Sep 23, 2019
"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:
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.
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!
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.
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
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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.