Beyond Today Interview
End of Life Planning - Part 1
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Beyond Today Interview: End of Life Planning - Part 1
Darris McNeely talks with Andi Chapman, a registered nurse with many years of experience in end-of-life care. In Part 1, they discuss what everyone should know about preparing for this process, and how to help those facing it now.
[Darris McNeely] Welcome to Beyond Today Interviews. My guest on this program is Andi Chapman. Andi is a nurse, a registered nurse, and she has a great deal of experience in dealing with people in hospice care, palliative care. I heard you, Andi, talk to a group of people earlier this year on this topic. Welcome to Beyond Today Interviews.
[Andi Chapman] Thank you.
[Darris] I think all of us recognize that being a nurse requires special qualities and...but in the field that you're dealing with, I would think that they're highly specialized. Could you explain some of the unique qualities that would be needed for someone in the specialty that you have?
[Andi] I think that the very first thing that you have to have is an extraordinary amount of compassion. And you have to be flexible because you have to meet people where they are. Just because someone has been given a diagnosis of a terminal disease doesn't mean that they're ready to die, and it doesn't mean they're ready to talk about it. So, you deal with the anger, you deal with all of the various emotions that go along with that. And you have to be very patient. You also have to be very flexible because you have to meet them where they are, not just emotionally but spiritually as well because they all have various different beliefs. And so, you can't be biased in that. And I think that's one of the big things.
[Darris] Is it hard for you to stay neutral, coming at it from your point of view, with people?
[Andi] No, not really because we understand as we grow, our knowledge base grows and, you know, we are a product of a lot of times what we grew up learning. So, culturally or society, you know, that's how we grew. You just meet people where they are.
[Darris] You've mentioned about three times meeting people where they are. Explain that and maybe some examples of people that you have met where they are.
[Andi] Oh, okay. It is very interesting because when we deal with the hospice, particularly, it's not just the person that's in the bed. We deal with that entire family group. So, when I say where they are, it might not be the patient at all that we're going where they are. It might be a family member. I had a patient who had passed away and the family member would not let me do any post-mortem care or call anybody because they were going to resurrect her. That was their belief. I've had other people who believed that if they had the body removed too soon after their death that their spirit would be locked in the house forever. So, we had to be cognizant of that and wait until somebody told us that they were ready. But there are people, too, that embrace the end of life and they'll talk very openly about what they expect, but they don't talk so much about what they expect after life.
It's what they're leaving behind for their family. And that's really where their concerns are. I have not met anybody who was really fearful other than one person. And that was really sad because she believed that there was a spirit that was going to take her to a very bad place. So, it's a lack of understanding. All of the different faiths, all the different beliefs and you have to be very patient and deal with these and be willing to listen to them.
[Darris] I'll bet you have probably had a graduate-level course in comparative religion.
[Andi] Oh, yeah.
[Darris] With all of the people that you have dealt with, with those different ideas through the years. That's amazing to consider having to deal with that almost in the moment because probably you don't even know how they're going to react. And when these things happen, then you have to adapt at the most critical moment in a person and family's life.
[Andi] You are flat-footed sometimes and you have to meet them where they are. You have to just not be judgmental and remember that you're there to make a difference in their life, to help them through something that they can't control. And a lot of times they want to control it and they can't.
[Darris] What is it that we can control when it comes to this time of life?
[Andi] I think that we can control what we leave behind for a lot of our families. And that is something that we, unfortunately, don't control because we don't want to talk about it. You know, in Hebrews it says that man's appointed once to die. And as you mentioned in one of your sermons, you know, we have eternity in our hearts, so man is made for that. And so, we naturally don't want to discuss the end of something, but it happens. Your goldfish will die, your dog will die, your grandma will die. But we don't want to talk about any of that kind of thing. And we certainly don't want to face our own. So, when somebody is diagnosed with a terminal disease where they are emotionally...will definitely impact how they accept that. So, you're going to have a lot of anger, perhaps, a lot of uncertainty. But it's definitely what we leave behind for our families that we don't prepare for. And we're great at preparing for vacations. We look at the weather, what it's going to do potentially. We plan out our wardrobe and how many times we're going to go here or go there. We really plan things out. We are looking forward to the Thanksgiving holiday coming and, you know, I'm already making preparations for that.
But as we age, we're not making plans for what we're going to leave for our families and what they need to know about how to care for us at the end of life, especially when we can't speak for ourselves.
[Darris] I can see that. I can understand that. And having dealt with that in recent months in my own family, sometimes even the best-laid plans don't always come out the way you think they're going to, things happen and interesting things happen at that particular point. Let's go back. You deal with as a registered nurse and they...it's hospice care and what you called palliative care. And so, I wonder if we could explore that just for a few minutes for everybody's benefit. First of all, what is hospice care?
