Episode 9 – Pat Deegan RN – Advanced Planning
In this episode, Diane Carbo, founder of Caregiver Relief, and Pat Deegan, an experienced hospice nurse and end-of-life specialist, engage in a candid conversation about the natural process of death and dying. They explore how modern medical practices often view death as a failure, leading to unnecessary and aggressive treatments that can cause further suffering. Through personal anecdotes and professional insights, they shed light on the challenges and fears associated with the dying process, while also discussing the importance of anticipatory grief and open communication. Join them as they address the complexities of death, dying, and grief, aiming to help listeners overcome their fear of dying and approach the end of life with a sense of empowerment and understanding.
Diane Carbo: Hi, this is Diane carbo with caregiver relief and today I have pat Deegan with us again, our end of life specialist. And Ex hospice nurse pat and I today are going to take some time to talk about death dying and grief
I feel that modern hospitals are the greatest enemy to a meaningful death. Pat, when we started in nursing, Almost 50 years. Now, I can tell you that what was once viewed as a natural part of life has been seen by doctors and hospitals as failures, a failure that has become almost unacceptable and most modern medical practitioners are embarrassed.
If somebody dies hospitals deny people. A meaningful death. From my personal experience, I can tell you working at a world-renowned cancer center, I can see what happened. They gave people such a light. Altering treatments, even though the outlook was hopeless, I V fluids, blood transfusion, is it other aggressive measures? And it’s just so terrible. What people go through. And it’s unfair to those people that want to manage their own affairs successfully. And I think that people get a mixed message from the medical community on death and dying. And that’s why we have so much fear.
Pat Deegan RN: I have to agree with you on every single point far. I really do because just chemotherapy now, everybody has the right to, but I think if a doctor is honest with the patient, the first question I would ask if it were me, what percentage, what’s the likelihood of shrinking the tumor or what have you and Then you make a decision because let’s face it. Sometimes chemotherapy can be worse than the disease itself. I think we’ve probably all seen that more than one. Yeah. And I think one of the things that I know we’re going to talk about anticipatory, but sudden deaths. Now I saw that when I was the emergency room and it’s such a contrast with a good death, which would, Cancer or lung disease?
Respiratory, what have you, the sudden death mourners have a enormous They don’t have time to respond or to prepare and their grief process can take years sometimes. Cause they, have to process everything and they don’t have the chance because they’re thrown into the chaos of this terrible death. . I’m helping somebody right now whose father died very unexpectedly and it’s over a year and I barely see much encouragement, but I think it’ll come eventually.
Diane Carbo: Pat my mom was diagnosed with lung cancer when I was 17 and she went through the cobalt treatments, had a thoracotomy. She went hell. And the day she went to the oncologist for her final exam, the doctor told her you beat cancer. We’ll leave you beat it. You are, you did amazing. She literally left the doctor’s office, what to the elevator to come over. Cause I was just a freshman in nursing school and she got on the elevator and collapsed and threw a pulmonary embolism and died that night in the intensive care unit. So I can tell you my thoughts on, and here’s the unhealthy part of that. I, my dad did that has affected my entire life. We weren’t allowed to acknowledge that my mom had cancer and discuss that. It was possible that she was going to die. We weren’t allowed to even say the C word because that was terrible. So when my mom beat cancer and still died because of the complications of the treatment she received, I’m still to this day and my mom’s been dead 50 years. I am still grieving her loss.
Pat Deegan RN: Oh, absolutely.
Diane Carbo: I’d like to discuss anticipatory grief, because I went through that as a kid and didn’t know what it was when we were going through the process with my mom’s diagnosis. And I know many family members don’t understand what that means or that even that there are grief.
Pat Deegan RN: That’s yes, that’s very important. They, sometimes they don’t even realize it, subconsciously they were absorbing what’s going on, but to, if you went up and asked them something, they would deny it. They just can’t, it’s too much to cope with. I can mention a couple of contrasts. Symptoms, if you will, between the person and the family mourners. I think the person it’s the preoccupation with the fact that they’re dying because underlying, even though they might not say it, this is all they’re thinking about. They long for who they used to be. Or what they were cause that’s going to be taken away from them. They have cognitive changes in their personality. They become, very lonely, careful irritable, angry, withdraw. And yet with all these things, they still have a need to talk, but they don’t realize it as it’s hard for them to communicate. It just takes over their whole being.
