Advanced planning is a process for setting goals and plans with respect to medical treatment. It is an evolving plan that changes over time. Today we are discussing the importance of medical directives and the different types and the importance of having ongoing conversations on end of life issues.
Diane Carbo: Hi, this is Diane carbo with caregiver relief. And today I have Pat Deegan with me. She’s a nurse and a podcast contributor and our end of life specialist. And today, Pat and I are going to talk about advanced directive. There’s so many questions people have about what is an advanced directive? What questions they should ? And what do all these questions mean? So Pat and I are going to give you the good, the bad and the ugly today. Thanks for joining me today.
Pat Deegan: Thank you for having me. And I want to say thank you for making sure that I got a copy of the five wishes that we’ve talked about in there. I think it’s makes things much simpler. It’s a much easier explanation of a lot of the things. I know you said we’re going to talk about power of attorney. I think natural death goes along with that. And there are so many questions. People don’t think about on a normal average day that you really have to be answered. I hope we can cover some of those today.
Diane Carbo: Whatever we don’t cover today, we’ll cover next week [00:01:00] in our next podcast.
Pat Deegan: There’s so much there so much.
Diane Carbo: And one of the things people need to do is they need to think about their healthcare wishes. And making it an advanced directive can and should be done at any age. The important thing is that you have an honest conversation with your loved .Ones and you explained to them what you want or don’t want. So Pat let’s talk about things like what does the five wishes cover? Let’s start with that.
Pat Deegan: That’s comes under like a desire for a natural death, which the five wishes brings up/ but they don’t really use that term. The person who’s making this, out has to be competent, of course. They’re voluntarily making this these decisions known to their physician and to their family and family members. If your condition is terminal you have Some questions that you definitely want to be answered and to be withheld. One of them is the artificial nutrition and hydration and the [00:02:00] natural death. It gives you two paragraphs, one that .You direct nutrition be provided or. It not be provided and you’ve checked which one you want. If you’re in a, let’s say a vegetative state, a coma after a stroke or something, and you’re permanently unconscious. That would be another condition where you would want to use advanced directives to be upheld. Again, it’s with the nutrition, it’s either to be provided or not be provided depending on your wishes. I think when it comes to a vegetative state, there are lots of things to remember., or to think about if you are in one and you’re in a hospital. I think we’ve talked about this before. They’ll insert surgically, a feeding tube into your abdomen so that you can be fed artificially, if you will. And this is something that you really have to talk about to your family. Because they may think this is great to help you get better. When indeed it is not . When the dying process really begins. If you force food on people because the organs are not functioning properly, it gives them a lot more pain than we thought before.
Diane Carbo: That brings up a really good point. What is life support to people? People think what is life support ? They have to understand that life support such as a ventilator or a feeding tube or hydration of any kind replaces a failing body functions. So there are times when a patient may have a curable or treatable condition and life support is used, until an illness or disease could be stabilized and the body can assume or resume a normal functioning of our systems. But there are times when the body’s never going to regain any ability to function without life support. So when you’re making a decision on very specific conditions of life support. You need to gather, facts to .Make informed decisions.
There are benefits to treatments and there are burdens to treatments .And people need to understand that a treatment can be beneficial. Number one, if it relieves suffering or it restores a function or enhances a quality of life, that’s really important. But the same treatment can be burdensome to somebody. Because it may cause pain or prolong their pain or prolong the dying process. And it doesn’t add any benefit to a person’s life. In fact, it diminishes their quality of life. So when a person decides to decline life, support or accept life support, it’s gotta be on a very deeply personal level. It’s important that you gather information about specific, you understand why the treatment is being offered and how it will benefit your care. So let’s talk about the different treatments. Let’s talk about the benefits , and burden of having a feeding tube. [00:05:00]
Pat Deegan: Okay. And I think a lot depends on if the patient is going to die at home or die in a nursing home, or if it’s, they’re going to stay in the hospital for a very short term. There’s a lot of care to a feeding tube. It has to be flushed after they eat. And as I said before, Depending on how much liquid they’re getting via the feeding tube can make the patient extremely uncomfortable. Then you have to worry about the digestive process, the elimination process, all these things. People just do not think about. All they’re thinking about is how can I make my loved one happy or feel better . And they’re not thinking of the total picture of what happens in the dying process.