[Andi] Okay. Hospice care is essentially palliative care. The word "palliative" means comfort. And that's what hospice is, is comfort management. And we look at the mind, body, and spirit in this situation. For someone to go on hospice services, they would have a terminal diagnosis where the doctor says it wouldn't be a big surprise if, in six months or less, this person was no longer living with us. They're not going to have curative treatments because those curative treatments probably haven't worked. And so, they've resigned themselves that, "This is the end of my life, this is how I want it to go." Hospice will come in, depending on what that patient needs, they're going to come in several times a week. They get a full staff that comes in there and helps them, and then, that takes care of all of their medications, their medical equipment, basically all of their needs and up to the time of death. And then we take care of the family after that.
[Darris] When does a person or family make the decision that hospice is needed? Are there signs, indicators?
[Andi] Yes. Usually, when a person has been in and out of the hospital quite a little bit, they're declining to the point where quality of life is just no longer there no matter what they do. Perhaps the person is declining mentally and they're physically, they're going down as a result of that. So, it's not really a terminal disease as much as it is like Alzheimer's or something like that. Many times the person who's dying will embrace that and they're better with that than some of the families. And sometimes families look at it and they realize that there is no quality of life. There is no meaning for them and they just see suffering.
And so, they'll oftentimes look at hospice, but they always call it the last resort. And it's really not the last resort. It's, yes, it is the last, final thing, but it is something that is so beneficial, not only for the patient and the family, but it's generally because of the decline in the patient. And medical technology is just not doing it anymore. You know, we can keep people alive for a long time but not give quality of life.
[Darris] So, hospice really gets into more of a personalized, hands-on experience from your perspective as a nurse?
[Andi] Absolutely. Yeah.
[Darris] That's a key difference. How is hospice paid for? Insurance cover it? Medicare cover that? How's it paid for?
[Andi] Yes. Medicare covers 100% of hospice services. And that would include all of the team that comes in, the medical equipment, the medications for the disease process. And in some instances, some hospices have a cancer program. And so they'll even pay for several chemotherapy sessions after the person comes on hospice, which is something that they didn't do before. So, you know, it's about helping them come to terms with everything, but we never send a bill to that family ever. So, insurances pay for it. We have programs where people, philanthropy will do it. If somebody doesn't have Medicaid, Medicare or some other insurance, we'll go ahead and just take that case and take care of them. And again, there's no charge for it.
[Darris] That is wonderful. Again, I've not had to deal with that. And that's a natural question that I have, which I think a lot of people have as well. The costs and all. So, you mentioned that palliative is similar, but what distinctions might there be in this idea of palliative care?
[Andi] Okay. Well, with hospice care, you're stopping curative measures. You've got a terminal disease...
[Darris] So, you'll be stopping like chemotherapy...
[Darris] ...or radiation and things like that. All right.
[Andi] With palliative care, these individuals are maintaining their curative treatments, the chemotherapy, the renal treatments, dialysis, etc. And there may be having some side effects from that. And so, they need additional care. This is where palliative comes in. So, they'll have a nurse that will come and visit with them and help them through the pain, the nausea, the vomiting, whatever it is that is bothering them. They take care of the side effects that are from the disease or from the treatments. And it's generally short-term where hospice, you have six months or less, but we don't kick you out the door when you hit that sixth month.
[Darris] Six months in's up? Okay.
[Andi] Yeah. So, every two months, we would look at your case and see if you meet the criteria because we have very strict criteria for Medicare.
With palliative care, the assumption is that if you have treatments that are causing some side effects and you need some care, it's short-term, it's more six or eight weeks. That's what it is designed for. The other big difference is that it's insurance-dependent. So, with hospice, insurance covers everything. You don't get a bill. With palliative care, if you have a deductible, you still have a deductible. The other thing with hospice, if you have an emergency in the middle of the night, the nurse comes to you. If you're on palliative care and you have a problem in the middle of the night, you go to the hospital. So, it's a little bit more specialized with hospice care that they're going to be taken care of right there as opposed to palliative care where you're still going to the hospital, you're still going to the doctor and you're still paying some bills.
[Darris] Is there indicators when you would switch from palliative to hospice?
[Andi] And that's a real gray area. What we see is that a lot of times people don't want to talk about hospice, but they'll talk very easily about palliative care. And I had a nurse that, just recently I was doing a presentation. I do a presentation called Hospice Versus Palliative Care. And I do that for medical professionals, but it's very interesting because a palliative care nurse came up to me and she said, you know, "People don't realize that we're not even talking about palliative care often or soon enough. And so, our people are coming into palliative care very, very ill when they should have been talking about hospice care instead of palliative care." So, they get onto palliative care and then within a few days, they transfer over to hospice. And it is very frustrating.
[Darris] You know, when I hear a person is on hospice, I tend to think then it's near the end. And I wonder if that is a reason people may delay switching over. Do you think that that might be a factor?