Diane Carbo: I have seen that in cancer patients and COPD, chronic obstructive pulmonary disease patients, emphysemics I have seen it in those individuals over my years of nursing where patients are and they are fearful and they do, they become very drawn within themselves as they start to deal with. Are they dying? Are they prepared to die?
Pat Deegan RN: You’re saying that reminds me of a patient. It wasn’t cancer, but it was it was life-threatening and it was certainly, it was going to take him and he was. I hate to say abusive, but he really lashed out at his wife every day. Just over and over again. And it was the hospice team that came to her rescue because he felt comfortable screaming at her because he couldn’t do it to anybody else. And he felt that she could take it. She was his wife. And once she realized what he was doing , he would never really accept it because he didn’t think he was yelling at her, but she was able to, I don’t know, comfort him and that brings me to another point. There’s some people there’s certainly opposites that are extremely angry because. Is dying. He’s never been here. He was never here for us. He drank all the time. I never knew what he was coming home and now she’s being forced to take care of him. And she’s very angry about this and she doesn’t know how to deal with. And you see that? Not a lot, but you see it.
Diane Carbo: Pat, I was a teenager. My mom, I was driving her for her cobalt treatments. Her skin was burned. She had an incision in her chest at her blower collarbone. The thoracotomy where gallons of fluid would just spew out of her and my dad. Didn’t want to deal with it. So , I was forced to deal with it as a very young woman. And I can tell you. I was so angry, not at my dad, but my mom for being sick. It’s just not, it’s not normal. I felt shame for so long because she was always coughing and I thought, please stop coffee yet. So I understand that anger and that rage and some people get mad at God. Some people get, that’s the big one. Why? So I know that when you’re, when people are getting a diagnosis or taking care of a family member that is in a decline, anticipatory grief is real and people don’t understand that. That’s what they’re going through.
Pat Deegan RN: And everybody that, gets this death sentence, so to speak is going to do it. It’s just normal. Yeah. You think about everything in your whole life. What did I do wrong? Is there somebody I need to make amends with everything and some of the people just don’t want to talk about it. Cause they don’t realize how important it is to get it off their chest. . They just don’t.
Diane Carbo: Yes. And I can tell you that my mom died suddenly and it negatively impacted my entire life because my dad wouldn’t let us talk about it. And then when my mom did die, he had another woman in his life right away, so we weren’t even allowed to discuss. So it was very hard. And it was very unhealthy.
Pat Deegan RN: That’s a perfect classic case of exactly what we’re talking about it really?
Diane Carbo: Yeah. There’s also people have a fear of death. And one of the fears that the biggest fear that they have is with high-tech medicine. They’re being afraid to be locked into machines and losing control of their own wives and, so we go through this grieving process where you’re afraid to die. You want a quality of life and I think that the medical community really fails us because they continue to treat and treat sometimes to the point where they hurry along your desk versus the way your desks.
Pat Deegan RN: Yeah they just take care of the medical modality and they don’t think of the spiritual or any other parts of the human being yeah, more times than I would like to.
Diane Carbo: Oh, me too. . It makes me sad. It makes me sad because people, first when they get a diagnosis, whether it’s the family member that gets the diagnosis with a chronic illness or a terminal condition, Or it’s the family member, like the family caregiver. That’s having to take care of them. You go through the shock, the denial, no, this isn’t me. Then the anger. Then you go through bargaining and, That’s where I think that’s where the medical delivery system salespeople, because the bargaining is to some people is just reaching out to grasp at any kind of thing to prolong their life.
Pat Deegan RN: Yeah. Say to themselves. Oh God, I’ve been good. I’ve never killed anybody. I’ve been good to my wife and everything. Just keep me alive long enough to see my first grandchild or let me live long enough to see my daughter get married. And that’s a big part of the different stages of, accepting the fact that they are dying, but it isn’t easy. Not at all. And people, I don’t think realize just how difficult it can be if they don’t have the help from others.