Diane Carbo: Exactly
Pat Deegan: if they’re going to be placed in a nursing home because let’s face it with today, all the corporates think of the bottom line. They’re not going to keep someone in the hospital just to have a feeding tube. So then you’re sent to a nursing home. Now, the question is. How long do you want to be in a nursing home? Do you want to be a burden to your family? , I looked at it very cynically, because I’ve seen too much, [00:06:00] but that’s another question, but does this somebody want to be in a nursing home for six months, nine months or forever until they decide to pull the tube?
Diane Carbo: Yeah, one of the things people don’t understand is there may be some minor discomfort when they have this tube inserted. Your digestive system especially with feeding tubes causes, diarrhea so much. So many conditions and it causes skin breakdown and pressure and then you’ve got possible. Infection and skin irritation at the feeding tube site that occurs. Because when you’re in this debilitated state, people don’t understand that you’re already immune compromised. So even with the artificial nutrition, you’re still not up to par. . And people don’t understand that there’s a real high risk of aspiration. So a person has to think about they have to sit up .And they can’t be laying down when you’re having a feeding , because if they regurgitate [00:07:00] the stomach content, it gets sucked into the lungs. And then we have a definite increase in hospitalizations due to pneumonia.
Pat Deegan: Exactly. Very well said. Thank you, Diane. And then I think you’ve got to speak of the patient. Is this for, are they on oxygen and that’s another ball game. Now of course today they can have concentrators that the patient can walk around my house or getting a chair and the little concentrated goes along with them,. But just the oxygen alone. People worry about, because if there are smokers in the house,, they just can’t come in. It can’t be done. There’s a lot of things people have to think about that. They just don’t when you’re happy, living well and healthy. And these are the things I think we’re trying to promote ,. But I wanted to talk about harvesting organs. If you don’t mind.
Diane Carbo: I would love to hear about that. I think people need to hear about that.
Pat Deegan: I think so many people have donated say their eyes when they die. The motor vehicle, has a place on your license if you’re an organ donor. I think that’s been the accepted/ old , the eyes are fine. But when someone comes into an emergency room, with a fatal injury. It is so difficult if there isn’t anything. Or they might have said be an organ donor. I had the privilege when I worked. At the trauma hospital of being involved with harvesting organs through a national . It is so sad because you don’t want to approach the family because they are already in such chaos themselves because of this terrible tragedy. But. I think there’s so many misconceptions about. How the hospital was going to treat the body. Because the patient in all intents and purposes has died. And I just need to reassure people that is done with the most dignity. It is just like somebody going to the OR to have an appendix out. Or what have you, except that we’re taking the eyes. If that’s what it was. If they said, everything that can be used: the lungs, the kidneys the body is restorative, just like it would be if it had surgery. And it could have an open casket. There is no way that anybody would the organs had been donated unless the family said so. I think a lot of people [00:09:00] think that, oh, we just don’t care. The patient’s dead and we’ll do it, but that’s not the way it is.
Diane Carbo: And that’s a good point , if you still have something that is working and it could benefit somebody else ,that’s a very positive thing. It’s a way of keeping the memory of your loved one alive by helping somebody else and I think that’s a .Really a great point to make.
Pat Deegan: I watch television at least . Once a year, you’ll see somebody that’s going to meet the person that got the other person’s heart. And they feel the heart and it’s so good for them because they feel part of him is still alive. Those are the good benefits.
Diane Carbo: Yeah, . Now let’s talk about putting a person on a ventilator. You have to really consider, do you put a person on a ventilator? Or do you not put them on a ventilator? And what are the ramifications of that for the family? I have to tell you I did rehab nursing. And we had a lot of young people put on ventilators. It’s a difficult thing to do. So let’s talk about that a little bit, Pat. You and I both have seen the good, bad and ugly about that as well.
Pat Deegan: Yeah, we certainly have. I think just with recent things, with the COVID the amount of people that were put on ventilators . They were elderly or they had significant other conditions, not just the COVID generally speaking. And there are exceptions to every rule. Somebody fell say post-operative after heavy surgery might be put on a vent, but it’s very short term, like maybe one or two days to give the body and the lungs and everything, a chance. And then they start to wean the person off.. This is a good time if that they might that ventilate. Just so that he has enough oxygen so that the brain can still function. Taking them off might take a day or something and then, nothing happens. The patient starts to breathe on his own. That’s one place where an intubation would be good. In the emergency room, we used to see them. We weren’t sure what was wrong with them. When they came in and it was just massive, they would intubate them because they couldn’t breathe on their own.
