, “You made us think. We're so busy. We hadn't thought about it.”

The doctor ordered an excessive dose of morphine on respiratory patient, and they knew why. Every nurse went to the doctor, and said, “Hell, no, we won't do it. You do it,” and he wouldn't do it. The man had a natural death.

It's scary out there. I know--

Peter:             Well, I've been in a lot of situations in the hospital with Gracie through her 80 surgeries that I can count. She's been anesthetized more times than I know. My wife lives with extreme suffering. This is not a situation that we are unaware of. We have watched this, we've had lots of conversation with payments with specialist. So, this is why I wanted to tackle this today. Get into this, and we're going to come back after the break here at the bottom of the hour. We're going to deal with the new PCHETA bill that's been reintroduced to the Senate.

I want you to talk about this. I want you to talk; why this is important, why do we as caregivers need to know this thing? I've said for a long time that we caregivers are sometimes all the standard between our vulnerable loved one and a cliff, and even worse disaster. Sometimes, sadly, that's happening right in our hospitals, and right in our hospices, and right in all these things. I've seen too many of these things.

This is Hope for the Caregiver. I'm Peter Rosenberger. If you want to be a part of this conversation, the number is 877-655-6755. That's 877-655-6755. We talk with Nancy Valko, longtime nurse. Now, she's a legal consultant with nursing. This is her passion to talk about, and get the word out there. We as caregivers need to be aware, particularly, those of us who live with someone who suffers chronically like this. Okay. Hopeforthecaregiver.com 877-655-6755. We'll be right back.

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Peter:             Hey, this is Peter Rosenberger. Have you ever helped somebody walked for the first time? I've had that privilege many times through our organization standing with Hope. When my wife Gracie gave up both of her legs following this horrible wreck that she had as a teenager, and she tried to save them for years, and it just wouldn't work out. Finally, she relinquished. I mean, thought, “Wow, this is it. I don't have any legs anymore. What can God do with that?” And then she had this vision for using prosthetic limbs as a means of sharing the gospel to put legs on her fellow amputees. That's what we've been doing now.

Since 2005, was Standing with Hope. We work in the West African country of Ghana. You can be a part of that through supplies, through supporting team members, through supporting the work that we're doing over there, you can designate a limb. There's all kinds of ways that you could be a part of giving the gift that keeps on walking and standing with hope.com. Would you take a moment and go out to standing with hope.com and see how you can give, and they go walking and leaping and praising God. You could be a part of that at standingwithhope.com

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STANDING WITH HOPE: GRACIE Have you ever struggled to trust God when lousy things happen to you? I'm Gracie Rosenberger. In 1983, I experienced a horrific car accident leading to 80 surgeries, and both legs amputated. I questioned why God allowed something so brutal to happen to me, but over time, my questions changed, and I discovered courage to trust God.  That understanding, along with an appreciation for quality prosthetic limbs led me to establish Standing with Hope. For more than a dozen years, we've been working with the government of Ghana in West Africa, equipping and training local workers to build and maintain quality prosthetic limbs for their own people. On a regular basis, we purchase and ship equipment and supplies, and with the help of inmates in a Tennessee prison, we also recycle parts from donated limbs.

All of this is to point others to Christ, the source of my hope and strength. Please visit standingwithhope.com to learn more and participate in lifting others up. That standingwithhope.com. I'm Gracie, and I am standing with Hope

A Healthier For You:           How do you feel? Is your body sluggish? How about your mind? What about sleeping? Is that difficult for you? When you had your last physical, what did you learn about your health? Should you lose weight? If you're like so many caregivers, those are hard questions. You didn't get here overnight, and you won't change it overnight, but there are steps you can take starting today. Find more information at ahealthierlifeforyou.com. That's ahealthierlifeforyou.com.

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Peter:             Welcome back to the show for caregivers, about caregivers, hosted by a caregiver. This is Peter Rosenberg, and this is Hope for the Caregiver. We're glad that you want to be on the show. It's 877-655-6755. 877-655-6755. I want to talk real quick before we get back to Nancy. I need some help. Gracie and I started Standing with Hope years and years ago. It was part of her outreach to reach her fellow amputees. We do prosthetic limbs for amputees over in West Africa. It's an extraordinary ministry. Standingwithhope.com. You've heard her ad here in the presenting sponsor of the show, but we collect used prosthetic limbs. They go to a local prison in Tennessee run by CORE CIVIC.  It's one of their many faith-based programs. The faith based programs are great, because that helps give a better foundation for inmates, so that they don't return. Recidivism is not a good thing for them to keep coming back.

They have found that these faith based programs really do work. Inmates volunteer to work with us in this, and they disassemble used prosthetic limbs, so we can recycle parts from it. Not all of the things can be reused like the socket. That's molded specifically for that particular patient, but the knee, the pylon, the screws, the adapters, the connectors, the feet, the socks, the belts of it; all that kind of stuff can be recycled, and we do and then we purchase new materials send it all over there.

Well, we need some. We're out. We got some special needs right now going on particularly with above knee amputees. Maybe you know somebody, maybe you run a funeral home, and the family member doesn't know what to do with the prosthetic limb of a loved one who passed away, do not let it collect dust. Send it to us. Go to standingwithhope.com, standingwithhope.com or says, “Just donate a used limb.” It’s right there on the front page, and get involved and help us get the word out there. Because those things are like gold to people who are waiting to be able to walk. Okay, you got you got to look at the pictures of what happens, the transformative journey they go on, and let's make sure that we can help as many people walk as possible. They go walking and leaping and praising God, and it's an extraordinary ministry.

Alright, so we are back here with Nancy. 877-655-6755. If you want to be a part of the show, 877-655-6755. We are talking with Nancy Valko. She is a longtime nurse. 45 plus years in all types of nursing care; critical care, hospice, home health, oncology, dialysis, other things, but now she's a nurse legal consultant here. She's talking about bioethics, and what's going on in our culture. I think we were all just shocked when Governor Northern Virginia just let it out of the bag to special needs families, “Hey, if this child was born with severe, whatever, then we'll put the child aside, and we'll have a conversation decide what to do with.”

We were all shocked to hear it so clinically done. I mean, it was just like so matter of fact, and yet when we keep sending that kind of message, and it's been going on for a long time, when caregivers get to the end of their rope, they are struggling. They don't know what to do. What does, putting mama wouldn't want to suffer kind of thing. So, we end up being the decision maker or being the influencer of the decision maker if our head space is not in a good space. That's why we're having this conversation here.

I live with someone who suffers. 80 surgeries, both legs amputated, nonstop pain; all these things. A lot of people along the way thought it'd be just be merciful if she died for Gracie, but Gracie wants to live. That's what she just sang that song; rejoice evermore. I'm alive. Lift up my voice. Gracie is not only laugh, she is helping other people walk. She's got a new record coming out next fall. I mean, next month. She is very much alive. I had two children, now she's got two grandchildren, and yet it is contrary to what the world is offering.

Next month I'm going to have a young man. Well, he's 40 years old now named Aaron with Down syndrome. He was on last year. He makes an appointment to come back every year Down syndrome awareness month in October.