Diane Carbo: Exactly and caregivers are dealing with this too, because they’re seeing the decline of their family member they’re also bargaining and this is when the doctors. They under utilize hospice. Palliative care and hospice are so underutilized by the medical community because they feel that it’s a failure and family members need that. And family members need to be proactive and say to the doctor, what would you do in this situation?
Pat Deegan RN: That’s right. Absolutely.
Diane Carbo: Or your family member because doctors. And push until they are responsible for almost killing people. They do deny them a peaceful death in a lot of ways.
Pat Deegan RN: Yes. You’ve taken some points very well taken because it’s such a traumatic to anybody, even when you expect it, yeah. I knew my husband was dying, but what was important was he wanted to die at home. I don’t know if that was, that’s what he said, but I don’t know. Maybe because I was a nurse, I don’t know, but I was able to tell my children exactly what was going to happen next. My parents were still alive, so they had nobody in their life that had died yet and here their father’s dying. He’s going to do this. It’s going to happen like this. And after our talk last week, I remembered one of my daughters. So concerned because my husband didn’t want to eat anything. And I said, but it’s all his sisters are beginning to go and if we force him to eat, it really does cause pain in these patients because the body has to work so much harder to metabolize it and one day he said this to this particular daughter, could I have a Popsicle while she was the happiest little girl on earth? Because he or she could do something for her father and he was going to eat something.
Diane Carbo: Yes. There you go. You’re bargaining with God you’re bargaining with universe, you’re bargaining for a cure or to prolong life and when people come to the realization that they may not be prolonging their life, prolonging pain suffering, or whatever, they become very depressed.
Pat Deegan RN: Oh yeah. And they withdraw and they, they don’t watch TV and they want a nap all the time. They really do withdraw.
Diane Carbo: Yes. And so do family caregivers.
Pat Deegan RN: Oh God. Yes. Most important people.
Diane Carbo: Yes. And you’ve been there. I’ve taken care of my father and my mother-in-law. And you took care of your husband and multiple hospice patients. So you’ve seen the family dynamics.
Pat Deegan RN: Yep. I certainly have, and I think what’s important. I think. The family let’s say is that you can give them a rough idea of what’s going to happen. And when like months before death they need to know how he’s feeling when at all possible. What’s going to happen next? What is he going to do? And a month before they do withdraw, they really do. They don’t watch TV, but this is the time for them to write out their will if they don’t have one, hopefully they’ve got one before then, because they’ve got to have their affairs in order, so to speak. And if there’s a relationship that’s broken, they need to make amends for that, because that will also lead to a much more peaceful death than if something is over hanging out.
Diane Carbo: And people don’t really understand how important that is. I’m going to tell a story about when my dad was passing. He was in the last stages of his death and dying process and he had gone into a coma and we put a hospital bed in the living room. Now my brother had been away in Florida my youngest brother and my dad and him had a good relationship. So my dad was in a coma probably for 24 to 48 hours. And my brother, we told dad, Paul’s coming and my dad hung on. To be able to give him my brother and opportunity to say goodbye. I’m sure of it because after, within an hour, after Paul got there and, talked to my dad and spoke to him and we sat around as a family and my dad died and I’ll never forget that because I, gave my brother Paul so much comfort to know that dad waited for him. I can remember. I had , my hand on my dad’s chest. And at the end of life, you, your heart’s pounding so hard and the respirations are fewer and farther between. And I read his, he had a St. Joseph prayer card. He used to say every day, People have to understand that hearing is the last sense to go. So while my dad was actually crossing over so to speak I took his prayer card and I read his prayer out loud while I had my hand on his chest. And I felt his very last heartbeat. He was surrounded by, , his family, and he had a comfortable peaceful death. And I think it’s because we, first of all, I’m a nudge and we sent them off to Hawaii on hospice and everything so that he could do whatever he wanted to do. But I also see, and I know you’ve seen this too. Sometimes people die after the family has left.