Diane Carbo: I cannot tell you how many people I have seen in their eighties and nineties that have been on mechanical ventilation. It just really breaks my heart to see it. Usually it’s irreversible respiratory failure because of an injury to the spinal cord or maybe a progressive neurological disease. I have seen people that had long-term mechanical ventilation and they do have some quality of life. But for the the dying patient, mechanical ventilation, often just extends the dying process.
Pat Deegan: And it’s very irritating. It irritates, the wind pipes , if they we’ll say semi alert. They can’t really talk on a ventilator. It’s very difficult for them. They really struggle. They really do. And families for some reason, choose not to recognize this. Because the person is alive. Eventually they realize, that it really is something that is just keeping them alive and that’s all and if they just let him go, he’s a lot more comfortable.
Diane Carbo: There are some family members and I see this on Facebook all the time. Pat, there’s actually groups where hospice killed my family member . People don’t understand that mechanical ventilation or even feeding tubes can prolong pain . I have seen family members just not be able to let go. They just are not able to let. There are skilled nursing units that are nothing but patients on ventilators.
Pat Deegan: Yes.
Diane Carbo: It’s hard because you can keep somebody at home with the ventilator. But it’s a lot of work and you have to worry about so many things like 24 hour care. Turning them every two or three hours, because if they’re on a ventilator most likely they’re not able to do that themselves. Then you have the problem of a skincare [00:13:00] and break down. The thing with the ventilator is it doesn’t improve the underlying condition. It just to supply oxygen to the body. I think at the time like this, some people just have to be able to make sure they discussed, if I can’t breathe on my own or I can’t eat on my own, I can’t return to a quality of life, that’s acceptable to me, please. Don’t extend my life.
Pat Deegan: Yeah. That’s so true because again, like you said earlier, The people that are being selfish because they don’t want to lose them .And they haven’t had the time sometimes to accept the fact that their parent or loved one is in the process of dying. So do everything that you can to help them. But you’re not helping them really,. It just making prolong the difficulty for them. The other thing is if you’re running a ventilator, what did you lose electricity now? Unless you’ve got a outside a generator , generally at least years ago, the DME companies that would be on their [00:14:00] list. If the power went out who had, a respirator or an oxygen or something, at home, and that would be the first place they’d go. But not everybody has a backup.
Diane Carbo: Look at what happened at the hospitals during Katrina in new Orleans. They had no electricity and they were hand bagging the people trying to keep them alive. And it just breaks your heart , to know that people are struggling. This is why it’s so important to have early and often discussions about end of life issues. Again, I’m telling people, what you want at 20 is not what you want it. 30, 40, 50 or sixty. Your thoughts and feelings about things changed. So it’s important that people realize that, you can put in an advanced directive in place. But, I think it’s important to revisit it and revisit it. Often.. At least yearly, but if you’re a person that procrastinates. At [00:15:00] least every 10 years. When you change a decade, from 20 to 30 to 40, because as you age, You start to experience different health issues. Chronic illnesses you’re diagnosed with cancer or breathing problems like C O P D , heart problems. Here’s a perfect example. People that have pacemakers ?Or defibrillators they have to make that decision. When do they want it to be turned off? Because do they want to be zapped?
We talked about one previous podcasts about the DNI. Do not intubate. People have a hard time. Family members have a hard time. What do you mean we’re going to turn the pacemaker off? Or the defibrillator off ?It’s do you want that person’s heart to continue? I’ve seen people say, , if a time comes, I want do not intubate order. Because I don’t want my life sustained. If my [00:16:00] heart’s not working. And it’s only by artificial means that , I’m staying alive, then please don’t intubate me.
Pat Deegan: Yeah. I think people tend to forget it’s the quality of life that’s left, not the quantity. And I, I think over and over again, if someone doesn’t want to be hooked up to something, and they’re restricted in all their daily activities, to them that might not be living. And they were just as soon be gone.. Cause there’s no quality of doing the things that they want to do or capable of doing.