John:              I'm so glad to hear about that. I didn't know that was going to happen.

Peter:             Aaron's coming back. Aaron is an Elvis tribute artist.

John:              It’s no joke! Yeah, absolutely.

Peter:             He is deeply into it. He’s loves to laugh. He lifts up his voice.

Nancy is here today to help give us some understanding. So, when we go into these worlds, we need to be prepared. We need to be educated. We need to understand what's going on, and what we're going to be hit with, when we're dealing with somebody who's chronically suffering. If our headspace as a caregiver is not in a good space, then what are we offering to our loved one? I'm the loudest voice that Gracie hears most of the time. She would echo that with a lot of “Amens,” on multiple levels. John, I don't need any comments from you on that.

John:              Of Course …nor stickers or guffaws.

Peter:             If my voice is one of despair or critic criticizing or all doom and gloom, and all this kind of stuff, what's it going to do to her? If you--

John:              What other voices that does that allow into the space? I mean, because you're rather vulnerable, because you’re in this condition and you've got all of these sensible professionals around you, and they might not be acting in your best interests, so it’s up to you.

Peter:             They may indeed not be, and they say, “Well just go ahead. We don't want them to suffer kind of thing.” Gracie is going to suffer for the rest of her life, but that doesn't mean she has a bad life. She's the first one to tell you, and she's the one that said, “I need for you to talk about this on the air today.” Okay, so I'm doing it, because I listened to my wife, John. Nancy, I'm just kind of bringing you back to that. Sorry about that a little bit detour there.

Nancy:            He's absolutely right. My mother told me years ago, “I never want to be a burden on your children.” And she never was. I never tell my children that, because they thought I was a burden when they were teenagers, and I wasn't even sick. We've got to get rid of this idea first. That's why most people--

John:              Hey, wait a minute.

Peter:             Now, you’ve gotten close to home now.

Nancy:            That’s true when they have all the listings of why people do assisted suicide, this little records they keep on them in different states. That's one of the biggest things they have is a fear of being a burden on family or caregivers. With my mother, she always worried about that. Well, she wound up getting Alzheimer's, and then terminal cancer, and I was there. I was asked when she got Alzheimer's, “Are you going to feed her?” And I said, “Well, yeah,” I said, “She's not going to die of starvation and dehydration. Right now she gets up and goes to the refrigerator and eats ice cream out of the basket. Do you want me to tackler?” And they go, “No, of course not.” I said, “No, this is how it is.” That's how it was with my daughter. Because they offered to take everything off my daughter when she was critically ill. I said, “She will not die of starvation and dehydration. She will die of her condition.”

She was comfortable. My mother was also comfortable, and we spoon fed her at the very end. She had a wonderful… we gave her palliative chemo and radiation to help with the pain, because of where it was located in her throat, and she had a beautiful death just the way she wanted, and we took care of the pain. The problem is, if we have the society for the right to die that I talked to you about before has morphed into something called Compassion and Choices, and it's like a business. They are the ones pushing assisted suicide laws everywhere.

I spent a lot of my time going to different states and giving talks on this, but on their website, they say, “Well, if you are in a state that doesn't have it,” and this is what we nurses have been saying, there's other ways you can do it that are legal in any state. One is voluntary stopping of eating and drinking. They're working on advanced directives to stop even spoon feeding. If you have Alzheimer's, you can find a living will for that. They have terminal sedation, where they go, “We’ll make you comfortable.” And then they over sedate with whole food, water and critical medications. I've seen it happen. I fought this too; giving pain medicine, but over pain medicine.

I do have on my website; things to look for when you have a loved one or a friend in the nursing home, which I've had, I know the medicines and all, and I've had too many people call me and they said, “Mom was real perky.” And they said, “Well, we'll just put her in here, maybe start some palliative, hospice care.” That's what they're calling this now. What happen is all of a sudden, “Mom wasn't that awake anymore, and she didn't want to eat.” and they go, “Well, she must be dying?” It was until later what they realized. I have tips on my blog for what to look for in that. Now with compassion and choices--

Peter:             Can you give us one of those tips just off the top of your head right now?

Nancy:            Oh, things like most of them have to have care meetings and stuff. Make sure you're in there. Know what the medicines are. Know what the doctors. I ask all the doctors, “What's your position on assisted suicide?” That's a good bellwether, and you can educate people, but know what they're getting. I was going through these care meetings, I would ask constantly, “Okay, what are the PRNs? Is she getting anything as needed, any pain medicine or whatever?” I kept very close watch. I watched her--

Peter:             Nancy, you throw out a lot of information. Even though most of my audience that are caregivers understanding things, what's a PRN?

Nancy:            That's an as-needed medication.

Peter:             Okay, and so you go into these meetings, you're very aggressive and you are very educated, and you understand these things. A lot of people are in this role as caregivers for the first time, and they don't know these things. They don't know what to do. They don't know what to ask sometimes. We got to make it simple for them, and hopefully they can borrow a little courage from you. When I first started doing this with Gracie, whatever the doctor said that was gospel. Because I didn't want to question doctors. I was brought up to do that, and then I saw--

Nancy:            We all need to go over that.

Peter:             I got over it. I remember one time, but the first time I did that, I stood up to an orthopedic surgeon. I mean, I was 26 years old. I was just a kid, and then it morphed into… I remember telling one doctor, I said, “Look,” and he was giving me all kinds of static, and I said, “Look, I've been taking care of her since she were in junior high school. Let's get it together here, buddy, and keep this in perspective. It doesn't hurt that I'm a second degree black belt,” but that didn't enter into the equation. The point is so many people in this, and they don't have that courage to do that. They don't have that wherewithal to do these things. I want to make this as simple for them as possible, so they have these care meetings. Can they shoe out the caregiver, can the caregiver be there? How do you make sure the caregiver can be there?

Nancy:            I found when I took care of the woman who founded Doctors for Life, I was her medical power of attorney. I found out about, I asked them, and sometimes they kind of forget. I knew what it was. I said, “We need to have one.” I am very aggressive, and even as a nurse, I would take on the doctor sometimes when I felt it was absolutely necessary. This is why I wrote my blog. I've been writing for years. I was a reporter for the National Catholic register, I've written for women's magazines, I've written secular things, I've written journal papers, but I started my blog, and it's called A Nurses Perspective on Life, Healthcare and Ethics. The reason I did it is I wanted to tell people what was going on, and what to look for. It's like, “I have six things you must know about physician assisted suicide,”

Because when I travel, I talked to legislators. They haven't read their bills. They don't know that the doctor gets complete immunity, and that the death certificate must be falsified for privacy, but it's actually so nobody knows, and it has no coverage, no documentation of what happened, except that they got this prescription, the doctor doesn't have to be there and usually isn't. If there's a complication, isn't reported many times, there's just a lot with it and legislators go, “You're kidding me.” We have to understand that legislators, sometimes they're not lawyers, and they depend on lobbyists to talk to them passionate choice, but very, very--

Peter:             Don't get me started on what legislators are--

Nancy:            But they do. They come back again and again. I've been in Massachusetts, in Maryland and recently and they're coming back again this year to try to get it through. They have even, and there was a bill that was defeated in Delaware, where they put assisted suicide as a palliative care option. This is the problem. All this terminal sedation, stopping at eating and drinking or spoon feeding and extra medicine, is called palliative comfort or even routine hospice care for such patients. You have to make sure, if you've got somebody in hospice or a nursing home, and I know good hospice, I was actually asked to be the director of a hospice, but I didn't. Because I saw what happened. It went from game Cicely Saunders thing of we never hasten or cause death to the patient’s choice. Everything was the patient’s choice, autonomy. That's when ethics changed. I couldn't take it, because I saw where it was going, and I knew I would be getting into trouble.