[Andi] Oh, yeah, definitely. You know, there are certain words we're afraid of and the H-word is one of them. So, and I love it because every time I go out and I've got my badge on, they go, "Oh, you're a nurse, where do you work?" And I say, "Well, I'm a hospice nurse." And they go, "Oh." You know, it is just sad. And I appreciate the fact that they understand that it is a hard job sometimes. Emotionally, it's very hard.
[Darris] When should a family, let's say a caregiver, husband or wife or children, know when to approach these issues with their loved one?
[Andi] So, when you see your loved one having a lot of difficulty and you're having difficulty getting into that conversation, it might be easier to personalize it for you. And that would be to say, "You know, mom, I know you're having a lot more problems with your vision and, you know, I was just wondering what do you want us to do if your vision goes completely?" And, you know, that's just vision. We're talking about health here and dying, of course. But you can use that same concept to break into those conversations. And I think that it has to be a meeting of what the family and the patient, they have to have that conversation. But it has to be sooner rather than later. Maybe at the time of diagnosis. You know, if you've been diagnosed with something and you go and you tell your family, "Well, you know, I've been diagnosed with cancer," that's the big one that people don't like to hear. But, "I've been diagnosed with cancer." "Well, okay, what are we going to do?" Well, then you find out what their goals are in helping your family come to terms with it and you come to terms with it. But if you don't have those discussions, you don't know. Does somebody want to continue treatment?
Do they want to end treatment and just live with a quality of life for the lifetime that they have? But generally we see our people, our loved ones start to decline. And it's when we're not having those conversations, we see it happening and we keep going to the doctor. And we keep going to the hospital, but we're not talking about what's going on. We need to have that conversation. But it's usually when we start seeing all of the medical bills pile up and the treatments being given that aren't being beneficial.
[Darris] Well, let's talk about that conversation, again, from the point of view of the family. Should they include the one who is ill? Sometimes people whisper around the corner of the rooms and they go to the bedroom or whatever, and the one who's sick knows what's going on. And they begin to imagine all kinds of scenarios that are taking place, "Well, they're going to take all my money," "They're going to put me in a place I don't want to be and lock me up," or whatever. So, how should a family deal with their mother, their dad, directly, indirectly? How do you recommend that that be done?
[Andi] Well, I know when I approach a family and, you know, the doctor has said, 'We need to talk about hospice services." And so, I go in and my first clue is when the family says, "Don't mention the word 'hospice' in front of mom or dad."
[Darris] So you already know how they've been handling it, right?
[Andi] Oh, yeah. They aren't talking about anything. And then sometimes they'll even say, "Well, could you just take off your badge?" And the first thing that I have to know is, "How does your mom or your dad handle bad news? Do you think that they don't know?" So, I'll have a private conversation with the family and find out where they are because oftentimes, it's them trying to protect their loved one without realizing that their loved one does already know but they're just not communicating.
[Darris] How important is hope at a time like this?
[Andi] I think hope is very important. We never give up hope. And I think when you give up hope, then you see a very depressed person. And truthfully, a depressed person doesn't die well. They don't die well emotionally. They don't die well spiritually either. And we see also that same thing go with the families. I think hope is important, but I also believe that giving false hope is like fake news. It is not good because when you have false hope, you have these people who continue to take the treatments and continue to go on and on and on and, you know, are...
[Darris] So, that would be what they would have hope for, that those treatments are going to cure them, somehow turn it miraculously around.
[Andi] Right. And this is where I get frustrated because when we have certain conditions, health conditions, and we're not talking about what actually happens. I mean, you know, I've talked before about the fact that we can't cure kidney disease. We can't cure heart disease, diabetes, none of these things can we cure. But we can treat them, and we can treat them for a very, very, very long time. But sometimes those treatments can actually cause greater problems. I would love to see right from the very beginning to have a conversation that starts with the doctor and the family, that you have this disease process. And we know that we can do a lot of treatments, but there may come a time when the treatments are no longer going to be effective, but it's different for each person. So, you're not taking away their hope, but you're letting them know that there's some realistic things that could happen.
[Darris] You said earlier that we can treat these diseases, we can't cure them. But in the treatment that prolongs a life, has it set up a unreal expectation of hope or reality for people to where that it's not going to happen, pushes that day of reckoning further away?
[Andi] If they think that they're going to be cured, they're going to push some of these goals farther away for a longer period of time. You know, we've all gone to, "Someday, I'll..." You know, "Someday, I'll do this," "Someday I'll do that." And if you're thinking that this is not going to be a big problem here, you're not going to deal with some of the realities that you're going to leave your families with.
[Darris] You know, "Someday, I'll," I think, is a good place to end our conversation in this segment, this episode, because in segment two, what we want to talk about are those legal directives that we need to take care of but we push off because, "We'll do it. We'll do that someday." And that's all part of this process of living well to the time when we do die. So, we'll come back and we'll talk about that next time. You're going to want to see the second segment of this interview with Andi Chapman, a registered nurse working in hospice care, her thoughts, experiences, and advice on living, on dying, and on death. Thanks for joining us on Beyond Today Interviews.