Pat Deegan RN: They certainly do. No, they really do. I had a patient the daughter was going to take care of her and they did everything together. Everything, they were like two peas in a pod and. She was afraid that she wasn’t gonna be able to take care of her mother. So we went over everything, how to give her a bath, how to do all these things. And the mother really rallied there for a while. And then the daughter had a chance. Go away out of special weekends. So we all encouraged her to do that, including the patient. She said, no, go, I’ll be fine. I’ll be fine. But of course the mother died while the girl was away and she came back and she couldn’t forgive herself, all these things. We’re going to remind you. And I looked at her and I said, your mother chose her time to die so that you didn’t have to witness it. She just, she didn’t know what to say. It was like lightning had struck her and she came in. My office several years later with a friend and didn’t realize that I was the nurse that was going to be there and she recanted this whole thing. And she said, and afterwards, when I thought about her, she said, my mother always used to shield me from the worst parts of life. And she said she did it in the end.
Diane Carbo: God bless her. Yes. And that is such an important story that you shared because I have seen it, especially at the cancer center where patients they hang on and they hang on and the hang on and the family is vigilant about being there and they don’t want to leave. And it’s after that. Leave to go home and take a shower and get some rest that the family member chooses to die. And you just don’t know why, but you think that the family member chose when they were gone for a reason?
Pat Deegan RN: Absolutely. Absolutely.
Diane Carbo: They really do, because,
Pat Deegan RN: I just know, my husband did the same thing. He, everybody was stayed at the house and everything. And when they had all gone to work or going out to get something or anything, that’s what he peacefully went. So when they all came back home, which was only like maybe an hour later, I told him that he had passed. And again, they were not angry, but disappointed maybe that they couldn’t have been there. And I said no, that’s what your father was.
Diane Carbo: Yes. And people find comfort in that as well. That’s why it’s important to have those conversations early on and ongoing and work through the depression because eventually people have to accept that they’re dying. I’ll never forget this one. Young man. He was so handsome and the cancer treatment that he had left him bloated and unattractive to him, to his appearance and I’ll never forget. He was, he’s starting to actively die. They put them on hospice and was talking to his family and he goes, am I going to die? Looking like this?
Pat Deegan RN: Oh gosh,
Diane Carbo: I felt so bad. I had to say yes, and it was then that he accepted his state, that his death was inevitable. We didn’t even get a chance to send him home because once he accepted that date, he was young. He was in his thirties, late thirties. He died that night. And I think that he accepted that I’m done fighting. This is not working for me and he just gave up and, people don’t realize that When people do that, they do. It’s not a bad thing. People say, oh, keep fighting, keep what are you fighting for
Pat Deegan RN: more pain and more suffering? No, that’s no, that’s tough on the families. They won’t accept it. Do they? Oh, no. I want to be here. I want them to live and stuff, but they’re being very selfish.
Diane Carbo: Yes, it is.
Pat Deegan RN: In a hospital setting, everybody knows they’re understaffed. God knows they are. And they, most of the nurses, LPN or orderly, God forbid, even the doctors know so little about holistic medicine or hospice. I know we’re talking about hospice a lot, but it’s such a natural, justice, a natural state of life, unfortunately, and they don’t have the time. Just sit down and talk to them, nor do they recognize some of the symptoms at all, because it’s not taught in school.
Diane Carbo: Yes.
Pat Deegan RN: Never talked about hospice. I think they do now, but I’m not positive. Yes.
Diane Carbo: That’s what I want to talk about the process of dying, because people have to understand that when you have a progressive disease you may have a functional decline. If you have some sort of cancer or you’ve got an innocent indefinite, prolonged, or severe functional decline, like an Alzheimer’s disease or a stroke .Then you have heart problems and pulmonary problems like chronic obstructive pulmonary disease, where you have irregular, unpredictable and sudden exacerbations that decrease your functional abilities over time. And then of course there is the sudden death, which. Like the heart attack or as in my mom, the pulmonary embolism. So we can’t predict the timing of death, but we can tell you that, for some of these things, when you start to have a decline in your body, changes the inability to walk or breathe or whatever. That’s when you should start talking because you’ve got probably maybe a year to two years for Alzheimer’s and maybe more, but, there are things like now people are given the option, your heart’s not working. You’re having dizzy periods called syncope. Let’s put in a pacemaker. Or, let’s put a district relater in. Or let’s put a feeding tube in, and again, it comes down to, you have to know what you want because there comes a time when you have these conditions like cancer or Alzheimer’s or C O P D, or emphysema, where. The pacemaker you may want to have it turned off or the defibrillator turned off, you may not want to initiate a person, right? Yeah. Take active measures. So there are a lot of things that are going on. And I think that one of the things people need to do is, they have fears of death, they should have goals for the end of their lives, too. And I think the majority I know for me, it’s I’m not, I don’t have fear of death. I just don’t want to die in pain. Oh,
Pat Deegan RN: I think most people would certainly agree with you on that point.