Diane Carbo: Exactly. A perfect example is kidney dialysis is of life support treatment. And it uses special machines. And, some people. Think that dialysis is a cure for kidney failure. It’s definitely is not if your kidneys stopped working and there’s no chance for them to return, you cannot live without one. Decide if kidney dialysis is something that you want. Now that the thing with kidney dialysis is such a commitment of time. It’s three or four days a week of sitting four to eight hours. Every week. And for many people, the benefits of that dialysis and the quality of life they experience as a result, outweighs the burden. But for some, for me, I would be like, no way, Jose, I don’t want this . I don’t want to be in the hospital all the time. I don’t want life-sustaining treatment like that.
Pat Deegan: People will do maybe for the most, maybe one or two years, but then they just get to the point where it really is just too much for them. Now they’re doing dialysis at home. Now I’m certain patients. But again, that’s like the caregiver out of their whole day to watch this and keep an eye on it. And it’s, you’re just prone to so many complications. Infection or what have you.
Diane Carbo: Exactly. And you know what, the other thing people don’t realize when they go on dialysis is they may have to have a very strict fluid intake. And there are very strict diet . [00:18:00] And they can’t cheat. They really can’t because they’ll get ill so .People get tired of that. When I want a good drink, I want a good drink. And to know that all I can have is like 4, 6, 8 ounces of fluid in one day is really hard. For some people, it would be terribly hard for me. I’m a big drinker, I would have a hard time with dialysis. Again, if you have kidney failure and it’s for short term, that’s fine. But again, it’s a discussion. If it’s going to be long-term that you have to have. With your family members, unless you know it , cause you cannot live without a kidney and unless you get a kidney transplant and as you get older, you don’t qualify for kidney transplant.
Pat Deegan: That’s right. And I don’t think people realize that and it’s a commitment. The family, especially if they’re done at home as a husband or their wife, there has to be just as committed. And all our lives, we’ve been taught to drink eight glasses of water a day, every day eight. And now all of a sudden no, you can’t have that anymore. And a [00:19:00] lot of times, whether it’s because they know they can’t, these people are constantly. thirsty .,Always craving. So yeah, you stay away from anything salty. You’d like, if they like, potato chips, oh, sorry. You can’t have that ham, all these restrictions and nobody thinks of, oh, generally when you’re making a decision like that.
Diane Carbo: Exactly. And that’s the other thing, except with the feeding tube. I’ve said before, I’ve seen so many people say to me, oh my gosh. If I had known that I wasn’t going to be able to eat, I wouldn’t have done this. Once it walking and talking Because, not to be able to eat ever again is very difficult for some people. I know for me, I love to eat. It is one of the pleasures with life. It is. And I’ve had so many seniors all they want is a little bit ice cream. I always giggle at the family members at the nursing homes when somebody celebrating their 98th birthday or a hundredth birthday. And the family says, oh, you [00:20:00] can’t eat your birthday cake until you eat some dinner first. At that age, I’m like, first of all, I’m saying. , I’m going to have dessert first
Pat Deegan: it’s really funny because my husband used to hide all the sweets when I was working. Come home and I’d wonder, where did all this go? But he’d always say, oh, not me, but he’d hide them. He’d be walking back and he’d be hide them in his pocket or something. I always do that.
Diane Carbo: He was a severe diabetic.
Pat Deegan: Yeah. But he just could not help himself. That’s what he wants.
Diane Carbo: Yeah. And, and the thing is at a certain age, it comes to quality of life versus quantity. And if people want to severely restrict their diet, .That’s up to them. But again, it’s a conversation that you have to have. Was everybody. Your family members, your healthcare providers, your specialists . These are conversations that you need. We’ve talked about the life support and common life support things , we’re talking about the living will and advanced directors. I would like to touch base on what a POLST ? . The physician ordered life-sustaining treatment.
I’m just going to mention that a POLST is a portable medical order. It means that it’s something that you carry around with you that is valid outside a doctor’s office or clinic. And it’s like similar to a drug prescription. It’s a process as part of advanced care planning. It’s something else that , you have to have a conversation. But that is something we’re going to definitely cover at another time. I will say that we will be discussing the importance of end of life curative versus palliative care and hospice in the future. I think those are issues that we’re going to need to discuss. But again I just want to reiterate to everybody that I hope we help you answer the difficult questions. And that you’ll check out caregiver Relief’s website to learn how to make choices in regards to hydration, nutrition, and breathing for those advanced directives as you age.
Pat, I’m going to end today with saying thank you very much for being here. To my caregivers, remember you are the most important part of the caregiving equation without you, it all falls apart. Please practice self-care every day. Be gentle with yourself. Because you are worth it.