Peter:             Let me back up, because we got to cover one thing. On that particular issue, the patient’s choice, if the patient is in a state of despair, and they don't have anybody around them speaking life to them, then of course, their choice is going to reflect that. This--

Nancy:            That doesn't even cover it. I worked on a bill here and in Missouri, but what happens is, is now hospitals, many of them do, we found this happen in Missouri, have medical futility guidelines. Some of them are secret. What happens is sometimes everybody thought when, “Oh, well you have a right. The family can make this decision if somebody's unconscious.” They found out some families who aren't making quote “the right decision”, so they overruled them. We now have a law in Missouri to make sure that parents of kids with disabilities are notified if they want to put a Do Not Resuscitate or comfort feedings on their baby.

We had to fight for five years in the Missouri legislature before we got a pass this year. A couple that were nice enough not to sue instead said there ought to be a law. Beside themselves, they didn't know why their baby wasn't being treated when he started going bad, and found out he was on comfort feedings, and he'd been made a Do Not Resuscitate without their knowledge. We're trying to say, “Stop that for everybody.”

So, sometimes, like I found with my daughter, Karen, when I said, “I want everything done.” My pediatrician went behind my back and made her Do Not Resuscitate unnecessarily. This is what's scary, but Compassion and Choices has been pushing assisted suicide, and all of this, and with Carrie, you have to understand. I'm spokesperson for the National Association of Prolife Nurses. We're a group of nurses. We strive to seriously care for our disabled, terminally ill, any patient with the compassion and that very highest of ethical standards. We applaud that with medical innovations and supportive care options that can help our patients and family attain the highest quality of life possible. However, with this palliative care, Bill, compassion and choice--

Peter:             Wait, wait, this is the one in Missouri right?

Nancy:            No, this is the one in the US Congress right now.

Peter:             This is the PCHETA bill.

Nancy:            Yeah, it’s the--

Peter:             We only got a few minutes. I need you to really hammer down on this one. Exactly what it is that you want us to know about this? What is it called First off?

Nancy:            It’s called the palliative care hospice education and training. It was brought up supported by Compassion and Choices, who have said they have a mission statements, and we employ educational training programs, and that they wanted their federal policy a general established federal payment for palliative care consultations by train palliative care specialist, who will advocate and support the values and choices of the patient.

Well, this is why we consider this bill so bad. Because what it is, is all about training these people, and making them good. The problem is--

Peter:             Who's sponsoring this bill?

Nancy:            Well, they've got several sponsors, and it was done as, “Oh, we want to make palliative care available to everybody, and we need to train people.” However, there is not the need for that. One of our people went into it and it will cost like at least $86 million. Nothing goes to the patients. It's to promote education. It gives federal grants to all these groups say, “Oh, we want to have a training program.” The problem is the federal funding, and what we're afraid of will teach and institutionalize the unethical practices, including assisted suicide without sufficient oversight, penalties or safeguards.

The first bill when it came out, it was stopped, but then Compassion and Choices backed off when they put a thing in there that federal funding could be removed for objectionable practices furnished for the purpose of causing or assisting a patient's death for any reason such as assisted suicide. However, that was an old clause that actually said this does not apply to withdrawal of other treatment or feeding tubes. That's not good.

Some of the biggest and most influential hospice and palliative care doctors are not good. One of them is Dr. Timothy Quill. He's a Board Certified palliative care physicians, 2012 President of the American Academy of hospice and palliative medicine and a promoter of legalizing physician assisted suicide in terminal sedation. He went to the Supreme Court in 1997. I wrote the nurses brief on that. I helped to do that, or he was trying to get assisted suicide considered constitutional. He lost nine to zero, but he's not through yet. He'd be one of the people that could get these grants quite easily. There's no oversight who gets it. They apply for so--

Peter:             So, what do we need to do about it? Who do we call?

Nancy:            Well, I tell people to contact their legislators in Congress. There are ways to do that. I had that on my blog too. Because we've joined with others like the Euthanasia Prevention Coalition and Healthcare Advocacy and Leadership Organization and other organizations and opposing this.

Peter:             Well, we contact our Congress, I'm just wrapping up, because we're going to run out of time here. Tell me in a nutshell, why is this important to the family caregiver?

Nancy:            This is important, because this is the kind of stuff that they don't know about. I have seen personally doctors tell family members, “Your loved one is brain dead. Your loved one will never have a normal life. Your loved one is going to die.” That's wrong, but it wasn't true, and I said the problem is by the time I left ICU nursing, I was hearing some of the people I work with say, “This person needs to die.” and I go, “They're not even asking for it.” He's, “Well, I wouldn't want to live like that.” But I says, very short step from I wouldn't want to live like that, to no one should live like that. Right now, we don't have enough safeguards for our people. That's why we're doing this.

We need more programs like supportive programs, and good programs, but this is just for training, and media outreach and all this other stuff, and it will become institutionalized. This is just wrong. Like I said, they've even got futility policies that can overrule. Usually, an ethics committee and a hospital can overrule the family. I was in on one case where we had a 5-year old who was on a ventilator. She had one problem, and eventually was going to kill her, but the family kept saying, “No, let's get her off the ventilator again. We don't want to just take it off.” And she was totally the Children's Hospital. It happened to be a Catholic Children's Hospital, “A new doctor is coming in on Monday, and he will remove it no matter what you say.”

They called me on a Friday night. We couldn't get any lawyers. So, I told them say, “You want an ethics committee meeting first thing Monday morning, and tell them that you're bringing a tape recorder.” One thing they're afraid of is lawsuits, and that solve the problem.

Peter:             Well, and that that brings me to a point here that we as caregivers need to have good legal care to look at all these things. It's too much for us. I get this, and I have that, but it's very expensive to have good legal care, isn't it? No, it's not. Let me tell you why. caregiverlegal.com something I do, $24.95 a month. caregiverlegal.com, I have full access to eight entire law firm through this program. If you are living your life without this, you're asking for trouble, because you've got to have a legal care representative in your back pocket, so that you don't get picked pocketed by all these things, and you don't get taken to the cleaners, and you don't get all of a sudden down this road, and you realize that your wishes are not being met here or your loved ones wishes, and you really need to have good legal representation. That's caregiverlegal.com. Check it out. Just go take a look at it, and I'll talk to you about it.