Diane Carbo: Absolutely. Yes and a lot of people were afraid of dying alone and, I respect that. You know I have a really hard time with I, and I’ve told this story before about, there are people in nursing homes where they don’t put them on hospice soon enough and they die alone and that makes me feel sad.
Pat Deegan RN: Yes, it does. Yeah. Cause nobody should die alone. I know I’ve said that before on a couple of other of these podcasts. Absolutely. And I think a good death, if that’s such a thing, I think is living long enough to see your grandchildren. Let’s say my husband never saw his grandchildren. Right.
Diane Carbo: Hey, my mom never saw me. Got married, never saw my babies. Never saw me graduate from nursing school. Yes. We missed a lot of sharing with my mom.
Pat Deegan RN: Yes, she did. I think. There’s the phrase times the artists, especially with sudden deaths like the first Christmas or the first Thanksgiving or his first birth, the anniversaries of all, those are really tough for some people to get through and you have to acknowledge this and often some kind of compassion or some kind of outlet for them to express this, because I think that goes by the wayside too. People do not understand this too bad. Everybody can’t go through hospice once.
Diane Carbo: You know what? I think that everybody should be expected to volunteer as a hospice volunteer for a while just to see so that they don’t have the fear of death like they do. Another concern that many people have is the financial concerns of death and dying. And I’m not talking funeral planning or anything like that, but the health care costs and, people don’t understand that the healthcare costs have been steadily increasing and many spend their entire life savings to prolong the life of a loved one.
Pat Deegan RN: My brother-in-law died three weeks ago and he was never really admitted to the hospital. We’ll say he was in the emergency room. They did blood work and EKG and stuff like that, but never actually admitted to a room and my sister said, am I going to get charged for a room and all this stuff? I said, I don’t know. I said, you’re going to get it, emergency room charges. But if he never actually. Into the bed on the floor. You might not get that. She got the bill the next day. Now he was only so many hours, $64,000. I said to my sister, what did they do? She said nothing. Pap. They did blood work EKG, I think like that, but she said nothing else. $64,000. And he was never admitted except. But she didn’t have to pay much cause they had insurance, but still I’ve imagined it. Didn’t that’s a lot of money.
Diane Carbo: Occupational therapy, physical therapy, home care, all adds to the cost of financial concerns of keeping a family member alive and these co-pays are phenomenal nowadays, even just getting a blood transfusion is challenging. So I think that people need to have discussions with their doctors on many levels. There is a movement. It’s the death awareness movement that is has started up and, it’s based on Elizabeth Kubler, Ross is on death and dying book and it’s, again, they’re talking about the stages of desks and it’s because of her work, desk. As because of M because of the aging baby boomers, it’s a public issue now that we have it absolutely is. And it’s, death with dignity is a real issue for many people because more and more, especially Americans, they want to demand control over their medical treatment and again, it has to do with death has become such a complex issue, and I think that we need to have more discussions about death and people need to be expressed an interest in how they want to die.
Pat Deegan RN: The people have to take over their own decisions I want to do and not let the medical professionals sometimes say, oh, you need this and you just have to say, stand back and say, no, I’ve had enough. Let’s just go with palliative care from this point or something. And I think the more dialogue we have with the public, this will probably change.
Diane Carbo: It is because I know that the big fundamental questions is two people have the right to die, to time in a manner as their own choosing and with the lack of caregivers, the lack of healthcare coverage the , lack of pain management and Simpson treatment of symptoms. Now people are also looking at The right to die. I belong to a group called exit international and it supports it’s very fascinating. I’m learning about Switzerland has their depth with it, Dignitas and stuff. So people are choosing not to decline, they’re choosing to take life or death into their own hands and that is something that I think as we get older as the baby boomers age, We’re going to hear more and more of that. One of the coauthors of Obamacare or the ACA is ZQ Emmanuelle. He is an oncologist and a Harvard trained physician who feels that nobody should live after the age of 70.