Nancy:            Most people don't know, in July, the Health and Human Services Office of the Inspector General came out with devastating report on problems in hospice. That 80% of them had at least one deficiency, and some of them were very dangerous. This is the kind of stuff is important. This is the kind of information I try to put on my blog. Because I call so much stuff from… I do research, medical research, I talk all over, and I do a lot of voluntary caregiving, including a 97-year old woman who when she broke her hip, and when she was 95, the family was asked, even though she was perfectly conscious, “Do you want us to put her in hospice?” Luckily, they were smart enough to know that was wrong. She's 97 years old, and still kicking today.

Peter:             Well, I appreciate you taking the time on all these things. You've given us a lot of information, and I'm putting it out there for my fellow caregivers. We have to be alert. The world has changed, and there's not even an effort to discuss some of these things now. I remember the conversation with the governor of Virginia when he was just on the radio, just like we're having a conversation radio right now, and just was very matter of fact that, “We just put the kid over there, and we'll decide what to do with that kid a little later.”

Nancy:            The media doesn’t give you the whole story. I’m an ex-reporter.

Peter:             Well, don't give a story on the media. They don't give the whole story a lot of times. It’s fake news, believe me, they're no good. I want to talk about this, because as caregivers, we have to, I'm sorry, this is our journey. Part of it is we've got to step up and be there to be that second set of eyes, the second set of ears, we've got to protect these people. A lot of people wouldn't want to live like my wife, and yet she has an incredibly productive life. It's not easy, but this is what we have to do as caregivers, is be able to speak life to it, but if we're not giving somebody speaking life to us, how are we going to be able to speak life to our loved ones? How are we going to be to be alert and be protect?

We're going to put this out on our podcast, Caregiver Podcast, and it'll be free for you to have. Nancy, thank you for joining us, nancyvalko.com V-A-L-K-O, nancyvalko.com. This is Peter Rosenberger. This is Hope for the Caregiver. hopeforthecaregiver.com.

We'll see you next week.

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Welcome to hope for the caregiver here on the family talk general serious one.

31. I am Peter Rosenberger. This is the nation's number one show for the family caregiver for those who are putting themselves between a vulnerable love one in even worse disaster. Somebody who is back and forth to the hospital. Back-and-forth the doctor's office, stayed up late at night doing the laundry, working with special needs children take care of aging parent has an addict or alcoholic in their life, traumatic brain injury.

There's all kinds of different impairments and wherever there's a chronic impairment is what there's caregiver had a healthcare. What is it look like help the caregiver. Why should you help the caregiver. There are 39,480 hours of programming every week on Sirius XM, but this is the one hour that is dedicated to the family caregiver and you know I'm really glad you're here with some really glad the family talk was doing the show because her 65 million people out there right now serving as a family caregiver XI think that's a low number 65 million people who are doing this in the dirt without pay.

They've heard a lot about the deficit we have with China every year. Well guess what, that's $500 billion. That's how much unpaid labor.

The caregivers are providing every single year. Think about that and they're doing all the tough sit and nobody's making the do they get up and do it for someone. Sometimes you know we do it begrudgingly.

Sometimes we do it swearing under her breath, sometimes to do it with tears flowing down her face, but we still do it and how are you feeling this is where you are, you get an aging parent. We got no child with special needs or you've got a family member or loved one that you are watching suffer and struggle and always because things in your stand between them and a cliff are you holding up. That's what the show was for. If you will be part of the show 877-655-6755 877-655-6755.

We are live and we are thrilled to have you along with this speaking. Along with this. Here's a long guy. He's the tall man. He's the man is never seen the sun setting so tall. He is the burn of the board, the Sultan, the sale, the Earl of engineering. The man he put the word caring to carry on luggage. He is John Butler. The count of muddy disco Peter how you know I'm just as it is spectacular. They would get a very very intense show lined up. John Dewey now does involve carry-on luggage because I'm not checking these bags not taken well I got a very special guest on animal to give her as much time is she wants to take what is often but I'm I was requested to do this specifically by my wife. So you know it's my shows on what to do a Gracie wants me to do and conjure a wise and good individual that's really know this is that this is a very important topic that I have struggled with and and I am not alone in this is a caregiver and we hear a lot of stuff coming at us and we don't know where solid ground is sometimes and this is going to talk about palliative care, hospice care, the new bill that's up in front of the Senate and was right to death all those kinds of things that are being thrown at us as caregivers.

As we go into this world and it's hard to know, where solid footing is and so I've got a very very very special guest on who has a link.

The amount of experience of this_introducer right now name is Nancy Falco and Nancy has been working as a critical care, hospice, home health, oncology, dialysis and other specialty nurse for 45 years and she is now working as a legal nurse consultant. She also cared for her mother that Alzheimer's and who passed away with terminal cancer as well as her daughter, who also past when she had down syndrome. Nancy's got some real understanding of the caregiving world both professionally and personally. And so I wanted to spend a lot of time with her today and let's talk about these things that are going on particular this new bill that's in front of the Senate.

So Nancy how you feeling you with me.

Thank you for being here and let's jump right into this, can you give me a glossary of some of these terms that were throwing about here hospice and palliative and all the stuff just discover what is the because some people have been in this world for a while. Some people are just now getting into this world and we don't nestle you know these things and I think these are all important things for us to know as caregivers. I would imagine you would agree with that and I'm not a volunteer in all of all 50 years ago next month we celebrate it here. Things change. I grew up in the Golden age of nursing. I call it medicine. We have Marcus Welby, MD older like I am might remember that Medical Center and all the wonderful Dr. I want to be a nurse badly and I did achieve my dream and I was on my favorite job, which was now a level I trauma get out working with the hardest of the hardest and we took care of people with our ethics were very simple did not harm the patient really do not dine everything with it was not a big deal but I thought things start to change and what really got me was when I had my daughter Karen in 1982 year that we had the baby okay and that was a little boy born with down syndrome who had a small hole between his windpipe. Not an uncommon birth effect and routinely taking care of the baby can eat and drink. However, in this case the parents refuse the surgery and their attrition told them that down and kids were just nothing more than plot and Christians are very upset and he went to a judge and like would normally happen expected. The catch is that you must have the surgery but this is a watershed case got national attention. Judge ruled for the parent. They had a right to make any decision treatment or nontreatment. They wanted to set the case was being taken up the line appeal to different courts and lawyers were actually flying to the US Supreme Court in emergency when the little boy died died of starvation and dehydration. All and we had heard about that. My husband was a doctor and course I was a nurse. We had children.

I was expecting 1/3 and we heard about it. We were just raised and we will adopt the baby parents refuse all offers the option they didn't want their other children to know that with a brother out there and I was so upset by what happened ethics. I had been out for a while working with my children volunteering at church and other places and I was so upset about it and someone said what would you do that operate don't know and you can change in their book, yet effective video.

I have my daughter Karen and she had down syndrome and when I was told at first with an operable heart and which was a shock and a couple take her home until dying two weeks to two months and come back for an appointment. Three week and I went home and this is the date before the Internet and I got hold of the downs in association I did research I did also. By the time I went back to the doctor. He well she looks pretty good and I for the life and researching that and he did some testing for 8 to 90% chance with one open heart surgery.

It's not as bad as we thought that he said that I'll do whatever you want. I said excuse me and I let you decide not to do surgery and I let live. This termination against my daughter. She has to be treated as any other child would with the same heart condition, down syndrome is relevant. You can't do it.

You can't be her doctor and he did know I'll do everything for her when I saw and my daughter with admitted for different test question every doctor nurse became really bad. One doctor has with the doctor he for people like you should be saddled with the child like that I said and who should one nurse was so bad I slept under my baby's crib.

They just didn't trust her. I trust was gone when she was four months old. She had to be admitted to the hospital for pneumonia and that's when I found out what choice really mean I was tipped off by somebody at the hospital I work at and he told me that my daughter with me to do not resuscitate against the express wishes and didn't tell me and I was stunned. I said why because she says you are quote too emotionally involved with that retarded baby and that's what I knew, that choice could so easily turn into no choice. Unfortunately, did lose her. Despite all care when she did five and half months old at the head of cardiology at Children's Hospital started down syndrome clinic.

I got very involved with down syndrome Association worked with the right ministration on baby Dell rags talked all over trying to get help for these children. We wanted something out there that these children have a right to be treated any child with a disability that I started researching how in the world. We get to this point click to those just this is and we're talking about some ethics issues that are facing us right now society any particular successes.

Caregivers let's let's go. Let's fast-forward to the baby go to Gov. of Virginia so were still dealing with the same subject matter here that's going on behind the scenes. This is what Nancy's dress in the belief you would weigh in on this.

The number is 877-655-6755 877-655-6755.

This is hope for the carriers. Nancy, I'm starting to rip the lid but every so often I just want to let people know, it's going to be people joining in and out but hopefully unfortunately Maryellen. I was supporting the family and I went back to nursing and I was surprised to find out it was more oriented than anything else and it was quite different.

But one thing I learned that the year I graduated from nursing school with the year a lawyer called Lewis in Chicago published an article called due process of euthanasia, living will, a proposal and I went home. I couldn't quite start looking into it and when my state of Missouri. They were talking about having a living well. I talked to the people who are going to be pushing it.

And I said you know this problem and they're actually taking pleading to the brain injured people. Paul Brophy and Claire Conroy and they said oh well this is only for people who are actually dying to say that. That's one thing I've learned my actually got into you. Most of the world this thing live here in the motel and raised 1100% so I've always struggled with that will legally get six months and so 16 was what was not. Seven months and three days of the company. One of the always rounded off to numbers make sense to people as opposed to factual data that's that's always surprised this is only for people who are dying will show me somebody who is willing to start about because they live longer and that was palliative care, which at the time I was doing home health and hospice. We could then keep the patients longer and take care of them, which was great because they still needed, home health, and I thought you like to explain some things because I don't assume that everybody's track with this positive peer talk, but what is that he fully doing for the what is the week when I worked on college teamwork treatment plan oncology that might be way to explain it when it's supposedly to help distressing symptoms to relieve terrible symptoms get help to the person and all but care physicians per se that if someone had a lot of pain we call a pain specialist if they had trouble breathing psychological probably the calling the experts for that I can think really didn't start until later. Which is why this has been a problem because with learning well that's started and six months, which is an educated guess. Anyway became well, just terminally ill.

Now in order how much this past the first suicide belt. I believe that we have stringent protections including has to be a 15 day waiting period. Now that it got rid of that already, and that's what happened with all of that. It went from the living will to taking food and water from people with brain injuries.

We saw this here in Missouri even though the right to die people, which is what the euthanasia Society of America eventually became a set with the living will know when talking about take away food and water and once it passed a introduced another bill for the first one and it would allow family members even make that decision. So you click does this work palliative care. Was it really care.

The whole person like Edison anxiously daughter started that it came for the whole person physically, emotionally and psychologically making that we never pay center because that we plan the whole process any people will be supported in every possible way thing last year in August, 28-year-old woman shot and killed her special needs child then turned the gun on herself, but she was unsuccessful in killing yourself that she was charged with homicide. I believe, how does that reconcile with what you're telling me all these other things. Why would they charge her if there also.

If there allowing it to go on another Aries welding medical person when I went all the living wills allowed food and water taken away possibly feature or any kind to anything change if you're not a medical person then you go to court.

The funny thing is, so now we thing is here in the very cases are rarely prosecuted here in the very we actually had a nurse who, without a doctor's order overdose. The patient who wouldn't stop breathing after a stroke when she was taken off the ventilator and she gave an overdose of morphine anesthetic test such as propane involved with were used to. Anyway, the woman died and the nurse felt guilty and did say something to another nurse who reported to administration, who then consented to the county prosecutor, but the sun thought she had been a wonderful thing. It was merciful. His mother probably would never be the same again to the prosecutor for two years I've written about on my blog for two years sat on it, and then finally decided to offer probation and the nursing board said, well you know she's got this probation and with no other punishment for she lost her job and was put on probation while we don't enforce people killing people. We basically allowed it and I think case after case happening like that. A doctor in Holland. Recently, try to perform euthanasia on a patient with fighting him and and so they charged him while it was only two make it go a little harder because they said all know that's okay and wouldn't convict them of anything made in Montral early this year was five years for smothering his wife who had severe symptomatic of Alzheimer's and dementia, and so forth that she was in bad bad bad shape as he reached the end of his rope with his mother.

He gets five years in prison were family mom, parents 50th wedding anniversary. If I remember right, and she had a terminal illness and he went there and they gave her an overdose in the prosecutor and the full small Missouri town without rate want to prosecute. But there was so much pushback from the community. I couldn't get it. Even here drop all the charges we are having de facto legalization. There are some cases where they do come down hard on someone.

But all these laws about homicide whenever it shouldn't make a difference whether the person is terminally ill or black or white or whatever you know you don't kill another human being, but what The Ethics Change in like This Wondrous Place. She Said It Change from Do No Harm to Relieve All Suffering Things Started Coming in and We Hadn't Had before, and in Fact A Few Years Ago I Was Almost Fired for Refusing to Increase Morphine Drip on a Man Who Is Taken off the Ventilator. They Didn't Quite Know What Was Wrong with Them but They Thought His Brain Was Probably Fried.

There Was No Reason to Think That That That's What They Thought and I Argue about That and That They Took Him up Later and He Couldn't Stop Breathing That Happens A Lot. So the Doctor Ordered a Morphine Drip and the Nurse Gave Me Reports That He Said to Increase That until the Man Stopped Breathing with 30 Mg Right Now. I Said I Won't Do It.

That's Euthanasia and I Went up the Chain of Command. I Talked to the Doctor He Done the Original Surgery since I Don't Want to Get Involved.

I Went to Supervisors.