Pat Deegan RN: Really, even though my normal age now has horizon consider replacing.
Diane Carbo: Oh yes. But his thoughts are that there’s no insurance coverage for, to prolong life and stuff. And I think we’re seeing that movement starting in with Medicare because they are covering less. People more financially responsible for the treatment that they want. So I think that is an underlying philosophy that will start to become more and more mainstream as we. It’ll get older.
Pat Deegan RN: I think it’ll take hold and not, you’ll see more and more countries or, whatever sanctioning, the will to die or to take it into their own hands. I know, right?
Diane Carbo: Yeah. And we do have right now. This country, we have a few states, but you have to be almost on your death bed. And there are many boomers that have dementia, and don’t want to put their families through that. They have deteriorating on neuromuscular diseases like Huntington’s or are Lou Gehrig’s and they don’t want to get to a point where they’re dependent on anybody. And at this point in time, that is not an option for people,
Pat Deegan RN: unfortunately, but hopefully that’ll change.
Diane Carbo: Yeah I’m hoping over time. Because there is, it’s something that people have to consider because we are in in an era where we don’t have the caregivers to take care of the aging population and the family members are, have a great burden, 90% of home health care. Unpaid caregivers is done by family members in this country. So there’s the intergenerational living is going to be back in swing in Vogue as you will, because the AGU family members are being cared for by their their children and their grandchildren. I thought that maybe we could, because of your hospice experience, pat, we would talk about the end of life signs and symptoms is you’re getting there closer and closer to death. It can come on quick or it can come on side. And my dad’s was over a period of months and he was on hospice. We did discuss the loss of appetite. They don’t want sued. No, they don’t want to drink. And people think, oh my God, they’re going to be dehydrated or whatever. No, it’s don’t eat when they’re hungry. It isn’t something to feel distressed about . That’s where, it comes in with, oh my God, I can’t, you’re not going to give them hydration.
You’re not going to give them a feeding tube or you want to stop feeding them. People don’t understand that the death and dying process, your body shuts down. And giving them these things, prolonged pain and suffering.
Pat Deegan RN: Yep. We could maybe do that the next time, because I can try to get it done to like months before, which I mentioned, loss of interest your conversation, but as it gets closer, but a lot of them. It depends on what the diagnosis is. They might change a little bit, but there are certain things that you can, the condition of the skin, they have urinary output and things like that.
Diane Carbo: Yes. You know what, let’s talk about that next week. Let’s put the signs of death, the end of life signs and symptoms to help family members, because I know one of the things that I’ve had with several of my caregivers is there was such a disappointment because they had lack of education of what they were observing and there’s good hospice companies and they’re bad. So let’s take, let’s do that next week, pat, we’ll do the signs of death, the end of life signs and symptoms. And that’ll help people get a feel for what they’re going through and what they can expect.
Pat Deegan RN: And I think too, we can just touch on that next week. And I think most people don’t think of these things. Are they religious aspects of it? Some of the religions don’t believe in autopsies or cremation or anything, but just touch that lightly, just so that they know that depending on what the religious affiliation is, what they need to know is acceptable and what isn’t.
Diane Carbo: You know what? That would be great. Let’s we’ll cover all that next week. Okay. To my caregiver, friends out there, I want to say, remember, you were the most important part of the caregiving equation without you. It all falls apart. So we’re going to be gentle with yourself. Practice self-care every day, because you were worth it, pat.
This was great. I thank you for your time and I look forward to next week. Okay. Bye. Thank you. Bye bye.
Conclusion:
As Diane Carbo and Pat Deegan delve into the sensitive topics of death, dying, and grief in this episode, they emphasize the significance of honest conversations, advanced planning, and taking control of one's end-of-life decisions. The discussion highlights the need for a more holistic and compassionate approach to dying, one that values quality of life over aggressive medical interventions. By exploring various aspects of the dying process and sharing their experiences, Diane and Pat offer valuable insights to caregivers, patients, and families, empowering them to navigate the challenges of death and dying with greater awareness and understanding.
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