He Said, Oncology Goes Eight Years. Oncology Is No Such Thing. This Is Ridiculous. I Went to Supervisors Everything and I Turned the Morphine on the Nurse. He Said the Doctor Said to Increase the Morphine until He Stopped Breathing. She Said I Coverage I Wrote Working for Comfort, No Limit, so I Follow the Order Turned the Morphine and at the Same Time at Another Patient on a Ventilator That Was Waking up with You for Taking Your Oxidation. We Are Going to Wean Her off the Ventilator.

The Next Day after Her Surgery Who Had A Lot Of Pain and I Said He Had Obtained.

She Nodded Yes. I Saw Collier Dr. Licensor Give Her like 1 Mg of Morphine She so Uncomfortable What You Trying to Kill Her. Both Were Equally Stupid. Anyway, I Tried to Wake Him up, and a Respiratory Therapist with All and Happy about Achieving Anything Get Him Oxygen.

They Just Pop Them off the Ventilator and I Went Home and It Was Another Nurse to Cover for Me, but I Absolutely Refuse to Let Them All Know, One of the Chain of Command. I Went Home Two Days Later I Came Back and He Was Dead, Which I Think It Would Happen Because A Lot Of People Were Mad about It and I Was Called in the Office They Said the Doctor When She Fired and I Said I Did Nothing Wrong. They Should Let Your Good Nurse. How about If We Just Think We Reprimanded You-I Will Not Accept That They Said How about We Say We Educated You on End-Of-Life Issues. I Said I Lecture on End of Life Issues. No and I Said and Actually I Follow the Order without Uncomfortable Thought There Was No Reason for Him to Have the Insulation Will Call up Try to Figure out in Some Nurses He Got around Her Hospital Is Essential. I Be Harassed Out Of a Job and I Was a Single Parent with Three Children, so Was Not an Easy Decision and Some Nurses Thought It Was Euthanasia. Some Thought, I Overreacted. It Did Make That Big a Difference, but on One Floor Nurses Had Similar Case and They Came up and They Think You Made Us Think Were so Busy We Had Thought about It Afterward an Excessive Dose of Morphine on a Respiratory Patient, and He Knew Why. And Every Nurse Went to the Doctrines That Help Know We Won't Do It. You Do It and He Wouldn't Do It.

So the Man Had a Natural Death. It's Scary out There Long Situations with Grace. The Surgeries She's Been in This Movement Was Loose with Extreme Suffering We Give. This Is Not a Situation That We Are Unaware of.

In We Have Watch This with a Lots of Conversation with Payments Specialists and so This Is Why Wanted to Tackle This Today, Get into This, We Would Come Back after the Break Youth above the Older the Deal with the New Potato Bill That's Been Reintroduced to the Senate and What I Want to Talk about This and Was Talking Why This Is Important Why We As Caregivers Need to Know the City and I've Said for a Long Time That We Caregivers Are Sometimes All That Stand between Our Vulnerable Love One in a Cliff. Even Worse Disaster and Sometimes Sadly That's Happening Right in Our Hospitals in Writing or Hospices Writing All These Things and I've Seen Too Many of the Slaves of This Is Hope for the Cure to Rhyme Peter Rosenberg If You Would Be Part of This Conversation, the Number Is 877-655-6755 That's 877-655-6755.with Nancy Falco Long-Term Nurse. Now She's a Legal Consultant, Nursing. This Is Her Passion to Talk about and Get up Get the Word out That We As Caregivers Need to Be Aware of Those of Us Who Live with Someone Who Suffers Chronic like This. Okay Caregiver.com 877-655-6755 Speed Rosenberg of Your Help Somebody Walk for the First Time I've Had the Privilege Many Times through Our Organization. Standing with When My Wife Gracie Gave up Both of Her Legs Follow This Horrible Rick That She Had As a Teenager and She Try to Save Them for Years and If It Just Wouldn't Work out. And Finally She Relinquished up and Thought Wow This Is That I'm Not IV Legs Anymore.

What Can God Do with That and Then She Had This Vision for Using Prosthetic Limbs As a Means of Sharing the Gospel to Put Legs on Her Fellow Amputees and That's What We Been Doing Now since 2005 Was Standing with Hope. We Work in the West African Country of Ghana and You Can Be a Part of That through Supplies through Supporting Team Members through Supporting the Work That Were Doing over There. You Could Designate a Limb. There's All Kinds of Ways That You Could Be a Part of Giving the Gift That Keeps on Walking and Standing with.com Would You Take a Moment Ago Understanding with.com and See How You Can Give They Go Walking and Leaping and Praising God.

You Could Be a Part of that@standingwith.com as a caregiver. Think about all the legal documents you need power of attorney. I will, living wills, and so many more than think about such things as disputes about medical bills work instead of showing out hefty fees for a few days of legal help you pay a monthly membership and got a law firm for wife well were taking legal representation and making some revisions in the form of accessible, affordable, full-service coverage. Finally, you can live life knowing you have a lawyer in your back pocket who at the same time is an empty it's called legal shield as practical, affordable and a must for family caregivers visit caregiver legal.com that's caregiver legal.com. Isn't it about time someone started advocating for you www.caregiverlegal.com www.caregiver.com, an independent associate caregiver legal.com. Have you ever struggled to trust God when lousy things happen to you. I'm Gracie Rosenberger in 1983 I experienced a horrific car accident leading 80 surgeries in both legs. They became it. I questioned why God allowed something so brutal to happen to me. But over time the questions changed and I discovered courage to trust God and understanding along with an appreciation for quality prosthetic limbs led me to establish standing with help more than a dozen years we been working with the government of Ghana and West Africa, equipping and training local workers to build and maintain quality prosthetic limbs for their own people on a regular basis. We purchased ship equipment and supplies and with the help of inmates in a Tennessee prison. We also recycle parts from donated limbs. All of this is to point others to Christ. The source of my hope and strength, please visit standing with help.com to learn more and participate in lifting others@standingwithout.com.

I'm Gracie. I am staining with help. How do you feel your body sluggish. How about your mind. What about sleeping is that difficult for you when you had your last physical. What did you learn about your health. Should you lose weight if you are like so many caregivers those are hard questions you didn't get here overnight, and you won't change it overnight. But there are steps you can take starting today.

Find more information@ahealthierlifeforyou.com that's a healthier you.com show for caregivers about caregivers hosted by caregiver. This is Peter Rosenberg and this is hope for the caregiver and we are glad that you with us, you will be on the show is 877-655-6755 877-655-6755 one talk real quick before we get back to Nancy. I need some help. We have a gracious started standing with years and years ago it was part of her outreach to reach her fellow amputees and we do prosthetic limbs for amputees over West Africa and it's at this extraordinary ministry stated without.com you for her adherence presents most of the show we collect used prosthetic limbs and they go to local prison in Tennessee run by core civic this one of their many faith-based programs. The faith-based programs are great because it helps give a better foundation for inmate so that they don't return recidivism is not good thing for them to keep coming back so we they have found that these faith-based programs really do work and inmates volunteer to work with us in this and the disassembled used prosthetic limbs so we can recycle parts from that not all of the things can be reused like the socket that's molded specifically for that teacher. Patient but the knee the pylon the screws. The adapter's connectors defeat the socks the belts of it all the stuff can be recycled, and we do that will purchase new materials said it all over. There will we need some were were out. We we got some special needs right now going on particular with above knee amputees or maybe you know somebody made you run a funeral home and the family member doesn't know what to do with the prosthetic limb of a loved one who passed away. Do not let it collect dust. Send it to us go steady with hope.com stating without.com versus just don't use limbs right there on the front page and get involved and help us get the word out that because those things are like gold to people who are waiting to be able to walk okay it it it it you got you got you got a look at the pictures of what happens the transformative journey they go on and let's let's make sure that we can help as many people walk is possible to go walking and leaping and praising God it is it's it's an extraordinary ministry. Alright, so we are back you with Nancy 877-655-6755 if you will be a part of the show 877-655-6755 or talk with Nancy Balko. She is a longtime nurse, 45+ years in all types of nursing care, critical care, hospice, home health, oncology, dialysis, other things. Now she's in nurse legal consultant here.

She still talk about bioethics and what's going on in our culture, and I think we were all just shocked when Gov. nor the Virginia just let it out of the bag to special needs families pay you know if this child is born with severe whatever then will put the child aside and will have a conversation.

So what to do with and we were all shocked to hear it so clinically done to me was just like so matter-of-fact and yet we keep sitting that kind of message and it's been going on for a long time when caregivers get to the end of the rope their struggles they don't know what to do.

What does you know putting mom mama wouldn't want to suffer, think and and so we we we end up being the decision-maker or being the influencer of the decision-maker.

If our headspace is not a good space that's won't have this conversation here. I live with someone who suffers 80 surgeries. Both legs amputated nonstop pain all the something a lot of people along the way thought to be up just be merciful if she died for Gracie but Gracie wants to live this wishing to sing that song rejoice evermore.

I'm alive lift up my voice. Gracie is not only live she is helping other people walk and she had a new record coming out next fall will be only next month. She is, you know she is very much alive, had two children. Now she's got to grandchildren and and yet it is contrary to what the world is offering next month I will have a young man was these 40 years old now name Aaron with down syndrome. He was on last year he wakes an appointment to come back every year Down syndrome awareness you children I'm I'm so glad to hear about Aaron's coming back in the Aaron is an Elvis tribute artist utilities is no joke that yeah he is he is deeply into it so you know he's alive, lift up his voice in an Nancy is here today to help give us some understanding so will be going to these worlds, we need to be prepared.

We need to be educated. We need to understand what's going on. What were to be hit with when were doing with somebody was chronically suffering, and if our headspace is a caregivers not in a good space than what we offering to our Loveland on the loudest voice that Gracie hears most of the time and she would echo that with a lot of emails, but on multiple levels.I don't need any comments from you on the divorce nor Snickers or guffaws. But what if mom is wonderful but sure if my voice is one of despair or critic criticizing or you all the doom and gloom and all these can stuff what to go to due to her and what other voices that does not allow into the space because you're correct, it's rather vulnerable condition and you got all these ostensible professionals around you and they might not be in your acting in your best interests. Date they may indeed not be in is a well just go ahead and you know it we don't want to suffer, think Gracie is going to suffer for the rest of her life, but that doesn't mean she has a bad life and she's the first one to tell you and she's the one that said I need for you to talk about this on the air today okay so I'm doing it because I listen to my wife, Johnson Nancy, that's all.

Just try to bring you back to the sorry about the little debt to other.

My mother told me I never let your children why I never tell my children.

They thought I was a burden when they were teenagers. I was sick because I get rid of my mouth close to home through all the listings of white people. Suicide little record in different states is fear of being a burden on family or caregivers with my mother.

She always worried about that.

Well she wound up getting Alzheimer's and terminal cancer are you going to theater and I said I said she's not going to die of starvation and dehydration right now to get the refrigerator ice cream out of the get out of the get go.

No course I know this is how it is that how was with my daughter that they offered to take everything off my daughter when she was critically ill. I think she will not die of starvation and dehydration. She will tire of her condition and she was comfortable. My mother was also comfortable that her at the very end and she had a wonderful week later palliative team on radiation to help with the pain because of where it was located in her throat and she had beautiful that's just the way she wanted, and we Care the pain. The problem is is we have the right to die. I talked to about before has morphed into something called compassion and choices like a business and they are the ones pushing aside lot everywhere-a lot of my time going to different dates getting talks on but on their website they say well if you state that doesn't happen and this is what we nurses have been thinking of ways you can do it that are legal in any voluntary stopping eating and drinking have out there working on advanced directives and even spoon feeding. If you have Alzheimer's. You can find a living will that have terminal sedation where they go will make you comfortable and many over today with cold water and critical medication. I've seen it happen. I thought this to getting pain medicine overpayment.

I do have on my website.

Things to look for when you're loved one or friend in the nursing home which I had. I know the medicine for not had too many people call me and they said my real perky and put her in here maybe start palliative hospice care that's with the communists now and when mom wasn't that awake anymore and she didn't want to eat.

It wasn't until later when they realize that I have tips on my blog for what to look for in that but can you give us one of the stoops to stop stuff you owe things like most of them have to have like care meeting that make sure you're in know what the medicines are know what Dr. thought the doctors what your position on assisted suicide is a good bellwether you can educate people that know what they're getting, and I was going pretty care me, I would have confidently okay what are the PRN getting anything at any pain medicine or whatever. I get very close watch you through a lot of most motives that are caregivers understand things, what's the PRN that okay with you, very aggressive, and you are very educated, and you understand these things. A lot of people in this role was caregivers for the first time they don't know these things.

They don't know what to do then what sometimes it would gotta make it simple for the and give them and hopefully they can borrow a little courage from you.when I first started doing this with Gracie, I just, whatever the doctor said that was gospel because they're odd. I didn't want to question doctors. I was brought up to do that and then out so well. I got over it.

Number one, but the first time I did that I stood up to an orthopedic surgeon. I mean I was 26 years old. I was just a kid in and embedded it morphed into it on never tell one doctor said you look at he was give me DEDICATE us to look up and take care of her since you were in junior high school was get together your buddy.

Keep this in perspective, it doesn't hurt that I'm a 2nd black belt that that that that didn't enter into the equation. The point is so many people in this and they don't have the courage to do that.

They don't have that wherewithal to do these things and someone to make this a simple for them as possible so they have these care meetings can issue out. The caregiver can the caregiver be there. How do you make sure the caregiver can be there.I with her medical power of attorney.

I forget what we need to have one. I am very aggressive and even at the nurse I would take on the doctor sometime when I felt was actually necessary. When I wrote my plot had been writing for years I was a reporter for the National Catholic register I printer women's magazine written secular think that written journal paper. I started my blog and called nurses perspective on life, healthcare, and ethics. The reason I get it.

I wanted to tell people what was going on and what to look for if I can have six things you must know about the vision assisted suicide because when I travel I talked to legislators read their bill they don't know that the doctor gets complete immunity and certificate must be falsified for privacy, but it's actually nobody knows no coverage, no documentation of what happened, except that they got this prescription the doctor doesn't have to be there usually isn't.

If there's a complication is reported many times this is a lot with that and legislative your we have to understand that legislators sometimes are not lawyers may depend on lobbyist the time. Passion legislators are back again and again I Maryland and recently in coming back again this year to try to get it through.

Even with the bill that went to Delaware where they put suicide and care option. This is the problem all this terminal for Dacian stopping eating and drinking are spoon feeding an extra medicine is called palliative comfort or even routine hospice care for such patients.

You have to make sure if you got somebody in this nursing home and I know that half. I was actually asked to be the director of the hospital but I didn't because I thought what happened.

It went from being socially foundry thing if we never hasten our cause death to the patient choice everything with the patient's choice autonomy.

That's when ethics change, and I couldn't take it because I thought where it was going and I knew I would get getting back because we got on that particular issue. The patient's choice is the patient is in a state of despair and they don't have anybody around them, saying, speaking lies to them that of course the choice is going to reflect that. And this is I worked on a deli hearing very but what little do happen in the very Medical futility guideline and some of them are secret. And what happened is sometimes everything thought when you have a right to know the family connected conscious patient's family for making quote the right decision. So they overruled them when Avalon Missouri to make sure that parents of kids with this ability are notified if they want to put a do not reflect the tater comfort feeding on their baby. We had to fight for five years in the very legislature before we got This year and that couple that were nice enough not to sue instead said thereon to be a law they were beside themselves they did know why their baby with Greentree when he started going bad, he was on comfort feeding and he donated to Kate without their knowledge were trying to say stop that everybody so sometimes like with my daughter Karen when I set I want everything done. My pediatrician went behind my back and take unnecessarily. This is what scary but compassion choices have been pushing you assisted suicide in all of this theory understand spokesperson for the national Association of pro-life nurses were group of nurses. We strive to seriously care for are able terminally ill. Any patient with compassion and very high ethical standards only applied to medical innovations and supportive care option. I can help our patients and family attain the highest quality of life possible.

However, with the care bill compassion and joy. This is the one in Missouri right now. This is the one in the U.S. Congress right now. This is the bill we only got a few minutes. I need you to really hammer down on this with exactly what it is that you want us to know about this was a cold first training bra supported bike enjoy said they had a mission fitting family employ educational training program and that they wanted federal policy in general, establish federal payment for palliative care consultation by train palliative care specialist who will advocate and support the values and choices of the patient. Well, this is why we consider this bill felt bad because what it is all about training people and making them good. The problem is, is sponsoring this bill with several sponsors with only one snake palliative care available every night and we need to train people. However, there is need for that. We had one of our people went into an entity, it will cost like at least $86 million. Nothing goes to the patient to promote education federal grant all these groups say oh we want to have training program. The problem is this federal funding and what were afraid that will teach life.

The ethical practices including suicide, without sufficient oversight penalty safeguard the first bill when it came it was stopped, but then compassion choices backed off when they put a bad federal funding to greet remove objectionable practices furnished for the purpose of causing or assisting patients that, for any reason, such as beside however that with an old clause that actually said this is not apply to withdrawal of other treatment or feeding tubes. That's not good and some of the biggest and most influential hospice and palliative care doctors are not good. One of them is Dr. Kenneth Bakewell is a board-certified palliative care physician 2012, president of the American Academy of hospice and palliative medicine promoter of legalizing physician suicide, terminal sedation, he went to the Supreme Court in 1997 I wrote the nurses brief on that I help you do that what he was trying to get assisted suicide considered constitutional. He lost 90 zero but he's not through yet and he be one of the people affected get the grant quite easily.

There is no oversight who get you know they apply for something to do about it helped people to contact their legislative in Congress and there are ways to do that I had that on my blog to because we join with others like euthanasia prevention coalition in healthcare advocacy and leadership, organization and other organizations in opposing subcontractor comes up just to me, the not so why is this important to the same Richard report kind of stuff that they don't know about saying personally. Doctors tell family members, your loved one is brain-dead your loved one will never had a normal life. Your loved one is going to die that wrong and what wasn't true. The problem is, by the time I left ICU nursing.

I was hearing my people I work with say this person needs to die even for well I wouldn't want to live like that very short step. I would want to live like that. No one should live like that.

Right now we don't have enough safeguards for our people and that's what were what were doing that we need more programs like supportive programs in good program but this is just for training and media outreach. And all this other stock and will become institutionalized and this is just wrong. And like I said they didn't have futility policy that can overrule usually an ethics committee and that'll overruled the family I was in on one case where we had up five-year-old who is on a ventilator. She had one problem eventually was going to kill her, but the family kept saying no you know, get off the ventilator again. We don't want to just take it off and she was told at Children's Hospital happen to be a Catholic Children's Hospital. I knew doctors coming in on Monday and he will remove it no matter what you say and they called me on Friday night. We couldn't get any lawyers Beethoven say you want an ethics committee meeting first thing Monday morning and tell them that you're bringing a tape recorder one thing they're afraid of his lot and I thought the problem that brings me to the we need to have good legal care to look at all these things is too much for us and we and I get this and I have that but it's very expensive to have good legal care is no it's not, let me tell you what caregiver will.com, something I do $24.95 a month caregiver legal.com.

I have full access to eight entire law firm to this program.

This is if you are living your life without this year you're asking for trouble because you got to have a legal care representative in your back pocket so that you don't get pick pocketed by all these things that you don't get taken to the cleaners and you'll get also down this road and you realize that your wishes are not being met here or your loved one's wishes and you really need to have good legal representation.

That's caregiver early.com. Check it out just distal to take a look at it talked about now and July report on problem that had only one deficiency and some of them were very dangerous important information to try to put on my blog because I called so much stuff from I research medical research I talk all over and I do a lot of voluntary caregiving, including a 97-year-old woman who when she broke her hip when she was 95 but family with and even though she was perfectly conscious. She wants to put her in half and luckily they were smart enough to know that was wrong 97 years old and still kicking today. I appreciate you taking the time all these things you give us a lot of information on putting it out there for my fellow caregivers.

We have to be alert. The world is changed and there and there's not even a an effort to disguise some of these things now and then I remember the conversation with the governor Virginia when he was just on the radio just like whatever comes her some regular mail just was very matter fact I was the kid over there will decide what to do with that kid in a little later and the report will startle immediately store a lot of the state news. Believe me no good. But now I want to talk with this because as caregivers we have to. I'm sorry this is our journey part of it is we gotta step up and be there to be that second set is this I consider years we've got to protect these people love people would want to live like my wife and yet she has a very incredibly productive life is not easy, but this is what we have to do as caregivers is be able to speak like to, but if were not given somebody speak in life does have the bills neglect our loved ones. How would you be up to be alert to be protected put this on our podcast caregiver podcast and will be free for you to have Nancy, thank you for joining us.

Nancy Falco.com BAL KO Nancy Falco.com this is Peter Rosenberg. This is hopefully caregiver hope.com


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